>> GOOD MORNING, EVERYBODY I THINK WE'RE ABOUT READY TO GET STARTED. I HAVE A COUPLE OF LITTLE ANNOUNCEMENTS. WHENEVER ANY OF YOU ARE SPEAKING TO THE SPEAKER, HAVE QUESTIONS, PLEASE BE SURE TO USE THE MICROPHONES HERE OR WE'LL HAVE PEOPLE WITH LAVALIERS GOING AROUND, IT'S BEING WEBCAST AND PEOPLE IN THE AUDIENCE CAN'T HEAR YOUR QUESTIONS IF YOU DON'T USE ONE OF THE MICROPHONES. I'M SURE YOU FOUND THE RESTROOMS ARE DOWN THE HALL TO THE RIGHT. UNFORTUNATELY WE'RE NOT PERMITTED TO HAVE ANY REFRESHMENTS BUT SURE YOU HAVE ALL FOUND THE CAFETERIA NOW. THERE'Srt ALSO A LITTLE PLACE UPSTAIRS OUTSIDE THE CAFETERIA WHERE YOU CAN GET GOODIES AND COFFEE AND SO FORTH. THAT'S SUPPOSED TO STAY OPEN UNTIL 4:30 THIS AFTERNOON. SO GOOD LUCK. HAVE FUN. KATHY. >> WELCOME, EVERYBODY. WE WANTED TO GET STARTED RIGHT ON TIME THIS MORNING BECAUSE WE HAVE A VERY FULL AGENDA. DOES THIS MICROPHONE -- FIRST SPEAKER IS BOB CROYLE, HE'LL TALK A LITTLE BIT ABOUT SURVEILLANCE LEADERSHIP AND GIVE AN UPDATE. >> GOOD MORNING, EVERYONE. SO I'LL BE BRIEF BECAUSE WE HAVE ITEMS IN THE FIRST SECTION ON YOUR AGENDA. I WANTED TO MENTION -- MAKE A COUPLE OF UPDATES AND SOME OF THESE YOU HAVE BEEN FOLLOWING ALREADY IN THE NEWS SO THEY WON'T BE NEW. OBVIOUSLY WE'RE UNDER A CONTINUING RESOLUTION. WE HAVE A CONTINUING RESOLUTION TO OPERATE, BE FUNDED FOR THE FIRST SIX MONTHS OF THE FISCAL YEAR AND WE ASSUME AND PRESUME AND HOPE BEFORE THE FISCAL CLIFF JANUARY 1st THAT CONGRESS WILL COME TO SOME SORT OF AGREEMENT SO WE CAN FUNCTION, THAT WOULD BE NICE. BUT I THINK EVERYBODY -- AT LEAST HOW THINGS STARTED OFF IN CONGRESS LOOKS PROMISING I WOULD SAY, AN AGREEMENT OF SOME SORT WILL BE REACHED. UNDER THE CONTINUING RESOLUTION THE WAY THE WHITE HOUSE ALLOCATING OUR APPROPRIATION IS UNDER THE ASSUMPTION WE ONLY NEED AS MUCH MONEY AS WE NEED FOR THE FIRST SIX MONTHS OF LAST YEAR WE HAVE BEEN APPROPRIATED A THIRD OF OUR BUDGET. SO SIX MONTHS INTO LAST FISCAL YEAR WE SPENT DOWN 38, 39% OF OUR PRE-YEAR BUDGET SO SAME THING THIS YEAR. WE GET A LUMP SUM AT N WE SPEND IT DOWN MONTHLY, AND PRESUME EVERYTHING SHAKES OUT IN CONGRESS. OUR BUDGET WILL BE SOMETHING FLAT, A LITTLE ABOVE OR A LITTLE BELOW FLAT IN TERMS OF N APPROPRIATION. IT'S STILL EARLY TO GET FINAL GUESSTIMATES HOW IT WILL PLAY OUT. SO OBVIOUSLY THIS IS A MUCH LARGER AND COMPLICATED CONTEXT BUT HOPEFULLY WE'LL MAKE SOME PROGRESS NEXT COUPLE OF MONTHS BEFORE THE END OF THE CALENDAR YEAR. ALSO I WANT TO MENTION TO, AS YOU'RE AWARE WE HAVE BEEN UNDERGOING A SEARCH PROCESS FOR ASSOCIATE DIRECTOR FOR SURVEILLANCE RESEARCH PROGRAM. WE HAVE A LOAD CANDIDATE AND SOME OF YOU HAVE BEEN INVOLVED IN SOME OF THESE DISCUSSIONS SO YOU'RE AWARE, SO WE CAN'T MAKE A FORMAL ANNOUNCEMENT AT THIS POINT OTHER THAN TO SAY WE HAVE A CLEAR LEAD CANDIDATE WHO WILL BE TRANSITIONING TO THE ROLE. WITH ADDITIONAL MEETINGS YESTERDAY, ET CETERA. SO NOTHING IS FINAL AND OFFICIAL YET BUT WE'RE VERY CLOSE. KATHY, MEANTIME KATHY CRONIN AGREED TO SERVE AS ACTING ASSOCIATE DIRECTOR FOR SURVEILLANCE AT N. SO THAT CONTINUES TO THE END OF THE -- TO HER COMMITMENT TO HER GIG ON THAT WILL BE THROUGH THE END OF THIS YEAR. AND STARTING IN JANUARY ROCKY FORIER WILL BE ACTING DIRECTOR FOR SURVEILLANCE RESEARCH PROGRAM UNTIL WE MAKE THE FULL TRANSITION TO PERMANENT NEW LEADERSHIP. THEN IN THE INTERIM AS SOME OF YOU HAVE BEEN SWOOPED ON ALSO DURING THIS PERIOD, THERE'S ISSUES ABOUT REGISTRIES, POLICIES AND DATA AND QUALITY AND ALL THE ISSUES YOU'RE FAMILIAR WITH BECAUSE THERE'S A NUMBER OF THOSE ISSUES OVER THE NEXT SEVERAL MONTHS DURING THIS TRANSITION WE WANT TO MAKE SURE WE HAVE A FULL COMPLIMENT OF ENGAGEMENT AND EXPERTISE AND INPUT FROM PIs SO WE HAVE ALREADY TALKED TO A COUPLE OF YOU ABOUT HELPING OUT WITH SOME PROJECTS OVER THAT PERIOD AS WELL. IN TERMS OF N AS A WHOLE, NO MAJOR CHANGES EXPECTED. SO HAROLD VARMUS PLANS TO STAY AROUND IF THE PRESIDENT WILL HAVE HIM, SAME FOR FRANCIS COLLINS, SECRETARY SEBELIUS AND ASSISTANT SECRETARY HOWARD COH. SO AS I MENTIONED LAST TIME WE HAVE HAD A REALLY OUTSTANDING POSITIVE WORKING RELATIONSHIP WITH THE DEPARTMENT THIS LAST FEW YEARS IN THIS ADMINISTRATION. A LOT OF FOLKS WITH RELEVANT EXPERTISE, WHO UNDERSTAND PUBLIC HEALTH, UNDERSTAND THE RELATIONSHIP BETWEEN RESEARCH AND PRACTICE AN PUBLIC HEALTH POLICY SO THE ENVIRONMENT OF THE CONTEXT WITHIN THE WORK IN TERMS OF HAVING INDIVIDUALS AT EVERY LAYER OF THE ORGANIZATION UP TO THE SECRETARY'S OFFICE, WHO UNDERSTAND WHAT WE DO, UNDERSTAND THE IMPORTANCE OF PUBLIC HEALTH INFRASTRUCTURE, SURVEILLANCE,md INCLUDING REGISTRIES, SO WE DON'T HAVE TO START ALL OVER FROM SCRATCH THAT'S A RELIEF. SO WE HAVE A LOT OF FOLKS IN HHS AND OF COURSE OUR COLLEAGUES ALL RELEVANT AGENCIES IN THE DEPARTMENT WITH EXPERIENCE EXPERTISE AND SUPPORT WHAT WE DO. SO AS Y'ALL KNOW, PUBLIC HEALTH RESEARCH BUT ALSO PUBLIC HEALTH INFRASTRUCTURE OFTENTIMES MANY ADMINISTRATIONS GET SHORT ATTENTION, SHORT SHIFT BUT I HAVE NEVER SEEN DEPARTMENT LEADERSHIP GROUP LIKE THIS ONE THAT WE HAVE NOW THAT'S BEEN SO SUBSTANTIVELY ENGAGED IN THE ISSUE OF PUBLIC HEALTH INFRASTRUCTURE MONITORING SURVEILLANCE NOT ONLY FROM SURVEY END REGISTRY END AND ACROSS ISSUES AND FOLKS REALLY UNDERSTAND THEY GET IT, UNDERSTAND THE VALUE WHICH IS GREAT. WE HAVE BEEN HAVING A LOT OF DISCUSSIONS ACROSS THE AGENCIES ON ISSUES OF HEALTH IT, MEANINGFUL USE, CERTAINLY THE OFFICE OF NATIONAL COORDINATOR WILL PUT OUT A CALL FOR INPUT ON PHASE 3 MEANINGFUL USE. WE WANT TO GET RESEARCH COMMUNITY TO MAKE SURE THAT FOLKS RESPOND WHEN THESE?y¨ CALLS COME OUT. SO IF YOU'RE NOT ON THE LIST SERVE FOR HEALTH IT MAKE SURE YOU DO SO. WE'RE ON PHASE 2 OF MEANINGFUL USE, QUITE A STRUGGLE TO GET MEMBERS OF THE RESEARCH COMMUNE TOY PARTICIPATE AND PROVIDE INPUT SO WE HAVE HAD SOME RECENT MEETINGS WITH FARZAD THAT HAD OFFICE OF NATIONAL COORDINATOR BETWEEN NIH AND HIS GROUP AND WITH CMS AND OTHERS AND WE'RE CONTINUING TO FOCUS ON STRENGTHENING THE RELATIONSHIP BETWEEN HEALTHCARE DELIVERY AGENCIES INFRASTRUCTURE WITHIN THE DEPARTMENT WITHIN NIH AND CDC. SO HRQ, HAS BEEN IN THIS SPACE FOR MANY YEARS BUT I THINK IT'S ONE OF THE THINGS THAT THE CURRENT NIH LEADERSHIP PARTICULARLY FRANCIS COLLINS HAS BEEN SPENDING TIME PERSONALLY ON, MAKING SURE THAT THE -- THAT NIH AND OUR RESEARCH CONSTITUENCY INCLUDING YOURSELVES, ARE FULLY PARTICIPATING IN ALL THE INTERNAL DISCUSSIONS ABOUT MARRYING RESEARCH PRACTICE, HEALTHCARE DELIVERY COVERAGE AND IT. SO WE HAVE A NUMBER OF PROJECTS WE'LL ROLL OUT ACROSS THE DEPARTMENT TO BUILD LINKAGES. AND CONSORTIUM TO SUPPORT DOING THIS WORK. BUT YOU'RE GOING TO SEE THAT AS A GROWING THEME AND EMPHASIS OVER THE COMING YEAR AS WELL. SO WITH THAT I'LL PASS IT BACK OFF TO OUR NEXT SPEAKER, THANKS EVERYBODY FOR COMING. HEARD YOU HAD GOOD MEETINGS YESTERDAY AND APPRECIATE ALL THE TERRIFIC WORK YOU DO. >> OKAY. I HAVE THE RAISER POINTER. LASER POINTER THIS TIME. A FEW UP CASE, LIKE BOB SAID WE HAVE A LOT TO TALK ABOUT TODAY ON THE AGENDA. P I WANT TO GIVE A SHOUT OUT TO OP CAN L OF PEOPLE WHO ACTUALLY DID SOME OWEMAN'S JOB OF KEEPING THE DATA UP AND GOING. IN NEW JERSEY. WE WANT TO ACKNOWLEDGE THE WORK THAT HENRY LEWIS AND IF YOU GUYS GO BACK AND REALLY THANK LARRY DERRICK FOR JUST WORK THAT I KNOW HE DID WITH HENRY, HE BACKED UP THE DATA TO WAS RUNNING EDITS AND HELPING TO GET NEW JERSEY BACK UP AND GOING. AND CONNECTICUT. KATHY L FILL HIPS AND LINDA CROYLE AND SCOTT DEPUH AT IMS YOU GUYS WORKED THROUGHOUT THE WEEKEND BEFORE THE STORM HIT GETTING YOURSELF BACKED UP AND KEEPING CONNECTICUT UP AND GOING. WE WANT TO SAY THANKS. WE APPRECIATE EVERYTHING THAT EVERYBODY DOES THROUGHOUT ALL THESE NATURAL DISASTERS THATSOME TO BE FOLLOWING US AROUND. WE HAVE HAD A FEW CHANGES WITHIN OUR REGISTRIES. LOUISIANA, VIVIEN CHEN, I UNDERSTAND YOU'RE BEING TRANSITIONED TO THE ROLE OF SENIOR ADVISER. VIVIEN TOLD ME YESTERDAY -- AND STAND UP, EVERYBODY APPLAUD. [APPLAUSE] >> OUR NEW PRINCIPLE INVESTIGATOR IN OUR WONDERFUL REGISTRY OF LOUISIANA. AND IN HAWAII AFTER MANY, MANY YEARS OF SERVING SEER AND THE HAWAIIAN REGISTRY, MARK GOODMAN ESCAPEED TO THE MAINLAND. WHERE HE ASSUMED A NEW POSITION OVER AT CDER SINAI MEDICAL CENTER AS DIRECTOR FOR CANCER PREVENTION AND CONTROL. AND BRENDA HERNANDEZ, IF YOU WILL STAND UP. I INTRODUCE OUR NEW PRINCIPLE INVESTIGATOR FOR THE HAWAIIAN REGISTRY. SO PEOPLE MOVE UP WHICH IS GREAT. WE HAVE ALSO HAD CHANGES IN OUR CONTRACTING OFFICE. NOT THAT OLD FACES ARE OLD FACES. BUT SUE STAND UP IS REMAINING AS TEAM LEAD. AND ELAINE HOFFMAN, REMAINS WITH THE SEER TEAM BUT WITH -- SOMETHING OF YOUR REGISTRIES YOU'RE NOT RESPONSIBLE FOR CONNECTICUT, IOWA AND NEW JERSEY. AND WE HAVE GET SOME NEW KIDS. WE HAVE TOMMY NEAL WHO IS TAKING OVER FOR GEORGIA, LOUISIANA AND UTAH. DONNA PERILORI DOING CPIC HAWAII NEW MEXICO AND LOS ANGELES AND ALASKA NATIVE AND JOHNNY MACK WHO WILL BE HANDLING SEATTLE, KENTUCKY E PHI IN DETROIT. SO GIVE THEM ALL A BIG HAND. CONTACTING OFFICE CONTINUES TO JUST DO GREAT FABULOUS WORK KEEPING US UP AND GOING AND MAKING SURE THAT EVERYBODY HAS THE FUNDS AND Z HA ALL THEIR CONTRACTlp STUFF IN PLACE TO CONTINUE TO DO GREAT WORK FOR THE SEER PROGRAM. A SPECIAL COP GARAGELATIONS ARE IN ORDER SUE AND ELAINE ARE GOING UPSTAIRS LATER TODAY AND WILL BE HONORED FOR HAVING SERVED 40 YEARS OF GOVERNMENT SERVICE. [APPLAUSE] >> (INDISCERNIBLE) AT THE AGE OF MINUS 10. SO THEY'RE ONLY 29. WE HAVE HAD A COUPLE OF CHANGES IN THE SEER MANAGEMENT TEAM. MISSY JAILSON JOINED OUR TEAM. BEFORE COMING TO N SHE WORKED FOR THE NATIONAL CENTER FOR HEALTH STATISTICS AND THE CDC NATIONAL PROGRAM FOR CANCER REGISTRIES. SO I'M REALLY HAPPY THAT MISSY JOINED THE OFFICE OF THE ASSOCIATE DIRECTOR WITHIN THE SURVEILLANCE RESEARCH PROGRAM SO SHE CAN WORK WITH MYSELF AND A COUPLE OF OTHER PEOPLE WITH THE SEER REGISTRIES. HER AREAS OF INTEREST INCLUDES THINGS LIKE INFORMATICS, PROGRAM MANAGEMENT DATA USE AND EPIDEMIOLOGY. SO I'M REALLY HAPPY TO HAVE MISSY HELPING US OUT. NO CHANGES WITH REGISTRY LIAISON. THEY REMAIN THE SAME. REMEMBER TO CONTINUE TO ENGAGE THEM. AS AN INFORMATION CONDUIT WITHIN THE SRP, REMEMBER THEY'RE THERE AS INFORMAL MECHANISM FOR BUILDING BRIDGES AN INCREASING OUR RELATIONSHIPS. REMINDING YOU WITH OUR CONTRACTING PEOPLE IN THE BACK THAT THE REGISTRY LIAISONS DON'T REPLACE ANYTHING WITHIN YOUR CONTRACTUAL RELATIONSHIPS. ANYTHING THAT YOU HAVE GOT GOING ON THAT IMPACT YOUR CONTRACTS, INVOLVE YOUR CONTRACTS, REMEMBER YOU SHOULD BE CONTINUING TO GO THROUGH YOUR CONTRACTING OFFICE. OR THROUGH MYSELF OR AMY AS YOUR COURSE. BUT IF YOU DON'T WE STRAIGHTEN IT OUT ON THE GROUND AND FIGURE IT OUT AND GO FORWARD ANYWAY. OUR QC TEAM ASKED ME TO MAKE SURE THAT THEY HAVE THE MOST RECENT INFORMATION YOU HAVE ON YOUR DESIGNATED PERSONS ARE WHO ARE SERVING YOUR ROLE AS YOUR CQCI STAFF PERSON. THEY ALSO LIKE IT IF YOU COULD SEND US BRIEF INFORMATION ON THE QIQC INTEREST, SOME BACKGROUND ON THESE PERSONS AN MAYBE IF THEY HAVE GOT AREAS OF EXPERTISE, IF THEY'RE GOOD AT CODING COLON CANCER OR IF THEY ARE SUPERB TRAINERS AND KNOW HOW TO GET TOUGH CONCEPTS ACROSS. WE'D LIKE TO KNOW. PEGGY TALKED ABOUT THIS HOW WE WANT TO START ENGAGING THESE PEOPLE MORE IN SOME OF THE PROCESSES WE'RE DOING IN HOUSE DEVELOPING RULESK DEVELOPING MANUALS, DEVELOPING TESTS. A COUPLE OF PEOPLE HAVE COME UP AND ASKED ACTUALLY A BIT ABOUT THIS AND WANT TO STRESS THIS IS A CHANGE IN PHILOSOPHY ON OUR PART TO TRY TO ENGAGE MORE FIELD EXPERTISE IN TERMS OF DEVELOPING TOOLS AND DEVELOPING RULES AN PROCEDURES FOR THE FIELD. YOU GUYS ARE THE PEOPLE, YOUR STAFF ARE THE PEOPLE WHO ARE ON THE GROUND AND REALLY KNOW WHAT'S GOING ON IN TERMS OF COLLECTING THE DATA THAT YOU PROPROVIDE TO US. WE WOULD LIKE TO START TAKING MORE ADVANTAGE OF THE EXPERTISE IN THE FIELD. SO I PUT IN PEGGY'S PLACE AND THAT'S IT. ANY QUESTIONS? NEXT IS DENISE LEWIS. (OFF MIC) [APPLAUSE] >> >> CAN YOU HEAR ME? THERE IT GOES. THANK YOU. I'M DENISE HUE WHICH IS. I'M GOING THE TALK TO YOU ABOUT THE FEBRUARY SUBMISSION PROJECT AND THIS TALK TITLE IS EARLY ESTIMATES OF INCIDENTS AND EFFORTS TO EVALUATE THE FEBRUARY SEER SUBMISSION. SO WE HAVE A PROPOSAL. THANK YOU. NOW CAN YOU HEAR ME? OKAY. SO OUR PROPOSAL IS TO ISSUE EARLIER ESTIMATES OF FOUR MAJOR CANCER SITES PLUS ALL THE CANCER SITES COMBINED USING SEER 18 REGISTRYS FROM 2000 ONWARD. IN THE PAST YOU HAVE KINDLY SUBMITTED BEGINNING WITH THE FEBRUARY 2011 SUBMISSION THE DATA IN A FORMAT THAT WE CAN USE TO DO THIS PROJECT. WE'RE PROPOSING THAT RESULTS, AND ALSO THIS YEAR TOO I SHOULD SAY, 2012. RESULTS WOULD BE AVAILABLE AS AN ANNUAL PAPER FOR EXAMPLE AN MMWR AND WOULD BE AVAILABLE ON THE SEER WEBSITE. CURRENTLY WE HAVE DATA FOR THE TWO FEBRUARY SUBMISSIONS AS MENTIONED IN 2011 AND 2012. AND OUR PLANS TO ANALYZE IN THE CONTEXT OF THE NOVEMBER SUBMISSION FOR 2011 WHICH WE HAVE DONE AND 2012 AS SOON AS NOVEMBER 2012 SUBMISSIONS ARE READY TO SEE WHETHER THERE ARE CHANGES IN CASE COUNTS AND SELECTED VARIABLES. WE'RE FINDING THAT THE LATE ADJUSTMENT FOR FEBRUARY SUBMISSIONS IS CRITICAL AND WE CAN USE INCREASE IN CASES FOR EXAMPLE FROM FEBRUARY 2011 TO NOVEMBER 2011 TO GET PRELIMINARY IDEA OF ADJUSTMENT FACTORS FOR DELAY ADJUSTMENT AND ROCKY FOYER AND MANY OF THE PEOPLE HE WORKS WITH IN IMS ARE INVOLVED IN THAT HEAVILY RIGHT NOW. SO THIS IS A DATA MATRIX TO ILLUSTRATE THE WISH LIST FOR DOING THIS PROJECT WHAT YOU SEE ACROSS THE TOP STARTING YEAR 2000 TO 2013 AND FEBRUARY ON THAT RIGHT COLUMN THIS IS OUR WISH LIST OF DATA BY NOVEMBER AND FEBRUARY SUBMISSIONS. THE GREEN COLUMNS ARE TO ILLUSTRATE THE POINT. SO WE ACTUALLY DO HAVE -- NOT SURE HOW THIS WORKS BUT YOU CAN SEE WHERE THE SOLID GREEN COLUMNS ARE. WE DO HAVE THOSE NUMBERS AND WE'RE HOPING TO GET THE NUMBERS ON THE RIGHT IN BLUE TO CONTINUE THE PROJECT. SO TODAY I'M REALLY JUST GOING TO TALK ABOUT THE TWO COLUMNS THAT YOU SEE HERE IN, GREEN FROM FEBRUARY 20 # 1 AND BLUE FROM NOVEMBER 2011. AS I SAID WHEN WE HAVE ALL THE 2012 DATA UP AND RUNNING WE'LL HAVE MORE TO WORK WITH. SO IN THE MEANTIME IN OUR GROUP WE HAVE DONE INFORMAL INVESTIGATING USING SEER 17 CASE COUNT FOR ALL KAREN, YOU SEE THESE TWO LINES, IT'S A NUMBER OF CASE COUNTS AND YEAR OF DIAGNOSIS. SO THE NOVEMBER 2011 SUBMISSION IS THE FINAL FOR THAT YEAR. YOU CAN SEE HOW THE CASE NUMBERS RISE BUT THAT WHEN YOU ONLY HAVE A FEBRUARY 2011 SUBMISSION THE GREEN LINE IT DOES NOTICEABLY TOWARD THE END AND 2009 DIAGNOSIS HERE. THERE'S A RATHER BIG DIFFERENCE WITHIN THAT ONE YEAR OF DATA IN THE SUBMISSION. LIKEWISE FOR THE RATES, YOU NOTICE FOR THE BLUE LINE AT THE TOP THE NOVEMBER OR FINAL SUBMISSION FOR 2011 DOESN'T TAIL OFF AS MUCH AS THE FEBRUARY 2011 SUBMISSION. SO ESSENTIAL HI FOR THE YEAR 2011 FOR FEBRUARY TO NOVEMBER ALL CANCER SITES FOR REACCEPT YEAR WITH CASE COUNTS OR RATES. SO FOR THE DIAGNOSIS HERE, 2009, THE FEBRUARY 2011 SUBMISSION REFLECTED 5.4% UNDERCOUNT ALMOST 20,000 CASES SO 5.4 CASES ARE UNDERREPORTED BETWEEN TWO SUBMISSIONS AND THE RATE TRANSLATION IS APPROXIMATELY 25 CASES PER 100,000. SO USING NO DELAY ADJUSTMENTS FOR FEBRUARY SUBMISSIONS IS PROBLEMATIC SINCE TRENDS ARE DOWNWARD SO CANCER ESTIMATES ARE TOO LOW. BASED ON TABULAR DATA AND ROCKY WAS STRESSING THIS. WE NEED FULL DATA SUBMISSION. SO A PROPOSAL TO PRODUCE 2013 REPORT WILL HAVE THREE FEBRUARY SUBMISSIONS BUT ONLY TWO HAVE FOLLOW-UP NOVEMBER SUBMISSIONS FOR COMPARISON. IF THE UNDERREPORTING FEBRUARY SUBMISSIONS VARY SUBSTANTIALLY THE DELAY MODEL WILL NOT PRODUCE STABLE RESULTS AND WE WOULD THEN POSTPONE THE MMWR OR SIMILAR REPORT. BUT WE DO HAVE A VISION FOR THE FUTURE THAT, IS THE EARLY RELEASE OF OUR DATA WILL POSITION SEER AT THE CUTTING EDGE OF CANCER REGISTRY OPERATIONS. THIS REPORT WOULD ALLOW CANCER RESEARCHERS TO GET A FIRST LOOK AT TREND IN MAJOR CANCERS, 6 TO 9 MONTHS EARLIER THAN PREVIOUSLY I WOULD JUST LIKE TO ACKNOWLEDGE OUR FEBRUARY SUBMISSION TEAM. AND THERE ARE OTHERS PROBABLY THAT I HAVEN'T MENTIONED SO I APOLOGIZE.KP; I'LL TAKE ANY QUESTIONS IF YOU HAVE ANY. >> THAT'S WHAT WE'RE WORKING ON. >> OKAY I CAN HEAR MYSELF. I'M JUDITH AND ANGELA. WE'RE HERE FOR THE FUN PART OF THE MEETING. WE HAVE BEEN WORKING ON COMMUNICATING SEER STATISTICS. ANGELA HAS 400 SLIDES BUT SO FIRST I'M GOING -- I'M GOING TO GO FIRST. SO I'M JUST GOING TO GIVE YOU A DEMO OF ONE OF THE THINGS THAT SOME OF US HAVE COME UP WITH. THEN WILL ACKNOWLEDGE PEOPLE THAT CONTRIBUTED TO IT. THIS IS A SERIES THAT WE STARTED EARLIER THIS YEAR ON GIVING MORE -- GETTING STATISTICS OUT INTO THE WORLD YOU CAN GET TO IT FROM THE SEER HOME PAGE BUT IT'S ALSO CANCER.GOV. IT'S ON THEIR STATISTICS PORTAL. WE HAVE THESE LITTLE VIGNETTES CALLED DID YOU KNOW. AND WE HAVE SOME -- USE SEER STATISTICS TO GIVE A MESSAGE AND WE'RE WORKING CLOSELY WITH OFFICE OF COMMUNICATIONS AND EDUCATION. SO WITHIN THESE THERE'S USUALLY A OR MOST TIMES THERE'S AN EDUCATIONAL MESSAGE TOWARDS THE END OF IT. SO THEY GET REVIEWED ALL OVER THE PLACE. INCLUDING BOB IS THE FINAL ONE TO STAMP OKAY. SO I WILL GIVE YOU A LITTLE SHOW AND TELL HERE. HOPEFULLY THIS WILL WORK AGAIN LIKE IT DID THIS MORNING. Q. DID YOU THOUGH THAT ONE CANCER IN THE UNITED STATES IS DECLINING AMONG BOTH MEN AND WOMEN? ACCORDING TO DATA FROM N SURVEILLANCE EPIDEMIOLOGY AND ENRESULTS OR SEER PROGRAM, THE RATE OF LUNG CANCER DIAGNOSES HAVE SLIGHTLY DECREASED AMONG WOMEN SINCE THE LATE 1990s. IN COMPARISON DECLINE IN LUNG CANCER DIAGNOSES IN MEN BEGAN EARLIER AND HAS BEEN STEEPER. THESE TRENDS REFLECT CIGARETTE SMOKING IN THE UNITED STATES. WOMEN BEGAN SMOKING AND BEGAN QUITTING LATER THAN MEN. AS A RESULT WOMEN HAD DELAYED DECREASE IN LUNG CANCER DIAGNOSES. CANCER DEATH RATES ARE DECREASING AMONG MEN AN WOMEN. LUNG CANCER DEATHS LEVELED OFF AMONG MEN IN 1990 AND HAVE BEEN DECLINING SINCE. HOW FAR LUNG CANCER DEATHS AMONG WOMEN ONLY BEGAN TO DECREASE AROUND 2002. DEATH RATES REMAIN HIGHER FROM MEN THAN WOMEN MAINLY BECAUSE MEN HISTORICALLY SMOKED MORE F. YOU DON'T SMOKE, DON'T START. IF YOU DO SMOKE, QUIT. YOUR DOCTOR CAN HELP YOU WITH WAYS TO STOP SMOKING.r >> YOU CAN SEE THEY ACKNOWLEDGE SEER AND IF THERE'S A REFERENCE, GIVE IT SO THESE USUALLY GO ALONG WITH WHAT THE AWARENESS CALENDAR, LIKE THIS IS LUNG CANCER AWARENESS MONTH AND YOU CAN SEE THAT OVER HERE WE HAVE BREAST CANCER, PROSTATE, WE HAVE QUITE A NUMBER OF THEM HERETOFORE YOU TO LOOK AT. IT'S THE OD PLUS NOTE OUT ON SOCIAL MEDIA WHENEVER ANYONE COMES UP. ANY FEEDBACK YOU WANT TO GIVE US IS FINE BUT TELL YOU WE HAVE HAD SO MUCH FEEDBACK ON THIS IT'S BEEN GREAT. SO I WANT TO ACKNOWLEDGE PEOPLE WHO HAVE BEEN PUTTING THEM TOGETHER. SEAN (INDISCERNIBLE) CSR FOR STORIES THAT WE CAN TELL IN THIS AND ACTUALLY START THE STORY AND WE HAVE TWO INTERNS HEATHER ALSO TEAR AND HILLARY OF MAP WHO MAKE IT INTO A SCRIPT AND GET ININTO A YOUTUBE VERSION BEFORE IT GOES THROUGH REVIEWS. IF I CAN GET THEM TO STAND UP. I SEE ONE HIDING BACK BEHIND THE POLE OVER HERE. [APPLAUSE] I'LL HAVE TO SAY WHEN WE STARTED WITH OFFICE OF COMMUNICATIONS AND EDUCATION WE WERE GOING TO HAVE THEM DO THE PRODUCTION. SO IT WAS GOING TO BE VERY EXPENSIVE WITH THEIR CONTRACTORS AND EVERYTHING. SO WHAT DO YOU DO WHEN YOU DON'T HAVE MONEY? GIVE TO IT THE INTERNS TO DO. SO HEATHER AND HILLARY PUT IT TOGETHER SO IT'S FREE. SO WE'RE CONTINUING TO WORK ON THAT. FEEL FREE TO GO TO THE SEER HOME PAGE TO LOOK AT THEM BECAUSE THEY OTHER PRETTY COOL. QUESTIONS. >> WE HAVE A TIME LINE THAT WE WORK WITH. WE SET UP A PROCESS, HOW LONG DOES IT TAKE? FOUR WEEKS BY THE TIME YOU START. SO WE'RE WORKING A COUPLE OF MONTHS AHEAD FOR WHATEVER SUBJECT MATTER. IT TOOK US A COUPLE OF MONTHS TO CATCH UP TO GET STARTED WITH IT. IT IS A FOUR WEEK PROCESS BECAUSE SOME IS IN REVIEW WHILE OTHER IS PUT TOGETHER AND VOICE OVERS ARE BEING DONE. >> SO CAN YOU TELL US A SECRET TO HOW WE CAN GET APPROVALS DONE IN FOUR WEEKS FOR OTHER TYPES OF ACTIVITIES? >> I WISH I COULD. >> YOU MAY WANT TO TALK TO THE TRANSFER AGREEMENT PEOPLE AND GET THEM ON A SIMILAR SCHEDULE. (INDISCERNIBLE) >> I HAVE THE MICROPHONE, I HAD ONE OTHER QUESTION FOR THE PREVIOUS SPEAKER WHAT IS THE DEADLINE DADE DAYTIME FOR THE FEBRUARY -- FOR THE 2013 SUBMISSION -- EARLY SUBMISSION OF INCIDENCE DATA, THE END OF FEBRUARY? END OF FEBRUARY 2013, HAS IT BEEN SET YET? LAST YEAR IT WAS EXTENDED. NO PLANS TO EXTEND THIS YEAR, END OF FEBRUARY 2013? (OFF MIC) (OFF MIC) >> GOOD MORNING, EVERYBODY. THANKS FOR THE OPPORTUNITY TO TALK TO YOU AND SO I WILL PROVIDE UPDATES ON ONGOING PROJECT TO ENHANCE COMMUNICATION OF SEER (INAUDIBLE). AS YOU HAVE SEEN FROM THE LAST -- PREVIOUS PRESENTATION WE HAVE NEW BANNERS, NEW MODELS SO THE (INAUDIBLE) WE THOUGHT IT WOULD BE IMPORTANT TO LINK SEER LOGO WITH N. THIS IS THE NEW LOGO. HOPE YOU LIKE IT. SO OVERALL GOAL OF THESE BIG PROJECT IS TO ENHANCE IMPACT OF THE SEER WEBSITE AND SEER STATISTICS BY INCREASING ITS REACH AND RELEVANCE TO DIFFERENT AUDIENCE. WE BEGAN WITH THREE PROJECTS WHICH WAS REDESIGN OF SEER WEBSITE, DEVELOPMENT AND (INAUDIBLE) OF THE SEER (INAUDIBLE) FACT SHEET AND DEVELOPMENT OF SEER DATA EXPLORER WHICH WOULD BE A NEW TOOL THAT EVENTUALLY WE REPLACE CSR (INAUDIBLE). SO HERE IS THE LOOK OF THE CURRENT SEER HOME PAGE. WE HAVE NOW (INAUDIBLE) FOR A NEW HOME PAGE AND USES THE NIH COLOR SCHEME SO THE MANUALS ARE AT THE TOP. THE SEER STATISTICS ARE HIGHLIGHTED, WE SUSPENDED (INAUDIBLE). (INAUDIBLE) IS THAT IF YOU POINT AT THE MENU BAR YOU CAN SEE THE CONTENT. SO IF YOU POINT AT ANY TOP OF THE MENU BAR YOU SEE THE CONTENT OF WHAT (INAUDIBLE) THAT PAGE. WHEN WE BEGAN THIS PROJECT WE THOUGHT THAT -- SO WE HAD DEVELOPED TOOLS ALONG THE NUMBER OF YEARS AND THE TOOLS HAVE BEEN DEVELOPED THINKING ABOUT THE MORE ON THE UT -- UTILITY OR HOW EASY IT WAS. WE THOUGHT TAKING A FRESH LOOK TO DIVIDE THESE TWO BETWEEN AUDIENCE AND USERS AND WE TALK ABOUT TWO MAIN AUDIENCES WHICH WERE THE PUBLIC HEALTH USER POLICY MAKERS AND RESEARCHERS, AND THEN THE CANCER PATIENT FAMILY AND MEDIA. WE THOUGHT OF TWO MAIN TOOLS FOR THAT T. SEER DATA EXPLORER WE HAVE STATISTICALLY (INAUDIBLE).II WE'LL HAVE MORE FUNCTIONALITY SO PEOPLE WOULD BE ABLE THE DOWNLOAD TABLES, SPEAKERS AND DATA. WE WILL BE ABLE TO HAVE POWERPOINT PRESENTATIONS ABLE TO (INAUDIBLE) DATA INTO ONE CATEGORY, SEX AGE RACE STAGE PERIOD AREA AND ABILITY TO SEE SEVERAL CANCER SITES AT THE SAME TIME. LINKS TO MORE SPECIALIZED DATA AS WELL. THEN FOR A MORE LAY AUDIENCE CANCER PATIENT FAMILY MEDIA WE HAVE (INAUDIBLE) LANGUAGE, GRAPHICS AND NEED PAIR SONS BY CANCER SITE. THEY WOULD BE ABLE TO GET MORE INFORMATION AND ALSO (INAUDIBLE). SO WE HAVE -- WE HAVE A COLLABORATION WITH THE WASHINGTON UNIVERSITY ST. LOUIS AND THEY PROVIDED (INAUDIBLE) FOR THE NEW SEER CANCER FACT SHEET. THE IDEA OR THE GOALS OF THESE PROJECTS WAS TO PRESENT A NEW VISION CONTAINED THAT WOULD INCREASE THE (INAUDIBLE). AND DESIGNER FRAMEWORK WE NEED TO IMPLEMENT AMONG SEVERAL CANCER SITES. THEN TARGET THE FACT SHEETS TO CANCER PATIENTS FAMILY MEDIA. AND INCLUDE (INAUDIBLE) THAT PROVIDES A QUICK OVERVIEW OF EACH CANCER SITE AND INCLUDE LINKS TO RELEVANT N MATERIAL. SO HERE IS THE CURRENT HOME PAGE OF THE FACT SHEETS. AND THIS IS THE LOOK. WE'RE LOOKING ON THE COLORS BUT THIS IS THE OVERALL TWEAKING BUT THIS IS THE LOOK OF THE NEW FACT SHEET. THE DESIGN IS ACCORDIAN STYLE. THESE ARE THE SECTIONS HERE. YOU CAN CLICK ON THIS RIGHT BUTTON HERE AND (INAUDIBLE) SECTION. YOU CAN SEE THE OTHER SECTIONS (INAUDIBLE) YOU CANNOT READ ANYTHING, TOO SMALL FOR THIS PAGE. SO SOME EXAMPLES OF THE NEW VISUAL. I DON'T KNOW, THE SUGGESTIONS FROM THE WASHINGTON UNIVERSITY WAS LIKE FOR EXAMPLE FOR SURVIVAL IT'S VERY NICE I DON'T KNOW HOW THEY ARE CALLED PEOPLE PICTURES WHERE YOU CAN SEE HOW MANY WILL BE SURVIVING FIVE YEARS. SO WE BEGAN WITH THE CANCER SITE WE THOUGHT WAS CHALLENGING WHICH WAS PANCREATIC CANCER BECAUSE WE WANTED TO SEE IF THEY WOULD COME WITH OPTIMISTIC VIEW BUT SO THIS DESIGN WAS WHAT IS IN THE CSR NOW. CANNOT SEE VERY WELL THE INFORMATION. SO WE DID -- I WOULD SAY EXTENSIVE THOUGH WE DIDN'T HAVE MANY PEOPLE TEST IT USABILITY TESTING SO WE HAVE USER CENTER DESIGN AND THEY INTERVIEWED SIX MEMBERS OF THE PUBLIC SOMEHOW AFFECTED BY CANCER. AND THREE MEMBERS OF THE MEDIA TO TEST THIS FACT SHEET. BUT WE ALSO HAVE SETTING FOR N EMPLOYEES. THEY PROVIDED FEEDBACK ON HOW WELL THEY UNDERSTOOD THE GRAPHS OF INCIDENCE MORTALITY SURVIVAL AND RISK DATA. THEY ALSO PROVIDE SOME FEEDBACK ON THE LANGUAGE USED FOR THE INFORMATION. WE ARE AT THE MOMENT REVISING SO THE RECOMMENDATIONS FROM THE USABILITY TESTING WAS TO INCLUDE EXPLANATORY NOTES ON GRAPHS AND TABLES. USE PLAIN LANGUAGE THROUGHOUT. SO IN SOME PLACES WE EXPLAINED RELATIVE SURVIVAL AND PEOPLE COULDN'T REALLY UNDERSTAND WHAT RELATIVE SURVIVAL WAS. LINK TO N RESOURCES, INTRODUCE EASY UNDERSTOOD GRAPH, THE GRAPH WE HAD WERE NOT SO EASY TO UNDERSTAND. AND SIMPLIFY SOME BAR CHARTS AND SIMPLIFY GRAPHS AND USE BAR CHARTS AND PIE CHARTS. SO THIS IS WHAT WE HAVE NOW AT A GLANCE. ESTIMATES OF NEW CANCER CASES IN 2012 AND PERCENT OF ALL NEW CANCER P CASES. THE NEW ESTIMATES DEATHS IN 2012 (INAUDIBLE) OF ALL CANCER DEATHS. HERE WE HAVE (INAUDIBLE) AND HERE SURVIVORS SO PEOPLE CAN GO AND HAVE OVER VIEW OF WHAT'S GOING ON FOR THAT CANCER SITE. HERE IS SOME VISUAL FOR PRESENTING SURVIVAL INFORMATION BY STAGE BUT ALSO COMBINED WITH THE PERCENT OF CASES THAT ARE DIAGNOSED IN THAT STAGE. SURVIVAL BY STAGE. HERE WE SHOW HOUR CANCER P RANK AMONG NEW DIAGNOSE CASES. THAT REPRESENTS 2.7% OF CANCER CASES. HERE IS ANOTHER CHART OF THE DISTRIBUTION OF NEW CANCER CASES BY HERE WE SHOW NEW CANCER BY RACE AND ETHNICITY FOR MALES AND FEMALES. HERE IS A FIGURE THAT WE ARE WORKING, THAT WOULD SHOW HOW TO COMBINE INCIDENCE AND MORTALITY SURVIVAL SO WE CAN SEE THAT INCIDENCE IS GOING UP AND WE SHOW WHAT IT BEGINS FOR 105 DAYSES OUT OF 100,000 WOMEN AND GOES UP TO 130 OUT OF 130,000 WOMEN AND MORTALITY, THE SAME. SO MORTALITY HAS BEEN DECLINING AND HERE IS FIVE YEAR RELATIVE SURVIVAL. WE ARE STILL WORKING ON THIS PRESENTATION OF HOW -- THIS MIGHT GIVE EASY WAY TO HOW SURVIVAL TRENDS ARE GOING UP, SO MORTALITY IS GOING DOWN BUT INCIDENCE IS GOING UP AND SURVIVAL IS GOING UP. SO THE OTHER TWO WE ARE WORKING WHICH IS THE SEER DATA EXPLORER, WE DID AT THE BEGINNING USABILITY TEST OF THE GOOGLE DATA EXPLORER. IT REALLY DID NOT TEST WELL, I DON'T KNOW IT WAS TOO FLEXIBLE, PEOPLE COULDN'T UNDERSTAND HOW TO VISUALIZE THINGS. SO WHAT WE DECIDED TO DO IS WE ARE CURRENTLY WORKING ON HYBRID OF THE CANCER STATISTICS REVIEW, THE CSR AND (INAUDIBLE). IT IS GOING TO BE MORE FLEXIBLE THAN BOTH OF THEM. MANY SELECTIONS WILL BE MADE BEHIND THE SCENES. FOR EXAMPLE, WE ARE HOPING TO HAVE ALL THE TABLES AND FIGURES USING DELAY ADJUSTMENTS THAT WILL BE AN OPTION TO GET NOT DELAY ADJUSTMENT. BUT INITIALLY THE OPTION IS GOING TO BE MADE FOR THE USER. AND WE DO MAKE ALSO SELECTION OF WHICH OF THE BEST DATA TO REPRESENT THAT (INAUDIBLE). SO I DON'T KNOW IF YOU GO THERE YOU DON'T NEED TO BE FAMILIAR WITH THESE CHOICES. THEY WILL BE CLEAR ON HOW TO PRODUCE TABLES AND FIGURES. THE (INAUDIBLE) IS GOING TO BE TABLED BUT THEY WILL BE ABLE TO ALSO PRODUCE FIGURES ON TABLES AN THERE WILL BE POSSIBILITY POSSIBILITY TO DOWNLOAD THE DATA, WORK ONGOING. HOW ARE THE TOOLS IMPLEMENTED IN THE SEER WEBSITE? THE MENU WHERE WE HAVE THE SEER STATISTICS WE ARE PLANNING TO HAVE STATISTICAL SUMMARY AND THAT WILL GO THE FACT SHEET AND WE ALSO ARE PLANNING TO HAVE OTHER FACT SHEETS FOR EXAMPLE FOR CHILDHOOD CANCERS OR CANCER DISPARITIES. AND WE HAVE ALSO A SECTION THAT WE GET SOME INFORMATION FROM THE CANCER TREND PROGRESS REPORT ON INCIDENCE MORTALITY AND SURVIVAL THAT WE GO HERE. AND RELATED WEBSITES AND SITES OF (INAUDIBLE). WE HAVE THE DATA EXPLORER AND THE IDEA IS ONCE YOU GO THERE YOU SEE IMMEDIATELY ONE OF THE DISPLAYS OF THE -- WHAT YOU CAN GET FROM THE DATA EXPLORER AND MAYBE SOME EXPLANATION OF THE SEER AGGREGATION AND WHAT THEY REPRESENT. THIS IS VERY MUCH WORK IN PROGRESS. SO NEXT STEPS WITH WE ARE WORKING ON IMPLEMENTING THE NEW DESIGN OF THE FACT SHEETS ACROSS THE SEER WEBSITE. WE ARE ALSO WORKING ON THE SEER WEBSITE AND WE ARE IMPLEMENTING THE NEW BANNER ON WEBSITE AND RELATED MATERIAL. WE FINALIZE THE TEMPLATE OR ARE FINALIZING THE TEMPLATES AND NOW WE ARE CREATING FACT SHEETS FOR THE OTHER CANCER SITES. DESIGNING THE THE SEER DATA EXPLORER BASED ON (INAUDIBLE). SO I WOULD LIKE TO THANK ANDO ACKNOWLEDGE ALL THE SEER WEBSITE WORKING GROUP. WE HAVE PEOPLE WORKING FROM SEVERAL PLACES AT N BUT ALSO FROM IMS, WASHINGTON UNIVERSITY AND (INAUDIBLE) WORKING WITH US. SO THANK YOU. [APPLAUSE] >> ANY QUESTIONS? >> WE HAVE SO MUCH FACT FOR COLORS. THE COLORS OF THE WEBSITE ARE. IZED BUT NOT THE COLORS OF THE FACT SHEETS. IF YOU HAVE A RECOMMENDATION, WE WOULD -- >> (OFF MIC) >> YES. WE THOUGHT THE SAME. WE WERE LOOKING AT COLORS WITH MORE CONTRAST. >> AND IF YOU HAVE ANY OTHER INPUT ANY TIME FEEL FREE TO PASS IT ALONG. WE WELCOME IT. >> THANK YOU. >> CAN YOU HEAR ME NOW? LIKE VERIZON. FIRST OF ALL I WOULD LIKE TO INTRODUCE LINDSEY (INAUDIBLE) A NEW EMPLOYEE OF OURS AN ARP AND SHE WILL BE WORKING CLOSELY WITH ME IN POC QOC STUDY. SO IN JULY WE HAD A WORKSHOP AT THE SUGGESTION OF PERHAPS INSISTENCE OF MY ASSOCIATE DIRECTOR RACHEL BALLARD BARBETTE. WE INVITED A NUMBER OF PEOPLE TO THE WORKSHOP. THE AIMS WERE TO REVIEW THE CONTRIBUTIONS OF THE POC QOC STUDIES TO CANCER CARE DELIVERY TREATMENT GUIDELINES DISSEMINATION I GUESS I JUST DON'T HAVE IT CLOSE ENOUGH. IS THIS BETTER? CAN YOU HEAR ME NOW? NO? DO SRI TO LOOK AT MY STOMACH? OKAY. NOW? ALL RIGHT. I'LL TRY TO SPEAK UP. WE ALSO WANTED TO LOOK AT THE CONTRIBUTIONS WITH -- FOR THE UNDERSTANDING OF DISPARITIES AND CARE AND RELATED PATIENT OUTCOMES. AND REVIEW THE PROCESSES THAT WE GO THROUGH PICKING THE CANCER SITES AND VARIABLES AND LOOK AT APPROACHES TO ENHANCE THE UTILITY OF POC THE TIMELINESS ANDIOUS OF THE DATA FOR RESEARCH AND POLICY. AND DISCUSS ROLES OF POC TESTING VARIABLES FOR THE GENERAL CANCER REGISTRY DATA COLLECTION. SO ATTENDEES WERE N LEADERSHIP AND PROGRAM SCIENTISTS, SEER PIs, CLINICIAN INVESTIGATOR´s REPRESENTATIVES FROM N PARTNER ORGANIZATIONS AND REGISTRY MANAGERS AND SENIOR LEADERSHIP. SOME OF THE CHALLENGES THAT WE NEEDED TO DISCUSS IS WE WANTED TO BE SURE WE WERE MAINTAINING THE QUALITY OF THE STUDY, WE WANTED TO ENHANCE THE STUDY BY IDENTIFYING QUESTIONS THAT WOULD BE PRIORITIES, VARIABLES OF INTEREST AND HOPEFULLY TIMELINESS OF THE DATA BECAUSE IT DOES TEND TO LAG BEHIND THE ACTUAL DIAGNOSIS AND TREATMENT OF PATIENTS WHO WANTED TO INCREASE THE NUMBER OF INVESTIGATORS USING THE DATA. AND OVERALL INCREASE THE VALUE OF THE POC DATA. AND LOOK AT ADDITIONAL USES FOR THE POC DATA. ALSO IMPROVE DISSEMINATION AND LOOK AT COST CONTROL WHICH IS AN ISSUE IN THESE CURRENT SO THE FIRST THING I DID, THESE ARE UNUSUAL CANCER SITES AND JENNIFER IS GOING TO RUN THE BREAST COLON AND LUNG CANCER FROM 2010. I LOOK AT THE IF PHYSICIAN VERIFICATION. YOU CAN SEE THIS IS THE HIGH. THE MAJORITY OF THE REGISTRIES WERE VERIFYING WITH IF PHYSICIAN OR UNIFYING RECORDS, THE TREATMENT DATA. BUT THIS IS THE LOW FOR THE VERIFICATION WITH IF PHYSICIAN OR HOSPITAL YOU CAN SEE FOR KIDNEYS ONE REGISTRY ONLY VERIFIES 15%. THESE ARE THE AVERAGES, THEY ARE NOT WEIGHTED FOR THE SIZE OF THE REGISTRY. SO IT'S JUST THE AVERAGE OF ALL REGISTRIES. THIS IS THE PERCENTAGE OF PATIENTS WHO HAD NO IF PHYSICIAN VERIFICATION SO THEY DIDN'T HAVE A IF PHYSICIAN UNIFIED OR HOSPITAL RECORD. LOOKING AT ENHANCING THE QUALITY OF ENHANCING THE POC DATA, WE WANTED TO IDENTIFY PRIORITY QUESTIONS, DECREASE THE TIME BETWEEN THE DIAGNOSIS AND AVAILABILITY OF DATA WHICH WOULD BE AVAILABLE FOR RESEARCHERS TO ANALYZE, INCREASE THE NUMBER OF INVESTIGATORS AND P DO ADDITIONAL ANALYSES, MULTIPLE YEARSK MULTIPLE SITES. WE HAVE A LOT OF NEW TESTS THAT WE'RE COLLECTING. WE WANTED TO LOOK AT THE INFLUENCE OF THE TEST ON THE ACTUAL THERAPY. THE OTHER THING WE THINK WE WANT TO DO LOOK AT VALIDATION OF TREATMENT DATA. SO LOOKING AD IDENTIFYING PRIORITIES, THE GROUP SUGGESTED WE SHOULD CREATE A FORMAL STEERING COMMITTEE THAT WOULD INVOLVE PIs, SUBJECT MATTER EXPERTS, WE CURRENTLY WORK WITH PIs AND THE CTEP RESEARCHERS CLINICIANS UPSTAIRS TO SELECT CANCER SITES AND IDENTIFY QUESTIONS OF INTEREST EACH YEAR. THIS WILL BE A MORE FORMAL COMMITTEE THAT WILL INCLUDE ADDITIONAL PEOPLE. THE OTHER THING SUGGESTED IS TO PRE-IDENTIFY LOAD AUTHORS FOR EACH CANCER SITE SO SOON AS THE DATA IS READY THAT PERSON WOULD BE ABLE TO START THE ANALYSIS. SO THE SELECTION OF CANCER SITES AND VARIABLES TO BE INCLUDED, WE SHOULD BEGIN THE PROCESS FULLY SO THAT WE CAN INVOLVE LOTS OF SCIENTISTS, INCLUDING THE STEER I COMMITTEE AND SUBJECT MATTER SPECIALISTS, CLINICIANS OR PEOPLE WITH WITH KNOWLEDGE OF NEW BIOMARKERS, MUTATIONS THAT SHOULD BE INCLUDED AND ABSTRACTED FROM THE MEDICAL RECORDS. AND WE IMMEDIATE TO IDENTIFY FACTORS THAT ARE APPROPRIATE TO EACH CANCER SITE. SO HERE IS THE TIMELINESS PROBLEM, POC QOC EXPRESS WHICH WOULD BE TO IDENTIFY HIGH PRIORITIES, CRITICAL QUESTIONS, THE GOAL WOULD BE TO OBTAIN THE DATA IN THE YEAR THAT THE PATIENT IS DIAGNOSED. SO FOR EXAMPLE, YOU HAVE THE 2012 DATA IN 2012. IT WOULD BE DONE IN SELECTED RECOMMEND INDUSTRIES WITH HIGH QUALITY COMPLETE DATA EARLY IN THE YEAR AND EXCELLENT IF PHYSICIAN VERIFICATION. THIS WOULD BE DONE FOR NOT FOR THE BROADER QUESTIONS OR TRENDS OVER TIME BUT FOR PRESSING ISSUE S THAT NEED AN ANSWER QUICKLY. THE OTHER THING SUGGESTED IS TO MATCH TO THE FEBRUARY, BECAUSE AS IT IS WE WAIT UNTIL DATA GOES PUBLIC IN APRIL. SO IT'S AFTER THE NOVEMBER SUBMISSION. AND THE DATA IS CLEAN AND PUBLIC. SO IN APRIL TO MATCH SO SIGNIFICANTLY MOVE UP TIME LINES. WE HAVE TO INVESTIGATE WHETHER THIS IS WORKABLE. BUT SINCE THE POC QOC PATIENTS ARE BEING COMPLETED, THEY SHOULD BE IN THAT FEBRUARY SUBMISSION. THIS PROVIDES A LIST OF WHAT IS CURRENTLY DONE AND PROPOSED CHANGES TO THE TIME LINE. THE FIRST ITEM BECAUSE OF THE FUNDING OF THE STUDIES WOULDN'T CHANGE WE CANNOT TRAIN UNTIL YOU HAVE THE MONEY IN YOUR CONTRACT TO SEND YOUR ABSTRACTERS TO TRAIN. BUT WE'RE LOOKING TO MOVE UP THE CASE SELECTION INTO DECEMBER AND DISCUSS HOW WORKABLE THAT IS. SO PATIENTS ARE SELECTED IN DECEMBER, THE ABSTRACTING WOULD BE DONE BETWEEN DECEMBER AN MARCH INCLUDING THE IF PHYSICIAN VERIFICATION. ABSTRACTS WOULD BE SUBMITTED IN MARCH, MATCHED IN MARCH, THAT WOULD GIVE IMS TIME THE LOOK AT THE DATA THAT HAS COME IN FROM THE FEBRUARY SUBMISSION. THEN IN APRIL OF 2013 AS OPPOSED TO MAY OF 2014 THE DATA ANALYSIS COULD BE (INAUDIBLE) SO THE DATA WOULD COME OUT IN THEORY MORE THAN A YEAR AHEAD WHEN IT CURRENTLY COMES OUT. ALL OF THIS ASSUMES THAT THE DATA CAN BE ABSTRACTED IN A SHORT TIME. SO WE LOOKED AT THE DISSEMINATION OF INFORMATION COMING FROM THE POC DATA. SOME SUGGESTIONS WERE THAT WE PARTNER WITH PROFESSIONAL ORGANIZATIONS LIKE AMERICAN COLLEGE OF SURGEONS, ACOG, ASCO, ACS, ALSO PERHAPS DO A JOURNAL SUPPLEMENT, HAVING THE N PRESS OFFICE DO A PRESS RELEASE PRIOR TO THE PUBLICATION OF THE ARTICLES. USE THE DATA TOD!w INFORM DATA COMPLIANCE MEETING AND IT WAS USED FOR A MEETING ON MALE BREAST CANCER BECAUSE IT WAS THE ONLY DATA ON POPULATION-BASED STUDY, MALE BREAST CANCER PATIENTS. AND TREATMENT GIVEN TO THEM. THEN WE INCREASE THE USE OF MULTI-YEAR MULTI-SITE ANALYSES. ANOTHER THING TO DO IS LOOK AT THE BREADTH AND DEPTH OF THE THE SEER POC DATA. WE TALKED CAPITALIZING ON THE HOSPITAL EMR. WE THINK THAT EVERYONE IS DOING THAT AS MUCH AS POSSIBLE. WE ALSO TALKED ABOUT ACCESS TO IF PHYSICIAN OFFICES. SOME PEOPLE HAVE DONE THIS, IT'S VERY TIME CONSUMING AND COMPLEX. I THINK PEOPLE WHO CAN DO IT ARE DOING IT NOW BUT WE COULD WORK TOWARDS HAVING MORE OFFICES HOOKED INTO THE CANCER REGISTRIES, THE PROBLEM OF COURSE IS NOTHING -- NONE OF THE COMPUTER PROGRAMS TALK TO EACH OTHER. SO EACH TIME IS SORT OF A NEW ADVENTURE WHEN MATCHING TO A IF PHYSICIAN OFFICE. THE OTHER THING THAT COULD EASILY BE DONE IS TO ADD OTHER VARIABLES TO THE POC RECORDS LIKE POVERTY AND LITERACY WHICH SOMEONE SUGGESTED WAS PERHAPS A BETTER PREDICTOR OF TREATMENT THAN SES FACTORS. THESE ARE AVAILABLE FROM THE AREA RESOURCE FILE. THEY ALSO TALKED ABOUT ADDING IF PHYSICIAN CHARACTERISTICS. WE COULD GET THE IF PHYSICIAN UPEN NUMBER AND MATCH IT TO THE AMA MASTER FILING, GET IF PHYSICIAN CHARACTERISTICS. WE CURRENTLY GET SOME HOSPITAL CHARACTERISTICS BUT PERHAPS WE NEED TO GET MORE. IF WE HAD ADDITIONAL INFORMATION WE COULD DO DISTANCES TO HOSPITALS WHICH SEER MEDICARE DOES NOW. THE OTHER THING IS TO LINK TO OTHER HEALTH SERVICES DATA TO OBTAIN DATA MORE COST EFFICIENTLY AND VARIABLES SO TO LINK IT TO -- WE'RE CURRENTLY LINKING IT TO MEDICARE DATA BUT MAYBE OTHER INSURANCE LIKE BLUE CROSS BLUE SHIELD, OTHER INSURANCE DATA SO PARTICIPATED IN ANALYSES AND THIS IS A LIST PRIMARILY PEOPLE PARTICIPATED AS CO-AUTHORS BUT THERE ARE FOUR REGISTRIES THAT HAVE DONE THE DATA ANALYSIS THEMSELVES AND WRITTEN PAPERS ON ON THE TOC DATA. THE DATA IS USED FOR CANCER TRENDS PROGRESS REVIEW, SISNET USED THE DATA. WE HAVE GIVEN EXTRAMURAL RESEARCHERS TABULATIONS FOR THEIR DATA. WE NEVER RELEASED IT TO NON-SEER EXTRAMURAL RESEARCHERS, WE HAVE ONLY GIVEN TABULAR FORMS. WE LOOKED AT IP FOR OVARIAN CANCER FOR CTEP WHEN THEY -- IMMEDIATELY PRIOR TO THEIR RELEASE OF CLINICAL ANNOUNCEMENTS THAT IP SHOULD BE USED FOR OVARIAN CANCER. N MALE BREAST CANCER WORKSHOP, THE DATA WAS USED, WAS PRESENTED AT THAT. ANNUAL REPORT TO THE NATION. THERE WAS TREATMENT IN THAT. WE USED ONE PERSON USED IT FOR DOCTOR DISSERTATION AND ANOTHER FOR MASTER'S THESIS. SO WE TALKED ABOUT EVALUATIONC!2ˇ OF NEW FACTORS USING POC. EVERYONE REMEMBERS 2010 WHERE ALL THE SITE SPECIFIC FACTORS GOT ADDED IN. AND ONE THING THAT WE CAN DO IS LOOK AT THE VARIABLE PRIOR TO THE GENERAL DATA COLLECTION TO SEE WHETHER OR NOT IT'S AVAILABLE, HOW LONG IT TAKES TO GET IT. AND THE QUALITY OF THE DATA. AND WE THOUGHT WE COULD USE TO IT LOOK IF THE THE TRUE PREVALENCE OF MUTATIONS IN A POPULATION, IT COULD BE USED AS A SAMPLING SEEN FOR PRIOR TO SUBMISSION OF AN RO-1 STUDY, ALSO FEASIBILITY STUDIES PRIOR TO RO-1 STUDIES. ANOTHER THING IS TO DETERMINE INITIAL THERAPY BEYOND THE INITIAL THERAPY SO YOU HAVE A GROUP OF PATIENTS AND YOU FOLLOW BACK WITH THEM TO SEE WHAT ADDITIONAL THERAPY WAS GIVEN IF ANY RECURRENCES. AND OTHER ISSUES. OTHER THINGS WE WANTED TO DO IS LOOK AT ACCESS TO CARE AND WHETHER OR NOT TESTS ARE BEING DONE LIKE ONCOTYPE CHANGING THE THERAPIES THAT ARE BEING GIVEN. SO WE SPENT A FAIR AMOUNT OF TIME TALKING ABOUT THE NUMBER OF USERS AND HOW TO INCREASE THE NUMBER OF USERS. WE THOUGHT IT WOULD BE AN ADVANTAGE BECAUSE IT INCREASES THE TIMELINESS OF THE PUBLICATIONS. WE HOPE TO DO HIGH QUALITY ANALYSES, LOW COST. IT REQUIRES A WIDER DISTRIBUTION OF THE DATA BUT IT WOULD BE A GOOD SOURCE FOREIGN YOUR FACULTY AN GRAD STUDENTS. IN ORDER TO DO THIS SOMEONE SUGGESTED WE DO A SET OF SLIDES FOR PIs SO THEY CAN PRESENT THIS TO JUNIOR FACULTY GRADUATE STUDENTS AS AN OPTION. ALGORITHMS AND COMMON COMPUTER CODES SO WE MAKE IT MORE ACCESSIBLE TO PEOPLE WHO AREN'T JENNIFER STEVENS AND COMPUTING AND THE DATA IS WEIGH SOD THEY NEED TO TAKE THAT INTO CONSIDERATION. WHAT WE SUGGESTIONED IS DETAILED PROPOSAL OF ANALYSIS WOULD BE SUBMITTED TO N. THE STEERING COMMITTEE WOULD REVIEW IT FOR FEASIBILITY AND THE DATA WOULD BE RELEASED BUT ONLY TO SEER PI OR N PI HAS SPONSOR BECAUSE THEY UNDERSTAND THE COMPLEXITY OF NOT ONLY THE POC DATA BUT THE SEER DATA. WHICH IS IMPORTANT. SOMETIMES SMALL CELL SIZES THAT NEED TO BE CONSIDERED THAT THE SEER PI WOULD CONSIDER. WHEREAS JOE BLOW AT PODUNC UNIVERSITY MIGHT FAIL AT THAT. IN KEEPING WITH SOME OTHER PROJECTS WE FOUND MONTHLY CONFERENCE CALLS TO AT THIS CUSS THE PROBLEMS AND PROGRESS ARE VALUABLE AND KEEPS THINGS MOVING FORWARD BECAUSE PEOPLE ARE THEN THE THIRD MONDAY OF THE MONTH YOU'LL BE PUT ON THE SPOT ABOUT WHAT IS IT YOU HAVE DONE THE PAST MONTH WITH RESPECT TO THIS PROJECT. SO THE RELEASE OF THE DATA WOULD BE RESOURCE FOR JUNIOR FACULTY POST-DOC STUDENT ONLY SEER PI WOULD DEVELOP ALGORITHMS AND THE CONFERENCE CALLS. SO WE WANTED TO TALK COST CONTROLS FOR POC AND QOC AND THEY MIGHT BE VALUABLE FOR SEER AS WELL SO LOOKING AT NEW VARIABLES THAT ARE ADDED TO THE REGISTRY, HOW LONG IT TAKES TO FIND THESE NEW VARIABLES AND WHETHER THEY'RE THERE. AND THE QUALITY OF THE DATA THAT IS FOUND. WE TALKED ABOUT SENTINEL REGISTRIES DOING THE EXPRESS POC STUDIES, REVEAL IF PHYSICIAN VERIFY CASE BY REGISTRIES PERHAPS THE REGISTRIES THAT ARE HAVING A GREAT DEAL OF DIFFICULTY CONSISTENTLY WITH IF PHYSICIAN VERIFICATION MIGHT NEED TO BE DROPPED FROM THE P OBJECTIONC SINCE THE PRIMARY AIM OF THE TOC STUDIES, IS TO GET THE IF PHYSICIAN VERIFIED THERAPY. AND DEP IN THIS (INDISCERNIBLE) SUGGESTED THE ONE THING THAT IS MOST OFTEN ASKED FOR AND SEER DOESN'T HAVE IS RECURRENT AND HE SUGGESTED ONE REGISTRY WOULD DO A RECURRENCE REGISTRY. SO IN CONCLUSION, THE IF PHYSICIAN VERIFY CASE VARIED GREATLY BY REGISTRY. AND I THINK WE'LL HAVE A BETTER IDEA ONCE P WE LOOK AT THE BREAST, COLORECTAL AND LUNG DATA FROM 2010. WE DECIDED THAT CREATING A STEERING COMMITTEE IS PROBABLY A GOOD IDEA. THEY WOULD BE INVOLVED IN THE SITE AND IN FACT THE SELECTION. MATCHING THE DATA TO THE EARLY SUBMISSION IN FEBRUARY, A POSSIBLE POC QOC EXPRESS FOR PRESSING ISSUES. THEN ADDING THE DEMOGRAPHIC PUB CHARACTERISTIC VARIABLES THAT WOULD COME FROM FILES THAT IMS ALREADY HAS. BUT WOULD ADD ADDITIONAL INFORMATION. AND INCREASING THE NUMBER OF POC QOC USERS. SO THIS FINAL SIDE IS ABOUT THE TIME LINE FOR THE RRSS DENISE SENT THIS TO YOU LAST WEEK. THIS IS A REMINDER OF THE TIME LINE. DOES ANYONE HAVE QUESTIONS ABOUT POC QOC? BRENDA. >> YESTERDAY SOME OF US WERE IN A SENIOR STAFF MEETING AND ONE TOPIC CAME UP AS QUESTION, A RECURRENT, WE WERE LOOKING AT A RESEARCH PROPOSAL. AND RACHEL POINTED OUT THAT RIGHT NOW USING -- SOMETHING LIKE DISCHARGE DIAGNOSES OR SOMETHING, THEIR ALGORITHMS THAT HAVE BEEN ESTABLISHED IN THE LITERATURE, THAT ADDRESS CAPTURING RECURRENCE DATA FOR THE TOP 4. DO YOU SEE THAT AS SORT OF READY TO GO THROUGH A POC? >> I DON'T -- I THINK IN SEER MEDICARE THEY HAVEN'T BEEN ABLE TO CAPTURE -- >> WHAT I SAID WAS THE ALGORITHMS ARE NOT OPERATING WELL NOW. SO WHAT CAME IN WAS A GRANT PROPOSAL TO ACTUALLY UTILIZE DATA WITH MUCH MR. CXFC DETAILED DATA. THERE WAS A WHOLE PRM PROJECT, (INAUDIBLE)"sw COLLECTED A LOT MORE DATA (INAUDIBLE) AND THEN (INAUDIBLE) CANCER COLON CANCER LUNG CANCER STUDY ALSO (INAUDIBLE) SO THIS PROPOSAL WAS TO GO BACK AND LOOK AT (INAUDIBLE) AND DEVELOP A NEW ALGORITHM THAT WAS (INAUDIBLE) PRIMARY CANCER (INAUDIBLE). (OFF MIC) >> I THINK THAT WOULD BE GOOD. >> THIS WAS A GREAT MEETING. THERE WERE A LOT OF IDEAS BACK AND FORTH, STILL DEVELOPING THE SUMMARY OF THIS AND I CHALLENGE LYNN (INAUDIBLE) HOW FAR CAN YOU PUSH IT, WHERE CAN YOU REALLY GO THAT CAN HELP US -- I THINK WE HAD GREAT IDEAS. (INAUDIBLE) HAVING A SENTINEL REGISTRY OR (INAUDIBLE) IS AN INTERESTING THING SO WE'RE GOING TO BE WORKING ON THOSE IDEAS AND THEY TALK ABOUT THAT MORE. SO WE'RE HOPEFUL THAT WE WILL BE (INAUDIBLE) BASED ON THIS WORKSHOP AND EVALUATION (INAUDIBLE). >> THANKS, RACHEL. >> JUST A QUICK REALITY CHECK FOR SEVERAL, NOT SURE WHETHER IT'S SEVERAL OR MOST SITES, THERE'S NOT ALWAYS SCIENTIFIC CONSENSUS ABOUT WHAT RECURRENCE IS. I THINK YOU'RE TALKING ABOUT TRYING TO GET MEDICAL RECORDS AND MAKE DECISIONS FROM THAT. SO I THINK WE HAVE TO KEEP APPROXIMATE EYE ON THE SCIENCE AS WELL. SECOND THING, THE COLLEGE SAID THEY HAVE BEEN COLLECTING THIS FOR YEARS, WHY DONE WE QUALITY CONTROL WHAT'S IN THE NATIONAL CANCER DATABASE. WOULD BE ANOTHER INTERESTING PLACE TO GO TO GET THE DATA AND SEE WHETHER OR NOT YOU CAN QC THAT. >> (OFF MIC) >> I'M JUST THINKING FOR THOSE 65 YEARS AND OLDER, WE CAN GET INFORMATION MEDICARE LINKAGE. I DON'T KNOW WHETHER WE HAVE EVER COMPARED DATA COLLECTED THROUGH POC STUDY WITH DATA WE GET FROM ME CARE. >> YES, WE HAVE. >> WE HAVE. >> TWO DIFFERENT TIMES. THAT WAS PART OF THE DISSERTATION THAT (INAUDIBLE) DID AND I THINK SHE PRESENTED IT LAST YEAR. AND IT -- WE DID COMPARE MEDICARE DOES MISS SOME. BUT ON THE OTHER HAND, SEER -- I MEAN POC ALSO MISSED A FEW BECAUSE WE KNEW THAT WHERE THERE WERE MULTIPLE CHARGES FOR (INDISCERNIBLE) IN THE MEDICARE FILES, AND IT WAS MISSED IN POC EITHER THEY WERE CHARGING FOR SOMETHING NOT GIVEN WHICH IS UP LIKELY, OR POC JUST MISSED IT. BUT WE HAVE COMPARED. AND POC FINDS MORE OF IT THAN MEDICARE DOES. >> I DON'T KNOW WHETHER THE DIFFERENCES WERE LATE, COMPLETELY CONCLUSION, DIFFERENT CONCLUSION PRETTY MUCH SAME CONCLUSION. I'M THINKING WE WANT TO SAVE RESOURCES IF WE CAN GET INFORMATION LINKAGE WE STILL KEEP DOING THIS. WE MAY HAVE SOME WAY SO -- >> THAT WOULD BE CHEAPER WAY OF DOING IT. IS JOAN HERE? BUT THAT WOULD BE A POSSIBILITY BECAUSE THE CONTRACTS SAY YOU LINK IT TO MEDICARE. THEY ONLY MATCH EVERY TWO YEARS SO WE HAVE TO SEE WHAT THE CYCLE IS. >> I'M SURPRISED WE HAVE A HIGH PROPORTION CASE WE'RE NOT ABLE TO GET (INAUDIBLE) VERIFICATION SO I DON'T KNOW HOW IF WE WANT -- IF WE HAVE A GRADUATE STUDENT WANT USE DATA HOW DATA RELIABLE BECAUSE WE STILL HAVE CERTAIN PERCENT CASES NO IF PHYSICIAN VERIFICATION, NO COMPLETENESS. >> AND SOMETIMES YOU HAVE TO DROP CASES NOT VERIFIED. IT'S SEEMS TO BE A FEW REGISTRIES THAT ARE ALWAYS MISSING THE IF PHYSICIAN VERIFICATION SO WE MAY HAVE TO DROP THE REGISTRY. >> FUTURE YOU CONSIDERED DROPPING THOSE BUT I DON'T KNOW THAT YOU HAVE A THREAT IF YOU IF PHYSICIAN VERIFICATION LOWER THAN 18% THEN YOU OUT -- OR WE HAVE NOT DECIDE YET. >> WE HAVEN'T MADE ANY DECISIONS BUT WE WILL BE LOOKING AT THAT. BUT THESE WERE UNUSUAL SITES AND LIKE ONE REGISTRY HAVING VERY LOW PARENTAL -- >> THANK YOU. I WANTED TO COMMENT ON THE TREATMENT DATA FROM THE CLAIMS INFORMATION AND SO ONE OF THE ISSUES, I DON'T THINK ANY PARTICULAR DATA SOURCE IS EVER PERFECT OR 100%, ONE THING THAT HAPPENS FROM THE CLAIMS DATA IS IF A PATIENT RECEIVES A CHEMOTHERAPY FROM -- AS INPATIENT IN THE HOSPITAL, THERE MAY NOT BE A SPECIFIC CPT CODE OR INDICATION THEY GOT THE CHEMOTHERAPY SO IT MAYBE IN THAT WAY. SIMILARLY IF YOU CAPTURE DATA FROM PHYSICIAN OFFICES YOU MAY MISDATA FROM THE INPATIENT SETTING AS WELL. SO WE NEED THE THINK WHAT SOURCES COULD BE USED EFFICIENTLY, WHAT LIMITATIONS ARE AND HOW TO COMBINE SOURCES TO GET A COMPLETE PICTURE OF TREATMENT. SO NOTHING IS EVER PERFECT I THINK. >> I THINK THE AUDIENCE FOR THE RESULTS OF THIS THESE DATA ARE DIVERSE AN VERY INTERESTING AND VERY IMPORTANT AND TIMELINESS IS IMPORTANT SO IT'S TERRIFIC THE ABILITY TO GET THE RESULTS OUT THERE. BUT DO YOU HAVE A GLOBAL DISSEMINATION PLAN OR MARKETING STRATEGY FOR GETTING THE]4> RESULTS TO THE APPROPRIATE PEOPLE AND MAYBE THAT'S THE NEXT STEP. I THINK IT'S -- THE AUDIENCES ARE SO INCREDIBLY IMPORTANT AND DIVERSE, PROBABLY TOOK A LITTLE BIT OF THOUGHT. >> WE OFTEN TIMES PUBLISH IN JCO SO THAT IT'S OUT THERE. WE HAVE HAD ONE ASCO, YOU DID AN EDUCATIONAL SESSION. >> THERE ARE A LOT OF TECHNIQUES WHICH ONE CAN TRY TO ENSURE WHAT YOU THINK ARE SOME OF THE KEY AUDIENCES, ACTUALLY PAY ATTENTION. ONE OF THE MORE EFFECTIVE WAYS THAT WE HAVE USED, LESS SO IN THE POC AND QOC STUDIES IS TO GET A THOUGHT LEADER USUALLY MEDICAL IF PHYSICIAN HEALTH PROFESSIONAL ORGANIZATION TO JOIN US IN THE DEVELOPMENT OF A SPECIFIC ANALYSIS AND AS A CO-AUTHOR. AND IN THE PROCESS OF THAT, ALSO WORK WITH THAT INDIVIDUAL IN HOW WE CAN EFFECT PROFESSIONAL SOCIETIES BEING MADE AWARE OF THE RESULTS AND DOING SOMETHING WITH THE RESULTS. AND THAT'S A FEW EXAMPLES WHERE THAT WAS DONE WITH SOME N ONCOLOGISTS WHO HAVE A VERY' -- ACTIVE IN DIFFERENT HEALTH PROFESSIONAL ORGANIZATIONS. WE HAVE NOT NECESSARILY DONE THAT WITH ALL ANALYSES NOR WOULD IT MAKE SENSE TO BUT WE CAN DO IT IN A MORE SYSTEMATIC FASHION THAN TO DATE AND I THINK YOU HAVE TO START VERY EARLY IN THE PROCESS AS OPPOSED TO JUST AT THE END OF THE PROCESS AND MAKING DECISIONS ABOUT HOW YOU'RE GOING TO AFFECT CHANGE IN CLINICAL PRACTICE BY THIS WORK. SO THAT'S SOMETHING WE CAN PROBABLY STRATEGIZE A BIT MORE ON. THE OTHER COMMENT I WANT TO MAKE, LYNN ALLUDED TO THE FACT THAT -- AND DIDN'T SPECIFICALLY STATE BUT FOR PEOPLE UNDER AGE 65 THE CHALLENGE HAS ALWAYS BEEN ANY SOURCES OF DATA WE CAN REALLY WE CAN ACCESS FOR MORE INFORMATION OR AND WE TALK WAYS TO DO SEER BLOOD CROSS BLUE SHIELD LINKAGE OR SEER ARCETNA LINKAGE. IT'S POSSIBLE I THINK PEOPLE ARE THINKING MORE AN STRATEGIES AND HEALTH INSURERS ALSO RELATED TO AFFORDABLE CARE ACT AND HOW THEY DEMONSTRATE WHAT THEY DO WITH THE POPULATIONS THEY ENSURE. THAT WE HAVE AN OPPORTUNITY TO CONSIDER WHETHER THERE'S POTENTIAL FOR PILOTS. WITH THOSE ORGANIZATIONS THAT HAVE A HISTORY OF COLLECTING AND ANALYZING THEIR CARE DATA. WE DIDN'T SPECIFICALLY GET AT THAT IN THIS WORKSHOP BUT IT HAS BEEN A CHALLENGE, WE TALKED ABOUT THAT RELATED TO DOING MORE LINK DATA WITH SEER LIKE AKIN TO SEER MEDICARE. SEER MEDICAID IS A COMPLEX LINKAGE, IT'S DIFFERENT STATE BY STATE. THE DATA ARE NOT NEARLY AS SYSTEMATIZED IN TERMS OF COLLECTION AS MEDICARE DATA SO THAT HASN'T SEEMED PROMISING TO MOVE FORWARD SO WE HAVE TO THINK MORE ABOUT ISSUES OF PRIVATE INSURERS. >> I HAD TWO GENERAL COMMENTS. THIS ISSUE WITH PHYSICIANS NOT VERIFYING FOR SOME REGISTRIES, IN OURS WE HAD DECLINE IN IF PHYSICIAN VERIFICATION BECAUSE THEY OPTED TO HAVE REGISTRAR ACCESS ELECTRONIC MEDICAL RECORD AND DIDN'T FEEL THEY HAD THE TIME OR STAFF TO FILL OUT IF PHYSICIAN VERIFICATION FORMS. SO THEY -- THE NUMBERS COULD BE ARTIFICIALLY LOW FOR SOME REGISTRIES THAT ARE VERIFYING IT DIRECTLY THROUGH THE MEDICAL RECORD. I'M A LITTLE CONCERNED ABOUT THE ADVANCED TIME LINE WAS WE MAY NOT BE -- MAYBE YOU GUYS MIGHT HAVE WORKED THIS OUT WITH THE DELAYED REPORTING ALGORITHMS BUT WE'RE NOT GOING TO HAVE A COMPLETE CENSUS OF CASES DIAGNOSED IN DECEMBER THAT YEAR. JUST BASED ON PREVIOUS PRESENTATIONS FROM THIS MORNING, THERE MAYBE A SIGNIFICANT NUMBER OF CASES MISSING WHEN SAMPLING THAT EARLY. >> SEEMED TO BE ABOUTC¨ay 5.6% IS THAT RIGHT? OVERALL BUT IT MAY VARY WIDELY BY REGISTRY. >> MAYBE CLARIFY BECAUSE WE OTHER ONE THAT DOESN'T DO SO MUCH IF PHYSICIAN VERIFICATION, I THOUGHT IT WAS THAT ORION FEWED RECORDS. MAYBE WE CAN CLARIFY THAT. LINKAGES ARE GREAT BUT THOSE DIFFERENT PROVIDERS PRESCRIBE THERAPIES OFFERED AND A LOT OF TIMES YOU'RE IN A GIVEN SYSTEM THEY WILL DETERMINE WHAT THE THERAPIES THAT ARE AVAILABLE SO. SO YOU LOOSE SOME OF THE VARIABILITY IN WHAT'S BEING GIVEN IN THE COMMUNITY. KEISER TELLS YOU WHAT YOU CAN GET FOR CANCER X SO THAT'S GREAT IN THE KEISER DAY BUSINESS BUT YOU DO LOSE VARIABILITY AND WHAT'S GOING ON IN THE GENERAL COMMUNITY. IS >> IN THAT CASE YOU MIGHT -- IF WE CAN MATCH TO KEISER DO THAT BECAUSE IT WAS QUOTE SAVE US MONEY BUT GETS THE COMMUNITY WHERE WE HAVE TO GO OUT TO THE IF PHYSICIAN RECORD. >> ROSE MARY. IS >> IS THERE A TIME REGISTRIES SHOULD UPDATE THEIR DATA WITH THE POC? >> AFTER THE NOVEMBER SUBMISSION BECAUSE WE ARE LOOK AT THE INSURANCE DATA -- WELL THE INSURANCE DATA IS PROBABLY NOT INFLUENCED BUT THE TREATMENT DATA IN ORDER TO DETERMINE WHETHER SEER IS GOING TO RELEASE THE CHEMOTHERAPY DATA. SO KATHY, ANNIE AND DONNA ARE LOOKING AT THAT DATA. >> OKAY. >> THAT'S ONE OF THE OTHER THINGS IF YOU UPDATE YOUR DATA WITH THE POC DATA IN A YEAR YOU MAY GET A BOUNCEUP IN TREATMENT FOR BREAST CANCER PATIENTS. SO IN 2010 IT WILL BOUNCE A LITTLE BIT BECAUSE YOU'RE DOING IF PHYSICIAN VERIFICATION SO MAYBE GETTING MORE INFORMATION. I KNOW NOT EVERYBODY UPDATES. ANY OTHER COMMENTS? OKAY. [APPLAUSE] THANK YOU. >> SO WE ARE A LITTLE BIT AHEAD OF SCHEDULE. I WANT TO GIVE AN OPPORTUNITY IF PEOPLE HAVE QUESTIONS FOR ANY OF THE SPEAKERS THIS MORNING THEY CAN ASK NOW. THEN I THINK WE HAVE A CHOICE, WE CAN EITHER TAKE AN EARLY BREAK WHICH IS ALWAYS A GOOD IDEA OR WE ARE EARLY ENOUGH WE MIGHT CONSIDER MOVING UP PRESENT THAT'S PRESENTATION IF SHE'S WILLING SO THAT WE CAN MORE TIME FOR DISCUSSION BEFORE LUNCH. I THINK IT WOULD BE NICE PERHAPS MAYBE IF BRENDA COULD GO NOW UNLESS PEOPLE IN THE LOBBY FOR A BREAK SO WE CAN HAVE MORE TIME FOR DISCUSSION LATER IN THE MORNING. >> MAYBE I'LL JUST HOLE IT.k YOU SEE HERE IS THAT I'M GIVING A REPORT, SORRY TO BE THE LAST ONE FINAL HERE. I'M GIVING A REPORT FROM SURVEILLANCE SUMMIT AND TWO WORK GROUPS CREATED FOLLOWING THAT. I GAVE YOU AN UPDATE LAST TIME. SO LET ME SAY, I'M SORRY FOR ALWAYS BEING A BIT LATE. I'M GIVING THE ON BEHALF OF LIZ WARD WHO WAS THOUGHT SHE COULD COME P APPROXIMATE WASN'T ABLE TO SO I APOLOGIZE, I HOPE I CAN FULLY REPRESENT HER. THE POINT IS LIZ AND I SAT ON BOTH COMMITTEES MOST OF THE TIME SO I HAVE STAYED FAIRLY FAMILIAR BUT CLEARLY DON'T KNOW AS MANY DETAILS AS I DO ON THE ONE I CHAIRED. TO RECAP SURVEILLANCE OCCURRED ABOUT A YEAR AND A HALF AGO. I'M GOING BACK AND QUOTING SOME THINGS BECAUSE AS WE MOVE THROUGH THIS DISCUSSION YOU ARE GOING TO FINE OR I HAVE FOUND AND LEARNED THAT THERE'S A LOT OF DIFFERENCES IN VOCABULARY AND LOCATION TECHNIQUE SOMETIMES WHAT APPEARS TECHNICAL SO SOME OF THAT IS MY LEARNING OVER THE PERIOD. AND SOME WAYS LIZ TOO AND OTHERS ON THE COMMITTEE. SO ESSENTIALLY OUR CHARGE BACK THEN IS THIS WAS SET UP TO BEGIN A DIALOGUE BETWEEN CLINICAL AN SURVEILLANCE COMMUNITIES ON STAGE DATA. BECAUSE WE WANTED TO HAVE IT BOTH COMPARABLE AND WE WANTED IT TO BE SUPPORTIVE OF OUR NEEDS. OUR NEEDS ARE DIFFERENT. AT THE MOMENT THANK YOU THE AJCC AND GROUP EFFORT THE GOVERNANCE COMMITTEE IS THE FORMAL WAY WHICH INFORMATION GETS BACK TO THE AJCC AND MANY OF US PARTICIPATE ON THAT COMMITTEE. CHRISTIE, I GUESS YOU'RE OUR -- THERE'S A REPRESENTATIVE. NOT SURE IT'S CHANGING OVER TIME. SO YOU WILL CLARIFY LATER ON BUT THE SURVEILLANCE GROUP HAS A REPRESENTATIVE AND THE GOVERNANCE COMMITTEE HAS A REPRESENTATIVE ON THE EXECUTIVE COMMITTEE OF AJCC SO WHAT'S A PROCESS GOING ON. STAGEING IS CHALLENGE. THERE ARE MANY SYSTEMS, THE DATA ELEMENTS AND NOMENCLATURE IS NOT HIERARCHICAL. THEY CHANGE OVER TIME. EVERY TIME WE CHANGE IT REQUIRES SOME KIND OF IN GENERAL WE'RE GETTING MORE INFORMATION. IT TRAINING, EVERYONE NEEDS TO ANALYZE THE DATA AND THE SOURCE OF THE INFORMATION CAN CHANGE AND THE QUOTE WE HAVE TAKEN IN THE SEER PROGRAM IS IT MAY REQUIRE MULTIPLE FIELDS IN ORDER FOR US TO GO FOR DATA ELEMENT APPROACH TO THE RIGHT STAGE. THIS IS A SLIDE I THINK SOME OF YOU HAVE SEEN, IT'S ONE WE PRESENTED T THE SUMMIT. AND FOR THOSE OF YOU THAT ARE FAMILIAR WITH SEER, I THINK YOU WILL KNOW THAT AJCC SETS THE STAGE DEFINITION, SEER HAS ALWAYS TAKEN AN APPROACH OF CAPTURING SOMETHING CALLED EXTENDED DISEASE WHICH IS EQUIVALENT TO STAGE AND WE USE THESE DATA ELEMENTS TO TRY TO GENERATE A STAGE CATEGORY. THESE ARE DERIVED STAGING BASED ON EXTENT OF DISEASE OR COLLABORATIVE STAGE. WHAT I HAVE SHOWN HERE IS TIME LINE AND LYNN PUT THIS TOGETHER, TIME LINE WHICH WE TALK ABOUT HISTORIC STAGE, SUMMARY STAGE, DIFFERENT VERSIONS OF AJCC,ND AS WE MOVE TO THE ONE SORT OF CAUSED EVERYONE TO HAVE HEART FAILURE WAS 7TH ADDITION AJCC AND APPROACH TO COLLECT DATA ELEMENTS FOR DERIVING STAGE. WE DID THIS WITH THE SIX ADDITION WITH 2004 CASES SO WITHIN THE SEER PROGRAM AN ACROSS I THINK THE BROADER COMMUNITY, WE HAVE BEEN DOING THIS A FAIR AMOUNT OF TIME. IS KEVIN HERE? OKAY. LET ME JUST SAY, EVEN THE BEST PEEP LEARN SOMETHING NEW ALL TIME. THEY LEARN IT FROM LYNN. SO ON A RESENT CALL TALKING SEER 77 NOTICE THE TIME LINE SAYS THAT'S APPLICABLE TO CASES DIAGNOSED IN (INAUDIBLE). SOMEHOW ALONG MANY OF US WHO WERE NOT THERE IN '77, SOMEHOW THINK THAT THAT GOES BACK ALWAYS TO 77. SO SOMETIMES CODING MATERIAL HOW THEY CAME OUT HOW WE USE THEM, THERE'S IMPORTANT INFORMATION IN THE FACT -- IN SORT OF THAT AND SOMETIMES WE NEED TO SEE INITIAL (INAUDIBLE) BUT IT REALLY LINK Electronics, Inc. MODEL NUMBER: PDR-885 SOFTWARE VERSION: 3.0A THAT'S INTERESTING FOR ME -- WHERE DO I GO? ALL RIGHT. SO BACK TO VOCABULARY. WHEN WE'RE WORKING WITH INFORMATICS, TALKING WITH ONE ANOTHER, TALKING AMONG OURSELVES, ONE THING I ALSO PUT THIS TOGETHER FOR AGAIN PARTLY MY OWN BENEFIT, YOU WILL SEE AS I GO THROUGH THIS TALK, I HAVE AL THEMED TO INTEGRATE WHAT LIZ PUT TOGETHER WHAT I P PUT TOGETHER WITH WITH COMMITTEE ACTIVITIES. IF IT LOOKS DISJOINT IT'S NOT INTENDED TO BUT I THINK REFLECTS A LITTLE BIT THE NATURE OF THE CONVERSATION AND A PROCESS THAT'S GONE ON FOR THE LAST YEARS AND A HALF. I CALL THIS A VOCABULARY STATE. STAGE MAYBE WHATEVER THE STANDARD S WE MAY SAY STAGE WHAT WE MEAN, YOU FIND IF I'M IN MEETINGS I SAY WHAT STAGE ARE YOU TALKING ABOUT, HOW DO YOU DEFINE IT? WE GET OTHER INTERNATIONAL THEMES AS AROUND RECENTLY AND WHEN THEY SAY STAGE THEY SAY (INAUDIBLE) THAT HAS MORE DETAIL TOO. IS IT CLINICAL, IF CLINICAL ENVIRONMENT IT'S TN ANDN, THEN WHEN WE TOOK THE THIS TOPIC ON TO THE SUMMIT WE ALMOST ALWAYS GOT INTO SOMETHING CALLED SITE SPECIFIC FACTORS. BECAUSE THAT'S WHERE WE HAD A LOT OF NEW DATA ELEMENTS. AND WHAT YOU SEE HERE, THIS IS MY EFFORT TO SAY THESE SITES SPECIFIC FACTORS SOMETIMES ARE NEEDED FOR CALCULATING THIS DERIVED STATE, SOMETIMES CLINICALLY IMPORTANT VARIABLES LIKE HER OF-2 AND SOMETIMES THEY MAY BE SOME OTHER SPECIFIC DIMENSION OF THE TN ANDM CATEGORY AND IN OTHER CASES THEY RELATE TO BACKWARD COMPATIBILITY WHICH IS IMPORTANT TO SOME OF US. SO HERE IS YOUR CLUE. IF YOU SEE A SLIDE THAT LOOKS THIS COLOR IT'S LIZ. IT'S HER CALL ELEMENT REVIEW CRITERIA. OUR NAMES HAVE CHANGED. NEW WORD ELEMENT REVIEW OR CRITERIA, THAT'S LIZ. SO HERE IS HOW SHE ARTICULATED THE PURPOSE WAS TO DEVELOP CRITERIA FOR RELEVANCY AND INCLUSION OF DATA ELEMENTS INTO A COLLABORATIVE STAGE APPROACH. NOW, I'M TRYING TO BE LIKE YOU I DATE SOMETHING, I TOOK HER SLIDE AND WHEN I ADDED SOMETHING JUST AS A FLAG, YOU SEE IT IN RED, NOT BECAUSE IT'S THE MOST IMPORTANT, IT WAS JUST MY WAY TO SAY OH, LIZ, I CHANGED A FEW THINGS AND I DIDN'T HAVE TIME TO GET BACK TO YOU BECAUSE I ONLY GOT THESE A DAY OR SO AGO. TO LET YOU KNOW I BELIEVE I'M SAYING THINGS AND MODIFIED IN WAYS THIS DON'T CHANGE MEANING BUT TO LET YOU KNOW THIS IS THE CLUE. SO HER OBJECTIVES AS SHE'S NOW TRYING TO SUMMARIZE WHAT THE COMMITTEE DID IS TO DEVELOP DOCUMENTED EVIDENCE BASED CRITERIA FOR NEW DATA ELEMENTS ELEMENTS/SITE SPECIFIC FACTORS FOR COLLECTION. SHE WANTS NOMENCLATURE, DEFINE THEM IN A WAY THAT THERE'S CORE OPTIONAL AND EMERGING DATA MR. ELLIS: S AND -- ELEMENTS AND THEN TALKING THE NEED FOR FEASIBILITY OR PILOT STUDIES. THIS IS WHERE WE GOT TO OVER TIME. I DON'T THINK THIS IS HOW WE STARTED IN THE COMMITTEE. IF YOU TAKE THE EVALUATE AND SIMPLIFY, EVERY FEW DAYS THE EASE COMMITTEE BECAUSE I WAS LOOKING FOR SOMETHING THAT MAKES ME FEEL BETTER. OUR FIRST FOCUS CAME FROM THAT ORIGINAL MEANING, WE NEED TO USE EXISTING ELEMENTS TO CRITERIA TO EVALUATE THE DATA. AS WE FOUND, THERE'S NO ESTABLISHED CRITERIA. KEVIN PUBLISHED A REPORT WITH VERSION 1, WE TALK ABOUT THAT A LOT. BECAUSE I'M QUANTITATIVE WE TALK ABOUT PRAGMATIC CRITERIA OR DATABASE ASSESSMENT APPROACH AND OTHER THINGS BUT SORT OF THE FEATURE THE WAY A LOT OF ACTIVITY SIMPLIFY WORK GROUP IS TO TAKE THE PRAGMATIC APPROACH. IF YOU'RE LOOKING AND YOU'LL SEE AS WE MOVE ALONG, IF YOU'RE LOOKING AT PROGNOSTIC FACTORS, SOMETIMES THESE SITES SPECIFIC FACTORS CAME IN AS PROGNOSTIC OR BIOMARKERS, THERE'S COMMITTEES THAT SET STANDARDS, QUITE COMPLEX. SO THESE SOURCES HAVE BEEN LOOKED AT, SOME IS BEING BROUGHT INTO DISCUSSION WITHIN THIS FORUM. ALSO THE AJCC HAS A COMMITTEE OF BIOMARKERS, THEY HAVE A TITLE, I CAN'T REMEMBER BUT THEY HAVE WORK GROUP. SO IT'S NOT AS IF PEOPLE AREN'T THINKING ABOUT THIS AND THIS' EXISTING RATE LITERATURE BUT THE POINT WITH DISCUSSION SO FAR IS WE'RE AT THE INTERSECTION WITH REGARD TO THE SURVEILLANCE AND REGISTRY COMMUNITY. SO HERE I HAVE LAID OUT WHAT THESE PRAGMATIC CRITERIA HAVE BEEN. AND SOME GETS INTO ARE THE DATA AVAILABLE AND USING THE 2010 CLASS DATA WE HAVE AND HOW WE'RE USING ANALYSES AND I THINK THROUGHOUT TODAY THIS MEETING THERE WILL BE ADDITIONAL DISCUSSIONS ABOUT THAT PERSPECTIVE. MANY OF THE ONES THAT HAD TO DO THAT SORT OF DO WE CONTINUE COLLECTING THEM HAD TO DO THEY GOT IN THERE BECAUSE OF CLINICAL RELEVANCE. WHAT IS A SITE SPECIFIC FACTOR, HER WAY OF TRYING TO ARTICULATE WHAT WE DID BEFORE, AS WE WENT LIEU THE DISCOVERY PROCESS, I THINK YOU KNEW ALONG THE WAY, IN VERSION 2 SITE SPECIFIC FACTORS INCLUDE A NUMBER OF ELEMENTS, ONLY A FEW ARE (INAUDIBLE) BACK TO CLINICAL RELEVANCE. BUT SOME ARE ADDED IN FOR CLINICAL RELEVANCE BECAUSE OF WHAT HAPPENED WITH AJCC AND DOCTORS WHO PUT IT TOGETHER. THEY FELT IT RELEVANT TO PROGNOSTIC PREDICTIVE FORMAT. WE FOUND A LOT OF DEVILS IN THE DETAIL, SOME OF THESE DATA ELEMENTS ARE USED IN A WIDE VARIETY OF WAYS. THE TM AND M, THEY MAYEN CONTAIN DETAIL ON DIFFERENTIATION. THEN THAT'S THE WHOLE THING ON BIOMARKERS MOLECULAR MARKERS AND AS WE GET SOMEWHERE ALONG THE WAY AND ALSO WE FIND SOME OF THESE DATA ELEMENT SITES THAT FACTORS ARE USED FOR WHAT I CALL DATA MANAGEMENT, MAINTAINING LEGACY DATA. SOME WAY WE HEARD JENNIFER YESTERDAY TALKING WE PUT A FLAG OUT THERE. SOMETIMES THEE ARE THINGS I THINK OF AS FLAGS TO HELP US UNDERSTAND THE DATA THAT WE HAVE. SO I AED THAT BECAUSE THAT'S THE WAY WE SEE SITE SPECIFIC FACTORS. HERE ARE STATS ON IT. I ADDED A FEW MORE SO WHEN WE THINK OF SITE SPECIFIC FACTORS THERE ARE ONLY 40 NEEDED FOR GETTING TO STAGE BUT WE HAVE 113 AT SEER AND COMMISSION -- COLLEGE COMMISSION ON CANCER WE WANT TO COLLECT BECAUSE THEY'RE CLINICALLY RELEVANT. THEY DEFINED AN CREATED OVER 400 MORE. SO A LOT MORE DATA ELEMENTS OUT THERE THAT ARE NOT NECESSARILY REQUIRED BUT I CAN SAY THEY ARE IN THOSE DATA SYSTEMS CAPTURING THEM. SOME PEOPLE AS WE START LOOKING AT THE OTHER THINGS THAT HAPPENED WITH 7TH EDITION IS WE HAVE GOT 25, 30 CANCER TYPES THAT WE REPORT ON IN STATISTICS. BUT IF YOU WERE TO GO LOOK AT HISTOLOGY OR TYPOLOGY ANATOMY AND BIOLOGIC FEATURES WE HAVE 30 COMBOS. IN THAT PARTICULAR SCHEME SET OF VOCABULARY WE HAVE 750 TYPES OF CANCERS IDENTIFIED AND IT RELATES TO SPLITTING OUT. THIS ALSO CREATE AD FEW PROBLEMS WITH REGARD TO CSC-2. ONCE YOU GET INTO THINGS SOMETIMES YOU HAVE TO GO LOOK UP SOME TABLES TO GET MORE SPECIFIC INFORMATION. SO A LOT OF DETAIL, FAIRLY COMPLEX. SO LIZ GOES THROUGH IN HER ASSESSMENT, SEVERAL PROBLEMS. FIRST IS AS THE GROUP -- CTRs, THE GROUP WORKING ON MAPPING THEY OPERATED THAT IT WAS IN THE 7TH EDITIONING THE WE SHOULD PROBABLY TRY TO CAPTURE IT, DEFINE IT AND CAPTURE IT. HE'S NODDING YES, YES, WE NOW THINK THAT WAS PROBABLY A MISTAKE. BUT THOSE WHO SPEND TIME CAPTURING DATA, YOU THAT GROUP WENT AND TRIED TO DEFINE WHEN IT WASN'T DEFINED WHEN THERE WEREN'T STANDARDS, THEY DID A GREAT JOB. THEY DID A HEROIC JOB. THEY WENT BEYOND JOB DESCRIPTION. BUT IT SLOWED THEM DOWN GETTING SOME OF THAT BACK TO US. ESSENTIALLY AS WE HAVE IN OUR OWN DISCOVERY, THE PROCESS OF AJCC IS THEY DID NOT HAVE AN EVIDENCE BASED SYSTEMATIC WAY WHICH THEY ACTUALLY WROTE WHAT WAS THERE. AND THEIR PROCESS IS NOT NECESSARILY CONSISTENT OVERALL THE CANCER SITES. THAT IS NOT TO BLAME THE AJCC AND THEIR PROCESS. BUT THEY TOO HAVE LEARNED FROM THIS PAINFUL EXPERIENCE SO IF YOU THINK YOU'RE NOT HAVING IMPACT ON THEM, I DO BELIEVE, I DON'T KNOW HOW IT WILL WORK, BUT THEY HAVE LEARNED WE HOPE BETTER THAN ON 7TH. THEY LOOK TO THE 8TH THEY ARE ACTUALLY TALKING ABOUT CRITERION STRATEGY AND A PROCESS AND FORMAT THAT'S CONSISTENT ACROSS THEIR COMMITTEE. SO I'M HOPEFUL WE WILL NOT TOTALLY GET IN THE SAME PLACE WE ARE NOW. IN THE FUTURE. ANYWAY, THAT WAS THE WAY IN WHICH ALL OF US -- LIZ STATED THE PROBLEM. AND WHETHER THESE SOLUTION. WE NEED A REVIEW PROCESS FOR ANY SITES THAT FACTOR ACTUALLY THINK IT GUESS BEYOND IT AND THIS IS PASSED UP THROUGH THE GOVERNANCE COMMITTEE. THERE'S A FORM, LIZ CIRCULATED THAT FORM. WE HAVE REVIEWED IT, IT HAS CHANGED ABOUT SEVEN TIMES BUT NONETHELESS IT DOES EXIST. AND IT CAPTURES INFORMATION THAT WILL BE NEEDED AND MAKING DECISION ABOUT WHAT TO ADD, HOW THE ADD IT AND HOW IT GETS TURNED INTO ANY WAY OF MAPPING IT TO GET TO THESE DERIVED STAGE. AND HERE ARE SOME QUESTIONS THAT ARE GOING TO BE SUGGESTED THAT HAVE TO BE ASKED AND PROPOSING ELEMENTS,'S THE CLINICAL UTILITY. WHICH AGAIN GETS INTO THE STRUCTURE, THE SCHEMA, DO YOU NEED IT FOR DERIVING STAGE, DOES IT RELATE ONLY TO A SUBTYPE OF CANCER. AND OR DOES IT BELONG TO A SUBTYPE OF PATIENTS. AS WE LEARNED OFFER TIME, NOT ALL DATA ELEMENTS ARE NEEDED FOR ALL PATIENTS. SOME MAYBE IF YOU'RE ADVANCED STATE, YOU NEED THAT LEVEL OF DETAIL. ANSWER QUESTIONS BEFORE YOU GET ONE APPROVED. WHATS WITH ALSO LEARNED YOU KNOW BETTER THAN ME, FOR THE LABORATORY ONES AND HER-2, IT'S VERY EVERYBODY WANTS IT. WE HAVE 16 TO 20 WAYS WE'RE TRYING TO CAPTURE ALL THE FLAVORS, THE VALUES, POSITIVE, NEGATIVE ALL POSSIBLE -- I THINK WE TOOK AN INFORMATICS APPROACH TO GET THERE. EVEN SAYS IT'S IMPORTANT BUT IT'S ALSO KIND OF BEEN A PROBLEM. SO HERE WHAT WE'RE LEARNING AND LEARNING LIEU CTC, THE MEASUREMENT IS NOT STANDARD OUT THERE, THE LABS ARE NOT NECESSARILY USING IT IN THE STANDARD WAY. WHEN YOU GO AND REPORT IT HAS MADE THAT DIFFICULT AND WHAT THE SPECIMEN WHICH IT'S MEASURED SO A LOT OF DETAILS ARE NOT -- THE WORLD IS NOT READY FOR IT TO BE STANDARD. WHEN IS IT PERFORMED? WHEN SHOULD THE REGISTRY CAPTURE BECAUSE NOT EVERYTHING IS AVAILABLE AT THE BEGINNING. IS THERE ONE -- THESE ARE STANDARDS FOR IT AND I WON'T P BELABOR THAT POINT MUCH MORE. T THIS FORM IS DEVELOPED, WE TALKED ABOUT IT, IT'S GONE TO GOVERNANCE COMMITTEE, LIZ IS REFINING IT. IT WILL COME BACK, TO THE GOVERNANCE COMMITTEE FOR DISCUSSION. WILL PLAY ROLE IN 8TH EDITION DISCUSSIONS. HERE IS WHERE THE PROBLEM COMES. PRAGMATIC ME. SUGGESTION IS FOR FUTURE ITEMS, IT DOESN'T SAY WHAT DO WE THE HERE AND NOW. SOME ARE GETTING READY FOR 2013 CASES. WE HAVE SOMETHING LIKE FOUR YEARS OF THIS BEING OUT THERE IN PLAY BY THE COMMISSION, BY US. SO I WILL TELL YOU WE SAID IT COULD BE BUT WE DIDN'T MAKE RECOMMENDATIONS. SO YOU CAN THINK WE DIDN'T DO OUR JOB. LARGE NUMBERS. THE SECOND PROBLEMS IS HERE IS ACTUALLY BEEN KIND OF A PERSPECTIVE, SO MANY DATA ELEMENTS OUT THERE, WE MADE AN EFFORT TO DEFINE AND COLLECT THEM. WE'RE SEEING THAT'S BEEN A CHALLENGE. THE GUIDANCE IF IT'S NOT THERE YOU DONE HAVE TO WORK HARD TO GET IT. THAT IS WHAT EVERYONE SAID IN THE COMMISSION. AS WE LOOK AT DATA COMPLETENESS OR QUALITY, HAVE WE COMPROMISED A LOT OF DATA BY GOING AFTER SO MUCH WHICH A LARGE PORTION MAYBE MORE INCOMPLETE. I THINK THAT IS TAKEN SERIOUSLY. WE DONE HAVE AN ANSWER TO IT BUT IT IS A PROBLEM. ALONG THE WAY WE HAVE HAD A LOT OF DISCUSSION, SOME HEATED, SOME PASSIONATE, SOMEHOW DO YOU GET FROM TO THE POINT LET'S DROP WHAT WE DON'T NEED. THEY'RE OBSOLETE, SOME IN THERE FOR INFORMATICS STANDPOINT. SO WE HAVE AGREED TO DROP A NUMBER OF THEM. THE OBSOLETE AND SOME OTHERS. BUT THE QUESTION IS, SHOULD WE DROP THOSE ONLY -- THE QUESTION IS WHAT ABOUT THOSE CLINICALLY SIGNIFICANT ONES THAT WE COLLECTED. BUT THE QUESTION IS, IF SOME THAT DONE FIT THE CATEGORY THAT WE HAVE SAID THEY'RE STILL IN, AND ONES WE'RE GOING TO DROP. IF YOU WANT TO KEEP ONES CONSIDERED FOR DROPPING YOU HAVE THE MAKE THE CASE FOR IT. THAT GETS YOU INTO THE DROPPING OF IT AND WHAT DO WE MEAN. WE HAVE HAD OTHER ANIMATED DISCUSSIONS ABOUT WHAT DROPPING MEANS. IT COMES DOWN TO WHEN YOU DROP IT, WHEN DO YOU DROP IT AND WHAT DATA SYSTEM DO YOU DROP IT. DO YOU RETAIN THE ONES YOU HAVE. SO HOW DO YOU PROCESS IT FROM A DATA MANAGEMENT SYSTEM AND WILL VENDORS DO IT IN SYNC. SO KIND OF REAL WORLD OPERATIONAL PIECES WHERE I THINK SOME OF US HAVE THOUGHT THEY THERE'S STILL THE CHALLENGE. SO THERE ARE RAINBOWS AN SUN SETS AND THE SUN SET IS SOMEWHERE ALONG THE WAY THESE TWO COMMITTEES HAVE SAID YOU HAVE DONE ENOUGH. WE DONE WANT TO FORMALLY DO ANY MORE BUT IRENE AN LIZ IS ONE THAT GOT THERE FIRST BUT THE I I'M READING HER SLIDE AND HE SAYS WE'RE STILL CONTINUING TO WORK. SO I THOUGHT SHE SPOKE OUT OF BOTH SIDES OF HER MOUTH BUT THE REAL POINT HERE IS IT FORMALLY ENDED, OTHER ACTIVITIES ARE ONGOING SO I READ IN THAT STANDPOINT. THAT COMMITTEE IDENTIFIED 25 OF THE TOP CANCERS OR CONTINUING TO THINK ABOUT DEFINITION, HOW YOU ASSESS AND WHAT ARE DENOMINATORS, MANY ARE CONTINUING THE LOOK AT THE EXISTING DATA AND WE'RE TRYING TO WORK COLLABORATIVELY AND SHARE RESULTS AND MANY OF YOU HAVE BEEN DOING HEAVY LIFTENING THAT ARENA. HERE ARE QUESTIONS ABOUT THE FACT THAT WE KNOW A FAIR AMOUNT IS INCOMPLETE, IS IT INCOMPLETE WHEN WE LOOK AT THAT BUT IS IT OKAY FOR EPI RESEARCH. IS IT OKAY FOR THE CLINICAL RESEARCH. IS IT SOMETHING THERE BECAUSE ONE THINKS IT MIGHT BE IMPORTANT IN THE FUTURE. OR WE THINK IT'S NEEDED FOR TREND DATA. WHENEVER WE GET TO DROP IT WE GET PUSH BACK BECAUSE THESE ARE FACTORS AND THEY -- WE NEED TO CONSIDER THAT FOR KEEPING THEM IN. SO PART OF THE LIVELY DISCUSSION. SO A LOT OF DISCUSSION HAS TO DO WITH BACKWARD COMPATIBILITY. WE'RE NOT (INDISCERNIBLE) TO RETAIN IT. THE SEER PROGRAM SAYS YES OR WE THINK WE SAY YES BUT THE QUESTION IS, WHICH SAVING SCHEME, HOW FAR BACK AND AS WE MOVE TO SIMPLIFY UNTIL YOU GET TO THAT ANSWER, YOU ARE NOT ABLE TO THINK ABOUT WHERE YOU DO SIMPLIFICATION. THERE'S THE OTHER PRACTICAL THING THAT THE AL ALGORITHM NEEDED AND DEVELOPED, IF WE MAKE CHANGES THERE IT HAS TO BE CHANGE, TEST THED AND PUT INTO THE SOFTWARE. AND THEN THROW IN SOME OTHER THING WITHIN ALL THIS DISCUSSION, WE HAVE HAD IT THANK YOU ARCJCC, WE HAD IT INTERNATIONALLY. THE UICC PUT THAT (INAUDIBLE) FOR THE INTERNATIONAL GROUP. THE DEAF THE ANYTHINGS, THEY TRY TO BE COMPATIBLE WITH AJCC AND THEY HAVE TALKED ABOUT A A -- THEY RECOGNIZE THERE'S DIFFERENCES IN THE TWO THINGS, THEY TRIED TO COME TOGETHER. NOW AS THEY THINK ABOUT THE 8TH EDITION THEY CALL IT THE LEXICON PROJECT. THEY LOOK TO TRY TO BE IN CONVERSATION EARLIER THAN LATER AND THE OTHER THING THEY'RE TALKING ABOUT, PART IS IN THE INTERNATIONAL ARENA AS WELL, CAN WE THINK ABOUT SIMPLE CATEGORIES FOR STATE, IT INCLUDES THE CONCEPT OF HIERARCHY AN NESTING, WHEN LOOKING AT ANATOMY, I DON'T KNOW WHERE THIS IS GOING TO GO, I THINK THAT CONVERSATION AS FAR AS I KNOW WILL CONTINUE ON AND HOPEFULLY WE WILL BE PART OF IT IN SOME WAY. ALREADY. THE OTHER ONE, CAN WE SIMPLIFY AS LET'S NOT WORRY ABOUT COLLECTING ON ALL THE CANCERS, I COULDN'T GET CONSENSUS, CERTAINLY CANADA HAS NOT DONE IT FOR ALL CANCER SITES, JUST MADE A POINT HERE AS WE WHEN THROUGH THAT CONVERSATION, CERTAINLY THE TOP FOUR SITES OR 50% OF THE CASES, NEXT FIVE TO TEN GIVE ANOTHER 30% OF ALL CASES. ANOTHER TEN SITES GIVE 10% SO THERE'S ANOTHER 10% OF THOSE CASES THAT COVER A LOT OF DIFFERENCE CANCER AND IF YOU'RE GOING TO FOCUS ON RELATIVELY RARE SOME OF THE REMERGING THINGS LIKE THAT AS HE WILL WELL AS HPV WHICH IS IMPORTANT TO A LOT OF CONVERSATIONS, OTHERS SAY WE NEED TO KEEP IT FOR THAT SO I CONGE ANYBODY TO TELL ME WHERE TO DRAW THE LINE BUT PUT NUMBERS ON IT, THAT'S WHERE WE GOT. THE OTHER TO ACKNOWLEDGE A FAIR AMOUNT OF WORK, NOT ONLY LYNN, KEVIN, OTHERS, I'M FORGETTING SOME PEOPLE RIGHT NOW BUT AS WE THEN THIS WORKING GROUP AS DATA COMES IN WE TRY TO DEVELOP AN SHARE WAYS TO TABULATE APPROXIMATE LOOKED OUR DATA. SO YOU CAN USE IT IN SEER STAT, KEVIN DID IT FOR (INAUDIBLE) WITH THE COMMISSION THAT'S BEEN SHARED WITH CANADA. THEY'RE RUNNING THAT SO THE POINT HERE IS UP TO MAKE SURE YOUR ALGORITHMS OR YOUR CODE LEAD YOU TO THE SAME CALCULATIONS IF COMPARING IT SO WE'RE SHARING ALL THAT AN CHRISTIE DISTRIBUTED TO NPTR AN CANADA AND OTHERS HAVE BEEN LOOKING AT IT SO MY POINT IS WE HAVE MADE AN EFFORT TO PROVIDE TOOLS SO IF PEOPLE WANT TO LOOK AT YOUR OWN NOT IN THE SEER FAMILY YOU CAN DO IT. SO THAT'S AVAILABLE. I THANK KEVIN AND HIS STUDENTS FOR HELPING ON THAT. AND BACK TO LIZ, SHE WILL SAY THE GOVERNANCE COMMITTEE ADOPTED THIS APPROACH REGARDING NEW SITES SPECIFIC FACTORS. AND TO REMOVE THOSE NOT REQUIRED. THEY WILL BE USING THE PROCESS. AGAIN, LIZ FUNCTIONS IN A HIGHER LEVEL PLANE THAN I DO SEER STAT AND A BUNCH OF OTHER THINGS WANT TO SAY OKAY, HOW ARE WE GOING TO DO IT, SORT OF BACK RUNNING OUR HOUSEHOLD AND THAT'S THE SEER PROGRAM. THE OTHER POINT IS A DECISION IS THAT THE COLLABORATIVE STAGE GROUP GOVERNANCE WHATEVER ARE GOING TO PUT NO OR LIMITED RESOURCES TO SUPPORTING THINGS DROPPED AND I DON'T KNOW WHETHER CHRISTIE IS SQUINTING OR NOT BUT A QUESTION IS OH REALLY, WE HAVE TO DEFINE THAT AND WHEN AND WHERE AN TIME LINES AS WELL AS IMS. HERE IS PATTING US ON THE BACK THOUGH WE HAVE TAKEN A LOT OF CRITICISM. SHE WOULD SAY THE DATA ELEMENT AND THE E VALUE -- SIMPLIFY COMMITTEE HAS LED TO BETTER BROADER UNDERSTANDING AMONG MANY OF US OUTSIDE THE CTR COMMUNITY. AND WE'RE -- WE BELIEVE THIS WHOLE DIALOGUE CONVERSATION AND ALL THE CONFERENCE CALLS JOINED IN HELPS A BETTER APPRECIATION OF THIS APPROACH. AND COMPLICATED AND THE OTHER THING IS WE THINK WE ALWAYS BELIEVE WE DO HAVE TO HAVE SOME KIND OF SUSTAINABLE PROCESS FOR CHECKING STAGE DATA FOR BOTH SURVEILLANCE. BUT THE BOTTOM LINE IS WE'RE GOING TO HAVE TO GIVE A LITTLE. WE HAVE AT LEAST GOT TON THE POINT WE HAVE TO MAKE CHANGES AND EVERYTHING IS GROWNING BECAUSE WE SAID NO MORE CHANGES. BUT IF CHANGES ARE TO REDUCE IT, MAYBE YOU'LL TAKE HEART THAT THAT IS A POSITIVE THING. THE OTHER STEP IS TO LET YOU KNOW THAT THERE ARE A NUMBER OF PEOPLE WORKING ON THE 8TH EDITION. WE BELIEVE THIS IS GOING TO INFORM THAT PROCESS. AND I HAVE TALKED ABOUT THE LEXICON PROCESS. I WANT TO THANK MANY FOLKS WHO PARTICIPATED ON THESE CONFERENCE CALLS. WE HAVE THEM EVERY MONTH, EF TWO WEEKS. NOT EVERYBODY CAN BE ON IT BUT THIS IS LIZ'S COMMITTEE. AND GEORGIA WAS A SIGN WRITER THAT WAS PROVIDED -- WELL, GEORGIA HELPED IMMENSELY WITH PUTTING THOSE MINUTES TOGETHER. THIS IS THE SIMPLIFY COMMITTEE AND OF COURSE ALREADY RECOGNIZED LIP AN KEVIN AND OTHERS, LOUISIANA WHO STARTED LAST TIME PRESENTING DATA, THEIR ASSESSMENT OF LOUISIANA DATA CONTINUES TO CONTRIBUTE TO THIS ACTIVITY. THEN MARY KAY WASHINGTON, PATHOLOGIST VANDERBILT AND SHE IS CO-CHAIR OF THE 8TH EDITION. SO WE HAVE HAD LIMITED CLINICAL INPUT BUT SHE'S A TROOPER AND SOMEONE WE WANT TO MAKE SURE WHENEVER WE CAN ENGAGE HER SHE ALWAYS IS VERY HELPFUL IN TALKING ABOUT THE DEFINITIONS, STANDARDS OUT THERE, AND INVOLVED AND WORKED IN A CLINICAL SETTING. SO I WANT TO MAKE SURE WE RECOGNIZE HER. THAT'S IT. THANK YOU. [APPLAUSE] >> COST. DID THE COMMITTEE GIVE THOUGHT TO COST, ESPECIALLY AS WE'RE HEADING TOWARD THIS FISCAL CLIFF? >> NO. WE DIP -- WE ACTUALLY DIDN'T LOOK AT -- I MEAN, WE DIDN'T PARTICULARLY LOOK AT ASSIGNING COSTS BECAUSE THAT'S COMPLICATED. AT SOME POINT WE LOOKED WHAT ARE CALLED DIRECT DOLLARS THAT WENT INTO THIS COLLABORATIVE EFFORT. I GET A LITTLE BENT OUT OF SHAPE BECAUSE I THINK A LOT OF US HAVE CONTRIBUTED IN KIND PROFESSIONAL STAFF TIME OR CONTRACTOR TIME. BUT THAT TO ME IS NOT THE COST THAT YOU'RE TALKING ABOUT. >> WHAT IS IT GOING TO COST US TO GO COLLECT THESE DATA WITH THE BUDGETS -- WHEN BUDGETS ARE STATIC? >> THE OTHER IF YOU PUT EFFORT INTO THAT WHAT ARE THE OPPORTUNITY COSTS, WHAT HAVE YOU LOST THE DONE TO DO. SO NO, WE DID NOT -- WE RECOGNIZE IT'S IMPORTANT BUT WE DIDN'T DO THAT. >> AS A SEER FAMILY WE'RE REVUE VIEWING THE DATA ELEMENTS WE COLLECTED IN 2010. DO YOU HAVE A STRONG FEELING FROM WORK ON YOUR COMMITTEE WHICH DATA SHOULD BE MADE AVAILABLE ON THE APRIL 2013 SEER STAFF PUBLIC USE VERSION OR DATA COME OUT? >> THAT'S THE TOPIC OF HER GROUP AN KATHY SO STAY TUNED. >> FROM YOUR PERSPECTIVE WORKING WITH THE PEOPLE YOU HAVE BEEN WORKING WITH, DO THEY HAVE STRONG -- I THINK YOU SAID STAGING RELATED VARIABLES SHOULD BE PUT OUT AND VARIABLES THAT HAVE PROGNOSTIC OBVIOUS CLINICAL RELEVANCE WE SHOULD BE PUTTING OUT BUT WE'RE SORT OF LOOKING AT IT WHAT DO WE DO IN DATA IS NOT COMPLETE, THIS TYPE OF THING, DOES IT HURT US AS AN ORGANIZATION? BECAUSE SEER HAS I THINK A QUALITY REPUTATION OUT THERE BUT AS SOON AS YOU PUT IT OUT THERE ON PUBLIC USE IF IT NOT GOOD QUALITY IT RUNS THE RISK OF NOT REFLECTING ON AJCC OR GOVERNANCE COMMITTEE BUT SEER AS PUTTING OUT POOR QUALITY DATA. >> HERE IS BRENDA'S OPINION. KATHY, WE HAVE HAD DISCUSSIONS ABOUT IT HERE. KATHY HAS -- WE HAD DIFFERENCES OF OPINION. I'M GOING TO SAY I THINK I HAVE SEEN KATHY CHANGE HER OPINION OVER TIME. SO YES. THE MORE WE KNOW, YES, WE HAVE SO WHATEVER IT IS IT'S BRENDA'S OPINION ON NOVEMBER 15th, 2012. AND I HAVE ACTUALLY PROBABLY KEPT THE SAME OPINION, THAT I WOULD NOT PUT ANY OF THE CSC-2 DATA ELEMENTS OUTS THERE FOR PUBLIC RELEASE FILE AT THIS POINT. OTHER THAN WHAT IT WOULD TAKE TO DERIVE STATE, I'M A LITTLE FUZZY WHICH BUT I'M NOT QUITE READY TO GO PUT ALL THE CSC-2 DATA ON ALL DATA ELEMENTS BECAUSE IT'S THESE FIRST YEAR OF COLLECTION. WE WANT TO LOOK AT IT BEFORE WE MAKE IT PUBLIC. THAT IS THE THING AVAILABLE TO OTHERS, WE HAVE MANY LOOKING AT IT. BUT THE DILEMMA I DIDN'T ANSWER WHEN I MADE THAT BOLD STATEMENT I BELIEVE WE HAVE TO PUT INFORMATION OUT THERE THAT ALLOW OUR USERS TO STILL GET TO STAGE. THE QUESTION IS HOW DO WE DO THAT, IS IT SEER SUMMARY STAGE WE DERIVE AND PUT IN THERE SO I'M FUZZY ON THAT POINT BUT I'M NOT -- MY INITIAL IS I WASN'T READY TO PUT IT OUT THE FIRST YEAR. WHILE WE'RE LOOKING AT IT BUT I DON'T KNOW ALL THE FACTS. >> SO BOLE STATEMENT ON YOUR PART. DON'T PUT IT OUT ALL THE. BEG IT IS QUESTION WHEN WOULD YOU PUT IT OUT? REVIEW IT FOR A YEAR AND PUT IT OUT THE FOLLOWING APRIL OR WOULD YOU SAY WE'LL PUT OUT A REVISED VERSION OF SEER STAT WHEN READY FOR SIX MONTHS AFTER APRIL. SO L COMES OUT LIKE AT THIS TIME NEXT YEAR. >> FOR ME THE SEER DATA THE PUBLIC FILE SOUGHT THERE, WE HAVE SPECIAL REQUESTS WHERE PEOPLE CAN GET IT. Y'ALL CAN HAVE REQUESTS TO GET ACT SETS, WE HAVE STAFF LOOKING. SO WE HAVE DIFFERENT LEVELS OF WHO GETS ACCESS TO PUBLIC AND NOT AND IT'S USED FOR RESEARCH AND USED FOR LOOKING. SO I THINK THAT PROCESS IS STILL GOING TO CONTINUE, MAY GET A LITTLE MORE COMPLEX AS WE START THINKING ABOUT THESE PARTICULAR DATA ELEMENTS. BUT THE PIECE I HAVEN'T HAD CONVERSATIONS WITH SOME ABOUT WHAT WOULD WE HAVE TO PUT OUT TO MAINTAIN STAGE ON THE 2010 CASES 7TH EDITION OR AT LEAST 6TH EDITION BECAUSE THAT GIVES US TRENDS. THE REASON I DON'T KNOW ENOUGH ABOUT WHICH ONES WE WOULD PUT IN AND HOW WE GET THERE, IS BECAUSE MY VIEW IS I GUESS A LITTLE BIT INFORMED THAT I THINK IT MIGHT BE VARIABLE BY CANCER TYPE BECAUSE I THINK WE FIND THAT THE QUALITY AND COMPLETENESS IS NOT UNIFORM ACROSS SO I GUESS WHAT -- WHEN WE DID -- LET ME CIRCLE BACK AROUND. WHEN WE DID TABULATIONS LOOKING AT COMPLETENESS OF DERIVED 6TH EDITION AND TNM EXTEND DISEASE I CAN'T REMEMBER THAT ALMOST A YEAR AGO. MY SENSE IN THE SEER FILE LOOKING AT FEBRUARY SUBMISSION, THAT IT WAS MORE COMPLETE THAN SOME HAD BEEN PREDICTING. SO I THINKER FOR THE SEER REGISTRY WE CAN GET THERE AND PUT IT OUT, OPINION. WE'LL GET THE NOVEMBER FILE IN BUT WE CAN GET THERE AN IT STILL IS A SIMILAR QUALITY THAT WE HAD IN STAGE. THE QUESTION IS REALLY AS I UNDERSTAND IT, YOU LOOK AT OUR STAIN DATA. WE HAVE SOME MACE ON OUR WEBSITE, THOSE WHO DO SEER STAT AND USE IT, WE COME BACK AND LOOKED AT COMPARABILITY FOR THE TREND PIECE AND WE'LL COME BACK WHEN THERE'S A CHART THERE THAT SAYS IF YOU WANT TO DERIVE STATE FOR YOU CAN'T GO BACK, PROSTATE YOU CAN GO BACK BEFORE 95 BECAUSE THEY CHANGE, WE CHANGE, WE CAN'T GET THIS. SO MY VIEW RIGHT NOW IS WE ARE READY, WE'RE IN A SITUATION FOR SOME BECOME WARD COMPATIBILITY FOR TESTIFY ANYTHINGS OF STAGE, WE RECOGNIZE OUR DAY, WE JUST CAN'T DO IT. SO THAT'S ACTUALLY WHERE A FAIR AMOUNT WHERE (INAUDIBLE) TALK ABOUT SUPPLEMENTS SO I THINK THOSE WILL INFORM THAT AND I THINK WE'RE GOING TO HAVE -- ARE WE A WORLD NOW BECAUSE ANY TIME WE GO ANALYZE DATA AND WE HAVE LOTS MORE USERS AND THEY USE A LOT OF SEER DATA, WE KNOW THAT THEY STAY MIXED UP ABOUT SEER 9, 13 AND 17 OR 18. I DON'T HAVE ANY PAPERS ON IT. I DO A FAIR AMOUNT OF REVIEW. I DON'T KNOW HOW MANY PAPERS ARE IN, I GET A LITTLE MIXED UP, ARE THEY ANALYZING THE FILE THAT'S OUT THERE AND ALL OF A SUDDEN DOING TRENDS BACK TO '75 AND DON'T KNOW THE GEOGRAPHIC DEFINITIONS OF THOSE DATA ARE NOT THE SAME. SO WE STILL HAVE OUR CHALLENGE ON HOW TO HAVE OUR USERS MORE INFORMED. WHAT WE TRY TO DO THROUGH THE SEER STAT. WE TRIED TO TO THROUGH SOME PUBLICATIONS OUT THERE. BUT IT WILL BE SOME HYBRID MODEL. SORRY LONG ANSWER. >> I DON'T KNOW IF THIS IS A QUESTION FOR YOU OR FOR ANYONE IN N OR IMS. WE KNOW CS VERSION 1, WE HAVE STOP CHECKING THE DATA MOSTLY ON 2004 AND COUPLE OF THOSE ON IN 2005. THOSE EXISTING IN SEER STAT DATA FILE THAT'S RELEASED THROUGH THE PUBLIC? >> THE NEWS AS I UNDERSTAND IT IS WE HAVE NOT -- I DON'T WANT TO CRITICIZE MUCH BUT'S NOT QUITE AS SYSTEMATIC A LOOK OTHER THAN WHAT YOU SAW WITH KEVIN WHO DID IT IN A PUBLICATION SO I THINK THAT WAS A NICE -- HELPFUL TO THE COMMUNITY. BUT WE HAVE PUT IT OUT THERE BUT I THINK INTERNALLY THERE MAY NOT -- THE LOOKING AT IT IS ONGOING. AND TAKES TIME, THERE'S A LIMB TO THE TIME. THAT'S WHAT THE SITUATION IS. >> SO WE HAVE DEVELOP TO 10:30, MAYBE IT'S TIME FOR COFFEE, I'M HAPPY TO HANG AROUND AND ANSWER MORE QUESTIONS BUT WE HAVE OTHER PARTS TO THE CONVERSATION SO I DON'T WANT THIS TO BE WHERE WE LEAVE IT. >> AFTER THE BREAK WE CAN COME BACK AN ASK ADDITIONAL QUESTIONS IF YOU LIKE. MAYBE WE CAN BREAK NOW AND GET BACK AT 11:00. THANK YOU. [APPLAUSE] >> OKAY. IT'S 11:00 SO WE'RE GOING TO GET STARTED AGAIN. PLEASE TAKE YOUR SEATS. >> SO JENNIFER RUHL IS GOING TO BE NEXT. SO PLEASE TAKE A SEAT SO WE CAN GET STARTED AGAIN. >> THANK YOU VERY MUCH FOR TAKING YOUR SEAT SO WE CAN GET STARTED AGAIN. OUR NEXT TALK IS GOING TO BE JENNIFER AND SHE'S GOING TO TALK ABOUT SOME IDEAS FOR SIMPLIFYING STAGE AND THEN WE'RE GOING TO MAKE A LITTLE ADJUSTMENT TO THE AGENDA AND CHRISTIE AGREED TO GO BEFORE LUNCH SO THERE'S THREE TALKS BRENDA JENNIFER AND CHRISTIE TIES REALLY WELL AND WILL LEAD INTO A INTERESTING DISCUSSION. >> CAN YOU HEAR ME? MAYBE I'LL GO WITH THE MICROPHONE. SO VERSION 2 SIMPLIFICATION, THIS IS LIKE THE BIGGEST BUY WORD IN THE REGISTRY THESE DAYS AT LEAST IN MY AREA. BRENDA DID AN EXCELLENT JOB OF OUTLINING SOME OF THE PROBLEMS IN THE ISSUES WE ARE FACING. WHAT IS IT WHERE ARE WE? BRENDA GAVE SOME INDICATION OF PLACES WE ARE BUT I'M GOING TO GET DOWN INTO THE WEEDS A LITTLE BIT. BUT NOT TOO MUCH BECAUSE I KNOW A LOT OF YOU ARE NOT CPR, SO THIS WILL GO OVER YOUR HEAD. BETSY IS ALREADY LOOKING INTO THE WHINING SOUND THAT WE'RE HEARING. A LOT OF PEOPLE SAY WHY DO WE HAVE ALL THESE DIFFERENT CODES GOING TO THE SAME T? YOU'LL SEE FIVE OR SIX DESCRIPTIONS GOING TO T-1 OR 26789 YOU'RE GOING WHY DO WE NEED SO MANY CODES. WE ARE TRYING TO MAINTAIN ABILITY TO MAP TO SEVERAL STAGING SYSTEMS, ONE IS HISTORIC STAGE BACK TO 1973. SUMMARY STAGE 1977 AND BRENDA I DID NOT REALIZE THAT SUMMARY STAGE 77 DID NOT GO BACK TO '77. SO STAGE 2000 WAS JUST STARTED IN 2000. AJRC 6TH EDITION BEGINNING THE CS VERSION 1 AND 7TH EDITION WHICH WAS THE BEGINNING OF CS VERSION 2. PEOPLE LOOKING AT TRENDS WITH SEER STAT DATA ARE USED HISTORIC STAIN SO THEY CAN GO BACK O TO 1973 OR INTO THE '70s, SOME INTO THE '80s. CANCER NORTH AMERICA USED SUMMARY STAGE 2000. THE INTENT WAS TO MAKE CODING EASIER. WE HAVEN'T EXACTLY DONE THAT. AND JOANNE IS SHAKING HER HEAD. NO EF WITHN'T DONE THAT. IN SOME CASES -- WE HAVE IT STATED AS CODE BECAUSE ESPECIALLY CENTRAL REGISTRY IN SOME HOSPITALS ALL YOU HAVE IS THE PATIENT T-# N-1 N-0. BEFORE CS VERSION 2 HOW WOULD YOU CODE THAT? YOU HAD TO DO AN EEENY MEANY MINEY MOW. THAT'S WHERE YOU GO TO DIRECTLY SO IN THAT SENSE IT'S MADE IT EASIER. WE WERE ALSO TRYING TO MATCH WORDING ASSOCIATED WITH PARTICULAR TYPE OF DISEASE. SO EASY AJCC WORDING, AND KIND OF REGISTER WORDING BUT THEN YOU HAVE ALL THESE PATHOLOGISTS AND HOPS WHO USE DIFFERENCE WORDING SO IT SEEMS LIKE NO MATTER THE WORDING SOMEBODY IS NOT GOING TO UNDERSTAND IT. SO ONE REASON WE HAVE CODES THAT MAYBE MAPPING TO THE SAME STAGE IS THAT THERE'S DIFFERENT PROGNOSIS OR SURVIVAL. THE BEST EXAMPLE WE HAVE IS INFLAMMATORY DISEASE FOR BREAST. YOU HAVE A TRUE INFLAMMATORY CANCER, IT'S A T-4D. WHY TO WE HAVE MULTIPLE T-4D CODES? YOU WANT TO KNOW IF YOU HAVE SKIN AND BONE LESS THAN 33%, EQUAL TO 33%, THE 7TH EDITION DEFINITIONS, IN THE 6TH EDITION CAN YOU OFF WAS 6% SO WE HAD TO ADD CODES TO MAINTAIN THE 5TH EDITION CUT OFF. YOU CAN SEE WHERE IT GETS COMPLICATED AND COMPLEX QUICKLY. SO WE WANTED TO BE ABLE TO MAINTAIN THE CODES THAT HAD THE DIFFERENCE PERCENTAGES SO PEOPLE CAN DO SURVIVAL ANALYSIS BECAUSE IF YOU HAVE INVOLVEMENT LESS THAN 33% YOUR SURVIVAL WILL BE GREATER THAN IF YOU HAVE GREATER THAN 33% BUT OVERALL I WERE FLAMTORY DOES THE NOT HAVE GOOD SURVIVAL. SO IS THIS REALLY IMPORTANT INFORMATION WE WANT TO KEEP? SO WHAT WOULD WE GAIN IN SIMPLIFICATION MORE ACCURATE DATA, WE HAVE ALREADY HAD QUESTIONS ABOUT HOW ACCURATE IS THE DATA FROM 2010. BASED ON SOME OF THE QUESTIONS I HAVE SEEN IN CANCER FORM I DO ANSWER A LOT OF QUESTIONS IN CANCER FORUM, I HAVE BEEN QUESTIONING HA QUESTION FOR SOME TIME. HOW ACCURATE IS IT, PEOPLE ARE STILL HAVING PROBLEMS. YOU SHOULD SEE THE QUESTIONS WE GET. ALSO HAVE MORE FOCUSED TRAINING, WE CAN -- WE'RE NOT SO WORRIED ABOUT TEACHING HOW TO CODE 50 CODES, WE CAN CONCENTRATE ON MAYBE 20. UNLESS CTR -- AND LESS CTR CONFUSION. I SHOULD ALSO ADD A POINT, LESS CONFUSION FOR ME AND THE OTHERS WHO WORK ON CS. INCLUDING BRENDA AND LYNN. SO WHAT IS (INAUDIBLE) WILLING TO LOSE TO SIMPLIFY? WE WOULD BE WILLING THE LOSE DETAILS SO HOW IMPORTANT ARE THOSE DETAILS? THAT'S ONE THING WE HAVE TO LOOK AT. SOME OF THESE DETAILS MAYBE RELATED TO PROGNOSIS. OR RELATED TO SURVIVAL. INFLAMMATORY BREAST CANCER IS A VERY GOOD EXAMPLE, PROBABLY ONE OF THE BEST WE HAVE. AND DOWN HERE, THE PERCENTAGE OF INVOLVEMENT. WE COULD GO TO ONE T-4D CODE BUT YOU WOULDN'T CAPTURE PERCENTAGE OF INVOLVEMENT AND THE QUESTION IS ARE YOU WILLING TO GIVE THAT UP. IF YOU HAVE DONE A LOT OF WORK ON INFLAMMATORY OVER THE YEARS YOU MAYBE SAYING NO, WE DON'T WANT TO GIVE THAT UP. JUST AS A REFERENCE POINT, EOD IS ONE I WERE FLAMTORY CODE. INFLAMMATORY CARCINOMA, 70 OR 72. SO THEY HAVE EXPANDED CS VERSION 1 AND EXPLODED IN CS VERSION 2. ALLOWED THE DEFINITION CHANGE FROM AJCC. SO WHAT ARE WE NOT WILLING TO LOSE? HISTORIC STAGE. FOR A WHILE THERE WAS -- WE'RE NOT SURE WHERE THIS THEOLOGY CAME FROM BUT PEOPLE THOUGHT THAT A LOT OF THE CODES THAT WERE ADDED WERE TO MAINTAIN HI RICK STAGE. SEER M RICK STAGE. SO WE WENT BACK AND LOOKED AT BREAST, WE LOOKED AT COLON, THAT'S AS FAR AS WE HAVE GOTTEN AND NOT HISTORIC STAGE CODE. SO A LOT WERE ADDED IN O KEEP HISTORIC STAGE. MOST WERE FROM AJCC 6TH EDITION OR SUMMARY STAGE. MOSTLY SUMMARY STAGE 2000. SO HAVING ALL THESE ADDITIONAL CODES AS WELL IS NOT MAKING IT EASIER FOR REGISTERS THEN THERE IS NO REAL LOSS HERE. IF YOU HAVE SEER CODES MAYBE DATA WOULD BE MORE ACCURATE. THEY MENTION T OR M FOR ALL STAGING SYSTEMS. INCLUDING HISTORIC STAGE, THEY ARE CONSIDERED (INDISCERNIBLE). A LOT OF THESE SCHEMAS THAT HAVE MULTIPLE CODES TO THE SAME BECAUSE YOU HAVE TO LOOK AT THEM INDIVIDUALLY, THEY DO ALL GO TO THE SAME STAGING SYSTEM SO THERE IS REPETITION. THEN WE REVIEW THE CODES UNDER CONSIDERATION. SO ONE OF THE THINGS WE WON'T BE DOING IS COMBINING CLINICALLY DIFFERENT DISEASES OR CANCERS DIFFERENTLY MEDICAL RECORD. FROM BREAST, INFLAMMATORY DISEASE. FOR THE NUMBER OF CASES WE LOOKED AT 2010 DATA BY CODE FOR BREAST. AND THE PROBLEM WITH BREAST IS CODE 400 AND ABOVE WHICH DEALS WITH T-4 LESIONS THE REST OF THEM THE CODES ARE NOT A PROBLEM. THERE WAS A BUNCH OF CODES THAT HAD ZERO CASES IN 2010. WHAT'S THE POINT OF KEEPING THE CODE THAT WON'T BE USED? THESE ARE THINGS WE'RE LOOKING AT. CASE COULDN'T WAS NOT A PRIMARY CRITERIA AS FIRST THING BUT IT WILL COME AS A FLAG. WE DID KEEP CODES THAT HAD LOW CASE COUNTS BUT WE THOUGHT THEY WERE CLINICALLY SIGNIFICANT ENOUGH TO KEEP. SOME OF YOU MAY HAVE SEEN KEVIN MOORE'S APPROACH. I WAS DISTRESSED TO HEAR KEVIN WASN'T HERE. I ALWAYS LOOK FORWARD TO SEEING HIM, BEING A FORMER GEORGIA PERSON. THIS IS ON COLON SO HERE IS A GOOD EXAMPLE OF MULTIPLE CODES GOING TO THE SAME T VALUE AS YOU SEE HIGHLIGHTED IN PURPLE, WE HAVE SIX CODES GOING TO T-1. DO WE NEED ALL SIX CODES? KEVIN SAYS NO. AND KEVIN SAID WE CAN COMBINE CODES 130-170 AND 300 IN ONE CODE. 200 HOW T GOT IN THE MIDDLE I DON'T KNOW BUT THAT'S ACTUALLY HOW IT LOOK RIGHT NOW. SO KEVIN'S EXAMPLE WAS TO PIPE ALL THIS INTO ONE CODE. SEER LOOKED AT THIS AND WE THOUGHT WE WANT TO KEEP THE INFORMATION THAT IT WAS CONFINED TO A POLYP. HR-130, 140 AND 150, DO WE CARE IF IT WAS THE HEAD OF THE POLYP, THE STALK OF THE POLYP OR POLYP NOS? NOT REALLY, THAT'S NOT IMPORTANT TO US. WE WANT TO KNOW (INAUDIBLE). SO WHAT WE CAME UP WITH WAS 180 COMBINED POLYPS AN REMAINING T-1 CODES INTO ONE CODE. THEN YOU HAVE YOUR T-2 CODE THERE. SO THE QUESTIONS TO THINK ABOUT IS THIS REALLY GOING TO SAVE TIME FOR REGISTRARS. WILL THIS RESULT IN BETTER DATA. SO THESE ARE THE QUESTIONS WE'RE ASKING. IS THIS REALLY GOING TO BE HELPFUL? OKAY. THANK YOU, TOM. WE CAN ALL(SÖ3 WE SETTLED THE ISSUE. BACK TO BREAST HERE. I USE COLON BECAUSE KEVIN HAD DONE THAT AND YOU ALL MIGHT HAVE SEEN IT. IT WAS AN EXCELLENT EXAMPLE FOR SOME LOOKING AT A CLINICALLY SIGNIFICANT DISEASE PROCESS WHICH WAS THE POLYP VERSUS OTHER THINGS GOING ON. SO WITH BREAST WE HAVE SEVERAL PROBLEMATIC AREAS, MULTIPLE (INAUDIBLE) FOR T-1 LEAGUES, THEY TWO TO SAME STAGE SO WE COMBINE THOSE? WE COULD. LYMPH NODE I DON'T KNOW IF YOU NOTICE IN CS-VERSION 2 CODES GOT SPLIT TO CLINICAL, PATHOLOGIC AND WE DONE KNOW IF IT'S CLINICAL OR PATHOLOGIC WHICH IS RESULTED IN A LOT OF CONFUSION FOR REGISTERS SO WE ARE RECOMMENDING COLLAPSING THEM BACK TO ONE CODE. WE REALLY DIP THINK THAT WAS PROBLEMATIC. SO ONCE AGAIN BACK TO INFLAMMATORY, THOSE GET INVOLVEMENT WITH NO DIAGNOSIS INFLAMMATORY CARCINOMA, YOU HAVE SKIN INVOLVEMENT WITH DIAGNOSIS INFLAMMATORY CARCINOMA. AND THESE ACCOUNT FOR OVER HALF THE BREAST CODES. FROM AJCC 6TH EDITION, THAT'S FIVE CODES, WHICH YOU CAN'T USE NOW BUT THEY'RE STILL IN THERE. SO ONE OF THE THINGS I WAS ASKED TO SIMPLIFY BREAST SO THIS IS KIND OF MY APPROACH. MY APPROACH IS NOT PERFECT. NOT THE ONLY APPROACH. THERE ARE SOME PROBLEMS WITH MY APPROACH AND WE ARE TRYING TO GET FEEDBACK FROM A LOT OF DIFFERENCE PEOPLE, WHAT'S THE BEST WAY TO DO THIS. SO WE ARE STILL LEARNING. IF YOU SAY HEY I DON'T AGREE WITH HOW YOU DID THAT, THAT'S FINE. PLEASE TELL ME THAT. FOR THOSE THAT GOT THAT EMAIL FROM ME ON SIMPLIFYING BREAST. YOU WILL NOT HURT MY FEELINGS IF YOU TELL ME I WAS WRONG. I GOT OVER THAT A FEW YEARS AGO. ANYWAY, WE'RE TRYING TO TO THIS SO WE WANT TO MAINTAIN OUR PERCENTAGES FOR CLINICAL DESCRIPTION WITHOUT THE DIAGNOSIS INFLAMMATORY AND CLINICAL DESCRIPTION OF SKIN INVOLVEMENT WITH DATA DIAGNOSIS WITH I WERE FLAMTORY. THEN WE HAVE THE UNKNOWNS. SO FOR T-4B AND D YOU HAVE A MINIMUM OF THREE CODES TO MAINTAIN THESE PERCENTAGES FOR 7TH EDITION ONLY. MINIMUM OF THREE CODES OR FOR EACH. I'M GOING TO PICK ON FRANCIS. WHERE DID SHE GO? THERE SHE IS. IF IT'S T-4D, DOESN'T MATTER HOW MUCH PERCENTAGE IS INVOLVED. THAT'S THE QUESTION OF THE HOUR. IF YOU WERE DOING STUDIES ON THIS, LOOKING AT TRENDS, IS THAT SOMETHING REALLY IMPORTANT TO YOU? SHE SAID FROM A CENTRAL REGISTRY PERSPECTIVE IT'S NOT THAT IMPORTANT, WE JUST CARRY THAT (INAUDIBLE) T-4. SO YOU HAVE TO BALANCE OUT WHAT IS IMPORTANT TO THE CENTRAL REGISTRY, WHAT'S IMPORTANT TO SEER, WHAT'S IMPORTANT TO NPCR OR C OBJECTIONR SO THESE ARE ALL THINGS THAT ARE GOING ON. BECAUSE WE'RE NOT GOING TO HAVE A SYSTEM FOR SEER, FOR CSC AN NPCR, YOU THINK IT'S CRAZY NOW, THAT WOULD BE CRAZIER. WE'RE NOT TRYING FOR CS -- WE'RE TRYING FOR SOMETHING THAT WORKS FOR EVERYBODY. SO WITH ALL THIS GOING ON ON AND INFORMATION WE HAVE GOTTEN FROM OTHER PEOPLE THE N RECOMMENDED A MAPPING TEAM BEING CONSTRUCTED TO MINIMIZE THE ADDITION OF NEW CODES BECAUSE THE MAPPING TEAM DISCUSSES CHANGING TO VERSION 2.05. I WILL TELL YOU RIGHT NOW, IT'S TYPOS, IT'S CLARIFYING NOTES, IT'S NOT GOING TO BE A MAJOR PAPERING IT'S GOING TO BE SIMILAR TO A (INAUDIBLE) FORM. MAYBE LESS. NEW CODES BECAUSE THERE ARE STILL SOME NEW PROPOSED CODES COMING FORWARD, BROUGHT FORWARD TO THE FULL GOVERNANCE GROUP FOR COMMENT AND APPROVAL. NOT TOO LONG AGO MARTY (INDISCERNIBLE) CCS PROGRAM ADMINISTRATOR SEND OUT AN EMAIL I'LL ON BEHALF OF THE GOVERNANCE COMMITTEE TELLING THE MAP TEAM IF UP TO ADD NEW CODES YOU HAVE TO GO THROUGH YOUR STANDARDS. SO THEY ARE TIGHTENING DOWN ON THAT. THAT DOESN'T MEAN THERE WON'T BE NEW CODES ADDED. THERE ARE SOMETIMES NEW CODES REALLY ARE NEEDED. BUT THIS IS TO CUT DOWN DRAMATICALLY. SO OUR NEXT STEPSES, REVIEW AND COMMENT, I SENT THE CS SIMPLIFY CASE OUT TO SEER REGISTRIES, IT WAS MADE AVAILABLE ALSO TO CHRISTIE. AND COC TO SEN IT TO WHOM EVER THEY WANTED SO CHRISTIE WILL SEND IT TOUT A FEW MORE OF HER REGISTRIES. I HAVEN'T HEARD BACK FROM COC BUT THEY HAVE A COPY. WE WILL ADDRESS COMMENTS AND SUGGESTIONS THAT WE GET BACK, PLEASE. WE WANT FEEDBACK. WE WANT TO KNOW WHAT WORKS IN THE FIELD. REMEMBER A LOT OF PEOPLE MAPPING TEAMEN GOVERNANCE COMMITTEE DO NOT WORK IN THE FIELD. I USED TO WORK IN THE FIELD BUT THAT WAS SIX YEARS AGO SO I CAN'T EVEN GO I KNOW WHAT'S GOING ON IN THE FIELD. I DON'T ANY MORE. THE MORE I TALK TO PEOPLE IN THE FIELD THE MORE I REALIZE I DON'T KNOW WHAT'S GOING ON OUT THERE. SO IT'S CRITICAL, TALK TO YOUR STAFF. I DON'T CARE IF YOU HAVE EVERY CTR IN YOUR STATEqsl COMMENT, WE WANT FEEDBACK FROM THOSE THAT ARE OUT IN THE FIELD ON WHAT THEY THINK ABOUT THIS. NO COMMENT IS STUPID OR RIDICULOUS. IF SOMEONE DOESN'T P UNDERSTAND SOMETHING OR WE NEED TO HEAR THAT. DOESN'T MEAN WE'LL CHANGE EVERYTHING AND DO SOMETHING WITH EVERY COMMENT BUT WE DO NEED TO HEAR. THIS H HELP US HOW WE PROCEED FORWARD. SO IS SOMETHING LIKE THIS GOING TO BE PLEA AGREEMENTD? IT DEPENDS ON REGISTRIES IF THEY SAY YES THIS IS GREAT WE WANT YOU TO DO IT, WE WILL PROBABLY MOVE FORWARD. PROBLEM IS GETTING THE CHANGES THROUGH THE MAPPING TEAM AND THE IT TEAM, IF YOU CAN IMAGINE THIS IS GOING TO RESULT IN MASSIVE CHANGES TO THE DLL. DAVE ROONEY IS BACK THERE ROLLING HIS EYES. HE HEADS UP THE CSIT TEAM AND DOES AN AWESOME JOB OF IT. THERE IS A LOT OF WORK INCORPORATED INTO THIS. SO I HAVE QUESTION MARKS FOR IMPLEMENTATION BECAUSE WE DOPE KNOW. COULD THIS GET INTO VERSION 0205? LIKELY NO. CXFC WE WERE STANDING HERE IN 2011 PROBABLY SO. BUT THERE'S JUST A LOT OF WORK TO DO. ALSO WE HAVE AJCC 8 COMING DOWN THE LINE. CHRISTIE WILL TALK MORE ABOUT THIS. DO WE WANT TO SPEND TIME ON MAKING CHANGES TO CS WHEN 8 IS AROUND THE CORNER AND MAY RESULT IN MORE CHANGE? SO WE HAVE A LOT OF THING THAT ARE GOING ON THAT WE NEED TO DISCUSS. THAT'S THE END. DO Y'ALL HAVE ANY QUESTIONS? [APPLAUSE] >> OKAY. GO AHEAD. >> WHEN THE GROUP DISCUSSES ABOUT COLLAPSING LIKE ALL THE -- LIKE (INAUDIBLE) TO ALL T-1s, HAVE YOU CONSIDERED WHETHER THERE'S ANY KIND OF CONSISTENCY WITH LIKE THE TREATMENT GUIDELINES? I'M MAKING THIS UP BECAUSE I'M NOT QUITE -- LET'S LEAVE EVERYTHING FOR T-1 IS LESS THAN TWO CENTIMETERS FOR TUMOR SIZE OR SOMETHING. AND THE NCCN GUIDELINES FOR BREAST ACTUALLY HAD SOMETHING ON LIKE TUMOR LESS THAN 1 CENTIMETER. WOULD WE LOSE THOSE OR DO YOU THINK WE CAN CAPTURErTUMOR SIZE OUT FROM THE TUMOR SIZE SECTION OF THE CS AND NOT NECESSARILY FROM THE T? >> BREAST IS A LITTLE BIT--LY, TUMOR SIZE IS A DISTINCT FIELD SO YOU (INAUDIBLE) REGARDLESS WHAT SCHEMA YOU'RE IN. FOR CODES THEY GIVE YOU THE T-1, 2, 3, THEY ACTUALLY GO TO AN EXTRA TABLE SO THE T FOR T-1 T-2, T-3 FOR BREAST IS ACTUALLY BASED ON THE TUMOR SIZE. THAT'S NOT THE CASE FOR ALL SITES, NOT THE CASE IN COLON. YOU CAN RECORD TUMOR SIZE IN COLOBUSES BUT DOESN'T FACTOR INTO THE STAGING. SO YOU GET T VALUE IN BREAST T-1, 2 AND 3 FROM TUMOR SIZE. >> I HAVE GOT A SUGGESTION FOR THE GROUP IS THAT WHEN YOU'RE DOING COLLAPSING THE MAKE SURE THE COLLAPSING WITH YOU TO ALLOW YOU TO EVALUATE THE TREATMENT SINCE NOW THE DIRECTION OF THIS YEAR GOING OUT A LOT LOOKING AT STAGING, LOOKING AT TREATMENT, IS THERE A WAY FOR US TO BE ABLE TO LINK TO SEE WHETHER THEY WERE ACTUALLY RECEIVING TREATMENT GUIDELINES. >> GOT YOU. DENNIS. >> I CAN'T SHUT UP TODAY. I'M SORRY. >> THAT'S OKAY. >> IT STRIKES ME A COUPLE OF THINGS STRIKE ME THIS DISCUSSION. INFLAMMATORY BREAST CANCER ACCOUNTS FOR LESS THAN 1% OF BREAST KAREN. >> I AGREE. >> WHY IN THE WORLD ARE WE PICKING KNITS WITH INFLAMMATORY BREAST CANCER WHEN YOU GET BIG BANG FOR THE BUCK LOOKING AT THE OTHER 99%? I SOUND LIKE BROWNY. THE 99% -- THE GENERAL -- I SON LIKE ROMNEY. 99%. THE GENERAL IDEA IS DO WE GET ANYWHERE BY PICKING THIS WITH SMALL SITES WHEN YOU MIGHT GET BIGGER BANG FOR YOUR BUCK LOOKING AT BIG HITTER SITES AND COLLAPSING CODES WILL? THAT'S WHERE WE SPEND ALL OF OUR TIME. >> I AGREE WITH YOU. >> PERCENT OF THE CASES ARE HEMATOPOIETIC, THE MANUAL IF YOU PRINT OUT WOULD BE THIS HIGH, LITERALLY THIS HIGH. 7% OF CASES WE HAVE TO WADE THREW A MANUAL THIS HIGH IF WE PRINT IT OUT. ARE WE -- DO WE NEED SOME RETHINKING ABOUT WHAT WE'RE FOCUSING ON IN GENERAL? FOOD FOR THOUGHT. >> VERY GOOD FOOD FOR THOUGHT, CHUCK. WE LOOKED AT OUR SEER DATA TO GIVE YOU AN IDEA BECAUSE CHUCK HAS AN EXCELLENT POINT. 20% OF OUR CASES WERE IN SITU, 70% WERE LOCALIZED WITH CODE 100. SO BETWEEN 2 CODES AND CS BREAST SCHEMA YOU ACCOUNTED FOR 90% OF THE CASES. SO WHY I DO WANT TOY A DRESS -- TO ADDRESS, WHY WE'RE CONCENTRATING SO MUCH ON INFLAMMATORY. BECAUSE I'S CAUSING A LOT OF QUESTIONS AND ANGST. WE HAVE A GROUP OF RESEARCHERS WHO DO A LOT OF STUDIES ON INFLAMMATORY, THEY DEPEND ON OUR DATA. SO WE DONE WANT TO DO A RADICAL CHANGE ON THAT. WE CHECKED OTHER CODES THAT AFFECT T-1, 2 AND 3, WHICH IS 70% OF THE CASES. AND WE COLLECTED CODES THERE THAT WOULD MAKE IT A LITTLE BIT EASIER. BUT THE PROBLEM WITH BREAST, THIS IS JUST BREAST, PROBLEM BASICALLY WITH BREAST WAS INFLAMMATORY WHICH AS CHUCK SAID ONLY ACCOUNTS FOR ONE OR TWO PERCENT OF OUR CASES. >> SO LET ME GIVE YOU AN ALTERNATIVE SOLUTION. THOSE RESEARCH USED TO DO A SPECIAL STUDY IN A SAMPLE OF CASES, WE HAVE STATISTICAL THEORIES DEVELOPED A COUPLE OF HUNDRED YEARS, LET THEM (INAUDIBLE) BUT FOR THE CANCER SURVEILLANCE COMMUNITY WE'LL FOCUS ON THE BIG PICTURE. HAVING JUST A THOUGHT FOR THAT. FOR INFLAMMATORY. WE LOVE INFLAMMATORY BREAST CANCER. WE HAVE BEEN LOOKING AT INFLAMMATORY BREAST CANCER BUT WE COULD WRITE AN RO-1 INVESTIGATOR INITIATED RESEARCH AND GET SOME FUNDING TO REALLY GO IN THERE AND TEAR THE DAM RECORDS APART AND MAKE STATEMENTS. I THINK ONE OF THE THINGS THIS SEEMS LIKE -- WE TRY TO TAKE THIS SHIFT, THIS HUGE TITANIC OF A SHIP AND TRY TO STEER IT THIS WAY, FOR 1% OF THE BREAST CANCER CASES. WE TRY TO STEER IT THAT WAY, I WONDER SOMETIMES IF A BIGGER PICTURE MIGHT BE TO MAKE THINGS GO FORWARD AND LET PEOPLE GET OFF ON BOATS AN FOLLOW THEIR LITTLE ISLAND AND DO THE RESEARCH THAT WAY. JUST -- ANYWAY, EEL SHUT UP. I'M GOING TO SIT DOWN. ANGELA WILL KEEP ME IN MY CHAIR. >> THANK YOU, CHUCK. I APPRECIATE YOUR COMMENTS. I AGREE WITH YOU. I ACTUALLY WANTED TO JUMP SHIP SEVERAL TIMES. [LAUGHTER] >> BUT I THINK IT'S NOT THE SIZE OF THE TITANIC, IT'S TWO TITANICS. THAT'S HOW BIG THE PROBLEM IS. THAT'S MY OPINION. >> I WANT TO REITERATE THE URGENCY BEHIND THIS. I KNOW THAT YOU HAVE TO MOVE SLOWLY AND THINGS CAN'T GET DONE UNTIL 2014, 2015. AT THE SAME TIME IT IS NOT SUSTAINABLE. AND THE THOUGHT OF TRYING TO BE COMPATIBLE WITH AJCC 8 WHEN WE'RE STILL HANGING ON TO HISTORIC STAGE IS FRIGHTENING. IT HAS A BETTER CHANCE OF ACTUALLY BEING COMPATIBLE AND SUSTAINABLE AND USEABLE IN 2015 AND WE GET THERE, IT'S A LOT SIMPLER, SO WE NEED TO STOP DIDDLING AROUND, MAKE DECISIONS AND MOVE. THAT'S MY THOUGHT. >> WE'RE TRYING TO MOVE THE TITANIC TIMES 2 SHIP, IT'S NOT EASY. ANY OTHER COMMENTS? PLEASE. I KNOW Y'ALL HAVE THOUGHTS ABOUT THIS. >> THANK YOU. >> IF YOU HAVE TO GET UP AND SAY SOMETHING ELSE. -- >> I KIND OF CAN THE POINT THAT CHUCK MADE, I AGREE, WOULDN'T IT WITH BETTER IF WE USED LIKE BREAST CENTERS OF EXCELLENCE TO DO THIS KIND OF DRILL DOWN AND MAYBE PAY THEM TO COLLECT THIS INFORMATION, IF IT'S BEYOND THE SCOPE OF -- IT WOULDN'T BE BECAUSE IT'S CONSISTENT WITH CSC SO THEY WOULD BE DOING IT SO THAT, THAT'S ONE THING. BUT WOULDN'T THAT MAKE SENSE? I MEAN -- >> ANOTHER THING BASED ON SOME OF THE QUESTIONS THAT I HAVE GOTTEN I REALLY DO QUESTION OUR INFLAMMATORY DATA FROM 2010 FORWARD TO BE QUITE HONEST. I DON'T KNOW HOW ACCURATE THAT IT IS. >> YOUR QUESTIONING THAT IT'S INFLAMMATORY BREAST CA OR -- >> NO I'M QUESTIONING HOW IT WAS CODED AS INFLAMMATORY BECAUSE BEFORE I STARTED WORKING WITH BREAST I WAS REALLY CONFUSED BY THE SUBSCRIPTIONS NOW I HAVE BEEN PORING OVER IT SO MUCH BUT MOST PEOPLE THAT I HAVE TALKED TO DOES NOT UNBECAUSE THEY DO NOT UNDERSTAND THE DISTINCTION PUTTING TOGETHER A TRAINING EDUCATION TRAINING TEAM TO FOCUS ON JUST THAT. BUT FOR EXAMPLE, BEING A MEMBER, BEING ON EDUCATION AN TRAINING TEAM AND ANSWERING QUESTIONS IN CANCER FORM I DO GET A GENERAL IDEA OF WHERE SOME OF THE ISSUES AND PROBLEMS ARE. AND TONS OF EMAILS FROM LOUISIANA. >> ONE THING THAT WE TRY TO DO IS WORK SMARTER NOT HARDER. BUT WE'RE WORKING SMARTER BUT WE'RE STILL WORKING HARDER. I AGREE WITH FRANCIS, THE URGENCY IS THERE. WE'RE JUST NOT MAKING ANY PROGRESS. IT DOESN'T FEEL LIKE IT ANYWAY. >> I FEEL YOUR PAIN EVERY DAY. I WANTED TO JUMP THAT SHIP. ANYBODY ELSE? I WANT TO SAY ONE THING, THEN I'LL SIT DOWN„ˇ¨ AND HUSH. LOUISIANA I'M GOING TO PICK ON THEM BECAUSE THEY DID A FABULOUS PRESENTATION AND PROBLEMATIC AREAS WITH CODING SITE SPECIFIC FACTORS AND COLON AND RECTUM AND I THINK OTHER SITES. THEY SAID YOU'RE THE CS PERSON IN SEER WOULD YOU REVIEW US? I SAID NOT AT ALL. I LEARNED QUITE A BIT FROM LISA (INDISCERNIBLE) AS THIS PRESENTATION WAS GOING BACK AND FORTH BECAUSE THEY'RE SAYING THE MANUAL SAYS THIS BUT IN THE FIELD WE'RE SEEING THIS AND WE DONE SEE A CONNECTION. I WAS LIKE OH, OKAY. WHAT IF WE GO FROM THERE? SO THAT STARTED DISCUSSION BETWEEN US TRYING TO FIGURE OUT HERE IS WHAT THEY'RE DOING IN THE MOTHER SHIP, THEY'RE NOT SEEING WHAT'S DONE IN THE FIELD AND JUST TRYING TO GET A BETTER UNDERSTANDING SO I APPRECIATE HAVING THAT OPPORTUNITY TO WORK WITH THEM. I DON'T KNOW WHO LEARNED MORE. THEM OR ME. SO IF YOU HAVE STUFF GOING ON WITH CS, I AMBISYBO I LEARN A LOT WHEN I GET STUFF FROMt IN THE FIELD. SO ESPECIALLY WITH RS, IF YOU HAVE PROBLEMATIC AREAS, WE ARE UNDERGOING CHANGES FOR VERSION 0205 AND MAYBE VENTURE PROBLEM IS ALREADY ON THE AGENDA AN SWITCH LIST THAT NEVER SEEMS TO END, I DO ENCOURAGE Y'ALL LETTING US KNOW WHAT'S GOING ON. LIKE I SAID, PROJECT THAT WE -- THEY PRESENTED AT THEIR FALL MEETING, I LEARNED A LOT FROM THAT. I ENJOYED WORKING ON THAT WITH THEM. DON'T ASSUME I DON'T HAVE TIME. TO ME IT'S LIKE GOLD NUGGETS OF INFORMATION, IT REALLY HELPS ME. THANK YOU. I'LL HUSH UP NOW. [APPLAUSE] >> CHRISTIE AGREED TO MOVE HER PRESENTATION UP. SHE'LL TALK ABOUT WHAT'S GOING ON WITH AJCCA AND HOW IT FITS TOGETHER. >> CAN YOU HEAR ME OR DO I NEED TO MOVE IT UP? OKAY? OKAY. FIRST I WANT TO THANK CAROL FOR INVITING ME, IT'S GREAT TO BE HERE AND TO SEE PEOPLE I DON'T USUALLY GET TO SEE EXCEPT MAYBE AT NICER SO THANKS FOR BEING HERE. ALIKE TALKING AFTER BRENDA BECAUSE SHE PROVIDES A LOT OF CONTEXT THAT HELPS ME WHEN I GIVE MY PRESENTATION. SO I'LL TRY TO FILL IN PERHAPS WHERE BRENDA STARTED. I THOUGHT I WAS SUPPOSED TO CHECK THE EXECUTIVE COMMITTEE IN GENERAL AND I THINK SOME INFORMATION ABOUT THE EXECUTIVE COMMITTEE IN GENERAL WILL BE HELPFUL SO I WILL TALK A L LITTLE BIT ABOUT THAT. I AM THE REPRESENTATIVE TO THE GOVERNANCE -- EXECUTIVE COMMITTEE FROM THE CS GOVERNANCE WORK GROUP. SO NOT APPARENTLY, WE'RE ALL CS IS NOW LIKE A FORMAL COMMITTEE UNDER ARCJCC SO THERE'S CS AND EXECUTIVE COMMITTEE AND A NUMBER OF COMMITTEES UNDER EXECUTIVE COMMITTEE. SO I WANT TO TALK ABOUT EXECUTIVE COMMITTEE, THE (INAUDIBLE) PROJECT BRENDA MENTIONED AND THE 8TH EDITION WORK GROUP. SO YOU MIGHT SAY WHY DO I CARE ABOUT A FEW PUBLISHER FOR AJCC? IT ACTUALLY WILL DO HAVE SOME RAMIFICATIONS. THE NEW PUBLICATION IS QUITE WELL KNOWN BUT THEY WERE GOING TO BE ENGAGE AS PART OF THE 8TH EDITION SO THEY'RE IMPORTANT AND HAVE BEEN PART OF SEVERAL MEETINGS WITH THEM AND THEY SEEM LIKE THEY'RE VERY ORGANIZED, READY TO MOVE THAT FORWARD AND THEY WILL PLAY A CRITICAL ROLE IN KEEPING THE CHAPTER ON TRACK WHICH WAS A BIG PROBLEM LAST TIME AND MAYBE ORGANIZING AN STRUCTURING THAT PROCESS. ALSO AS SEER I HEARD TODAY IS DOING SOME REBRANDING, ALSO ARCJCC IS DOING REBRANDING. PART IS KIND OF A POSITION THEY WERE GOING TO TRY TO KEEP THE STABLE ANATOMIC STAGE WE ALL ASKED FOR. I GUESS A YEAR AND A HALF AGO. AND THAT THEY ARE GOING TO EMPHASIZE THAT WE WANT VALIDATED BIOMARKERS. SO THE LEXICON PROJECT. IT'S AJ CCC UICC. MY UNDERSTANDING IS IT'S REALLY TO TRY TO GET ALL THE VARIOUS STAGE GROUPS SPEAKING THE SAME LANGUAGE WHICH IS AN EXCELLENT THING TO TRY TO DO. AND I THINK THE NEED IS OBVIOUS, EVEN WITHIN THE UNITED STATES WE FIND WE'RE SAYING ONE THING AND WE FIND OUT THE PERSON ACROSS THE TABLE IS MEANING SOMETHING COMPLETELY DIFFERENT COMING TO STAGING. SO I THINK IT WILL HELP IN TERMS OF DEFINING AND FINDING OUT USING VARIOUS DEFINITIONS. SO THE APPROACH IS TO FIND OUT WHAT TERMS ARE USING PEOPLE USE AN TRY TO UNIFY THOSE AND USE THAT IN FUTURE ADDITIONS OF AYCC STAGING AND TN AND F WHICH HOPEFULLY WILL SIMPLIFY AS WELL IF WE CAN COME UP WITH STANDARD TERMS WE'RE USING. SO LET'S GO TO THE 8TH EDITION, WHICH IS REALLY PRIMARY INTEREST. SO I KEEP ASKING WHAT IS THE PUBLICATION DATA? TEAM SEEMS TO FLY BY. SO THE TENTATIVE PUBLICATION DATE CURRENTLY IS MID 2015. TO BE EFFECTIVE FOR CASES DIAGNOSED IN 2016. THAT RAISES A FEW CONCERNS FOR ME RIGHT AWAY, WE MAY WANT TO BRING UP BECAUSE THAT SEEMS SHORT IN MY MIND. THAT'S SOMETHING I THINK WE WANT TO KEEP AN EYE ON. SO THERE'S AN 8TH EDITION WORK GROUP, THAT'S KEY TO HOW THE 8TH EDITION WILL COME TOGETHER. THEY ARE RESPONSIBLE NOT FOR DOING THE WORK BUT SETTING THE CRITERIA, FOR PRODUCTION AND PROTOCOL FOR CONTENT DEVELOPMENT AND DEVELOPING A TIME LINE FOR THE PROCESS. PART OF THAT PROCESS IS HIRING THE EDITOR CRITICALLY IMPORTANT IN TERMS OF FOCUS. THEY'RE FOCUSED ON KEEPING THE RAREIOUS CHAPTER AUTHORS WHERE THEY SHOULD BE AND KEEPING ON TIME. SO THE PROCESS YOU CAN IMAGINE FOR AJCC INCLUDES A LOT OF PIECES. REVIEWING CATALOGING THE LITERATURE AND COLLABORATION IS IMPORTANT. TO ME THIS IS THE KEY. WE HAVE HAD DISCUSSIONS ON THE EXECUTIVE COMMITTEE ABOUT SOME OF THE FLAWS IN THE 7TH EDITION. THAT CHAPTER AUTHORS WENT THE WRONG WAY, THEY WERE LATE, ONE EGO WITH ANOTHER EGO HEAVEN FORD BY THAT HAPPEN WITH M. CXFCD. CXFCS BUT SOMETIMES IT DOES. EXPERTS DIG THEIR HOLE IN THE SAND AND REFUSE TO BUDGE. AND THERE'S BEEN FRANK DISCUSSION ABOUT THAT WHICH IS QUITE ENCOURAGING. AND A LOT OF DISCUSSION ABOUT HOW DO WE STANDARDIZE THE METHODOLOGY, HOW DO WE SAY THIS IS THE CRITERIA FOR MAKING THE CHANGE IN THE STAGE, THIS IS THE CRITERIA FOR MAKING A CHANGE IN BIOMARKERS SO THIS WHOLE WORK GROUP IN TERMS OF SETTING UP PROCESS IS IMPORTANT. LIZ WARD IS ON THE GROUP, RITA WILSON IS ON THAT GROUP. THERE ARE SOME OPPORTUNITIES TO PROVIDE INPUT TO THAT GROUP. IF YOU HAVE IDEAS, WHETHER YOU WANT TO GO THROUGH CAROL OR KATHY OR ME OR SOME OTHER FORMAT, NOW IS THE TIME TO BE SAYING HEY, LET'S DO THIS DIFFERENTLY, LET'S DO IT THIS WAY. TRYING TO REMEMBER WHICH OTHER -- I WANT TO GO BACK. ACTUALLY TALKING TO KAREN PAULETTE AT CRC, SHE'S A GEM. SHE'S ACTUALLY INCREDIBLY BRIGHT WITH VERY GOOD IDEA. AS I WAS COMING TO GIVE THE TALK SHE GAVE ME ONE O HER IDEAS, I THINK IT'S A GOOD ONE. IN¨A9„ THE 7TH EDITION THERE WERE CTRs ON EACH COMMITTEE. BUT AS YOU CAN IMAGINE ONE CTR PITTED AGAINST 12 POSITIONS WHO DO YOU THINK GETS HURT? NOT THE CTR. SO HER IDEA IS TO ACTUALLY PUT IN PLACE A REQUIREMENT FOR REACH DRAFT CHAPTER TO BE REVIEWED BY CTR AND I SUGGESTED WHAT ABOUT CENTRAL CANCER REGISTRY FOLKS? HOSPITAL REGISTRY FOLKS. SO THERE WOULD BE IN THE DRAFT PROCESS A PLACE TO SAY WHOA, STOP. DO YOU KNOW HOW THIS BIOLOGICAL MARKER IS MEASURED? IS IT STANDARD? IS IT NECESSARY TO BREAK THIS INTO FIVE PIECES? SO THOSE KINDS OF THINGS. SO NOW IS THE TIME TO BE PUTTING AND PUT IN SO DONE HESITATE TO PROVIDE IDEAS. SO I WANT TO TALK ROLLING UPDATES. O IT'S A LITTLE UNCLEAR EXACTLY HOW THIS WORKS. I SUSPECT WHAT IT'S GOING TO HAPPEN IS THE 8TH EDITION WILL COME OUT HOPEFULLY BETTER THAN TERMS OF ORGANIZATION BUT NOT IN ROLLED OUT FASHION. BUT AFTER THAT WHEN THERE'S A CHANGE IN STAGING FOR CANCER, FOR BREAST CANCER, MAYBE THEY'LL MOVE THE USING THE BIOMARKERS TO DISTINGUISH THOSE CANCERS AN P MOVE AWAY FROM THE OTHER CRITERIA PRIMARILY USED. THAT AJCC WILL MAKE THE CHANGES. AND THEY WOULD THEN BE REFLECTED IN COLLABORATIVE STAGE. THERE'S GOOD NEWS AND BAD NEWS WITH THAT, ONE IS MORE FREAK CHANGES OCCUR AT COC AND CENTRAL REGISTRY. THE BENEFIT TO THAT, I MAYBE NAIVE BUT THIS IS MY HOPE, IS THAT BY BRINGING OUT CHANGES NOT AT ONCE BUT A FEW AT A TIME, THAT THERE WOULD BE TIME FOR TRAINING, EDUCATION, AND PREPARATION OF THE IT PIECES IN A MORE THOUGHTFUL WAY THAT CAN BE ABSORBED MORE READILY. EVERYTHING SEEMED TO BE DIFFERENT, ALL AT ONCE. SO THAT'S THE HOPE. THERE'S CERTAINLY CHALLENGES THAT HAD NPR REGISTRY SAY TO ME PLEASE GOD NOT MORE. DONE MAKE ANY MORE CHANGES. THIS IS THE WAY IT'S SUPPOSED TO ROLL OUT. I THINK IT'S SOMETHING THAT MAY MORPH OVER TIME APPROXIMATE SOMETHING ELSE -- AN SOMETHING ELSE TO KEEP AN EYE ON. I WASN'T SURETYED TO TALK ABOUT IT BUT SINCE BRENDA BROUGHT THIS UP, THERE IS A MOLECULAR MODELERS WORK GROUP, THAT'S THE BIOMARKER GROUP THAT BRENDA REFERRED TO BUT THERE MAYBE ANOTHER. I WAS A LITTLE RELUCTANT TO TALK ABOUT THIS BECAUSE I HAVE BEEN IN DISCUSSIONS WITH THEM APPROXIMATE EVERY TIME I TALK I HEAR SOMETHING DIFFERENCE. THEY ARE TRYING TO LOOK AT SOME THINGS NOT TERRIBLY RELATED TO US IN TERMS OF LOOKING AT ALGORITHMS TO PREDICT OUTCOMES BUT THERE ALSO SEEMS TO BE PART OF THIS PROCESS LOOKING AT WHAT IS A VALID PROGNOSTIC BIOMARKER. A USEFUL BIOMARKER SO THEY WILL PLAY A FAIRLY IMPORTANT ROLE. THERE IS ALWAYS AND IF. IF AND BUT. SO RIGHT NOW I HAVEN'T SEEN CONSENSUS FROM THAT GROUP, THEY DID A SURVEY AN PHYSICIANS STILL SEEM TO BE ALL OVER THE PLACE IN TERMS OF WHAT THEY THOUGHT WAS IMPORTANT. SO THERE IS A FAIR AM OF WORK TO BE DONE. 2015 IS CLOSER THAN WE THINK. IT'S ANOTHER PLACE WHERE I THINK KEEPING AN EYE ON WHAT'S GOING ON AND HAVING INPUT. A NUMBER OF PEOPLE ON THAT GROUP IS PRETTY IMPORTANT. I WOULD LIKE TO ACTUALLY SOMETHING THAT'S NOT ON MY SLIDE, ONE OF THE THINGS THAT I BROUGHT UP AT THE AJCC MEETING THIS FALL, IN A PRESENTATION TO AJCC, IS CAN WE DISCONNECT THE AJCC MANUAL IN SOME CASES FROM COLLABORATIVE STAGE? REASON I SAY THAT, AND HOPE THAT IS BECAUSE IF PHYSICIANS DON'T USE COLLABORATIVE STAIN TO TREAT PATIENTS. -- STAGE TO TREAT PATIENTS. THEY USE THE AJCC MANUAL SO MAYBE THERE'S THINGS IN THE MAN Y'ALL BECAUSE WE DONE WANT TO GET -- MANUAL BECAUSE WE DONE WANT TO GET IN THE WAY OF IF PHYSICIAN TREATMENT, PHYSICIANS NEED WHAT THEY NEED. BUT PERHAPS TRANSLATING TO COLLABORATIVE STAGE THERE MAYBE DETAILS THAT ARE NOT NEEDED AT THE REGISTRY LEVEL POPULATION LEVEL WE CAN LET GO OF. IT WILL BE NICE TO THINK THROUGH THAT AS WELL. QUESTIONS. [APPLAUSE] >> MODELING GROUP OR PROGNOSTIC GROUP BECAUSE I DIDN'T UNDERSTAND HOW THAT WOULD FIT IN WITH THE STAGING. THAT GROUP SEEMS TO BE MORPHING ALL OVER PLACE BUT I'M HOPING WHAT THEY WILL BE ABLE TO DO IS NARROW DOWN WHICH BIOMARKERS ARE REALLY RELEVANT NOT SO MUCH FOR STAGING BUT FOR THESE PROGNOSTIC FACTORS WHICH IS KIND OF BIOMARKERS PROGNOSTIC FACTORS THAT SEEM TO BE THE WAVE OF THE FUTURE. >> THERE'S ONE ON THAT, (INAUDIBLE) AT THE END MAKING A DISCONNECT BETWEEN AJCC AND COLLABORATIVE STAGE, ONE THING THAT CONCERNED ME THAT HAPPENED IN THE BACK OF MY MIND, IF WE'RE LOOKING TO THIS POPULATION DATA SET TO ASSESS TREATMENT AND THEY'RE MOVING IN A WAY WHERE TREATMENT IS BEING RECOMMENDED ASSOCIATED WITH MODELS, PROGNOSTIC MODELS OR ADDITIONAL INFORMATION, WILL WE LOSE THAT CONNECT? >> I THINK THE PROBLEM IS WE TALK IN GENERALITIES. I'M GUILTY OF IT. SO I THINK WHAT WE'RE TRYING TO AVOID ARE PROGNOSTIC FACTORS ARE NOT PROVEN, NOT IN WIDE USE, 50,000 TESTS VENDORS ARE TRYING TO DEVELOPMENT SO I THINK THERE'S KIND OF -- IT'S OBVIOUS OF A TRIAL PERIOD WHERE THINGS SOLIDIFY AND IT BECOMES IMPORTANT. IT'S KIND OF FIGURING OUT THAT PIECE WE DID DO LAST TIME. WE JUST KIND OF JUMPED IN, IT MAYBE THAT WE CAN HAVE SOME RECOMMENDATION INDUSTRIES CHECK AND WATCH A CERTAIN BIOMARKER UNTIL IT BECOMES CLEAR IT'S COMPLETE AND IT IS IN PRACTICE BEFORE WE TAKE IT OUT NATIONALLY OR SOMETHING LIKE THAT. YOU'RE ABSOLUTELY RIGHT. IF WE GO TO THE 3 OR 4, I FORGET BREAST CANCERS DEFINED BY THOSE PARTICULAR GENETIC TRAITS, YEAH, WE HAVE GOT TO MAKE THOSE CHANGES AND WE HAVE TO DO THAT. IF THAT'S HOW IT'S BEING DEFIND WE NEED TO DO THAT, BUT WE NEED TO DISTINGUISH BETWEEN THOSE CRITICAL AN THOSE WELL IT'S KIND OF IN PROCESS AN THEY'RE FIGURING IT OUT. >> THERE ARE MANY ACTIVITIES ONGOING IN THIS WHOLE BIOMARKER MOLECULAR MODELER WORLD. I CAN'T KEEP UP WITH THEM. PART OF THE LEK CON GROUP AND A MEETING THAT WAS HELD AT THE UICC IN MONTREAL, PRESENTED FOR -- IN THAT FORUM BECAUSE WHAT I UNDERSTAND IS THERE ARE ALL THESE MODELS OUT THERE. SO SHE BUT NOT ONLY LOOKING AT THE BIOMARKER AND ITS RELEVANCE BUT LOOKING AT THOSE MODELS AND THINGS BEING USED AND THINKING ABOUT ARE THERE CRITERIA HOW YOU BE ABOUT GETTING TO THE ENTITY. I DON'T KNOW THAT'S WHAT THEY FOCUS ON BUT I KNOW PARTICULARLY THE AYCC IS INTERESTED IN THE USE OF THOSE TOOLS IN THE CLINICAL SETTING AND FACT THAT THAT FEEL IS NOT STANDARD AND SO BOB, ANGELA, THE IMPORTANCE OF ONE OF THOSE GRANTS WE WERE LOOKING AT THE OTHER DAY, OKAY? >> IF YOU HAVE A MODEL TO PUT MANY A PROGNOSTIC FACTOR AND IT'S SUCCESSFUL PREDICTING OUTCOMES THAT WOULD TELL ME THIS IS SOMETHING THAT SEEMS RELIABLE AND USEFUL. THERE IS A TIE IN BUT THAT GROUP SEEMS TO MORPH DAILY. >> I HAVE AN OVERLAPPING QUESTION AS WE. YOU TALKED ROLLING RELEASES, FOR THE 8TH EDITION AND THEN YOU TALKED ABOUT YOU HOPE THIS WOULD ALLOW TIME FOR TESTING, EVALUATION OF THAT TESTING AND TRAINING. IS THAT ACTUALLY BEING -- THAT COMPONENT FOR THE SURVEILLANCE COMMUNITY BEING PUT INTO THE TIME LINE FOR THE RELEASE OF AJCC 8TH EDITION? SEEMS THE TIME LINE IS TIGHT AND SEEMS LIKE THEY'RE GOING TO PUT OUT A ROLLING MACHINE THOU SHALL DO THIS, THERE IS NO ROLLING EVALUATION WE' BACK TO THE 7TH EDITION OF AJCC CHECKING VARIABLES AND QUESTIONING IS THIS REALLY WHAT WE'RE GOING TO FIND IN THE POPULATION CENTERS THAT PROVIDE FOR HEALTHCARE FOR THE POPULATION? MANY COME FROM ACADEMIC INSTITUTIONS, WHERE THEY PROBABLY ARE AHEAD OF THE CURVE IN TERMS OF WHAT THEY DO AND REGARDING TREATMENT BUT WE'RE MEASURING WHAT'S GOING ON IN THE POPULATION SO IS THAT FACTORED TO THE TIME LINE, THE TIME NECESSARY TO EVALUATE WHETHER THE VARIABLES ARE GOING TO BE THERE WHEN WE GO OUT TO THE POPULATION AND BEING ASKED TO RECORD THE CONVERSATION? >> I WOULD LIKE THE SAY YES BUT WHAT WILL HAPPEN WITH THE 8TH EDITION, IT'S SIMILAR O THE 7TH THAT IT WILL BE A MASS CHANGE BECAUSE WE HAVEN'T BEEN DOING UPDATES. BUT AFTER THAT BIG UPDATE THERE WOULD BE THE ROLLING CHANGES, THAT IS MY IMPRESSION. THEY HAVEN'T SAID THAT BUT I CAN IMAGINE DOING ANYTHING DIFFERENT HAVING HEARD THE CONVERSATION. ONE THING WE CAN DO, SEVERAL POSSIBLIES, ONE TO DO SEPARATION OR DELAY BETWEEN AJCC AND CS. AND/OR AS WE PROVIDE INPUT SAY GIVE US THE EVIDENCE, THAT COULD BE A USE SOMETHING SIMILAR IN TERMS OF ASSESSING BIOMARKERS, SHOW US THE EVIDENCE THIS IS IN USE. IF PHYSICIAN AND WEST TEXAS IS ACTUAL HI USING THIS. SO THOSE ARE TWO OPPORTUNITIES BEFORE THE 8TH E ACQUISITION AND AFTER THAT ROLLING UPDATES. I WOULD LIKE TO SAY IT'S GOING THE HAPPEN BUT I THINK THAT WOULD BE A LIE. >> I HAD ANOTHER -- A COMMENT ABOUT THE TIME LINE, I UNDERSTAND THE NEED TO SIMPLIFY OVER THE LAST YEAR I'M BRACED THE NEED TO SIMPLIFY. BUT OF ALL THE RESOURCES SOFTWARE CHANGES, TRAINING, EVERYTHING INTO SIMPLY FEWING CS, IF THIS TIME LINE HOLDS MY UNDERSTANDING IS THE SIMPLIFY CASE WOULD BE IN 0205 SO TALKING IMPLEMENTING NOT IN 2014 BUT 2015. THAT IS WHEN AJCC PLANS TO HAVE THEIR CHANGES SO TO DO ONE INDEPENDENT OF THE OTHER SEEMS -- >> I'M RESPONDING TO THIS ANDTRY TO GIVE A MORE CIVILIZED RESPONSE. SO IT'S TAKEN A YEAR AND A HALF TO GET WHERE WE ARE NOW WHICH IS IN MY OPINION NOT FAR. SO I FEEL LIKE WE NEED TO PUSH. IF WE HAVE THINGS LIKE WHAT JENNIFER HAS DONE AND START SYSTEMATICALLY GOING THROUGH AND SIMPLIFY AND SAY THIS IS WHERE WE'RE GOING TO CLASH AND WE HAVE THAT READY WHEN CHAPTER COME IN, WE CAN ENCORP RATE THIS SITUATION INTO THAT OPPOSED TO NOTHING AND AJCC 8TH COMES OUT, COPE THINGS THE WAY THEY ARE, WE'LL ADOPT IT IN, CHANGE IT LATER, DA, DA, TA, DA, DA. SO THAT'S WHAT I FEAR. WE DON'T AT LEAST ON PAPER HAVE WHERE WE WANT TO GO AND HOWITE SIMPLIFIED (OFF MIC) >> YES. BUT IF WE DONE START NOW WE'RE NOT READY. IT'S 2013. >> THERE IS A REAL CONCERN ABOUT IF WE DO SIMPLIFICATION NOW ESPECIALLY WITH AJCC COMING FOR 2015, SO WE'RE TALKING DIAGNOSIS DAY 2016. >> IT'S 2015 FOR RELEASE. >> SO THE EARLIEST WE CAN GET CHANGES IN IS 2014 WITH RELEASE OF 0205 AND WE CAN'T DO IT. EARLIEST BEYOND THAT IS 2015. WHY MAKE CHANGES IN 2015 AND YOU HAVE AJCC 8TH EDITION AN BACK TO WHERE WE WERE PUTTING TOGETHER CS VERSION. SO THOUGH I UNDERSTAND FRANCIS PLEASE CHANGE IT NOW, WE CAN'T AFFORD TO GO WITH THIS ANY LONGER ONE REASON WE'RE NOT PUSHING TOO HARD IS WE DONE WANT TO END UP IN THE SAME BOAT AGAIN TRYING TO INCORPORATE AJCC 8TH EDITION. >> THIS'S ONE REASON NOT PUSHING FORWARD. >> I THINK PART OF THE REASON IS COMING TO SOME AGREEMENT ABOUT WHAT TO DO. >> I AGREE WITH CHRISTIE, WE KNEE TO START NOW, WE NEED TO MOVE FORWARD MAKING CHANGES AN HOLD THEM UNTIL WE SEE 8TH EDITION. BECAUSE YOU ONLY CHANGE ONE TIME. I AGREE WITH YOU. >> I THINK WHAT WE MAY DO -- I'M SORRY, I DON'T WANT TO INTERRUPT YOU VIVIEN. ONE THIS CAN WE MAY TOO NOT PROMISING ANYBODY IS TO TRY TO MANAGE PROBLEM AT THE CENTRAL REGISTRY LEVEL THROUGH CONSOLIDATION AN COLLAPSING AND AUTOMATING THERE. TRY TO ALEAFIATE THE BURDEN OF TRYING TO CONSOLIDATE THIS DETAILED INFORMATION. >> THIS IS NOT A QUESTION BUT FOR PEOPLE IN THE HIGH UP LEVELS HAVE ANY CLUES ABOUT WHAT KIND OF CHANGES COMING UP WITH AJCC 8TH ARE WE GOING TO HAVE MORE SITE SPECIFIC FACTOR, ARE WE GOING TO -- I MEAN, HAVE WE ANY CLUE AT ALL, THE 7 REVISION IS A HUGE MAJOR CHANGES WITH NEW DATA ITEMS. >> I DON'T KNOW. BUT I WANT P TO BET YOU THERE'S GOING TO BE MORE PROGNOSTIC FACTORS AND BIOMARKERS. BUT WE NEED TO FOCUS ON -- TRY TO TO FOCUS ON ONES CRITICAL AND NOT SOMEONE'S SUBSPECIALTY THEY WORK ON IN THE HOSPITAL AND WANT IT INCLUDED IN IT. THE PANEL GETS GOING WE MAY HAVE MORE IDEAS [APPLAUSE] >> WE'LL BREAK FOR LUNCH NOW AND COME BACK IN AN HOUR ONE CLOCK. THE CAFETERIA IS UPSTAIRS. THERE'S ALSO A STORE UP THERE. >> I THINK WE'LL TRY TO GET STARTED AGAIN. SO THE NEXT TALK IS VIVIEN, SHE H GIVE A REPORT BACK FROM A GROUP THAT'S BEEN WORKING ON -- THINKING ABOUT DATA RELEASE ISSUES. VIVIEN AND CHUCK WILL BE SHARING THE PRESENTATION. >> CAN Y'ALL HEAR ME? OKAY. I HAVE A LOUD VOICE TOO I GUESS WE'LL BE OKAY. I WANT TO THANK BRENDA AND THE EARLIER PRESENTERS. THEY'RE ACTUALLY PROVIDES US WITH A LOT OF THE BACKGROUND INFORMATION WHICH IS HELPERFUL FOR THIS TO BUILD ON. THIS IS FROM THE WORK GROUP CALLED COLLABORATIVE STAGE VERSION 2 DATA RELEASE WORK GROUP. I WANT TO EMPHASIZE THIS IS A DATA RELEASE, WE'RE NOT TALKING ABOUT WHETHER THE DATA SHOULD BE COLLECTED AND EVERYTHING. WE'RE JUST TALKING ABOUT WHETHER WE RELEASE THE DATA OR NOT. HERE IS MEMBER OF OUR WORK GROUP, IF YOU LOOK AT HERE YOU CAN SEE THAT MEMBERS REPRESENTING THOSE WHO ARE FROM THE N FOLKS AS WELL AS REGISTRY FOLKS. WE ALSO HAVE THE DAYTIME USER E ON THE OTHER HAND WE ALSO ACCRUE THOSE HE CAN PERS IN THE FIELD SO WE CAN UNDERSTAND NOT ONLY RESEARCHERS WANT TO USE THE DATA BUT WHETHER THE DATA CAN BE OBTAINED, IS IT AVAILABLE AND HOW COMPLETE IT IS, HOW THE DATA IS COLLECTED. I HIGHLIGHT THE PERSON IN GOLD OR YELLOW, WHATEVER COLOR YOU CAN SEE THIS AND THEY ARE THE GOLD MEMBERS IN OUR WORK GROUP. LYNN REEVES P AND MAY CHEEP WHO BOTH HAD DONE -- SPENT A LOT OF HOURS POPULATED OR GENERATED ALL THESE SPREAD SHEETS SITE SPECIFIC FACTORS SO OUR WORK GROUP CAN EVALUATE THEM. THEY ALSO HELPED ME WITH SOME OF THE GRAPH AND TABLES SO I'M VERY CHALLENGED AS FAR AS DOING THAT. A LITTLE BACKGROUND HOW THIS WORK GROUP IS FORMED. IF YOU HAVE HEARD FROM THIS MORNING, OKAY, WE KNOW THAT THE COLLABORATIVE STAGE VERSION 2 INCLUDES A LOT OF VARIABLE INFORMATION, SITE SPECIFIC FACTORS FOR DIFFERENT CANCER SCHEMAS. WE ALSO UNDERSTAND THAT BASED ON AJCC, THE SITE SPECIFIC FACTOR ACTUALLY HAVE THE COLLABORATIVE STAGE VERSION 2 MAKE THE TMM MORE RELEVANT CLINICALLY. BECAUSE IT NOT ONLY IMPROVES ANATOMIC STAGE INFORMATION, WHETHER IT SPREAD TO THE LYMPH NODE AND METASTASIZE TO THE BRAIN, IT'S ALSO NON-ANATOMIC INFORMATION SUCH AS PSA AND THE GLEASON SCORE WHICH ARE NOTHING TO DO IN THE ENDOTOMMIC SITE BUT IMPORTANT AND THEY HAVE BEEN USED TO HELP OUT WITH TNM OR HACC STAGING. WE ALSO NOTE THAT THE SITE SPECIFIC FACTOR IN THE COLLABORATIVE STAGE VERSION 2 INCLUDE A LOT OF PROGNOSTIC AND PREDICTIVE FACTORS WHICH HAVE BEEN THE BIOMARKERS WHICH IS KIND OF THE BUZZ WORD THIS DAY IN CANCER DISCOVERIES AND TREATMENT AND CANCER CARE. SO WE DECIDED THIS IS -- THESE ARE IMPORTANT DATA. WE NESTLED TO USE TO EVALUATE OUTCOME. IT'S BEEN DISCUSSED WE SPENT A LOT OF RESOURCES IN ALL DIFFERENT ORGANIZATIONS AS FAR AS SPENDING MAPPING, TRAIN, DATA COLLECTION SO WE FEEL LICK THOSE DATA NEED TO BE RELEASED FOR RESEARCH USE, THIS PUBLIC TAXPAYER DOLLARS, WE NEED TO MAKE SURE THEY CAN BE USED. ON THE OTHER HAND WE ALSO FEEL LIKE THIS DATA NEED TO BE SOMEHOW ASSESSED AND ADEQUATELY -- VERY SYSTEM MAT CHAIR EVALUATE SO WE UNDERSTAND THE COMPLETENESS OF THE DATA, THE REPRESENTATIVE OF THE KNOWN VALUES WHAT IS THE QUALITY OF THOSE. THEREFORE, WITH ALL THIS BACKGROUND THIS WORK GROUP IS BEING CHARGED TO EVALUATE THE SITE SPECIFIC DATA EYE TESTIMONIES. WE DO NOT TWO INTO THE STAGING DATA BUT SITE SPECIFIC DATA ITEMS ARE THE ONES THAT WE HAVE THAT WORK GROUP EVALUATE AND THE RATIONALE IS WORK GROUP CAN MAKE SOME RECOMMENDATION TO SEER P I AT THIS MEETING. SO WHAT DATA PLOT DO WE USE? VAIL TO BELIEVE THE WORK GROUP IS THIS IS BASED ON F THE FEBRUARY DATA SUBMISSION MADE EARLIER THIS YEAR. WE KNOW IN THAT DATA SUBMISSION IS MORE TO ASSESS COMPLETENESS. AND WE WERE KIND OF TOLD THAT WELL THE EDITING OF THE CASE IS CLEAN UP THE CASES, NOT A HIGH PRIORITY. ONE WANTED TO KNOWk ) THE DATAS ARE. SO WITH THAT IN MIND WE KNOW THIS -- SOME OF THESE OR MANY OF THESE SITE-SPECIFIC FACTOR HAD NOT BEEN EDITED BY THE SEER REGISTRY. SO KEEP THAT IN MIND. THESE ARE NOT THE FINAL DATA THEY USUALLY RELEASE TO THE PUBLIC. THIS DATA SET EXCLUDES CHEROKEE AND THE ARIZONA INDIANS BECAUSE A SMALL NUMBER AND ALSO BECAUSE A THE CONVERGE OF CONVERTED TO HACC STAGE OR SOMETHING. WE ALSO EXCLUDE ANY AUTOPSY CASES WITH THE UNDERSTANDING THAT A LOT OF ALL THESE SITE SPECIFIC FACTORS ARE NOT AVAILABLE IN CASES SO IT WOULDN'T BE FAIR INTO COLLUDE THEM IN THE DATABASE WHEN DOING THE ASSESSMENT SO THE APPROACH THAT WE TAKE IS WHAT WE CALL A VERY METHODICAL AND AND INFORMED APPROACH. WE SELECT ONE SCHEMA AT TIME AND WE EVALUATE IT, WE LOOKED AT EACH SITE SPECIFIC FACTOR IN THAT SCHEMA. WE ASSESS THE COMPLETENESS. WE'RE ALSO TRYING TO FILTER OUT THE NON-APPLICABLE CASES FROM THE DENOMINATOR. WHEN WE TRY TO ASSESS THE COMPLETENESS. THAT'S TO GIVE AN EXAMPLE, IF YOU ARE EVALUATINGING WHETHER THE LYMPH NODE THAT HAS SHOWN TO BE NEGATIVE WHETHER YOU HAVE DONE ANY IAC IMMUNOHISTOCHEMISTRY TO DETECT ANY ISOLATED TUMOR CELLS. THEN THE NO, MA'AM NAYTOR SHOULD BE ONLY CASES THAT YOU KNOW WERE LYMPH NODE NEGATIVE. OKAY? SO WE KIND OF ELIMINATE OR FILTER OUT THE NOT APPLICABLE CASES. WE'RE ALSO TRYING TO UNDERSTAND WHAT THE MN EWE TELL ABSTRACTERS TO TO THE AND HOW CODERS ARE SUPPOSED TO DO SO IF EDUCATIONEN FORM APPROACH FOR ALL THE WORK GROUP LEARNING EVERY CONFERENCE CALL WE'RE LEARNING SOMETHING NEW, WE LOOK AT THE CS MEN YOU TRYING TO GET A BETTER UNDERSTANDING, WE ALSO FOR THOSE HAVE KNOWN VALUES WE ASSESS TO SEE HOW REPRESENTATIVE THEY ARE. ARE WE PICKED UP A BIAS SAMPLE OR ARE THEY REPRESENTING ALL THE CASES THAT WE MIGHT HAVE UNKNOWN VALUES? AS AT THIS CUSSED THIS MORNING IF THEY WERE STAGE RELATED SITE SPECIFIC FACTOR, WE NOTED THEY ARE AND THEY ARE IMPORTANT E THESE ARE THE ONES WE LIKE RESEARCHERS OR -- TO BE USED. AND ALSO WHETHER THOSE DATA ITEMS HAVE BEEN CHECKED IN SIGHT SPECIFIC COLLABORATIVE STAGE VERSION 1. OUR RATIONALE IS THIS CASE, THIS DATA COLLECTED SINCE 2004 YOU ASSUME THEY KNOW HOW TO CODE. SO WE WANT TO ASSESS THAT WAY TOO. IN ADDITION EACH SITE SPECIFIC FACTOR BY A CELL AND EVALUATING THEM WE LOOK AT INTERVIEW CONSISTENCY AND PART OF THE THING WE LOOK AT MOSTLY IS LOOK AT THE LAB VALUE VERSUS THE INTERPRETATION ASSUMING THERE WILL BE SOME VERY NICE CORRELATION EVEN UNDERSTANDING THAT LAB VALUE IS SOMETIMES VARIES FROM ONE TO ANOTHER BUT IN GENERAL YOU SEE SOME CORRELATION BETWEEN THE TWO. THEN WE GO THROUGH DETAILED PROCESS OF DELIBERATION NOT ARGUMENT BUT EXPRESS OUR OPINION WHAT WE THINK WAS THE RIGHT WAY TO DO AND WE COME UP WITH SOME DECISION AND THE LAST PART CHUCK IS GOING TO GIVE US MORE ABOUT HOW WE NOT QUITE COME UP WITH SOME CONSENSUS. THIS IS HOW WE START. THIS IS SIMPLIFIED FOR THOSE NOT INVOLVED IN THIS WORK GROUP. SAY WE START WITH A PROSTATE CANCER. AND THIS IS THE PROSTATE CANCER SCHEMA. AS YOU CAN TELL HERE THEY TELL YOU THE SCHEMA'S NAME IS PROSTATE, THEY TELL YOU WHAT ICD CODE SITE CODE IT IS AND WHAT HISTOLOGY CODE CONSIDER AS ACROSS CANCER SCHEMA. I WANT TO MAKE SURE THAT YOU ARE AWARE THAT THE SCHEMAS ARE A LITTLE BIT DIFFERENT FROM THE SEER THAT EVERYONE USED TO BE VERY COMFORTABLE AND GET USED TO IS THAT THE SITE RECODE ARE LIGHTLY DIFFERENT THAN THE SCHEMA BECAUSE OF THE HISTOLOGY THIS ONE OVER HERE, THIS ONE FOR PROSTATE CANCER THERE'S TEN FACTOR THAT THE SEER REGISTRY REQUIRE. HERE YOU SEE SOME COLOR SCHEME. THE PINK ONE OR WHATEVER COLOR YOU WANT TO CALL THAT, IS IMPORTANT. THESE ARE STAGE RELATED. SITE SPECIFIC FACTORS. SO YOU REQUIRE THIS IN ORDER FOR YOU TO STAGE. AND THE GREEN ONE ARE THE ONE THAT EITHER HAVE PROGNOSTIC OR PROGNOSTIC FACTORS, CLINICALLY SIGNIFICANT. WE HAVE COLORED THEM AS GREEN. IF YOU LOOK AT HERE, THE LAST COLUMN HERE, ACTUALLY TELL YOU WHETHER THESE SITE SPECIFIC FACTORS, WHAT COLLECTED IN VERSION 1 OF THE VERSION 1. IF YOU CAN SEE THERE'S THREE SITE SPECIFIC FACTORS FOR PROSTATE THAT WE COLLECT IN VERSION 1. SITE SPECIFIC 1 AND 2. 1 IS THE PSA VALUE, THIS IS THE VALUE. SITE SPECIFIC FACTOR 2 IS THE INTERPRETATION WHETHER POSITIVE NEGATIVE, SMALL TO LARGE. ONE YOU HAVE VALUE, OTHER YOU HAVE INTERPRETATION. VALUE IS REQUIRED FOR STAGING. YOU FIND ABOUT 83% HAD THE VALUE AND 87% HAD THE INTERPRETATION IN THE DATA. ALL CASES OR HISTOLOGIC CONVERT THERE IS A LIKELIHOOD YOU CAN GET A PSA VALUE IF YOU LOOK AT THE COLUMN HERE THIS IS A PAIR. THE SITE SPECIFIC IS THE GLOW SON VALUE AN SECONDARY VALUE. THIS IS THE PATHOLOGY PICK UP TWO AREA AND THEY GIVE VALUES ON HOW SEVERE THEY THINK THAT PATTERN REPRESENTS. BASED ON PRIMARY VALUES THEY CAN SOME UP AND COME UP WITH THE GLEASON SCORE HERE 7 AN 8, PA TEN VALUE AN SCORE IS BASED ON BIOPSY OR (INAUDIBLE) SO THIS IS A PAIR, THIS SCORE IS REQUIRED FOR STAGING. YOU CAN SEE THAT OUTFITTER WE GET 91, 93% THAT HAVE VALUE OF THE PATENT AND THE SCORE. WHEN WE DO THE FUTURE WHICH MEANS YOU DON'T -- YOU ONLY LOOKED THE CASES THAT HAVEx( BIOPSY, CLINICAL CASES NEVER HAVE BIOPSY WILL BE EXCLUDEED IN THE DENOMINATOR WHICH BRING UP OUR COMPLETENESS TO BETTER THAN 93% AND 96%. THIS IS THE FIRST SET OF THE SITE SPECIFIC FACTOR. THIS IS THE ARE E MAINING SIX SITE SPECIFIC FACTOR. SITE SPECIFIC FACTOR 3 IS PATHOLOGY EXTENSION. AGAIN, ONE OF THE SITE SPECIFIC WE COLLECTED IN CS VERSION 1. IN ORDER TO GET ACCURATE PATHOLOGY EVALUATION, IT HAS TO BE BASED ON PROSTATECTOMY. BIOPSY DOESN'T GIVE A FULL PICTURE, YOU DONE KNOW HOW BODY EXTEND IF YOU ONLY HAVE A VERY SMALL BUY SUBPOENA/. SO THEREFORE WHEN YOU LOOK AT THE PERCENT COMPLETE IS 35% IF YOU LOOK AT ALL CASES, HOWEVER, IF YOU LIMIT IT YOUR DENOMINATOR TO ONLY CASES OF POST HE PROSTATECTOMY YOU FINE OUT 88% OF CASES HAVE PROSTATECTOMY PROVIDE A EVALUATION OF THE EXTENSION. THEN YOU LOOK AT THE OTHER TWO SETS, THIS ANOTHER PAIR OF WHAT WE TALK ABOUT IS PRIMARY OR SECONDARY GLEASON VALUES BUT THIS ONE IS BASED ON PROSTATECTOMY. THE FIRST TWO ON BIOPSY T SCORE AGAIN IS SUMMING UP THE PATENT AND AGAIN IT'S BEING BASED ON PROSTATECTOMY. YOU CAN SEE IF YOU LOOK AT SUCH ALL CASES ONLY A THIRD BUT IF YOU LIMIT ONLY TO THOSE WHO HAVE PROSECTOMY YOU GO UP TO 85%, CLOSE TO 90%. AND THEN WE HAVE SITE SPECIFIC 11 IS ACTUALLY IF THERE IS A PROSTATECTOMY WITH A PATHOLOGIST GOING GIVE A PATTERN WE FIND OUT I KNOW MOST OF THE TIME EVEN IF YOU HAVE A PROSTATECTOMY ONLY 11% OF THE CASES DO A PATENT TO GIVE THE VALUE. AND THEN THE LAST TWO SITES SPECIFIC FACTOR HERE IS LOOK AT WHEN THEY DO A BIOPSY S HOW MANY BUY I DON'T KNOW CITY CORD THEY REMOVE AND HOW MANY THEY EXAM. YOU HAVE ONE POSITIVE, IT DOESN'T TELL YOU ANYTHING WHETHER 1 OUT OF 10 OR 1 OUT OF 1. I THINK THAT WILL BUY YOU SOME IDEA ABOUT THE EXTENT OF THE DISEASE. AGAIN, HE WILL TELL YOU THIS DATA HAVE BEEN COLLECTED IN VERSION 1 AND WHEN THE WORK GROUP ASSESS COMPLETENESS WE LOOK AT THIS ONE WITH THE APPROPRIATE DENOMINATOR. THIS IS OUR SUMMARY OF WHAT THE WORK GROUP DOES. THE HEIGHT OF THESE ARE ALL TEN SITE SPECIFIC FACTOR. WE ARE GROUPING INTO DIFFERENT GROUPS. WE HAVE FOUR IN RECOLOR, STAGE RELATED SITE SPECIFIC FACTOR. THEN WE HAVE FOUR THAT ARE ANATOMIC PROGNOSTIC GROUPING THEN TWO MORE RESEARCH INTEREST, YOU TALK ABOUT THE EXTENT OF DISEASE. THE HEIGHT OF EACH BAR ACROSS REPRESENT COMPLETENESS WITH FUTURE SO APPROPRIATE DENOMINATOR. AND WE GET EACH A RECOMMENDED CODE. ONE HERE MEANS THE WORK GROUP COMMAND CONSIDER THIS TO BE THE LEAST FOR RESEARCH USE OR THROUGH THE PUBLIC IN THE SEER STATS. THE ONE WE SAY AND MEANS THE ONE WE'RE NOT RECOMMENDED. THE ONE WE HAVE A QUESTION MARK HERE IS THAT WE LOOK AT THE DATA, WE'RE UNCOMFORTABLE WITH IT VALUES REQUIRE HACC FOR STAGING BECAUSE THEY NEED TO KNOW WHETHER IT'S LESS THAN 10, 10 TO 20, 20 AND ABOVE. SO IF WE DON'T -- IF WE DON'T PROVIDE THEM HOW ARE THEY GOING TO STAY APPROPRIATE WITH HACC VERSION 7. SO HE'S A NEED TO BE RELEASE BUT WE ARE LATE UNCOMFORTABLE OF RELEASING THE DATA. WE FEEL LIKE A LITTLE BIT HAS SOME INTERNAL FIRST WHY? THIS IS THE TABLE WE ARE PRESENTING IN HERE LOOKING AT A CROSS BETWEEN THE PSA VALUE OVER HERE AND INTERPRETATION. INTERPRETATION IS STRAIGHT FORWARD YOU'RE POSITIVE, NEGATIVE OR BORDERLINE. THE VALUE WE HAVE OVER HERE, THIS CUT POINT IS KIND OF -- WE KIND OF SELECT IT IN A WAY THAT WE THINK WAS MEANINGFUL. THE REASON IS IF YOU HAVE PSA VALUE OF.1 TO 4-MILLIGRAM PER MILLILITER, IT'S USUALLY CONSIDERED GENERALLY ACCEPTED A NORMAL RANGE. SO MOST IS GOING TO BE CONSIDERED NEGATIVE. 10 AND ABOVE SHOULD BE CUT POINT SO WE USE IT HERE AND IN BETWEEN IS WHAT WE CALL THIS MIDDLE LAYER. I WANT TO BRING YOUR ATTENTION TO THIS HIGHLIGHT IN PINK HERE. WHAT WE SAY HERE IS THAT MORE THAN HALF THE CASES IN SEER COMBINE DATA IN 2010 BEING CODED AS INTERPRETATION AS POSITIVE. PATHOLOGIST MAY WANT TO CALL IT POSITIVE. THAT MAY -- INTO USE 3.5 BUT TO HAVE MORE THAN HALF THE CASES NORMAL VALUE, AND CODE AS POSITIVE MAKES THIS LOOK A LITTLE BIT UNCOMFORTABLE ON DOING IT. I SEE HEAD NODDING HERE. WHAT WE THINK MIGHT BE A PROBLEM IS THAT THE CODING. MORE SPECIFIC SEER CODING MANUALS SAY YOU NEED ONE DECIMAL PLACE, IF YOU HAVE A PSA VALUE OF 3.5, YOU CODE TO 35, NOT 3. 35. SO ASSUMING IF THERE IS A CASE WITH A POSITIVE PSA, AND 15 AND SAY THE CODE IS SAY 15? OKAY I CODE 15 SEER 15, THE INTERPRETATION WILL BE POSITIVE BUT PSA VALUE OF 115 SUPPOSED TO CODE TO 150, NOT 15. SO WE SPECULATE SOME OF THESE INCONSISTENT HERE BECAUSE THEY FORGOT TO PUT THE DECIMAL POINT, THEY DIDN'T MULTIPLY BY TEN OR DON'T HAVE JENNIFER OR WHOEVER SHEET THAT YOU KNOW HAS CONVERSION OF THE MILLIMETER OR WHATEVER VALUE INTO THE CODING. SO THAT WAS MESSED UP SO THE GROUP REALIZE YES, IT'S STATES RELATED BUT LET'S TAKE A BETTER LOOK TO SEE WHAT IT IS. SO THAT'S WHAT WE DO FOR PROSTATE. WE DO THE SAME FOR BREAST. BREAST HAD MOST SITE SPECIFIC FACTOR. THERE'S TOLL OF 18. I WON'T GO OVER EACH ONE OF THOSE TABLES. YOU HAVE TO TRUST US. SIX HAVE BEEN COLLECTED IN VERSION 1, SITE SPECIFIC 1 TO 6 AND WE GROUP THEM INTO FOUR GROUPS, THREE WERE STAGE RELATED, TWO WERE PYROGENOUSTIVE FACTOR, THREE WERE PROGNOSTIC FACTOR RELATED TO TREATMENT AND WE HAD TEN SITE SPECIFIC BIOMARKERS RELATED TO TREATMENT. THIS IS THE GRAPH AGAIN, THE THREE SITE SPECIFIC FACTORS RELATED TO STAGE HAVE BEEN THREE, FOUR AN FIVE AND THEY ALL HAVE BEEN COLLECTED SENSE 2004 INCLUDING VERSION 1. SO WE HAVE BEEN COLLECTING FOR IT. THE FIRST ONE HERE IS LOOKED AMONG THOSE WHO HAVE LYMPH NODES IN BREAST CANCER WHAT IS THE NUMBER THAT THE POSITIVE NODE IS LEVEL 1 AND LEVEL 2. THAT DATA IS QUITE COMPLETE, WE HAVE CLOSE TO 95% COMPLETE. THEN WE HAVE TWO SITE SPECIFIC FACTORS WHO SAY IF THEY WERE NEGATIVE LYMPH NODES, DO THEY DO THE ADDITIONAL TESTS TO DETECT ISOLATED TUMOR CELLS WHICH ARE TINY BIT LEFT AND .2-MILLIMETER NOT MORE THAN 200 CELLS, MALIGNANT CELLS IN THE LYMPH NODE WHICH IS NOT CONSIDERED POSITIVE BUT ALSO SOME INDICATION ABOUT MAYBE CLEAR NEGATIVE LYMPH NODES. AND IF THEY DO THE DETECTION THE T IS THE TEST DONE BY IMMUNOHISTOCHEMISTRY? TESTS ARE BY MOLECULAR TITER TEST. FOR THE IHC IS CLOSE TO 50% WAS DONE, MOLECULAR TESTS ARE LEFT THAN 10. WE DECIDED COLLECTING VERSION 1 RELEASED IN THE SEER STAT DATA RECOMMENDING CONTINUING TO RELEASE THEM. THE ONE THAT GENERAL FER STAFF HAVING A LITTLE PROBLEM WITH SITE SPECIFIC 6 AND THIS ONE IS A BASIC COMPONENT IN THE TUMOR SIZE. AGAIN, IT'S NOT A STAGE RELATED BUT IS RELATED TO PROGNOSIS. THIS ONE WE RECOMMEND TO RELEASE AND THEN SITE SPECIFICALLY 7 IS KIND OF LIKE A GRAY BUT GRAY SYSTEM SPECIFIC FOR BREAST. SOMETIMES CALLED THE BLOOM RICHARDSON HISTOLOGIC BUT ALSO MITOTIC (INAUDIBLE) BETTER GRADING SYSTEM FOR BREAST THAN THE GENERAL GRADE THAT WE HAVE. SO WE COME IN TO RELEASE THEM 3 MORE OVER HERE PROGNOSIS BUT TREATMENT RELATED. SITE SPECIFIC 21 IS REFERRED TO AND RESPONDS TO NEOADJUVANT TREATMENT. ONE WILL ANTICIPATE OR EXPECT THAT SINCE THIS NEW ADJUVANT AND (INAUDIBLE) CASE THEY SHOULD KNOW WHETHER ANY TREATMENT ADJUVANT TREATMENT WAS GIVEN BEFORE THEY HAD THE SURGERY TO SEE WHETHER BECAUSE IT WAS FORMED SURPRISINGLY WE ONLY FIND 25% OF THE CASES THAT HAVE THAT INFORMATION. AND I THINK WHEN WE START TO LOOK AT THE STRUCTURE (INDISCERNIBLE) IT HAS TO BE STATED BY THE CLINICIAN. IF THE CLINICIAN DIDN'T SAY ANYTHING IT'S AN UNP KNOWN. THEN WE HAVE SITE SPECIFIC 22, 23 IS WHAT THEY CALL MULTI-CHAIN SIGNATURE METHOD, THE MOST TWO COMMON ONES ONCOGENE AN (INAUDIBLE). 21 GENES TO PREDICT WHETHER FOR STAGE 1 AND 2 NEGATIVE LYMPH NODE BREAST CANCER PATIENT WHETHER THERE WAS WHAT IS RISK OF RECURRENCE. FOR THOSE TWO WE FIND OUT VERY FEW PERCENT OF CASES HAVE INFORMATION AND WE RECOMMEND IT NOT RELEASE THAT. HERE IS THAT FAMOUS TEN BIOMARKERS OVER HERE. THE FIRST TWO IS ERPR. WE HAVE BEEN COLLECTING IT A LONG TIME AND WE GET VERY COMPLETE DATA OVER 90%. THEN WE HAD 8 SITE SPECIFIC FACTORS. ALL OF THEM RELATED TO HER-2. THE FIRST SET HERE, THE FIRST PAIR, HAS HER-2 DONELG BY THE TEST BY IMMUNOHISTOWHICH WILL CITY IS THERE TESTS. WHAT IS THE VALUE -- IMMUNOHISTOCHEMISTRY TESTS. WHAT IS VALUE AND INTERPRETATION. THE TESTS ARE USED QUITE OFTEN, THEN THE SECOND SET OF IT IS BY THE FLUORESCENT IN SITU LIBERALZATION TEST WHICH IS A MORE EXPENSIVE BUT BETTER TYPE OF TEST. YOU HAD THE VALUE AND INTERPRETATION NOT AS COMPLETE, BETWEEN 35 TO 40% WE HAVE OF THE CASES THAT HAVE THE INFORMATION. THIS FOR HER-THE IS BASED ON INVASIVE CASES WE EXCLUDE THE IN SITU WHICH SOMETIMES MAY NOT HAVE ADEQUATE TISSUE TO RUN THESE TESTS. THEN WE HAVE ANOTHER PAIR HERE IS A NEWER TEST CALLED KISH WHICH IS BASED ON COLOR CHANGE, IT'S A CHROME GENIC IN SITU FERTILIZATION. WE FEEL VERY FEW CASES HAVE INFORMATION. THEN WE HAVE OTHER ONE THAT SAY OTHER TESTS OR IF THEY SAY THAT HER-2 IS POSITIVE THEN YOU CODE IT HERE. THEN YOU HAVE WHAT WE CALL A SUMMARY HER-2 SUMMARY DATA WHICH IS GOING TO SAY REGARDLESS OF WHAT TEN, TELL US DO YOU HAVE THE HER-2 INFORMATION. LOOKS LIKE 91% BUT I HAVE TO MENTION THAT FOR SITE SPECIFIC 15 OVER HERE IT'S NOT REQUIRED DATA ITEM IN THE 2010 DATA SUBMISSION SOME THERE'S 44, 43 TO 4400 CASES THAT DON'T HAVE THAT INFORMATION CODED TO APPLICABLE, NOT REQUIRED TO COLLECT SOME THOSE CASES EXCLUDED IN THE DENOMINATOR. IF YOU INCLUDE THEM THEY DROP TO 85%. THE COMMITTEES DELIBERATION IS THAT MAYBE THEY -- THOUGH THEY DON'T HAVE INFORMATION, IF THEY HAVE INTERPRETATION FROM IHC, FROM CURB OR OTHER TESTS THEY CAN COME UP WITH A DERIVED VALUE FOR IT SO THATs WHAT THE COMMITTEE RECOMMENDED SHOULD RELEASE THAT BECAUSE THAT'S IMPORTANT. BASED ON ERPR HER-2 STANDARD IS WHEN TO DETERMINE THE TRIPLE NEGATIVE BREAST CANCER OF GREAT INTEREST TO RESEARCHERS THESE DAYS. HERE IS ANOTHER ONE OF THE BREAST CANCER WE LOOK AT VERSUS INTERPRETATION. I LOOK OVER HERE FOR IAC VALUES. IT'S VERY CLEAR YOU ONLY HAVE ZERO SCORE OF ZERO, 1 PLUS 2 PLUS AND 3 PLUS. 0 AND 1 PLUS MEANS NEGATIVE. 2 PLUS IS BORDERLINE AND 3 PLUS IS POSITIVE. UNFORTUNATELY FOR 1 PLUS CODE OF NEGATIVE IAC VALUE IS CODE TO 10 -- 010. IF YOU LOOK AT INTERPRETATION 010 IS POSITIVE. WE ARE WONDERING, OKAY, 010, 010. THAT MIGHT BE WHY YOU ACTUALLY HAD -- WE SOMETIMES HAVE THE PERCENTAGE BUT IT'S STILL CLOSE TO 200 CASES WE KNOW FROM IAC IS NEGATIVE BUT WILL BE CODED AS POSITIVE. SO AGAIN, WE NEED TO CLEAN UP SOME OF THIS DATA BEFORE RELEASE. WE DO THE SAME THING FOR FOR CODING -- THERE'S A FEWER NUMBER OF SITE SPECIFIC FACTORS ONLY SEVEN OF THEM. THE SAME FOR COLON AN RECTUM. TWO VERY COLLECTED SINCE VERSION ONE. THEY'RE -- THEY CAN BE GROUPED IN THREE GROUPS. ONE STAGE ONE TREATMENT AND FIVE FOR CLINICAL SIGNIFICANCE. THIS IS AGAIN THE SAME GRAPH SHOWING. CLINICAL ASSESS. OF LYMPH NODE WHICH IS NOT THE BEST, LESS THAN P 70 PERCENT BUT AGAIN STAGING SO WE RELEASE IT, COLLECTING FOR LONG TIME. CEA INTERPRETATION COLLECTED FOR LONG TIME SENSE 2004 OR 5, WE RECOMMEND TO CONTINUE7 RELEASE. HOWEVER WE KIND OF RECOMMEND NOT TO RELEASE THE VALUE. BECAUSE THE RAREIATION FROM LAB TO LAB AND ALSO FOR THEY ACTUALLY HAVE A DIFFER REFERENCE RANGE IF YOU WILL (INAUDIBLE) SINCE WE DONE HAVE INFORMATION SMOKING STATUS, IT BECOMES VERY MEANINGLESS TO COLLECT OR TO RELEASE THAT INFORMATION. THEN WE HAVE THREE ADDITIONAL PROGNOSTIC INDICATORS. ONE IS TUMOR SPECIFICALLY LOOKING TO SEE WHETHER ANY TUMOR DEPOSIT SURROUNDING THE COLON AND RECTUM AIR, THERE IS ALSO -- WE HAVE QUITE HIGH, 70% OF CASES HAVE INFORMATION. RESECTION MARGIN, MEASURING DISTANCE BETWEEN THE RECESSION MARGIN TO THE INVASION. AND THE CLINICAL COMMITTEE, ONE OF THE VERY STRONG PREDICTOR OF PROGNOSTIC FACTOR, PREDICTING RECURRENCE FOR THIS COLON OR RECTUM CASE KAREN PATIENT. WE HAVE ABOUT 60%, WE HAVE THE DATA. AND THEN ALSO INVASION INFILTRATION INTO THE NERVE, THAT IS ANOTHER PROGNOSTIC FACTOR WE RECOMMEND RELEASING. THEN ONE WITH THE TREATMENT IS KRAS. ONE OF THE GENES PEOPLE WILL LIKE TO HAVE INFORMATION. HOWEVER WHEN WE LOOK AT THE PERCENTAGE THAT HAVE THE LOAN VALUE LESS THAN 10% WE KNOW AFCO PRELIMINARY TREATMENT GUIDELINES SUGGESTED THAT STAGE 4 CANCER PATIENT WHICH THEY MIGHT WANT TREATMENT THEY'RE GETTING WILL BE THE ANTI-EPIDERMAL GROWTH FACTOR RECEPTORS TARGET THERAPY. AND THERE'S EVIDENCE THAT SHOW IF YOU HAVE A MUTATION OF THE KRAS AND THAT TREATMENT IS NOT GOING TO BE BACK SO YOU'LL BE COSTLY TREATING IT AND THEN ALL KIND OF -- YOU DONE GAIN ANYTHING. SO THAT'S WHERE THE RECOMMENDATION COME FROM, FROM THE GUIDELINE. EVEN WHEN WE LOOK AT STAGE 4 IT'S ONLY A LITTLE OVER 20% OF THE CASES HAVE THAT INFORMATION. IT'S OF INTEREST, WE HAVE A QUESTION MARK WE SHOULD LOOK INTERNAL REVIEW OR INTERNAL ANALYSIS. I THINK I'M GOING TO STOP HERE, NOT TAKING ANY QUESTIONS UNTIL CHUCK ACTUALLY PRESENT THE REST OF THE PRESENTATION. [APPLAUSE] >> VIVIEN DECEIVES THAT APPLAUSE, -- DESERVINGS THAT APPLAUSE, SHE PUT A LOT OF WORK INTO IT. I WANTED TO ER VIEW THE DECISION MAKING PROCESS HERE, AS VIVIEN MENTIONEDDED WE HAVE BEEN REVIEWING EACH SITE SPECIFIC FACTOR THUS FAR. WE HAVE GONE THROUGH FOUR SITES, PROSTATE BREAST AND COLON AN RECTUM AND WHAT WE HAVE DONE THAT BY THE SUMMARIES PROVIDED TO US AS EXCEL FILES AND THEN WE HAVE A CONFERENCE CALL, NOTICE NOT THE TELECONFERENCE CALL, NOT FACE TO FACE SO THERE'S NO TUP TO PUT THE BOXING GLOVES ON, GET INTO THE RING AND SETTLE DIFFERENCES THAT WAY. BUT WE HAVEN'T HAD TOO MUCH TROUBLE COMING TO GROUP CONSENSUS ON THE PHONE REGARDING DECISIONS SHE ANNOUNCED. SO WHAT WE HAVE BEEN DOING SO FAR, THE PATTERN HAS BEEN THE WORKING GROUP IS TENDING TOWARD APPROVING FOR DATA LEAST, ITEMS THAT EXISTED IN CSB-1. THAT'S FROM 2004 FORWARD. CONTINUE TO RELEASE THAT. AND VARIABLES REQUIRED BY STAGING THERE'S A SENSE TO TRY TO GET THAT INFORMATION OUT THERE. WE HAVE HAD PROBLEMS WITH LAB VALUES. SOME SITE SPECIFIC FACTORS ARE THE COLLECTION OF LAB VALUES. FINDING IT'S DIFFICULT TO INTERPRET THOSE LAB VALUES. WE DON'T KNOW WHAT THE NORMAL RANGE IS AROUND THEM. WE JUST HAVE THE LAB VALUE. THERE CAN BE VARIATIONS IN THE NORMAL RANGE, WE E KNOW THIS. THERE CAN BE DIFFERENCES IN REFERENCE RANGE BASED ON PERSONAL LIFE STYLE FACTORS OF THE PATIENT AS WELL. SHE'S GIVEN A COUPLE OF EXAMPLES ALREADY OF WHERE WE HAVE PROBLEMS WITH LAB VALUE VERSUS TEST INTERPRETATION. HER-2 AND PSA. SO I'M GOING TO REVIEW THESE FOR YOU, SHE PRESENTED THE SAME DATA IN TABULAR FORMAT. THIS IS A STAFF BAR FORMAT. BUT HERE WE HAVE LOOKING AT HER-2 NEW ON IMMUNOHISTOCHEMISTRY, LAB VALUE VERSUS INTERPRETATION, LABRALE IS STRAIGHT FORWARD, POSITIVE NEGATIVE BORDERLINE, THERE'S WHAT MOST PEOPLE USING THE USE FILE WOULD BE INTERESTED IN. WHAT WAS INTERPRETATION OF THE LAB VALUE. OR LAB INTERPRETATION. WHEN WE LOOK AT LAB VALUE, AS YOU CAN SEE HERE, IF I CAN GET THE MOUSE TO WORK, WITH THE SCORSE ROW OR 1 WE GOT A LITTLE BLUE IN THERE. SO WE HAVE GOT LAB VALUES NEGATIVE BUT LAB INTERPRETATION THAT IS POSITIVE RAISING THE QUESTION WHY IS THAT HAPPENING. SAME THING IS TRUE WHEN WE HAVE A LAB VALUE THAT'S OBVIOUSLY A POSITIVE SCORE, THE SCORES 3 PLUS BUT WE HAVE A SMALL PERCENTAGE OF CASES BEING REPORTED AS NEGATIVE IN THAT. THAT'S RAISING A QUESTION FOR US. ONE SOLUTION COULD BE WE STILL HAVE TIME BETWEEN NOW AND APRIL FOR RELEASE OF THE DATA. IT MAYBE TO COME BACK TO THE REGISTRIES AN TO HAVE YOU LOOK AT THESE CASES YOU HAVE TO SEE IF YOU CAN EXPLAIN IF YOU HAVE ANY OF THESE WHAT IS THE EXPLANATION FOR THE DIFFERENCE. HERE IS THE SAME THING ON THE PSA VALUE, THIS IS PARTICULARLY A PROBLEM WHEN THE LAB VALUE BETWEEN 0.1 AND 4 NANOGRAMS PER ML, THE FIRST COLUMN THERE, THAT SHOULD BE NEGATIVE INTERPRETATION, IT DOESN'T HAVE TO BE. TY THE PEND THE AGE OF THE PATIENT. WE DIDN'T LOOK AT ALL THIS INFORMATION BUT WE HAVE OVER 50% BEING CODED AS POSITIVE. THERE COULD BE AN EXPLANATION FOR THIS. AGAIN, WE TEND TO THINK THE LAB INTERPRETATION IS PROBABLY WHAT THE PUBLIC USE USERS SEER STAT USERS ARE MOST INTERESTED IN BUT IF WE PUT OUT LAB VALUES AS WELL WE'RE CONCERNED THAT WILL BE CONFUSING TO PEOPLE AND OUR CENSUS IF WE PUT THE DATA OUT THERE FOR PUB LOOK USE PEOPLE WILL ASSUME THIS IS HIGH CALL INFORMATION, THEY'RE JUST GOING TO RUN WITH IT WHICH IS WHAT MOST DO. THEY JUST START USING IT, SO WE COME TYPE THIS THINKING OUR GOAL HERE SHOULD BE TO MAINTAIN SEARS CREDIBLE OF PUT OUGHT HIGH QUALITY DATA. IT'S BEHIND OUR THINKING THERE IS A NEED TO PUT DATA OUT. RECOMMENDATIONS, GENERALLY RECOMMENDING RELEASE DATA ITEMS CHECKED WITH SOME TARGET EDITING THE PSA ISSUE IS AN EXAMPLE. WE HAVE INTERNAL REVIEW AND EVALUATION. AS WE GET INTO THIS WE CROSS OVER TO SOME OTHER WORKING GROUP TERRITORIES. SO WE WANT TO BRING THE ISSUE OF NEEDING (INAUDIBLE) THAT REQUIRE RAPID SOLUTION TO THE SEER DATA QUALITY WORK GROUP AND SAY SHOULD WE DOENING SOMETHING WITH THESE AN QUICKLY. BUT WE DON'T WANT TO RUSH OUT AND TELL A REGISTRY TO DO SOMETHING, WE WANT TO PLAN IT OUT SO WHEN WE ASK YOU TO DO SOMETHING IT'S EFFICIENT AND JUST WHAT WE NEED. THEN THE ISSUE OF LAB INTERPRETATION REGARDING LAB VALUES. WE'RE LIEN TOWARD IF WE FEW SOMETHING OUT, IT HAD BEEN THE LAB INTERPRETATION. AT THIS POINT -- DO YOU WANT TO STOP FOR QUESTIONS? WE WE SAVED TIME THIS MORNING BECAUSE PEOPLE DIDN'T HAVE THAT MANY QUESTIONS. SO KATHY WANTED TO FINISH THIS AND SHE WAS GOING TO ASK YOU QUESTIONS INSTEAD OF ASKING. SO WE'RE THINKING A 10% RESPONSE TO A QUESTION WILL LEAD TO A 30 MINUTE DISCUSSION. SO WE REVERSED IT, DIDN'T WE? BUT YOU KNEW THAT AT THE TIME. ONE O'CLOCK IN THE AFTERNOON, EVERYBODY IS TIRE HAVING EATEN LUNCH SO MAYBE U YOU SHOULD TALK ABOUT YOUR THINKS AND GET DISCUSSION GOING. WHAT ARE WE GOING TO RELEASE COME APRIL? (OFF MIC) >> WORKING GROUP DID GREAT JOB. I MEAN BUT OF THE 150 SCHEMAS THAT BRENDA MENTIONED WE DID ONLY GET THROUGH FOUR. I THINK WE FEEL LIKE THERE ARE GENERALITIES THAT IF PEOPLE ARE COMFORTABLE WITH, WE CAN APPLY WIDELY. BUT THE GROUP DID SAY WE'RE GOING, WE CAN DO MORE AND THEY AGREED TO DO I THINK TEN. WHICH WOULD BE GREAT. THEN OF THAT AGAIN CAN WE COME UP WITH GENERAL RULES WE CAN APLAY TO THE OTHERS BECAUSE'S IMPRACTICABLE TO KEEP GOING THROUGH SCHEMAS ONE BY ONE. ARE CAN CAN YOU HAD A PROPOSAL, WHERE WE COULD PUT UP A WEBSITE MAYBE NOT AN N WEBSITE BUT OUTSIDE WHERE PEOPLE COULD SHARE LIKE WE RELEASE SOMETHING AND PEOPLE USE IT, LIKE A BLOG I GUESS WHERE PEOPLE CAN POSE THEIR EXPERIENCES AND THEIR CHALLENGES WHAT THEY FOUND TO HELP USERS HELP EACH OTHER SINCE N AND WE CAN'T PROBABLY DO IT ALL. SO THEY -- WE THOUGHT WE WOULD FINISH THE QUESTIONS. THE FIRST QUESTION WE HAD, SPECIFICALLY THAT I HAS BECAUSE I'M INTERESTED,ING INTERNAL USE VERSUS SPECIAL REQUEST. IF SOME WE SAY WE'RE GOING TO RELEASE TO THE PUBLIC ON THE PUBLIC RESEARCH FILE BUT WHAT ABOUT THE ONES THAT WEREN'T RELEASED? ARE THEY AVAILABLE ON SPECIAL REQUEST? WHAT IS THE PROCESS FOR REVIEW? IF THEY'RE AVAILABLE IN THE SEER COMMUNITY SO PEOPLE WITH CAN LOOK BECAUSE THE BEST WAY TO ANALYZE DATA IS TO LOOK AT IT SO THAT WAS THE QUESTION I HAD TO THE GROUP. I WILL SAY IN THE PAST IT'S PROBLEMATIC ETCH IN THE SORE REGISTRY COMMUNITY IF THEY PUBLISH WITH DATA, IT IS DIFFICULT TO SAY THE LARGER COMMUNITY CAN CANNOT HAVE ACCESS TO IT. YOU CAN PUT STRUCTURE ON IT SAYING THEY HAVE TO REQUEST IT, MAYBE THEY HAVE TO WORK WITH SOMEBODY FROM THE REGISTRY, THEY HAVE TO HAVE INTERACTION WITH PEOPLE TO INTERPRET IT BUT IT'S DIFFICULT TO USE IT AND PUB WHEN YOU'RE NOT GOING TO MAKE IT VAIL TO BELIEVE THE LARGER COMMUNITY. SO I WANT TO GET THE IMPRESSION FROM THE GROUP WHAT THEY THINK SHOULD BE THE PROCESS AND MAKING IT AVAILABLE ON SPECIAL ER QUEST P WE DON'T RELEASE ON RESEARCH FILES. >> >> MAYBE WE SHOULD -- >> I DON'T THINK IT IS ON. >> THE CONSENSUS OF A WORK GROUP KIND OF GOD CONSENSUS BUSBOY WOULD THE OTHER SEER PI AGREE ON WHAT WE RECOMMEND SO FAR FOR THE FOUR CANCER SITES? I WOULD LIKE TO SEE FEEDBACK. ARE THEY TOO CONSERVATIVE, TOO LIBERAL, MAYBE SHOULDN'T RELEASE ANYTHING AT ALL? (OFF MIC) >> I WOULD SUGGEST RELEASING IT BY INTERNAL USE BUT REQUEST TO SPECIAL WORKING GROUPS TO ANALYZE PROSTATE CANCER YOU COME STUDY GROUP HAVE THEM LOOK AT THAT, HAVE THE BREAST CANCER SURVEILLANCE CONSORTIUM, I SPOTTED RACHEL OVER THERE, BREAST CANCER SURVEILLANCE CONSORTIUM, LOOK THE BREAST CANCER ISSUES. GET PEOPLE FAMILIAR WITH THE SEER DATA TO VISITORS WHO MAY OR MAY NOT BE IN THE SEER REGISTRY TO ANALYZE THE DATA SO MY RECOMMENDATION OR SUGGESTION MIGHT BE TO SPECIAL REQUEST DATA MECHANISM, THERE MIGHT BE AN INTERNAL REVIEW OF STUFF THAT WHEN OUT BEFORE PUBLISHED. (OFF MIC) >> COLLABORATE REPLICATION, EVERYTHING FOR INTERNAL SPECIAL GROUP? ARE YOU TALKING ABOUT ONE WITH QUESTION MARK? >> WELL, I'M GOING TO TO OUT ON A LIMB AND SAY THE ENTIRE CS. >> WHAT ABOUT CS VERSION ONE, SUGGESTING PULLING THEM AND NO LONGER RELEASING? >> I MEANT THE ONES NOT YET RELEASED. SORRY. (OFF MIC) >> I WAS ON THE WORKING GROUP AND I VOTED TO RELEASE THE ONES THAT WE HAVE. NOW WE HAVE ANOTHER SEER PI SAYING DO SOMETHING ELSE SO WE NEED A CONSENSUS HERE. (OFF MIC) >> I DON'T KNOW IF YOU'RE CHANGING YOUR MIND OR NOT VIE VIVIEN. (OFF MIC) QUITE COMFORTABLE ABOUT IT. (INAUDIBLE) EVALUATION. CHUCK WAS SAYING SOMETHING ELSE. >> I WOULD DEFER TO THE WORKING GROUP. YOU REALLY HAVE THIS STUFF. I'M FEELING A LITTLE TOO CONSERVATIVE TODAY. SENSE I VOTED FOR OBAMA IN THE ELECTION I THOUGHT I MIGHT BE MORE CONSERVATIVE TODAY. IT IS HALLOWEEN, RIGHT? SO WITH THAT, I JUST FEEL A LITTLE CONSERVATIVE ABOUT SOME OF THE STUFF. BUT I WOULD BE COMFORTABLE IF IT WAS THE CONSENSUS I WOULD BE TOTALLY COMFORTABLE WITH GOING WITH THE GROUPS RECOMMENDATION. >> THE OTHER THING YOU BROUGHT UP ABOUT REVIEW PROCESS FOR THE QUESTIONABLE VARIABLES THAT WAS VIEW WAS EXPRESSED IN THE GROUP AS WELL, THE IDEA THAT WE CAN GIVE TO SPECIAL INTERESTS AND INTERNAL USE BUT WE WAN CONTROL OVER THIS PROCESS. WE WANT TO SHEERER COME BACK AND REVIEW IT CENTRALLY ESSENTIALLY BEFORE ANYTHING IS DONE IN TERMS OF RELEASING INTO THE PUBLIC. SO THAT WE HAVE CONTROL OVER THE PROCESS OF VARIABLES WE FEEL NODE SOME TYPE OF INTERNAL OR SPECIAL REVIEW DONE ON THEM. SO I THINK IN THAT REGARD I'M A LITTLE LESS CONCERNED ABOUT THE INABILITY TO MAKE IT PUBLIC. WHAT WE'RE REALLY DOING IS EVALUATING WHETHER IT SHOULD BE MADE PUBLIC. WE DON'T WANT THE GROUPS GOING OFF TO DO THEIR THING WE WANT A REPORT BACK ABOUT WHAT THEIR FINDINGS WHERE. SO SOME ASSESSMENT CAN BE MADE REGARDING THE QUALITY OF THE VARIABLE.'c I'M NOT PI CAN I COMMENT? >> OF COURSE. >> BASED ON THE VARIATIONS IN CANCER FORM, BEING REPETITIOUS TODAY. HOW MUCH CAN YOU TRUST THE 2010 DATA ESPECIALLY SITE SPECIFIC FACTOR? YOU HAVE APPROXIMATE ADVANTAGE WITH PSA WHICH IS AROUND SINCE 2004 THAT YOU CAN COMPARE ONE AND TWO TO SEE IF THEY MAKE SENSE. BUT A LOT OF THESE SITE SPECIFIC FACTORS YOU DON'T HAVE THAT. FOR ONES THAT AREN'T INTERPRETATIONS OF LABS. SO EVEN THOUGH YOU HAVE 95% KNOWN VALUES AND 5% UNKNOWN, HOW DO YOU KNOWN ITS KNOWN VALUES ARE CORRECT? I THINK YOUR APPROACH IS EXCELLENT, I'M LIKE CHUCK, I WOULD BE A LITTLE CONSERVATIVE ESPECIALLY ON THE NEW SITE SPECIFIC FACTORS. FOR ONES AROUND SINCE 2004, THEY HAVE BEEN RELEASED, I THINK WE SHOULD CONTINUE TO RELEASE THEM BECAUSE PEOPLE HAVE GOTTEN P USED TO THEM BUT THE NEW ONES, I'M LEERY ABOUT SOME OF THEM BUT THIS GROUP IS ON THE RIGHT TRACK ABOUT APPROACHING THE WAY IT NED TO BE DONE. >> NOT RELEASING IS CERTAINLY AN OPTION AND ONE THAT A REASONABLE APPROACH BUT AT THE SAME TIME WE DONE RELEASE IT, I THINK GIVEN THE RESOURCES THAT WEAPON INTO COLLECTING IT WE HAVE TO HAVE A DLEER PLAN FOR HOW TO ASSESS IT. TO MAKE A DECISION IN THE FUTURE. QUESTION OVER THERE? >> I AGREE WITH THE PLANS THE GROUPS PUT OUT WHICH DAY ITEM THOUGHT RELEASED FOR THOSE SITES. I DON'T QUITE SEE WHY PUBLISHABLE RESEARCH WOULD BE DONE INTERNALLY ON DATA THAT WE DID NOT TRUST PEOPLE EXTERNALLY WITH. YOU HAVE IDENTIFIED SOME CLEAR ISSUES ABSOLUTE VALUES OF THINGS LIKE THE LAB VALUES THAT WE HAVE SEEN IN THE PAST ON OTHER FIELDS LIKE TUMOR SIZE WHERE THERE HAVE BEEN ERRORS IN CERTAIN SUB SETS OF THE DATA PICKED UP IN SOME CASES BY EXTERNAL USERS WHICH IS GREAT. SINCE THAT'S THE VARIABLE PROBLEMS THAT SEEMS TO HAPPEN A FAIR BIT AND WE SHOULD BE GOING AFTER THOSE AN FIXING THOSE BEFORE THOSE ARE EVER CONSIDERED FOR RELEASE. >> I'M A SEER USER BUT FROM A USER PERSPECTIVE I WOULD BE CONCERNED ABOUT UPSET IF I HAD ACCESS TO DATA THAT Y'ALL WEREN'T COMFORTABLE USENING YOUR OWN ANALYSIS. SO PERHAPS I THEE YOU SUGGESTED KEN SOME OF -- CAN THOSE VARIABLES BE LOOKED AT TO DETERMINE WHERE THE PROBLEM IS, WHY THERE WAS -- IT SEEMS TO BE INCONSISTENT STANDARD FOR SEER PI BUT AS SEER DATA USER, I WOULDN'T WANT THE MAKE A REQUEST THROUGH GRANT PROCESS AND ACCESS THE DATA AND FIND OUT OH, WELL IT'S NOT VERY USEFUL. >> THIS IS A NEW BALL GAME FOR ALL OF US WE HAVE 100 SITE SPECIFIC FACTORS WE COLLECTED DATA ON. SOME ARE COMING BACK AND WE'RE SAYING WE DON'T KNOW ABOUT THE QUALITY OF THIS AND WE'RE UNDER A TIME LINE TO MAKE A E DECISION IN A FEW MONTHS. YOU CAN SEE WE COMPROMISED, WE HAVEN SAID DON'T RELEASE ANYTHING. WE SAID WE WANT TO RELEASE SOME THINGS. AT THE SAME TIME IF WE'RE NOT GOING TO RELEASE SOMETHING, SOMETHING SHOULD BE DONE WITH THIS. WE'RE USING THE DATA FOR PURPOSES OF PUBLICATION. SOMEBODY HAS TO GO AND EVALUATE THIS. WE DON'T FEEL WITHIN THE SEER FAMILY WE HAVE ENOUGH PEOPLE OR TIME TO EVALUATE ALL THESE QUESTIONS. AS LITTLE CHUCK SUGGESTED, I USE THAT BECAUSE HE USES IT ALL THE TIME, SO I'M BIG CHUCK, LITTLE CHUCK. BUT ANYWAY, THE IDEA WAS WE CAN OPEN UP TO GROUPS THAT HAVE INTEREST IN THIS VARIABLE AS WELL AND EXPERIENCE WITH IT BUT IT E NOT TO TAKE IT FROM THE PUBLIC, IT'S TO EVALUATE ITS RELEASABILITY TO PUBLIC. SO YOU WOULD GET IT AS SOON AS IT WAS RELEASABLE BUT IT NEEDS SOME TYPE OF EVALUATION. (OFF MIC) >> SOME OF THESE VARIABLES COULD BE ONLYGm0@:&lI BECAUSE THERE MAYBE SITUATIONS LIKE AN EXAMPLE OF THAT WOULD BE WITH HER-2 MEASUREMENTS LOOKING AT THE SHUSH TEST, NOT USED VERY MUCH. SO MAYBE THE DATA IS NOT THAT BAD, WHEN YOU COMPARE WITH IMMUNOHISTOCHEMISTRY WITH FISH AND THEN THE SHISH THERE'S A REASON, A RATIONALE WHY WE HAVE A LOW VALUE. IT'S ALSO A FAIRLY IN TEST. THIS TYPE OF THING SO LOOKING AT PERCENTAGES DOESN'T ALWAYS ANSWER THE QUESTION. BUT WE DON'T HAVE ALL THE ANSWERS OURSELVES WITH WHAT WE HAVE TO REVIEW. WE DONE HAVE THAT EXTENSIVE DATA ANALYSIS. >> HOW AM I DOING? SO IF YOU HAVE THE SMALL AMOUNT OF DATA, AND IT'S A NEW TEST, WHAT WOULD YOU DO WITH IT ANYWAY? WE'RE POPULATION SCIENTISTS AND YOU HAVE GOT THIS LITTLE BIT OF DATA, HOW DO YOU MAKE INTERPRETATION THAT CAN BE GENERALIZED, HAS EXTERNAL VALIDITY? >> WE AGREE WITH YOU ON THAT. >> WHY ARE WE GIVING IT TO SOMEONE LIKE SAY A GROUP OF CLINICIANS WHO DEFINITELY DON'T UNDERSTAND POPULATION SCIENCE. AND LETTING THEM REVIEW IT. I DON'T GET THAT POINT. THAT MAKES NO SENSE TO ME. >> I THINK IN GENERAL WHAT WE WERE SAYING, WE COULD GIVE IT TO YOU AND YOU CAN REVIEW IT. >> THAT WOULD BE DANGEROUS. >> WHY WAS THE DATA COLLECTED IN THE FIRST PLACE ON SOME OF THOSE? >> WE ASKED THAT QUESTION BEFORE THE DATA WAS CHECKED. Q. SO WE HAVE THAT DATA NOW. SHOULD WE IGNORE IT? WE SPENT A LOT OF TIME TRAINING AND DOING ALL THIS ON IT. AND IT NEEDS FURTHER EVALUATION O QUESTION OF WHO IS GOING TO DO THE EVALUATION. WE DON'T HAVE TO GIVE IT TO A SPECIAL GROUP, I DON'T KNOW THAT WOULD BE OF PARTICULAR INTEREST TO PERSONAL GROUP BUT WE DON'T HAVE ENOUGH PERSONNEL IN THE SEER FAMILY WITH EVERYTHING ELSE TO DO THIS AND IT NEEDS EVALUATION. IT DOESN'T NEED TO BE DONE BY MID APRIL FOR THAT TYPE OF VARIABLE. BUT SHOULD BE DONE AT SOME POINT IN TIME AND WE'RE CONTINUING TO COLLECT IT. COULD BE THAT NEXT YEAR IT'S AT 20% INSTEAD OF 10% BECAUSE IT'S STARTING TO DIFFUSE OUT INTO PRACTICE. I DON'T KNOW. WE DOPE HAVE THAT DATA RIGHT NOW. THE FACT WE COLLECTED IT PUTS US UNDER BURDEN TON DO SOMETHING WITH IT. I DON'T THINK WE SAY AT THIS POINT IT DOESN'T EXIST, WHY ISN'T IT OUT THERE? SO WE'RE GOING TO FACE THOSE QUESTIONS TOO. NOT GOING TO PUT IT OUT THERE, WHY AREN'T YOU PUTTING IT OUT THERE? >> I THINK IT'S OKAY TO SAY WE OOH NOT PUTTING OUT BECAUSE WE'RE EVALUATING IT. THAT'S PERFECTLY VALID TO SAY BUT WE HAVE TO HAVE A PLAN FOR EVALUATING IT. >> SO BACK TO THE BASIC QUESTION AGAIN, THERE'S TWO PARTS, ONE IS IT NOT ENOUGH DATA BECAUSE IT'S A NEW TEST AND WE CAN MAKE A DECISION WHETHER WE HAVE THE RESOURCES TO CONTINUE TO DO THAT. THE OTHER IS QUALITY OF THE DATA ANY GOOD AT ALL. THOSE ARE TWO SEPARATE THINGS THAT REQUIRE DIFFERENT PEOPLE TO LOOK AT THEM. O I'LL STOP AND SAY WHATEVER THIS COMMITTEE WANTS TO DO I THINK IS GREAT. >> PART IS COMING BACK TO YOU. >> EXCEPT THAT PART. >> YOU MAY EXPECT SOME REQUESTS DOWN THE ROAD HERE NEXT FEW MONTH TO SORT THIS OUT. YOUR RESPONSES WILL GO A LONG WAY TOWARD ADDRESSING ISSUES OF QUALITY AND COMPLETENESS. WE HAVE THE SAME CONCERNS YOU HAVE. WE HAVE THE DATA NOW AND WE'RE CONNING TO CHECK IT UNTIL WE DECIDE WE'RE NOT GOING TO DO A PARTICULAR SITE SPECIFIC FACTOR. SO WE'RE PROBABLY UNDER SOME OBLIGATION TO EVALUATE. Q. SO THAT WAS ONE OF MY RATER QUESTIONS BUT LET ME ASK ONE THING BECAUSE I'M NOT CLEAR, ARE PEOPLE JUST UNCOMFORTABLE WITH THE LAB VALUES OR ARE THEY UP COMFORTABLE WITH THE ENTERPRAY PRE-TAKES AS WELL? OR DON'T KNOW, NEEDS TO BE EVALUATED. OKAY. >> TWO THOUGHTS. ONE IS THE WORK YOU GUYS PREPPED IS TERRIFIC AND HELPFUL AND A LOT OF US IN THIS ROOM HAS BETTER UNDERSTANDING OF THESE VARIABLES AND VALUES THEM THE SAME WE DI BEFORE. WHEN YOU HAD THE SLIDE THAT SAID SHOULD WE HAVE A WEBSITE WHEREze PEOPLE PUT STUFF LIKE THIS. AND I'M JUST GOING WELL YOU HAVE GONE THROUGH THAT TROUBLE HOW ABOUT A NICE PEER REVIEWED PAPER SO EVERYONE CAN SEE EVALUATION OF THE QUALITY WAS. >> THAT WASN'T TO REPORT THE RESULTS THIS GROUP DID BUT IF WE RELEASE THE DATA AND PEOPLE USE IT, SOME MECHANISMS FOR THEM TO SHARE INFORMATION. >> THAT I SHALL PUBLISH THEIR PAPERS, I'M SKEPCAL TO THINK THAT -- THINGS STUCK ON WEBSITES, THERE'S TOO MUCH THERE. AND THEN SO MY OTHER THING WAS GOING TO BE I THINK LIKE TOM TUCKER I DEAL WITH A FAIR NUMBER OF CLINICS WHO THINK THEY KNOW HOW TO DO RESEARCH. SO I TEND TO BE CONSERVATIVE WHAT DATA SHOULD BE AVAILABLE TO THEM WITHOUT A REVIEW PROCESS. SO Y'ALL TALKED IN THE PAST ABOUT BUT WHERE IS THE PERSONNEL , THERE'S PERSONNEL CHECKING DATA IN THE FIRST PLACE. IT SEEMS LIGHT INEFFICIENCY THERE'S NO ONE WHO HAS THE TIME. IF SOMEONE COULD WRITE A PROPOSAL, GOING TO USE DATA IN A WAY THAT MAKE SENSE GIVEN WHAT YOU GUYS PUBLISHED SO ON LIKE THAT, THAT'S A LOT DIFFERENT FROM SAYING EVERYBODY GO OUT. >> I JUST WANT TO SAY THE GROUP LOOKING FOR A FORMAT TO EVALUATE NEW DATA ITEMS AN SITE SPECIFIC FACTORS, THIS IS KIND OF WHAT THEY WOULD DO AS A FEASIBILITY STUDY EVER GET IN THERE. SO WE SORT OF DID A FEASIBILITY STUDY BY FAR ALREADY ON THESE VARIABLES AND WE FOUND THAT SOME OF THESE SHOULD NEVER HAVE PASSED THE TEST IN THE FIRST PLACE. TO CONTINUE TO FURTHER EVALUATE THEM SEEM LIKE DOING MORE POINTLESS EFFORT. SO IT'S LIKE THEY DIDN'T PASS THE FEASIBILITY STUDY, TIME TO JUST PUT THEM AND MOVE ON. >> MAYBE I'LL MOVE ON TO SOME OF MY LATER QUESTIONS. MAYBE JUST SKIP TO THE LAST ONE. THIS WAS SPECIFICALLY ABOUT THE LAB VALUE, ANY INTERPRETATION APPROXIMATE THIS IDEA OF DO WE WANT TO COLLECT ONE, COLLECT BOTH OR PERHAPS YOU'RE SEEING OR LOOKING AT THEM AGAIN. I THINK IT'S IMPORTANT, PEOPLE CORRECTED ME A COUPLE OF TIMES. I SAID MAYBE WE SHOULDN'T CHECK IT ANY MORE. THE REAL QUESTION, MAYBE WE SHOULDN'T CHECK T THE WAY WE'RE COLLECTING IT ANY MORE. MAYBE WHAT'S ALTERNATIVES TO COLLECT THE INFORMATION RATHER THAN HAVE THEIR REGISTRAR COLLECTING IT ON EVERY CASE. >> THE HER 2 IS A HOT TOPIC. FOR ME RELEASE ANYTHING IF THE BREAST KAREN WHEN WE HAVE BEEN WHICH CANNING 8 SITE SPECIFIC HER-2 AND NOT RELEASING SOMETHING TO THE PUBLIC WILL BE A DISASTER AND NOT SERVING THE PUBLIC. SO THE -- I KNOW THIS IS SUPPOSED TO BE NOT PROPOSED WHETHER YOU SHOULD COLLECT OR NOT, WE HAVE BEEN PROPOSING WHETHER YOU SHOULD RELEASE OR NOT. THE -- THESE FOUR HER-2, MAYBE THE ISSUE HERE IS NOT INTERPRETATION. COULD WE HAVE ONE SUMMARY INTERPRETATION TO SAY IF THEY HAD DONE ANY HER-2 TEST. I DONE CARE -- NEW TEST THAT COME UP IF THEY HAVE INTERPRET THE DATA (INAUDIBLE) SO WHEN RESEARCHERS WANT TO LOOK AT THE TREATMENT, THIS IS A TRIPLE NEGATIVE AND THIS IS THE TUMOR PROGRESSION. THIS IS THE SURVIVAL, THIS IS THE TREATMENT THAT WENT OUT. THEY WILL HAVE THE INFORMATION. SO IN THE CASE OF HER-2, EVEN ONE STEP IF NOT -- NOT JUST MAYBE RELEASING ANY OF THE INTERPRETATION. MAYBE WE JUST HAVE ONE SUMMARY INTERPRETATION FOR HER-2. (OFF MIC) Q. WHERE THEY WERE -- AND HER-2. >> MAYBE THIS ISN'T A QUESTION BUT INFORMATION. SO THERE ARE TWO THINGS GOING ON THAT I THINK WILL BE HELPFUL LONG TERM I'M ALREADY HESITANT TO MAKE THIS KIND OF DECISION BECAUSE I DON'T HAVE ENOUGH INFORMATION. SO TWO THINGS. ONEKjO CUP WAS VERY GOOD IN WORKING WITH AMY JONES AND HAS PUT TOGETHER A WORK GROUP THAT IS SUPPOSED TO LOOK AT THESE BIOMARKER TESTS AN COME UP WITH WHAT IS IT THAT YOU NEED OUT OF THEM AND I THINK WE COULD ASK THEM SPECIFIC QUESTIONS AS WELL ABOUT DO WE BELIEVE A LAB WHEN THEY SAY IT'S POSITIVE, THAT TYPICALLY VERY RELIABLE OR IS THAT AN ERROR AT THE LAB? I DON'T NECESSARILY BELIEVE A LAB IS NOT MAKING A DISMAKE. -- MISTAKE. THE OTHER IDEA IS I WOULD LIKE TO SEND INFORMATION BACK TO AJCC EXECUTIVE COMMITTEE AND MAYBE MOLECULAR MODEL OR WORK GROUP AND SAY HEY, YOU ASKED US O COLLECT THIS. TELL US AGAIN, THIS IS THE DATA WE'RE SEEING. IS THIS WHAT YOU WERE EXPECTING? HOW ARE WE SUPPOSED TO MANAGE THIS, IS THIS MAKING SENSE? WHAT IS IT YOU INTENDED? I FEEL LIKE I DON'T KNOW. AND I THINK WE SHALL GO BACK TO PEOPLE SUPPOSED POW TO KNOW AND SAY HEY, WHAT IS IT WE'RE TRYING TO ACCOMPLISH? THAT MIGHT BE HELPFUL. >> EXCELLENT IDEA. I THINK ALL THESE DIFFERENT HER-2 VARIABLES ARE HARD TO USE ANYWAY. BUT I FINE IT DIFFICULT TO BELIEVE AT THIS POINT WE'RE GOING SAY WE'RE NOT GOING TO GIVE YOU ANY INFORMATION ON HER-2. I THINK THAT'S A DIFFICULT DECISION TO STAND BEHIND. >> IT WAS JUST ABOUT WHETHER TO RELEASE IT OR NOT, TO MAKE A SWEEPING STATEMENT, LET'S NOT RELEASE ANYTHING, I THINK WE MIGHT LIVE TO REGRET THAT DECISION. >> ALL RIGHT. KATHY. I WAS GOING TO SHARE AGAIN. WE HAD AN OPPORTUNITY TO WORK WITH AN INVESTIGATOR. WE TALKED WITH ERPR AND HER-2, WHETHER TO REPORT THAT TO N AND ALL THAT STUFF. THIS INVESTIGATOR WANTED INFORMATION. ERPR, THAT'S PRETTY CUT AND DRY. THEN WHEN YOU GET TO THE FISH YOU GET THIS. SO WE DID A HER-2 LIGHT. WE GAVE AN INTERPRETATION POSITIVE O NEGATIVE. WE DIDN'T LOOK AT ANY OF THIS OTHER STUFF. I MEAN, EXCUSE ME. IT GOES TO IHC FIRST THEN REFLEXES TO FISH. WHATEVER THE RESULT OR METHODOLOGY THEY GOT SO WE WERE ABLE TO GET 80, 90% POPULATION FOR THIS NINE YEAR PERIOD WHICH WE THOUGHT WAS GOOD. I'M WONDERING IF WE MADE A MISTAKE AND SOME HOW DOING THIS, BY SIMPLIFYING IT FOR THE INVESTIGATOR BECAUSE IF WE WERE TO DO THIS, WE HAVE SIMILAR NUMBER TO THIS WHICH WOULD MAKE IT, SO WE HAD A SUMMARY RESULT OF THE HER-2. WHETHER IT BE IHD OR FISH. MOST ARE IHD. WITH EXCEPTION OF THE FISH. WHAT DO YOU THINK ABOUT THAT? >> THAT'S WHAT WE'RE PROPOSING ALSO. >> THEY'RE GOING TO INTERROGATE WITH TMA AND VALIDATE ANYWAY. SO THAT'S WHERE WE THOUGHT WHY NOT. >> I REMEMBER MY FIRST TEST WAS LIKE OH, YEAH, WE WANT YOU TO COLLECT THE VALUE. NOT JUST INTERPRETATION, TO GIVE US THE RANGE, THE NORMAL RANGE OF THE -- AND 20 YEARS LATER ALL PEOPLE GIVE US THE ERPR STAFF POSITIVE OF NEGATIVE SO WHY SO FUSSY ABOUT HER-2 BECAUSE IT'S NEW. >> I HAVE A QUESTION ABOUT THAT. IS THERE A DOCTOR IN THE HOUSE? IS THERE A -- SO THERE'S A CLINICIAN IN THE HOUSE WHO TREATS BREAST PATIENTS. THERE'S A BREAST GUY HERE. DOES THIS REFLECT HOW CLINICAL NED SIN IS PRACTICED? IF THIS IS WHAT WE FINE IN THE DATA IS THIS THE REALITY AND WHAT CLINICAL DECISIONS ARE MADE? THE ANSWER IS YES SO MAYBE THE DATA REFLECT MORE THAN THEY REALLY DO. IS THAT -- THE TREATMENT IS BASED ON SUMMARY VARIABLES WHAT CHRIS LEE IS SAYING. BUT COSTS HAVE CHANGED. SO WHAT I LOOK T A SEEING IS CRAP DATA ACTUALLY IS THE DATA WHICH CLINICAL DECISIONS ARE MADE. MAYBE THAT IS PUBLISHABLE. I'M NOT MAKING -- NOT TRYING TO BE FUNNY, I THINK IT'S INTERESTING. >> O ON THE PSA ISSUE, NORMAL RANGE IS VERY STRONG -- VARY STRONGLY BY AGE AT DIAGNOSIS. WE HAVEN'T LOOKED AT AGE AT DIAGNOSIS. THAT MIGHT EXPLAIN A LOT OF THOSE CASES THAT HAVE LOW -- WHAT WE'RE INTERPRETING IS A NEGATIVE VALUE AND WHY INTERPRETED POSITIVE BUT THE LAB VALUE IS NEGATIVE. THAT COULD BE THE REASON BUT WE HAVEN'T HAD THE TIME TO LOOK TO THAT LEVEL OF DETAIL. THE OTHER CONCERN IS MAYBE THAT'S SOMETHING WE SHOULD COME BACK TO THE REGISTRIES SO YOU CAN TO YOUR OWN ASSESSMENT OF YOUR OPEN DATA BUT GIVE YOU THE TEMPLATE BY WHICH WE WANT EWE TO DO THE EVALUATION. THEN YOU CAN ANSWER THE QUESTION FOR US, IS THIS GOD QUALITY DATA OR ISN'T IT? >> I LIKE LITTLE CHUCK'S SUGGESTION, NOT SURE HOW YOU OPERATIONALLIZE IT BUT HAND THAT QUESTION OFF TO PCOF. THEY'RE AS EXPERT AS ANY GROUP THEY KNOW OF IN DEALING WITH SEER REGISTRY DATA AND HAVE THEM DO THAT ALNALSIS. THAT'S A GREAT QUESTION, BUT I'M INTERESTED IN KNOWING THE ANSWER TO THAT AGE RELATED -- IF THAT'S AN AGE RELATED DIFFERRIAL IN THOSE OUTCOMES. IT'S CRITICAL TO KNOW THAT. I THINK THE NEXT STEP. AND DOESN'T HAVE REGISTRIES, MAY OR MAY NOT HAVE PEOPLE WITH EXPERTISE IN PROSTATE CANCER TREATMENT DATA. ANALYZE THEIR OWN DATA. WE CAN HAVE ONE GROUP ANALYZING SEER DATA. Q. I DON'T KNOW. I WOULD LIKE TO LOOK AT MY DATA FIRST BEFORE I GAVE IT TO ANYONE ELSE TO LOOK AT. I THINK THAT WAS A LITTLE BIT OF ERROR IN IT TOO. AND THE PSA VALUE, WE WILL ALSO A LITTLE CONCERNED ABOUT IF IN THE FISCAL OR IF PHYSICIAN MOTOR MAY SAY THE PATIENT HAVE DEBATED PSA VALUE, TREATMENT GIVEN AND PSA WAS DONE, THAT PING ISSA WAS IN THE CHART THOUGH THEY SPECIFICALLY SAY THE PSA VALUE SHOULD BE AS CLOSE TO THE DIAGNOSIS TIME AS POSSIBLE. SO FOR APRIL THIS YEAR THE GROUP WOULD BE ABLE TO LOOK AT TEN SITES, TEN SCHEMAS, NOT SITES, SCHEMAS. I THINK IT WOULD BE REASONABLE TO SAY FOR THE SCHEMAS WE HAVEN'T LOOKED AT WE WON'T RELEASE NEW VARIABLES BECAUSE WE HAVEN'T HAD CHANCE TO LOOK YET. FOR THE TEN SCHEMAS THAT WE DO LOOK AT, I GUESS I'M LOOKING HOW WE CO. TO CLOSURE ABOUT WHAT WE WANT TO DO. ONE THING IS THE GROUP COULD SEND THEIR RECOMMENDATION TO EVERYONE FOR COMMENT. I THINK -- I DON'T -- UNLESS THIS GROUP TELLS ME OTHERWISE I DON'T THINK THE ANSWER JUST NOT TO RELEASE ANYTHING. I THINK THAT THAT -- >> THE SCHEMAS THAT HAVE BEEN REVIEWED BY THE GROUP, THAT'S A BRIGHT GROUP OF PEOPLE WHO SPEAN TIME SITTING AT THAT DESK WHO WOULDN'T HAVE THE TIME OR WOULDN'T HAVE HAD THE GROUP DISCUSSION, I THINK WE SHALL GO WITH THEIR RECOMMENDATIONS WHAT TO RELEASE. I WOULD STRONGLY ADVOCATE FOR THAT. (OFF MIC) [LAUGHTER] >> NEXT TWO SITES SPECIFIC EVALUATED. >> THE OTHER ISSUE YOU MIGHT TALK ABOUT KATHYTHY BUT ON YOUR SLIDE THERE, SOME OF THE QUESTIONS WE COME UP WITH PROONLY TENIALLY COULD BE PUT INTO RAPID RESPONSE SPECIAL STUDY PROPOSAL THAT COULD BE PUT TOGETHER AND SUBMITTED, POSSIBLY CENTRALLY LIKE PATTERNS OF CARE IS DONE, THEN YOU WOULD HAVE AN OPPORTUNITY TO RESPOND TO THAT. WOULD PEOPLE BE INTERESTED IN THAT TYPE OF THING, THAT YOU RESPOND TO AN RRSS THAT HAD QUESTIONS, MAYBE A MENU TO CHOOSE FROM OF ITEMS THAT YOU WOULD BE WILLING TO INVESTIGATE THAT RELEVANT QUESTIONS TO THIS RELEASE ISSUE? I'M SEEING A LOT OF -- I THINK THAT'S YES, RIGHT? >> YES. YES. GETTING OTHER GROUPS INVOLVED IS AN EXCELLENT IDEA, WE HAVEN'T TALKED THAT MUCH ABOUT THAT, THE BREAST CANCER SURVEILLANCE CONSORTIUM, TO LOOK IF THE DATA TO SEE IF IT'S CONSISTENT WITH WHAT THEY'RE SEEING. THAT'S A GREAT IDEA. (OFF MIC) JUST A SHOW OF HAND? OKAY. OF THE RECOMMENDATIONS THEY MADE FOR THOSE FOUR SITES DO PEOPLE AGREE WITH THE RECOMMENDATIONS? RAISE YOUR HAND IF YOU AGREE. IF YOU WANT FURTHER COMMENT DON'T RAISE YOUR HAND. I WAS AFRAID OF THIS, IT'S GOING TO BE CLOSE, SO I WOULD HAVE TO COUNT BUT IT'S DEFINITELY NOT UNANIMOUS. >> ANYBODY WHO DOESN'T AGREE AND WOULD LIKE TO CHANGE THE RECOMMENDATIONS. YOU'RE RIGHT. AND THE LOUD PEOPLE WOULD SING. WE WILL TRY TO GO AHEAD AND RELEASED TO BE COLOR WE'RE SAYING RELEASED ON PUBLIC FILE. NOT ON SPECIAL REQUEST. IS THAT EVERYONE'S UNDERSTANDING? >> THEY WOULD ABSTAIN FROM VOTING, BECAUSE IT WASN'T INCLUDED IN THE ANALYSIS. >> ALL RIGHT. (OFF MIC) >> I CAN'T REMEMBER WHY EITHER. >> ON THAT PARTICULAR FILE YOU HAD MORE THAN 30%, IT WAS CLOSE TO 50% PROSTATE CANCER TOTALLY UNSTAGED. THAT'S WHY -- I TALKED TO IMS ABOUT IT. BUT IF OHIO WELL, THEY THOUGHT THEY MIGHT HAVE BEEN CASES STILL IN PROGRESS OR SOMETHING BUT REMEMBER I TALKED TO YOU. (OFF MIC) >> RIGHT. >> AND SO THERE WERE A HUGE PERCENTAGES AND THEY WERE JUST WAY OFF IN COMPARISON TO THE REST OF THE SEER REGISTRY, THAT'S WHY IT WAS ELIMINATE. >> SO WE REDO THIS WITH THE NOVEMBER SUBMISSION BEFORE WE MADE A FINAL JUST TO MAKE SURE NOTHING HAD CHANGED OR THAT STILL GET THE SAME, HOPEFULLY BETTER IN NOVEMBER THAN IT WAS IN FEBRUARY. ARE FROM ANY FINAL COMMENTS ON THIS TOPIC? ALL RIGHT. I THINK WE'RE IN LINE FOR A 15 MINUTE BREAK. HALF APPROXIMATE HOUR BREAK. I'M SORRY. HALF AN HOUR BREAK. SO LET'S TRY TO COME BACK AT 10 TO. >> LET'S GET STARTED AGAIN. SO PLEASE TACK YOUR SEATS SO WE'LL -- TAKE YOUR SEATS SO WE CAN GET STARTED AGAIN. BEFORE WE MOVE TO THE NEXT TALK I WANTED TO MENTION THAT AS WE'RE MEETING DOWN HERE THERE'S AN AWARD CEREMONY UPSTAIRS. THAT'S NUMBER OF PEOPLE WHO MISSED THEIR AWARD BECAUSE THEY HAVE BEEN DOWN HERE WITH US BUT ONE IS THE CR DATA -- SEER DATA QUALITY TEAM WHO RECEIVED N DIRECTOR'S AWAR FOR OUTSTANDING -- AWARD FOR OUTSTANDING EFFORT AND IP INVESTIGATION. [APPLAUSE] >> THAT INCLUDED LOIS, CAROL JOHNSON, JENNIFER RUHL AND PEGGY AND SUSAN ADAMS. THERE WAS ALSO AN AWARD GIVEN FOR THE GROUP THAT WORKS WITH HD COW WHICH LOOKS AT HEALTH DISPARITIES USING SEER AND OTHER DATA AS WELL BUT PRIMARILY SEER DATA. AND THERE WAS A GROUP THAT RECEIVED AN AWARD PROJECTING THE U.S. CANCER BURDEN USING SEER DATA. I'M SORRY, PEGGY GOT A TEN YEAR AWARD. AND BETSY SO LOTS OF AWARDS GIVING OUT UPSTAIRS. THE TEXAS IS USING MEDICARE CLAIMS TO SUPPLEMENT SEER DATA. SO I WANTED TO JUST GIVE AN OVERVIEW OF THE NUMBER OF DIFFERENT WORK ON GOING IN THIS AREA AND REPORT BACK FROM A WORKING GROUP THAT'S BEEN MEETING. SO ULTIMATE GOAL WE TALKED ABOUT A YEAR AGO WAS TO USE SEER MEDICARE CLAIMS TO AUGMENT THE CHEMOTHERAPEUTIC TREATMENT VARIABLES IN SEER. THE THOUGHT WAS THIS ONE DONE AT THE SEER LEVEL TO ENSURE IT WAS SIMILAR BETWEEN REGISTRIES. WHEN I SAY SIMILAR, SAME DEFINITIONS AN ALGORITHMS WERE USED TO AUGMENT TREATMENT VARIABLES. THE PROCESS FOR AUGMENTING THE THE DATA COULD BE DONE CENTRALLY AT IMS HERE ACROSS THE SEER REGISTRIES AND THE DATA WOULD BE AVAILABLE THROUGH N FOR ALL OF SIERRATHER THAN SPECIFIC REGISTRIES. I WANTEDDED TO MENTION THIS EFFORT IS NOT TO REPLACE ONGOING WORK USING SEER MEDICARE DATA. I THINK THERE'S A NUMBER OF ONGOING PROJECTSi „ USING THE MEDICARE TO IMPROVE DATA QUALITY AND LOOKING BACK TO FACILITIES AND PROVIDERS AND IMPROVE DATA COLLECTION METHODS. AND THOSE EFFORTS STILL HAVE TO GO THROUGH THE USUAL PROCESS TO SUBMIT TO SEER MEDICARE YOUR PLAN AND GET APPROVAL THAT WAY. WHERE WE WERE LAST YEAR, WE WEREN'T SURE HOW RMS BUT FEELING ABOUT USING MEDICARE TO SUPPLEMENT DATA. SOME THIS CANS WE TALKED ABOUT HAVING A SEER MEDICARE VARIABLE, THEY WERE IN THE COMFORTABLE WITH. SO'S BEEN ONGOING TALKS REALLY BEEN A GREAT ASSET IN TALKING WITH THEM AND NEGOTIATING. THEY HAVE AGREED THOUGH DETAILS STILL WORKED OUT BUT WE CAN USE THE HEAD CARE INFORMATION TO AUGMENT TREATMENT INFORMATION IN SEER BUT THEY DON'T WANT US NECESSARILY MAKING IT OBVIOUS OR MAKING IT AVAILABLE WHICH VARIABLES WERE CHANGED USING MEDICARE AND WHICH SELECTED TO REGULAR SEER PROCESS SO NO IDENTIFICATION OF WHICH CHANGED SO YOU COULDN'T DISTINGUISH WHICH SPECIFIC CASE HAD A TREATMENT VARIABLE FROM MEDICARE VERSUS SEER, IT WAS GOING TO BE AUGMENTED IN TO THE SEER VARIABLE AND PRESENTEDD AS ONE. SO IN THE LAST YEAR THERE'S ACTIVITIES IN THIS GENERAL AREA HAPPENING AT ONCE SO THOUGHT IT WOULD BE USEFUL TO HAVE PEOPLE PRESENT HERE AND LOOK AT IT COLLECTIVELY RATHER THAN INDIVIDUALLY. THERE WERE TWO RSS STUDIES FUNDED TO LOOK AT A PROCESS OF AUGMENTING DATA USING MEDICARE CLAIMS AN WE HAD A WORKING GROUP THAT'S MET ABOUT MONTHLY THROUGHOUT THE YEAR TO THINK ABOUT SOME OF THE ISSUES WHAT WE RECOMMEND HOW TO AUGMENT THE DATA. DEFINITIONS WE'D USE. THERE WAS UPDATES, SOME THINGS THAT WERE -- WE IDENTIFIED THEM IN OUR WORKING GROUP BUT IT TURNS OUT THEY WERE ALREADY KNOWN AND LOIS AND OTHERS HAVE BEEN WORKING ON UP AT A TIMING SEER RX AND SHE EEL PRESENT THAT IN A BIT. WE ALSO DECIDED WE WOULD LIKE TO CONTRACT SOME EXPERTISE IN THE ACTUAL MEDICARE CODING TO MAKE SURE IF WE DO IT ACROSS SEER WE'RE GETTING THIS RIGHT. AND SOMEBODY WHO CAN HAS A LOT OF EXPERIENCE WITH MEDICARE AND CAN IDENTIFY WHICH CODES WERE TREATMENT AND THAT SORT OF THING. HERE IS OUR CURRENT WORKING GROUP, THE PEOPLE AT THE BOTTOM IN BLUE JOINING OUR WORKING GROUP BECAUSE THEY WORK ON THE RSS LOOKING AT AUGMENTING SEER DATA. HELEN PARSONS THE PERSON WE CONTRACTED AT THE UNIVERSITY OF TEXAS. AND SHE HAS HAD EXPERIENCE WORKING WITH MEDICARE CLAIMS DATA. SHE'S ALSO BEEN AT N WHERE SHE WORKED WITH JOAN WARREN AND I THINK SHE COULD ADD SOME EXPERTISE ABOUT HOW TO ANALYZE DATA BUSINESS AN PICK THE APPROPRIATE CODES TO IDENTIFY CHEMO AN RADIATION TREATMENT. SO SECOND THING TO REPORT BACK THE THINGS THE WORKING GROUP HAS BEEN THINKING ABOUT AND SOME OF THE DECISIONS THAT WERE MADE. SO THE MAJOR QUESTIONS THAT WE WERE CONSIDERING, THE FIRST ONE IS WHAT IS THE WINDOW OF TIME FOR THE FIRST COURSE OF TREATMENT. BECAUSE WE'RE TRYING TO MATCH THE VARIABLE THAT'S CHECKED IN SEER NOW. CAN WE DISTINGUISH BETWEEN SINGLE AND MULTI-AGENT CHEMOTHERAPY MANY THE MEDICARE DATA AND IDENTIFY THE TYPE OF RADIATION. CAN WE USE ADMINISTRATIVE BILLING CODES OR ONLY CONSIDER DRUG CODES. ARE WE INTERESTED IN ADJUVANT THERAPY OR NEOADJUVANT THERAPY OR BOTH. ON THE FIRST CALL IT BECAME OBVIOUS THAT THE ANSWER TO QUESTIONS VARYRIES BY SITE AN STATE AND A GROUP NEEDED TO INCLUDE ONOLOGIST FAMILIAR WITH THE SITE TO TALK ABOUT THESE QUESTIONS. EARLY DECISIONS MADE AT LEAST AT THE BEGINNING WE USE MEDICARE CLAIMS TO CHANGE UNKNOWN TREATMENT TO TREATMENT RECEIVED AUGMENTING DIAGNOSIS DATES '92 THROUGH 2009 CAPTURING SPECIFIC TREATMENTS WOULD BE BEYOND THE SCOPE OF THIS PROJECT AND THE THOUGHT WAS WE'RE NOT TRYING TO RECREATE SEER MEDICARE BUT REALLY SUPPLEMENT VARIABLES ALREADY THERE. CURRENT CLASSIFICATION AND SOME OF THE DRUGS IN SEER SEEM TO BE ENCONSISTENT WITH PRACTICE, TWO EXAMPLES WERE HERCEPTIN CODED AS CHEMO. AND BIOLOGICS, THAT'S GENERALLY BELIEVED TO BE CHEMO IN PRACTICE. SO THERE WAS A QUESTION OF SHOULD WE MATCH WHAT SEER IS DOING NOW OR USE MEDICARE DATA TO DO WHAT'S BEST SO AT THE SAME TIME WE'RE TRYING TO CHANGE SEER RX SO WHAT SEER DOES MORE REPRESENTS HOW THINGS ARE THOUGHT OF IN PRACTICE. WE DECIDED THAT WE WOULD MATCH THE DEFINITIONS IN SEER BECAUSE OTHERWISE IT WOULD BE TOO CONFUSING BECAUSE YOU HAVE DATA CODED WITH ONE DEFINITION AND YOU WOULD USE A DIFFERENT DEFINITION SEER MEDICARE SO THAT WOULD BE CONFUSING FOR THE USER. THE FIRST SITE BUT BREAST CANCER. WE DISCUSSED STANDARD TREATMENT FOR DIFFERENT STAGES APPROXIMATE IMPACT OR SPECIAL CONSIDERATIONS LOOKING AT MEDICARE CLAIMS FOR THAT SITE. IF WE KNOW FOR A SPECIFIC STAGE EITHER A SINGLE AGENT IS APPROPRIATE FOR MULTI-AGENT WOULD BE APPROPRIATE SHOULD WE ASSUME THEY'RE GETTING WHAT WOULD BE APPROPRIATE. WE THOUGHT THAT'S CIRCULAR REASONING BECAUSE IF WE WANT TO USE THE DATA TO/ THEY'RE GETTING APPROPRIATE TREATMENT WE CAN'T BE ASSUMING THEY'RE GETTING APPROPRIATE TREATMENT SO IF STANDARD TREATMENT AN WE BELIEVE EVERYONE RECEIVING MULTI-AGENT CHEMOTHERAPY FOR A CERTAIN STAGE WE WOULDN'T ASSUME THAT BECAUSE DONE SEEM LIKE A GOOD IDEA SO IF E WE COULDN'T TELL SOMEBODY HAD MULTI-AGENT CHEMOTHERAPY, IT WOULD BE CODED N OBJECTIONS. EVEN P IF WE BELIEVE WE THOUGHT CHEMOTHERAPY USUALLY STARTED MANY TWO MONTHS WITHIN SURGERY AND SUGGESTED SICK MONTHS FROM DIAGNOSIS WOULD BE A REASONABLE WINDOW. RADIATION WAS GIVEN AFTER CHEMOTHERAPY, SO THE SUGGESTION WAS NINE MONTHS WOULD BE APPROPRIATE FOR RADIATION. NO SPECIAL CON SEASONS FOR BREAST CANCER USING ADMINISTRATIVE CODES VERSUS DRUG CODES SO WE WOULD USE B FOR BREAST CANCER. BIOLOGICS ARE NOT TIPLY USED SO WE DIDN'T HAVE THE SAME PROBLEM WITH BREAST CANCER WHERE HECEPTIN IS CODED AS CHEMO AND YOU PROBABLY LIKE TO BREAK THAT OUT AS A SEPARATE CATEGORY. SO WE DIDN'T ARE THAT PROBLEM WITH OVARIAN CANCER. THE WIDELY USED TREATMENT FOLLOWED BY CHEMOTHERAPY RADIATION IS NOT TYPICALLY USED AND WE WOULD CLASSIFY THE DRUG AS MULTI-AGENT CHEMOTHERAPY OR NOT OTHERWISE SPECIFIED. PERHAPS I WASN'T CLEAR IF WE ONLY SAW EVIDENCE OF ONE DRUG BUT WE WEREN'T SURE IT SEEMED THE APPROPRIATE TREATMENT WOULD BE MULTIPLE AGENT CHEMOTHERAPY, WE WOULD CODE NOT OTHERWISE SPECIFIED BECAUSE WE COULDN'T TELL WHETHER IT WAS SINGLE OR MULTI-AGENT CHEMOTHERAPY. TIMING WINDOW WAS THE SAME AS BREAST CANCER. FOR COLON CANCER, STAGE 1 THE PRIMARY TREATMENT WAS SURGERY. STAGE 2 WE THOUGHT THAT MOST WOULD NOT NEED ADJUVANT CHEMOTHERAPY BUT SOME WOULD AND HIGH RISK PATIENTS WE RECEIVE PROBABLY WITHIN THE WINDOW OF SIX MONTHS. STAGE 3 WOULD RECEIVE CHEMOTHERAPY AND AGAIN A WINDOW OF SIX MONTHS WOULD BE APPROPRIATE. STAGE 4 MAY NOT RECEIVE CHEMOTHERAPY OR MAY RECEIVE CHEMOTHERAPY BIOLOGICS OR RADIATION. SO IN THIS CASE THE TIMING WAS SIX MONTHS FROM DIAGNOSIS. AND FOR COLON CANCER THERE WAS A FEELING THAT MAYBE YOU COULD USE A SPECIFIC DRUG TO ASSUME WHETHER IT WOULD BE MULTI-AGENT OR SINGLE AGENT. SO (INAUDIBLE) I'M PROBABLY PRONOUNCING WRONG THEY SAID WAS NEVER GIVEN ALONE. IF YOU SEE THIS DRUG YOU KNOW THAT IT'S MULTI-AGENT EVEN IF THERE'S NO OTHER DRUG SPECIFICALLY LISTED IN THE MEDICARE CLAIM. RECTUM CANCER WAS PARTICULARLY INTERESTING TO ME BECAUSE IT BROUGHT A LOT OF ISSUES THAT I HADN'T THOUGHT OF BEFORE. SO STAGE 1 IS PRIMARILY SURGERY, STAGE 2 AND 3 THERE IS CHEMOTHERAPIEN APPROXIMATE RADIATION THAT'S GIVEN BEFORE SURGERY AND FOLLOWED BY ADDITIONAL TREATMENT AFTER SURGERY. STAGE 4 MA RECEIVE CHEMOTHERAPY BIOLOGIES OR RADIATION. SO THE TIMING GET MUCH MORE COMPLICATED HERE. WHETHER WE'RE TRYING TO GET NEOADJUVANT THERAPY AND WHETHER TO DISTINGUISH BETWEEN THE TWO SO THE TIMING WINDOW SHOULD IT BE SIX MONTHS FROM DIAGNOSIS OR SIX MONTHS FROM SURGERY. IF SURGERY NINE MONTHS FROM DIAGNOSIS AS A SURROGATE. BUT IF YOU DONE KNOW WHETHER IT'S BEFORE OR AFTER SURGERY, YOU DON'T KNOW WHETHER IT'S ADJUVANT OR NEOADJUVANT THERAPY. SO SINGLE AGENERAL VERSUS MULTI-AGENT CHEMOTHERAPY SIMILAR TO CHEMOTHERAPY AND THE USE OF NEOADJUVANT WAS COMMON. SO SOME OF THE QUESTIONS OR CONCERNS OF THE GROUP MOVING FORWARD THE FIRST RELATED TO WHAT WE'RE GOING TO CHANGE BASED ON THE MEDICARE DATA. SO AS AN INITIAL TAKE WE SAID WE WOULD LOOK AT THINGS UNKNOWN AND IF WE FOUND EVIDENCE OF TREATMENT THEN WE WOULD CHANGE UNKNOWN TO TREATMENT. BUT BASED ON COMPARISON WE DID BEFORE THERE'S A PRETTY SMALL PERCENT OF CASES UNKNOWN AND A LOT OF DISCREPANCY WE FOUND WERE CASES NO IN SEER BUT WE FOUND EVIDENCE OF TREATMENT IN MEDICARE. SO IF WE REALLY -- THE GROUP AGREED TO START WITH UNKNOWN BUT MY PERSONAL OPINION IS IF WE LOOK AT AUGMENTS UNKNOWN THEN I'M NOT SURE THAT WE HAVE VARIABLE THAT WE'RE COMFORTABLE WITH BECAUSE OF THE LARGE MISCLASSIFICATION OF NO. LAST YEAR WHEN WE MET THERE WAS THIS IDEA U COULDN'T TELL A DIFFERENCE BETWEEN NO AND UNKNOWN BECAUSE NO MEANS YOU DIDN'T FIND EVIDENCE OF IT IN THE MEDICAL RECORD AND WE NOW RELEASE TREATMENT DATA ON SPECIAL REQUEST BUT WE PIPE KNOWN AND UNKNOWN INTO ONE VARIABLE, NO UNKNOWN TO BE VERY CLEAR WE CAN'T TELL THE DIFFERENCE BETWEEN YES AND NO AND WE CAN JUST SAY PATIENTS THAT HAVE EVIDENCE OF TREATMENT VERSUS PATIENTS THAT DON'T. SO THIS GIVES EXAMPLE IN THE 2,930,000 CASES THE LARGEST MISCLASSIFICATION WHERE SEER -- SHOULDN'T SAY MISCLASSIFICATION BUT DIFFERENCE ANSWERS, SEER SAID NO TREATMENT AND MEDICARE SAID TREATMENT FOR CHEMOTHERAPY. SO THE ISSUE CAN WE DISTINGUISH BETWEEN NEOADJUVANT AND ADJUVANT AND WOULD THIS INVOLVE CHANGING ADDITIONAL VARIABLES SUCH AS TREATMENT SEQUENCE INFORMATION. SO PERHAPS YOU CAN'T GO IN AN CHANGE THE TREATMENT VARIABLE BECAUSE IT WILL AFFECT OTHER VARIABLES AS WELL. SO WE NEED TO BE CAREFULLY THOUGHT OUT. AND SHOULD WE DEFINE THE WINDOW FROM DIAGNOSIS OR FROM SURGERY. AND SEER DOESN'T ASK FOR THE DATA SURGERY AT THIS TIME BUT APPARENTLY THE REGISTRIES DO HAVE THE DATA SURGERY SO COULD ASK FOR THE DATA OF SURGERY IF THAT WAS SOMETHING THAT WOULD AFFECT THIS ANALYSIS. THIS POINT I HAVE TO SAY I DON'T HAVE A CLEAR UNDERSTANDING. THEY SAID SYSTEMATIC THERAPY SURGERY SEQUENCE VARIABLES DON'T NECESSARILY GIVE ALL THE INFORMATION THAT YOU WANT. IF CHEMOTHERAPY BUT NEOADJUVANT OR ADJUVANT BECAUSE IT DOESN'T DISTINGUISH KEY MOW AN HORMONE THERAPIES SO THE WAY THE SEQUENCE THERAPY IS NOW IN SEER DOESN'T DISTINGUISH THE WAY YOU HOPE. THAT WOULD BE IMPORTANT IF WE TRY TO MAKE THAT DISTINCTION IN MEDICARE CLAIMS AS WELL. SO I THINK THIS IS A BIG ISSUE, THE CLASSIFICATION OF DRUGS IN SEER TO ENSURE THAT WE HAVE THE CLASSIFICATIONS THAT ALLOW ASSESSING APPROPRIATE CARE, I ASSUME THE BIGGEST USE FOR DATA IS TO LOOK AT WHETHER PATIENTS GET APPROPRIATE CARE AN CONTROLLING FOR THAT AND SURVIVAL SO WE HAVE THE MAKE SURE THAT WE HAVE THE DRUG CLASSIFIED IN A WAY THAT WE CAN ASSESS THAT. ONLY FOR 65 YEARS AND OLDER. SO IF WE'RE GOING TO HAVE AUGMENTED I THINK THAT GETS AT A CONCERN RAISED IF YOU AUGMENT TREATMENT DATA FOR PEOPLE OVER 65 IS THE NEXT THING YOU SEE PUBLICATION SAYING PEOPLE UNDER 65 ARE UNDERTREATED COMPARED TO OVER65 BECAUSE WE HAVEN'T AUGMENTED TREATMENT DATA UNDER 65. HOW TO MAKE THAT CLEAR AND MAYBE RESTRICT DATA SET IS THE WAY TO DO IT. WHAT THE TIME LINE FOR AUGMENTING THE TREATMENT VARIABLES AND THAT IS NOT CLEAR RIGHT NOW. THERE'S A LOT OF ONGOING PIECES. SO THAT'S AN UPDATE FROM THE WORK GROUP. THE NEXT TWO PRESENTATIONS ARE FROM NAN AND SCARLET. THEY'RE GOING THE TALK ABOUT THE -- THERE ARE LOOKING AT UNDERREPORTING OF TREATMENT. I KNOW NAN IS HERE. SCAR LOT IS TINA. THANK YOU. >> SO UTAH WAS FUND FOR THIS RAPID RESPONSE STUDY AND I HAVE TO ADMIT H COMES ON THE HEELS HAVING BEEN WORKING WITH KATHY AND THE REST OF THE SEER MEDICARE TREATMENT WORKING GROUP. I THOUGHT IT WOULD BE VERY INTERESTING TO SEE HOW UTAH LOOKED IN TERMS OF THEIR TREATMENT INFORMATION H. THIS IS AN IDEA OF WHAT OUR DATA LOOK LIKE FOR CHEMOTHERAPY. WE HAVE POOR SENSITIVITY MEASURES FOR CHEMOTHERAPY BETTER SENSITIVITY MEASURES FOR RADIATION AND PROSTATE HORMONE TREATMENT. IT IS STILL ONLY 70%. THIS NUMBER NEEDS TO BE HIGHER I THINK AND SO I'M HOPING THAT THROUGH THIS RAPID RESPONSE FUNDING WE CAN TRY TO IMPROVE SOME OF THAT DATA. ONE OF THE FIRST OBJECTIVES IS TO WORK CLOSELY WITH THE WORKING GROUP. TO IMPLEMENT AL ALGORITHMS APPLIED TO SEER MEDICARE DATA. WE HAVE CHOSEN ENDOMETRIAL PROSTATE AN FEMALE BREAST CANCERS IN UTAH FROM '92 TO 2007. THAT'S NOW 2009 AND RECEIVED RADIATION, CHEMOTHERAPY, HORMONE AN IMMUNOTHERAPY TREATMENT. SOME OF THE PROSTATE AND CHEMO BREAST CANCERS ARE BEING IN THE WORKING GROUP AND ENDOMETRIAL IS A SPECIAL INTEREST OF DR. NAN HU. SO HE IS VERY INTERESTED IN ENDOMETRIAL CANCER SO I FIGURED KIND OFq  LOOKING AT SOMETHING COMPLETELY SEPARATE MIGHT ACTUALLY SUPPLY SOME KIND OF COMPARISONS THAT WE CAN MAKE WITH THE USUAL PROSTATE AND BREAST CANCER AND SEE HOW THIS WORKS. WE LOOKED AT SEER WIDE DATA FOR RAPID RESPONSE STUDY BUT IN THE LAST CONVERSATION THAT SCARLET AND I HAD WITH KATHY WE WOULD LIKE TO SEE THE WE CAN IMPLEMENT THE ALGORITHMS IN OUR REGISTRIES TO FIGURE OUT WHAT MIGHT BE THE SEPARATE ISSUES IF WE TRIED TO IMPLEMENT IT IN THE DIFFERENT POPULATION. IT WOULD BE AN INTERESTING COMPARISON. THE SECOND AIM IS SIMPLY DEFINE THE PROCESS. FOR INCORPORATING ADDITIONAL INFORMATION INTO EXISTING SEER TREATMENT VARIABLES AS KATHY EXPLAINED OBVIOUSLY A LOT TO CONSIDER WHETHER OR NOT THE ORIGINAL DESIGN OF THE STUDY WAS TO IMPLEMENT IT AT THE REGISTRY. TO HAVE REGISTRIES INCORPORATE THE DATA INTO THE DATA MANAGEMENT SYSTEMS BEFORE IT GETS TO SEER DURING CONCEPTION IS HOW WE PLANNED IT I THINK THAT MIGHT CHANGE NOW THAT WE MIGHT CONSIDER ALTERNATIVES TO CENTRALIZE THE PROCESS. SOME OF THE SPECIFIC AIMS SEEN VARY SIMPLE BUT I THINK THAT WE REALLY NEED TO BE SYSTEMATIC ABOUT THE APPROACH TO IT. SO OF O COURSE WE'RE GOING TO COORDINATE WITH THE WORKING GROUP WHICH IS ONGOING AND GET A COPY OF THE UTAH MEDICARE DATA WHICH WE ALREADY HAVE AN REQUESTED LAST YEAR. SO WE NEED AN UPDATED FILE TO THAT. I FELT LIKE A FISH OUT OF WATER BECAUSE I DIDN'T REALLY KNOW LITERATURE MIND CAPTURING TREATMENT MEDICATION FROM THE SEER MEDICARE DATA SO FROM MY PER SPECK TV I THOUGHT IT WAS IMPORTANT TO START OUT WITH A REVIEW OF THE LITERATURE THAT OTHER INVESTIGATORS HAVE DONE WORK FOR. AND WORKING WITH ON TANNING THE PROGRAMMING AND THAT'S THE WORD NOT COMPLETELY STARTING FROM SCRATCH. IN ORDER TO MACK SURE HOWEVER WE WERE DEFINING THE TREATMENT IN THE MEDICARE DATA, REALLY WON FORMED TO THE SEER CODING RULES AN PRACTICES AS OTHER REGISTRARS WERE CODING. IN ORDER TO BE AS CONSISTENT IN THE DEFINITIONS OF THE TREATMENT AS POSSIBLE. ROSE MARY IS TAKING THE LEAD IN THAT REGARD. SO GOD HANDLE ON WHAT'S EXPECTED THERE. THE OTHER ASPECT, GOING THROW THE DATA STANDARDS VOLUME TO IDENTIFY ANCILLARY VARIABLES THAT ARE GOING TO GET AFFECTED BY UPDATING TREATMENT. THERE ARE THINGS LICK RADIATION, SEQUENCE SURGERY VARIABLE THAT MIGHT GET UPDATED THAT WE FINE A PATIENT HAD RADIATION PRIOR TO THEIR SURGERY FOR EXAMPLE OR TREATMENT DATES IF WE FIND THAT SOMEBODY WAS UNKNOWN AND NOW WE KNOW SO THERE'S A LOT OF DOWNSTREAM EFFECTS THAT ARE GOING TO IMPACT THE REGISTRY DATA IF WE TRY TO AUGMENT THIS INFORMATION. THE FOURTH AMOUNT IS TO APPLY THE ALGORITHM, I MADE IT SOUND SIMPLE, RIGHT? APPLY THE ALGORITHM TO THE UTAH DATA SET ON A TEST DATA SET AND ASSESS THE UNDERSTOOD REPORTING IN UTAH. THE LAST FEW AIMS HAVE TO TO WITH EVALUATING THE DATA. THE DIVISION RULES APPLYING THE UPDATES TO SERVER PRE- APPROXIMATE POST DATA IS PART OF IMPLEMENTATION BUT WILL IDENTIFY THE POTENTIAL FACTORS THAT CAN CONTRIBUTE TO UNDERREPORTING, THINGS LIKE THE FACILITIES OR GEOGRAPHIC AREA WHERE THE HOSPITAL, PATIENT FOR EXAMPLE, BASIC DEM GRAPHIC AND ASSESS UNDERREPORTING AFFECTING SURVIVAL ESTIMATES FOR INDIVIDUALS 65 AND OLDER.7¨ SO THIS IS JUST A VERY BASIC DESCRIPTION OF WHAT KISSES WILL BE PULLING OUT AND ASTRICTING OUR ANALYSIS TO AND OBVIOUSLY WILL EXCLUDE CERTAIN ACES, PEOPLE UNDER AGE 65, IT'S ALL ELEMENTARY. IN UTAH WE HAVE ABOUT 69,000 BREAST CANCER CASES AND I THINK THAT THIS MAKES IT MORE FEASIBLE, FOR US TO LOOK INTO DETAIL ON THESE CASES. THESE ARE DIFFERENT VARIABLES THAT WITH WE'LL BE LOOKING TO UPDATE. WE FIND UNDERREPORTING AS A PERCENT CODED HAVING RADIATION HORMONE TREATMENT FROM MEDICARE CLAIMS BUT UNKNOWN IN THE REGISTRY DATABASE. AS KATHY ALLUDED TO WE'RE CONSIDERING LOOKING AT THE -- I THINK IN UTAH WE HAVE SUCH HIGH SPECIFICITY IN OUR REGISTRY, I'M A LITTLE MORE CONFIDENT THAT THE NOES REALLY ARE NO. BUT WE DONE KNOW WHAT WE DONE KNOW SO WE'LL HAVE HAVE TO SEE HOW THIS WORKS AND P DO SENSITIVITY ANALYSIS TO SEE HOW IT EVALUATES OUR DATA. WE HAVE TO APPLY THE DECISION RULES AND IDENTIFY THESE FACTORS THAT ARE CONTRIBUTING TO THE UNDERREPORTING USING LOGISTIC REGRESSION MODELSEN ANALYZE SURVIVAL. SENSITIVITY ANALYSIS. THAT'S IT. ANY QUESTIONS? [APPLAUSE] >> I'M NOT SCARLET GOMEZ BECAUSE I'M TALLER NOT AS WHICHTY BUT HOPEFULLY YOU'LL ENTERTAIN ME PRESENTING HER RECENTLY FUNDED SEER SPECIAL STUDY SIMILAR TO NAN'S. ALSO TREATMENT UNDERREPORTING. SO WE HAVE BEEN TALKING FOR THE LAST HALF HOUR ABOUT THE INPLEATNESS OF THE CANCER REGISTRY DATA AND WE'RE STARTING TO UNDERSTAND IN OUR REGISTRY WHY THIS HAPPENS. PATIENTS VISITING MULTIPLE FACILITIES, WE HAVE BEEN LOOKING IN CALIFORNIA WHERE 40% ARE IN KEISER AN P OF THE NON-KEISER PATIENTS 20 TO 40% OF THOSE ARE WORKING REPORT FOR MULTIPLE FACILITIES. SO WE DOPE KNOW WHY MAYBE WE TALKEDDED DISTANCE TO FACILITIES, WE TALKED ABOUT INSURANCE CHANGING PERHAPS ESPECIALLY IN UNCERTAIN ECONOMIC TIMES, ONE OF THE REASONS PEOPLE GO TO MULTIPLE FACILITIES. WE FOUND SATELLITES FLOW STANING FACILITIES ARE NOT AS DILIGENT ABOUT REPORTING INFORMATION TO OUR CENTRAL CANCER REGISTRY. AND THEN KATHY TALKED ABOUT THE TIMING OF ESPECIALLY NEW ADJUVANTS, TREATMENT AND HOW THAT CAN BE (INAUDIBLE) CANCER REGISTRY TO PICK UP. IN THE LITERATURE IF YOU LOOK AT THE ISSUE OF UNDERREPORTING FOR RADIATION, THESE ARE SOME OF THE PAPERS THAT ESTIMATE ANYWHERE BETWEEN 11 TO 17 TO 32% DEPENDING ON CERTAIN PATIENTS TUMOR INSTITUTIONAL CHARACTERISTICS FOR CHEMO THESE ARE ESTIMATES IN OUR REGISTRY LOCKING AT 3,000 BREAST CANCER CASES VERSUS SELF-REPORT WE FOUND 11% UNDER AS CERTAIN. AND JOAN (INAUDIBLE) MORE SENSITIVITY OF MEDICARE CLAIMS. GRAPH SENSITIVITY AND POSITIVE PREDICTIVE VALUE OF OUR SEER TREATMENT DATA RELATIVE TO MEDICARE CLAIMS DATA. YOU CAN SEE THAT ALL THESE VALUES ARE IN THAT AWKWARD PHASE NOT HIGH ENOUGH TO FEEL GOOD ABOUT THIS RESEARCH, THIS IS A REAL ISSUE FOR ALL OF US INTERESTED IN USING TREATMENT DATA. SO THE OBJECTIVES ARE SYSTEMATICALLY EVALUATE FOR OUR TWO SEER REGIONS IMPACT MEDICARE CLAIMS DATA ON CHEMO RADIATION AN HORMONE THERAPY FOR BREAST PROSTATE COLON AND RECTUM AND EVERYTHING WE LEARNED TOWARD DEVELOPMENT OF ALGORITHM FOR INCORPORATING CLAIMS BASED TREATMENT DATA INTO REGISTRY. SO THESE ARE AIMS AN THEY'RE DESCRIPTIVE TO UNDERSTAND WHO WE GAVE INFORMATION FROM MEDICARE CLAIMS VERSUS WHAT WE ALREADY HAD IN THE REGISTRY FOR DIFFERENT GROUPS CONDUCT THIS SCRIPTED ANALYSES AND SURVIVAL ANALYSES TO UNDERSTAND IMPACT OF THAT MISSING TREATMENT CLAIMS BASED TREATMENT DATA ON SURVIVAL ESTIMATES. SO SHE WILL FOCUS ON RAID YEAR AGO AND CHEMO FORBORE, COLON AND RECTUM AND RADIATION OR PHONE THERAPY FOR PROSTATE CANCER. INCLUSION CRITERIA ARE WHAT YOU EXPECT FOR MEDICARE CLAIMS BASED STUDY, EVERYONE HAS TO BE HAS TO BE 65 OR OLDER AND COMPLETE MEDICARE CLAIMS FOR THE PERIOD CORRESPONDING 12 MONTHS AFTER DIAGNOSIS. AND CONTINUOUS ENROLLMENT IN MEDICARE DURING TIME PERIOD OBVIOUSLY NONE OF THE MEDICARE HMO FOLKS. THIS IS INFORMATION ABOUT WHAT SHOULD BE COINED FROM MEDICARE CLAIM DATABASES. AND MINIMIZE CAP CAPTURE CORRESPONDING TO RECURRENCE RESTRICTING EVERYTHING TO ONE 12 MONTHS AFTER DIAGNOSIS AND DEPENDING ON THE SITE SHE WILL LENGTHEN OR SHORTEN THAT. SHE WILL CREATE DIE COT MOUSE YES, NO VARIABLES RECEIVED ACCORDING TO REGISTRY AND THE THE MEDICARE CLAIMS. THIS IS HOW THEY ARE DEFINED AND FORM THE BASIS FOR THE SENSITIVITY AND PREDICTIVE VALUE ANALYSES, THIS IS THE SIZE WE LOOK AT IN OUR REGISTRY ACCORDING THE TO SITE. SO IT WILL BE GOOD TO HAVE GOOD NUMBERS COMING IN FOR SOME OF THE NON-WHITE RACIAL ETHNIC GROUPS. WE EXPECT TO BE ABLE TO INCLUDE DIAGNOSES ALL THE WAY THROUGH 2009. USING THE NEW SEER MEDICARE DATA MADE AVAILABLE VERY SOON. SO THAT'S EXCITING TO HAVE FRESHER DATA. AS KATHY SAID THIS GROUP IS PLUGGED IN WITH THE WORKING GROUP AND NAN'S GROUP TO FULLY INFORM WHAT NEEDS TO BE DONE SEER WIDE TO MAKE A DECISION ABOUT INCORPORATING THIS DATA. SO I WAS WORKING WITH OUR ANALYST AND KATHLEEN REGISTRY MANAGER. AND IF THERE'S ANY QUESTIONS I WOULD BE DELIGHTED TO TAKE A CRACK AT IT OR REFER YOU TO KATHLEEN WHO PROBABLY NOSE MORE (INAUDIBLE). MICHAEL. (OFF MIC) >> SO A COUPLE OF YEARS AGO HAWAII AND KEISER RESEARCH PORTLAND WERE FUNDED THROW SEER ABLE WE DID A CRN PROJECT. CANCEL RESEARCH NETWORK. IT WAS FOR COLOR RECTAL CANCER, IT WASN'T TO DETERMINE LACK OF TREATMENT BUT THE BASIS HORN BROOK GOODMAN AND GREEN AUTHORS ON THAT. BUT WHAT THE PURPOSE WAS TO DETERMINE FEASIBILITY OF CONDUCTING RECORD LINKAGE WITHIZER BECAUSE THEY WERE PARANOID ABOUT GETTING IDENTIFY IERS TO THE CANCER REGISTRY. SO ONE THING WE DISCOVERED IN THE DISCOURSE WAS PHENOMENA CALLED CAPITATION. I'M WONDERING WHAT I UNDERSTOOD FROM THIS WAS THE SLID SAID YOU WESTERN GOING TO INCLUDE AFTER 12 MONTHS, OBADIASER IS HMO. >> MEDICARE CLAIMS, DETAILED CLAIMS DATA (INAUDIBLE) >> BECAUSE OF CAPITATION. WHAT WE DISCOVERED WAS WE COULDN'T GO BACK TO CHECK TO SEE BECAUSE THEY BASICALLY IT'S ONE CHARGE AND IT SIMPLIFIED AND YOU DON'T GET THAT. SO (OFF MIC) >> SO I WONDER IF THAT WOULD AFFECT TREATMENT. (OFF MIC) >> THAT WAS MY QUESTION, IF WE WANTED TO THE A TREATMENT AND -- (OFF MIC) >> KIND OF RELATED I THINK THE CLAIMS DATA ARE ULTIMATELY A BETTER SOURCE OF ENOUGH BECAUSE OF MULTIPLE FACILITY PROBLEMS, AS PART O OUR MULTIPLE FACILITIES LITTLE ANALYSIS WE FOUND THE KEISER PATIENTS ARE RARELY OUTSIDE OF KEISER. MAYBE 1ER 2% HAD A RECORD OF BEING SEEN AT ANOTHER FACILITY. MAYBE PAYING OUT OF POCKET. WE HAVE DONE SOME LINKAGE WITH KEISER TO ADDRESS SOME OF THESE ISSUES AND STILL KIND OF SURPRISING THAT YOU CAN'T GET EVERYTHING OUT OF UP TO 100% NO MATTER WHAT YOU LINK UP WITH. (OFF MIC) >> DEPENDS I KNOW IN CALIFORNIA REACCEPTLY BUILT THAT INFRASTRUCTURE BUT IT'S THE WHOLE QUESTION OF MULTIPLE FACILITIES, REALLY INTERESTING IMPORTANT ONE BUT ALSO BUDGETS HOW IMPORTANT POPULATION BASED MANDATED DATA ARE IN CONJUNCTION WITH THINGS LIKE CLAIMS DATABASES WHERE YOU CAN REALLYTRY TO CAPTURE EVERYTHING PAID FOR BY THAT INSURANCE COMPANY. RESOURCE FOR LOOKING -- FOR ANALYSES THAT REQUIRE COMPLETE DATA. (OFF MIC) (OFF MIC) >> GOOD. OKAY. [APPLAUSE] >> I'M GOING TO WRAP THIS SESSION UP WITH INFORMATION ON A SEER RX UPDATE COMING UP. AS Y'ALL KNOW THE ISSUE WAS THAT SOME DRUGS WERE IDENTIFIED AS CHEMOTHERAPY WHEN THE ONCOLOGY COMMUNITY WAS LOOKING AT BRM OR IMMUNOTHERAPY. ABOUT A YEAR AGO OR SO I STARTED GETTING EMAILS TO ASK CTR FROM THE ONCOLOGY COMMUNITY, THESE ARE RESEARCHERS AND CLINICS ASKING ABOUT THESE DRUGS IN THEIR VIEW MISCLASSIFIED. THESE -- THE ONES THAT LED US TO THE TOP ARE HERCEPTIN, AVAS TIN AND RETUXAN. SEER RX IS CHEMOTHER P BY AND THAT'S HOW THEY SHOULD BE CODED. ANOTHER WAS SEER MEDICARE, WE WEREN'T JIBING WITH THAT AND THERE WERE SPECIAL STUDIES OVER THE PAST YEAR THAT WERE LOOKING AT DRUGS AND INSTRUCTING PARTICIPANTS TO CODE AS IMMUNOTHERAPY AND SEER RX TELLING THEM SOMETHING DIFFERENT. SO THAT ISSUE IS IDENTIFIED. SO I DID LOOKING TRYING TO FIGURE IT MADE SENSE TO ME THESE SHOULD BE IMMUNOTHERAPY, WHY WERE THEY CLASSIFIED AS CHEMOTHERAPY. SO BACK IN 20042005 WHEN THE SEER RX TOOL WAS BEING CREATED, THE DECISION WAS MADE THESE THREE DRUGS SPECIFICALLY WOULD BE Y DESIGNATED AS A CYTOSTATIC CHEMOTHERAPY AGENT RATHER THAN IMMUNOTHER I FOR THE FOLLOWING REASON. MONOCLONEAL ANTIBODIES AND DIDN'T MEET CRITERIA AS IMMUNOTHERAPY, THE WAY WE ACTED ON THE TUMOR. SO THERE WAS A CATEGORY OF CHEMOTHERAPY. THAT'S THE RATIONALE INQUIRERIES TO WHY, THIS IS MY STANDARD ANSWER, THIS IS WHY WE DID IT BACK THEN. THE CURRENT VIEW CHANGED AND LITERATURE OUT THERE, PDQs, ALL KINDS OF PUBLICATIONS, THESE DRUGS ARE CONSIDERED A MOLECULAR TARGETED THERAPY. AND EVEN THE RESEARCH COMMUNITY DOESN'T KNOW HOW TO CLASSIFY THEM AND THEY'RE A MOVING TARGET. SO THEY CAN FALL INTO A MULTITUDE OF CATEGORIES. SO THE STATUS WAS THAT I STARTED REVIEWING ALL THE DRUGS THAT WE HAD CATEGORIZED AS CHEMOTHERAPY WITH SUBCATEGORY OF MONOCLONEAL ANTIBODY THAT'S WHERE HERCEPTIN AND AVAS TIN AND RETACK ZAHNFELD INTO. SO THE REVIEW OF THAT CRITERIA, OUT OF 21 IDENTIFIED 11 FOR CATEGORY CHANGE. THE OTHER TEN ACTUALLY FELL OUT BECAUSE THE FDA PULLED THOSE OFF THE MARKET. SO THEY'RE NOT AVAILABLE OUT THERE. SO THE NEXT STEP IS I WILL BE ADVISING OUR PARTNER ORGANIZATIONS SUCH AS NACR, NCRA AND ALL OF THEM OF THESE CHANGES. AND THEY OTHER AWARE WE WERE REVIEWING THEM AND THEY'RE COMING DOWN THE PIKE. AND THEY'RE UPDATED IN CRX. WE HAVE A REMARK BUILD IN THE TOOL, IN THE CRX TOOL. THAT PROVIDES CLOTHING INSTRUCTIONS, ADDITIONAL INFORMATION, ON THESE DRUGS,. I WILL ADD A CLEAR STATEMENT THAT THE CATEGORY HAS CHANGED. AND THESE WILL BE EFFECTED WITH CASES DIAGNOSED, 2013, THE REGISTRY COMMUNITY LIKES TO HAVE CLEAR CUT DATES AS # WILL BE 113 IT WILL BE IN EFFECT AND IT WILL BE CHANGED. THERE ET CETERA A TYPO IN THERE. I WILL BE WORKING WITH PEGGY TO ADD A REVISED INSTRUCTION TO THE 2013 SEER ADDENDUM IN THE MANUAL SO THAT WE CAN GET THAT IN THEREIN BROADCAST OUT THERE. APPROXIMATE ANNOUNCEMENT WILL ALSO BE POSTED POSTED ON THE SEER WEBSITE TO DOWNLOAD THE NEW DATABASE. AND THE TOOL ON THAT, IT WILL INSTRUCT THEM OF CHANGES WHAT DRUGS ARE CHANGED, CHANGES IN EFFECT AND REASONING BEHIND IT. NCRA, NCI SEER ALSO HAS A MAILING LIST, WE ASK ANYBODY THAT IS INTERESTED TO SIGN UP FOR THAT. WE BROADCAST. SO THAT GOES OUT TO THE REGISTRY COMMUNITY AS WELL AS RESEARCHERS. I WAS REALLY SURPRISED TO FIND OUT HOW MANY CLINICIANS AND RESEARCHERS USE SEER RX BECAUSE THAT WAS THE MAJORITY OF EMAILS AND INQUIRIES THAT I RECEIVED CONCERNING MISCLASSIFICATION OF THESE DRUGS. ANY QUESTIONS? I CAN PUT THIS REALLY QUICK. (INAUDIBLE). (OFF MIC) >> (INAUDIBLE) AT THE TOP? I HAVEN'T GONE IN AND LOOKED AT ALL OF THEM ON IT SO THAT WILL BE CHANGED. >> THAT WILL BE CHANGED IN THE NEXT VERSION. >> YEAH. >> I'M SORRY, I COULDN'T GET THE MIC ON. THERE WAS ANOTHER -- I THINK LUKE WARREN IS CHEMO BUT CLASSIFIED AS SOMETHING ELSE, I WAS ASKING IF THAT WAS GOING TO BE CHANGED AS WELL. >> I HAVEN'T KEPT UP WITH THIS IN SOME TIME BUT WE HAD AN NCCC COORDINATING COUNCIL MEETING FOCUSING ON HEALTH SERVICES RESEARCH. LIZ WAS THE ONE TALKING ABOUT IT AND WAS BRINGING THAT TO THE ATTENTION ABOUT THE CHANGE. I THOUGHT I UNDERSTAND FROM THAT THE CHANGE WAS NOT ONLY LOOKING AT LITERATURE AND ONCOLOGY COMMUNITY, BUT IN FACT THAT CHANGE WAS CONSISTENT WITH’V CLASSIFICATION PART OF FDA AND WAS COMPARABLE TO WHAT ALL THE DRUG DEVELOPMENT, ALL THE SUBMISSIONS TO FDA FOR APPROVAL. IT IS CONNECTED TO A LARGER SET OF VOCABULARY AN CLASSIFICATION. THAT THE SAME THING NOW THAT YOU'RE GOING BACK TO TARGETED THERAPIES? >> EXACTLY. THAT'S WHAT IT IS. YEAH. THAT IS THE CONSENSUS ACROSS THE BOARD. I COVERED MY BASES AND MADE SURE. ANY MORE QUESTIONS? [APPLAUSE] >> THE NEXT SESSION IS GOING TO BE A REPORT ON SOME RRSS STUDIES FUNED TO LOOK AT CENSUS TRACK ANALYSIS. UNFORTUNATELY KENDRA COULDN'T BE HERE SO SHE'S NOT ABLE TO PRESENT THIS TIME BUT WE'LL HAVE HER REPORT IT WHEN SEER CALL, RESEARCH CALL IN THE FUTURE SO CAROL SWEENEY WILL TALK ABOUT (INAUDIBLE). >> SO THE PROJECT OF USING CENSUS TRACK VARIABLES FOR CANCER INCIDENCE ANALYSIS WAS ONE OF OUR RRSS TOPICS ORIGINALLY PUT FORWARD BY N BY DAVID (INDISCERNIBLE) AND UNDER THIS GENERAL TOPIC WE CAME UP WITH WITH A COUPLE OF SPECIFIC QUESTIONS WE WERE INTERESTED IN PURSUING IN OUR PROPOSAL. SO ONE WAS ABOUT BREAST CANCER IN HISPANIC SUBPOPULATIONS. SO MY GUESS IS NINE OF TEN PEOPLE WHEN OFFERED THE OPPORTUNITY FOR CENSUS TRACK VARIABILITIES WOULD HAVE THOUGHT SOCIO ECONOMIC STATUS. SO HISPANIC POPULATION SO QUITE A FEW SLIDES HERE, THIS IS THE BACKGROUND OF WHERE THIS IDEA EVEN CAME FROM. THREE MAIN ISSUES. THERE ARE DIFFERENCES IN CANCER INCIDENCE AN MORTALITIES FOR HISPANICS COMPARED TO NON-HISPANICS. I HAVE A SLIDE FOR GENERAL BACKGROUND DATA. THERE IS ENZYMATIC HETEROGENEITY HISPANIC AND LATINO POPULATIONS. I FEEL TIMELY WITH THIS TALK BECAUSE I WAS WATCHING THE NEWS, THE RETURNS COMING FROM THE PRESIDENTIAL ELECTIONS AND THEY KEPT TALKING THE HISPANIC VOTE AND HOW MUCH THE HISPANIC POPULATION HAS GROWN AND VOTER POPULATION HAS GROWN. IF YOU LOOK AT THE 2010 CENSUS FOR YOUR COMPARED TO THE 2000 CENSUS THE CONFERENCE IN THE HISPANIC POPULATION IS SIGNIFICANT. ALSO WATCHING THE ELECTION RETURN THEY HAD ONE PERSON TALKING ABOUT THE HISPANIC VOTE IN DADE COUNTY, FLORIDA AND THEN FEW MINUTES LATER SOMEONE TALKING ABOUT HISPANIC VOTE IN WHATEVER COUNTY IN NEVADA THAT HAS LAS VEGAS. SO THOSE WERE THE SAME THINGS. THOSE ARE NOT THE SAME THING ALL. POLITICALLY CULTURALLY AND OTHER WAYS, THEY'RE SPANISH SPEAKING POPULATIONS. SO I FEEL TIMELY WITH THIS TALK. THAT IS THE UNDERLYING ISSUE OF THIS ANALYSIS IS PEOPLE IN THE U.S. OF MEXICAN HERITAGE, PUERTO RICAN HERITAGE SO ON HAVE GENETIC CULTURAL SOCIO ECONOMIC DIFFERENCES AMONG THOSE GROUPS SO BY LOCHING THEM TOGETHER THIS IS IN THELY -- LUMPING THEM TOGETHER AS THE HISPANIC POPULATION FOR ALL SORTS OF HEALTH DATA ARE WE MISSING IMPORTANT DISTINCTIONS. THEN FINALLY THERE'S VERY LIMITED ABILITY TO DO THIS TO LOOK AT THESE POPULATIONS SEPARATELY WITHIN THE US. THIS IS SEER DATA NEW MEXICO ONLY BECAUSE THIS IS SOMETHING SOMETIME IN THE PAST RELATED TO A STUDY IN UTAH WITH DATA FROM SEVERAL STATES AND WE FELL MEXICO IN OUR DATA HAD THE BEST PREDICTIVE VALUE OF RECOMMENDATION INDUSTRY CLASSIFICATION OF BEING HISPANIC RELATIVE TO WHAT THE PERSON SELF-REPORTED. SO LIMITING MEXICO, THIS IS PROBABLY A GOOD CLASSIFICATION OF THE ETHNICITY. HERE IS THE -- A SPECIFIC BREAST CANCER INCIDENCE IN NON-HISPANIC WHITES IN MEXICO. HERE IS THE BREAST CANCER INCIDENCE IN HISPANICS IN NEW MEXICO. DOWN HERE FOR COMPARISON ARE AMERICAN INDIAN PES. ALL FROM THE SAME REGISTRY. QUITE A BIG DIFFERENCE IN THOSE RACES. I HAVE A MAC ALL THIS IS, YOU GUYS FILLED THIS OUT BEFORE, IF YOU'RE NOT HISPANIC HECK NO HISPANIC. IT DOESN'T HAVE ONE HISPANIC CATEGORY, ARE YOU HISPANIC, MEXICAN, CHAIR DA KNOW ORIGIN, THEN IT SAYS PUERTO RICAN, CUBAN, THEN TO OTHER. UNDERNEATH OTHER THERE'S A SPACE WHERE YOU'RE SUPPOSED TO WRITE IN I'M FROM VENEZUELA. SO BECAUSE WE'RE TALKING ABOUT CENSUS TRACK HISPANIC DATA I'M GOING TO REMIND YOU HOW THE DATA IS COLLECTED. WE WERE DEALING FOR THIS ANALYSIS DEALING WITH THE 2000 CENSUS DATA, THIS IS THE SISTER REPORT FROM THE CENSUS. THE REPORT THEIR ETHNIC BACKGROUND IS HISPANIC, SPANISH OR LATINO. ROUGHLY CALL IT 60% OF THE REPORT IS MEXICAN. REFLY 10% PER PER TOERY -- ROUGHLY 10% PUERTO RICAN AND P OTHER GROUPS SMALLER, EXCEPT THIS GROUP OF OTHER HISPANIC. WHICH IS HODGEPODGE BECAUSE IT MEANS DIFFERENT THINGS IN DIFFERENT PARTS OF THE COUNTRY ACTUALLY. I'LL COME BACK TO THIS. OH WE HAVE LOTS OF TIME, DON'T WE? OTHER. THE OTHER SPEAKER DIDN'T SHOW UP SO -- SO IN NEW MEXICO BEEN A SEER REGISTRY AND WE IN UTAH HAVING DONE A JOIN STUDY WITH NEW MEXICO A FEW YEARS AGO ON BREAST CANCER I READ UP ON THIS A LITTLE BIT THE HISPANIC POPULATION, 3 OR 400 YEARS. IF YOU ASK THEM WHERE THEY'RE FROM, THEY DO NOT SAY MEXICO. ON THAT SPACE, YOU CAN ACTUALLY -- THEY GET INTO THE DETAILED CENSUS DATA ON WHAT PEOPLE WROTE IN THAT SPACE. NEW MEXICO PEOPLE SPANISH OTHER THING. VERSUS OTHER PART OF THE COUNTRY WHERE YOU WRITE OTHER HISPANIC. MAYBE THEY DIDN'T SPECIFY IN THE SPACE AND MAYBE REALLY ARE MEMBERS OF THE OTHER GROUPS BUT DIDN'T BOTHER TO WRITE IT OR THERE COULD BE POSSIBLY A NUMBER OF OTHER REASONS SO THIS OTHER CATEGORY IS QUITE LARGE AND KIND OF A PROBLEM FOR THE ANALYSIS I WAS PROPOSING. SO SO RETURNING TO THE IDEA THERE'S GENETIC VARIATION THAT GOES ALONG WITH THIS HISPANIC ORIGIN SUBPOPULATION, THIS IS A NICE GRAPHIC. I THINK IT'S AESTHETICLY NICE GRAPHIC. IT'S STUDY OF ASTHMA, THIS IS A CONTROL POPULATION. THEY HAD HISPANICS AND SAN FRANCISCO BAY AREA WHO SELF-IDENTIFIED AS MENTION CONDITION ORIGIN AND SPANISH PUERTO RICO. THE TOP BAR IS PUERTO RICO. AND EACH VERTICAL BAR IS ONE PERSON. THEY ESTIMATED USING A PANEL OF MARKERS, THEY ESTIMATED NATIVE AMERICAN EUROPEAN AND AFRICAN HERITAGE OF EACH INDIVIDUAL. FIRST POINT, THERE'S HUGE VARIATION AMONG PEOPLE WITH SELF-IDENTIFIED ETHNIC ORIGIN, SOME HAVE EUROPEAN ORIGIN, SOME HAVE ALMOST EXCLUSIVELY NATIVE AMERICAN. BUT IN THE PUERTO RICAN POPULATION THERE'S A SIGNIFICANT AFRICAN HERITAGE WHICH IS SMALLER IN THE MEXICAN POPULATION. I THOUSAND THIS IN BECAUSE THIS IDEA OF GENETIC A MIXTURE APPLIES IN MEXICO ITSELF AND OVER PARTS OF CENTRAL AMERICA SO THIS IS AN EXAMPLE OF SOME GENETICIST DOING A STUDY OF PEOPLE IN MEXICO CITY AND NOT TELLING HOW THEY SAMPLE, THEY JUST SAID THESE ARE PEOPLE. SO THERE WE GO. SO PROPORTION OF EUROPEANS TO NATIVE AMERICAN IS ALONG THIS AXIS HERE AND THEY GOT EVERYONE AEROS THE RANGE IN MEXICO AS WELL. AND ONE MORE THING I'LL JUST GO INTO BUZZ THIS IS A PAPER FROM MARTY (INDISCERNIBLE) FOUR CORNERS BREAST CANCER STUDY WE HAD VAN TICK AD MIXTURES TO IDENTIFY THE HISPANIC POPULATION AS QUARTILE 1 BEING MORE -- SORRY. QUARTILE 1 BEING MORE EUROPEAN GENETIC HERITAGE AND QUARTILE 5 BEING THE HIGHEST NATIVE AMERICAN HER TAKE GENETIC HERITAGE IS NOT INDEPENDENT OF SOCIO ECONOMIC STATUS, NOT INDEPENDENT OF LANGUAGE. NOT UNDERSTOOD PENDENT OF SEVERAL VARIABLES IN THE DATA SET. SO THE POINT BEING THEN AMONG PEOPLE -- IF BREAST CANCER IN THE NATIVE AMERICAN POPULATION IS SO LOW, HISPANIC POPULATION HAS RANGE NATIVE AMERICAN VERSUS EUROPEAN AND OTHER GENETIC HERITAGE SHOULD WE SEE A DIFFERENT BREAST CANCER INCIDENCE WITHIN THE HISPANIC POPULATION ACCORDING TO COUNTRY OF ORIGIN. CULTURAL AND SOCIAL FACTORS THERE TOO. I DON'T HAVE SLIDES ON THOSE. AND SO THIS IS A PAPER PUBLISHED FROM DATA FROM ONLY THE STATE OF FLORIDA THEY REPORTED ON OTHER KAREN SITES TOO, IT ANOINTERSING PAY -- INTERESTING PAPER. THEY REPORTED PEOPLE MEXICAN VERSUS PUERTO RICAN VERSUS CUBAN. WHAT THEY LABELED NEW LATINOS MY UNDERSTANDING FROM THE PAPER IS ANYONE ELSE CANCER INCIDENCE FOR BREAST CANCER AND OTHER SITES IS DIFFERENCE IN THOSE GROUPS. I LOOKED AT THAT AND SAID THAT'S JUST FLORIDA. WHAT ABOUT THE REST OF THE COUNTRY? SO THIS HAD JUST COME OUT OR MAYBE I FREQUENTLY READ IT WHEN THE CALL FOR OUR ASSESSMENTS CAME OUT AND I SAID I WONDER IF THE ISSUE CAN BE LOOK AT BROADLY USING THE CENSUS TRACK HURDLE SO THESE OOH HOW I GOT TO EVEN APPROACH THIS IS ANALYSIS WAS THAT TRAIN OF THOUGHT. SO IN THE SEER REGISTRY, THIS IS A TABLE THAT WAS ACTUALLY FROM OUR PROPOSAL, I JUST LOOKED UP SOME OF THE SEER REGISTRY AND WHAT IS THE SITE OF THEIR HISPANIC POPULATION FOR STATISTICAL POWER AND SO WE DECIDED IN THE SEER PROGRAM BUT INTERRINGLY NEW JERSEY HAS A SUBSTANTIAL POPULATION IN 2000 OUR ANALYSIS SO WE CAN CAPTURE THOSE TWO STATES. SO THE OTHER THING THAT WE LOOKEDDED AT IN PRELIMINARY DATA WAS IN EACH OF THESE STATES THAT HAVE THE SEER REGISTRY WHAT IS THE DISTRIBUTION OF HISPANIC SUBPOPULATION AND I JUST USE THE WHOLE (INAUDIBLE) BREAKDOWN BUT A LOT OF THEM HAVE THE MAJORITY MEXICAN AS IS TRUE OF THE WHOLE U.S. NEW MEXICO DIFFERENT MORE OF THE OTHER HISPANIC POPULATION AS WE TALKED ABOUT NEW MEXICO, YES. THAT'S NEW MEXICO. CONNECTICUT AND NEW JERSEY KIND OF INTERESTING AND DIFFERENT DISTRIBUTIONS FROM THE OTHER GROUP. THAT'S THE WHOLE STATE DISTRIBUTION. AND THESE ARE -- AND AGAIN THAT WAS THE CENSUS OF HISPANIC SUB POPULATIONS. THIS IS NOW THE SEER SPANISH ORIGIN VARIABLE FOR BREAST CANCER CASES FROM THOSE REGISTRIES. SO WE HAD CORD TO THE CENSUS 60% HISPANICS IDENTIFYING MEXICAN OR SHICANO. WHERE ARE THE HISPANICS? SURNAME ONLY OR SPANISH HISPANIC LATINO, THAT'S THE NATURE OF THE SEER DATA TRYING TO GET DATA FROM MEDICAL RECORDS AND IT'S JUST NOT GOING TO HAVE IT. THIS IS A VARIABLE THAT COMES OUT AFTER THE SURNAME MATCH AND AFTER THE FIRST PLACE HAS BEEN INCORPORATED SO WHAT WE FURTHER SAW WAS THAT IF PEOPLE WERE SPECIFICALLY IDENTIFIED IN THE SEER SPANISH ORIGIN VARIABLE PUERTO RICAN CUBAN OR ONE OTHER, IT'S BECAUSE THEY WERE BORN THERE, FROM THE BIRTHPLACE THAT WAS DEVELOPED. SO IN FACT THE PEOPLE WHO DO HAVE A SPECIFIC IDENTIFICATION IN THIS VARIABLE DIFFERENT FROM PEOPLE WHO DONE HAVE ONE IN THEIR PLACE OF BIRTH. MORE PEOPLE WERE BORN IN THE U.S. SO NOT EXTRAPOLATING FROM THESE PEOPLE TO THESE PEOPLE. IS USEFUL BECAUSE THEY HAVE A PRETTY DIFFERENT GROUP OF PEOPLE. SO THESE WERE THE AIMS WE CAME UP WITH BASED ON THAT BACK GROWN. TO EXAMINE FEASIBILITY TO COMPARE BREAST KAREN UNDERSTAND DENSE AMONG HISPANIC -- CANCER INCIDENCE, MEXICAN PUERTO RICAN, SEN SOUTH AMERICAN AND OTHER HISPANICS. WITHIN THAT AIM WE WERE OOH GOING TO UM RISE DISTRIBUTION POPULATION FOR CENSUS TRACKS, COMPARE TO SUB POPULATIONS, AND COMPARE AGE ADJUSTED BREAST CANCER INCIDENCE AMONG HISPANIC SUB POPULATIONS DEFINED ACCORDING TO THE ACCEPT SUS TRACK THEY LIVE IN. SO NEW JERSEY AND GREATER CALIFORNIA TO WORK FROM.– SEER SAID 17 REGISTRIES EXCEPT THAT ALASKA AND LOUISIANA DON'T HAVE THE -- DON'T REPORT THE CENSUS TRACK OR THE CENSUS TRACK ARE NOT MAID AVAILABLE FOR THOSE TWO SO WHAT YOU WOULD THINK AS SEER 17 REGISTRY BUT THERE'S REALLY ONLY 15 OF THEM. IN FACT, RURAL GEORGIA HAD FEWER THAN P FIVE HISPANIC BREAST CANCER CASES SO MOST IS REALLY FOR REGISTRIES. IF THEY WERE -- AND WE ONLY LOOKED AT HISPANIC. SO ALL THE DATA THAT I'M GOING TO SHOW YOU IS NOT -- AT NO TIME DO WE GET TO ISSUE WHETHER SOMEONE COULD HAVE BEEN MISCLASSIFIED AS NON-HISPANIC WHEN REALLY HISPANIC, OR VICE VERSA. WE'RE GOING WITH SEER DEFINITION OF THE CASE AS HISPANIC FROM THE VARIABLE THAT I SHOWED YOU AFTER APPLICATION OF THE ALGORITHM AND THEY WERE HISPANIC AT ALL THEY GET INTO THE ANALYSIS, IF THEY'RE NON-HISPANIC THEY DONE. THE DENOMINATOR HISPANIC POPULATION OF THE CENSUS TRACK. SO TO DO THIS THEY PUT TOGETHER A CUSTOM SEER DATA SET FOR US. THIS IS NOT WHAT THEY WERE ANTICIPATING WHEN THEY ASKED FOR PROPOSALS TO DO THIS TYPE OF ANALYSIS. SO IT WAS QUITE A BIT MORE COMPLICATED TO PUT TOGETHER THIS DENOMINATOR. THAT TOOK A FAIR AMOUNT OF TIME BECAUSE AGAIN, EACH FIVE YEAR AGE GROUP, EACH CENSUS TRACK, HOW MANY HISPANIC FEMALES ARE IN THAT END. SO THAT WASN'T SOMETHING THAT WAS HANDY, THEY -- SO THESE WHOEVER PUT -- INVESTED TIME THIS THAT. THEN IN TERMS -- SO AGAIN IN TERMS OF THE ISSUE OF CENSUS TRACK IDENTIFIABILITY WHICH WAS TALKED ABOUT LAST YEAR, EACH CENSUS TRACK HAD AN ID NUMBER, IT WAS NOT MEANINGFUL IN TERMS OF THE REAL CENSUS TRACK THEY FABRICATED A NUMBER FOR US SO WE CAN LINK ACROSS DATA SETS. SO THE DENOMINATOR THEY WERE ACTUALLY ABLE TO BREAK OUT THESE GROUPS FROM THE CENSUS MEEK CAN PUERTO RICAN AND CUBAN ARE BOXES PEOPLE CHECK AND ALSO WRITE IN YOU MAY OR MAY NOT HAVE BEEN ABLE TO WRITE DOMINICAN ALSO. ENTRAIL SOUTH AMERICAND OTHER HISPANIC IF THEY HAD ACTUALLY WRITTEN OTHER OR WRITTEN SOMETHING THAT DIDN'T FALL INTHE TO ONE OF THESE CATEGORIES OR NOT FILLED IN ANYTHING. EVERYTHING I'M GOING TO SHOW YOU FROM THE 2000 CENSUS BECAUSE THE 2010 CENSUS WASN'T DONE YET. SO WHAT I WAS THINKING OF, THE DATA SHOWED YOU EARLIER FROM FLORIDA, THE APPROACH THEY USED WAS WHAT GOT ME THINKING BECAUSE THEY HAD IN FLORIDA CLASSIFY ABOUT TWO-THIRDS OF CASES IN FLORIDA, THEY HAVE A SPECIFIC SUB ORIGIN POPULATION. BUT THE OTHER ONE-THIRD THEY DID NOT THEY USED AN ECOLOGICAL ASSIGNMENT BASED ON WHAT PART OF FLORIDA THEY LIVED IN. AND WHAT'S THE POPULATION IS KNOWN SO THAT WAS THE THOUGHT PROCESS LEADING TO GEE, IF WE CAN DO THE ASSIGNMENT BASED ON CENSUS TRACK WHICH TINY, THAT MIGHT BE REALLY PRECISE AND GOOD ECOLOGIC MEASURE. SO HOW EXACTLY WOULD WE DO THAT? WE CAN THINK OF AT LEAST THREE WAYS. ONE, WHAT'S THE PLURALITY IN THAT CENSUS TRACK? SO UNDER THE PLURALITY APPROACH, WE ASSIGN THE WHOLE TRACK, COUNT IT BELONGING TO THE SUB-POPULATION REPRESENTING THE LARGEST PERCENTAGE OF THE TRACK OF THE HISPANIC POPULATION. I HAVE A SLIDE COMING UP THAT WILL EXPLAIN BETTER SO PLURALITY IS WITHIN APPROACH, MAJORITY IS ANOTHER WHERE WE COUNT THE WHOLE TRACK BELONGING TO THE SUB-POPULATION THAT REPRESENT IT IS MAJORITY OF THE SUB-HISPANIC POPULATION. IF THEY DIDN'T HAVE ONE AS MAJORITY THEY WERE FALLING INTO SEPARATE CAD GUY. AND THIS PROPORTION APPROACH FROM THE IDEA FROM THE HERO ET AL PAPER, WITHIN THIS TRACT WE MIGHT HAVE A CERTAIN PROPORTION, MEXICAN CERTAIN PROPORTION, CUBAN CERTAIN PROPORTION, PUERTO RICAN, THE NUMERATOR AND DENOMINATOR, THE CASE AND PERSON YEARS WILL DISTRIBUTE AMONG THE SUB-POPULATIONS ACCORDING TO PERCENT DISTRIBUTION OF THAT TRACT POPULATION. SO THIS SO (INDISCERNIBLE) DATA ANALYST PUT THISSING TO FOR ME TO HOPEFULLYnZR ILLUSTRATE BETTER WHAT WE DID. SO THIS IS ONE FIVE YEAR AGE GROUP HISPANIC WOMEN IN ONE CENSUS TRACK. ONE CENSUS TRACK, ONE FIVIER AGE GROUP SO IN THAT FIVE AGE GROUP THERE WERE THREE CASES, THREE BREAST CANCER CASES AN POPULATION SIZE OF 1479. SO THE DIFFERENCE APPROACHES TO BREAKEN THEM DOWN, IN THE CEPACEOUS TRACK THIS IS THE -- AGAIN, WE'RE IN THE USING WHAT THE SEER VARIABLE SAID WITH ANYONE'S ORIGIN, WHERE THE HISPANIC THEY'RE HISPANIC. THIS IS COMING FROM THE CENSUS. SO IN THAT CENSUS TRACK 39% MEXICAN, 29% CENTRAL AMERICAN, 30% OTHER HISPANIC. SO FOR THIS GROUP WHAT WOULD HAPPEN WAS UNDER THE PLURALITY APPROACH, THE LARGEST GROUP HERE IS MEXICAN. SO LET'S CALL THIS MEXICAN CENSUS TRACK IN ALL THREE CASES AND 1479 DENOMINATORS GO THERE. THE MAJORITY WOULD SAY ARE ANY OF THESE 50% OR LARGER AND NO THEY'RE NOT. THEREFORE THIS WHOLE TRACT GOES INTO THE MAJORITY SO ALL THREE CASES IN 1479 CONTROL POPULATION. THEN OVER HERE THE PROPORTION APPROACH APPLIES .39, .29, .3 TO BOTH OF THOSE NUMBERS. SO NOW WE HAVE 1.2 CASES HERE, .008 CASES, AND THEN DENOMINATOR, 581 SO AN AND SO ON, ADDED WITH ALL THE OTHER CASE TRACT FRACTIONAL CASES. POINT BEING THIS ADDS UP UNDER ANY APPROACHES STILL HAS THREE HISPANIC CASES OR THIS FIVE YEAR AGE GROUP IN THIS TRACK HAS THREE CASES AND 1479 POPULATION COUNTS. AND THOSE ARE ALWAYS GOING TOGETHER. AT NO TIME AM MOVING TO DIFFERENT CATEGORIES. THEY'RE ALWAYS -- BASICALLY WHAT WE HAVE DONE HERE IS APPLY THE TRACT CANCER INCIDENCE TO THE POPULATION OVER HERE. OKAY. I'M JUST GOING TO POINT OUT AGAIN BECAUSE THIS IS FEASIBILITY, BECAUSE WE CAME ONE A SUBPOPULATION CATEGORIZATION THAT REQUIRED SEVERAL VARIABLES, THERE ACTUALLY WAS AGAIN THIS MEXICAN POPULATION PUERTO RICAN, SO ON, SO WE COULDN'T APPLY CUT POINTS IN SEER WE HAD TO TAKE THEM OUT AND COPY TO SEE WHICH WAS THE MAJORITY AN APPLY THEM. SO WE DID THIS BY EXPLOITING FROM SEER STAT AND THE STATISTICIANS DID THE ANALYSIS FROM THERE. WE GROUP ACCORDING TO VARIABLES THAT COMPARED THE DIFFERENT GROUPS. AND ESTIMATED THE BREAST CANCER INCIDENCE OUTSIDE OF SEER STAT. SO WE CAME UP WITH FROM THE 15 REGISTRIES FOR THESE NINE YEARS 41,217 CASES IDENTIFIED BY SPANISH VARIABLE AS HISPANIC. 41,009 COULD BE ANALYZED. 207 DID NOT LINK TO A CENSUS TRACK WHICH IS SMALL AGAINST IN TERMS OF OVERALL FEASIBILITY OF THE CENSUS TRACK ANALYSES, THE PROPORTION NOT LINKED IS SMALL. ONE CASE CAME FROM A ZERO POPULATION. CASES CAME FROM 9,991 CENSUS TRACKS. THERE WERE 5,000 TO 165 TRACKS IN THOSE REGISTRIES THAT HAD ZERO HISPANIC CASES DURING THAT TIME PERIOD. THIS IS ANOTHER CAVEAT THAT IF YOU WERE DOING ANALYSIS ON A GEOGRAPHIC LEVEL SAY COUNTY AND YOU WANTED TO DO DESCRIBETIVE ANALYSIS OF COUNTIES MOST HAVE A GOOD IDEA EXACTLY WHAT YOUR COUNTIES SHOULD BE, IF ONE WAS MISSING YOU WOULD NOTICE. WE DIDN'T KNOW WHAT THE N OF CENSUS TRACK WAS SUPPOSED TO BE SO WHEN WE WANTED TO FIGURE OUT QUARTILES APPROXIMATE OTHER THINGS WE TOOK THE CASE SECTION AND STARTED -- THE LINK TO CENSUS TRACK INFORMATION FROM THAT AN DEUCED TO -- REDUCED TO ONE ROW FOR TRACT AND THEN WE DID CHARTS AND TABLES AND ALL THIS WORK. AND REALIZED WHAT ABOUT THE TRACKS THAT DIDN'T HAVE A CASE? WE MISSED THOSE, WE LEFT THEM BEHIND, WE HAD TO REPULL IT SO YOU HAVE TO WORRY WHEN ANALYZING THE CENSUS TRACK LEVEL YOU HAVE TO OR I ARE ABOUT THOSE THAT DON'T HAVE NUMERATORS. YOU CAN'T LEAVE THEM BEHIND. SO JUST FOR INFORMATION THIS IS A DISTRIBUTION THE PROPORTION OF THOSE 1500 SOMETHING CENSUS TRACKS, PROPORTION THAT IS?? HISPANIC. SO THE NEXT GRAPH ARE NOW GOING TO BE AMONG HISPANICS. THERE'S NO MORE NON-HISPANIC POPULATION IN ANY GRAPHS. THIS IS AMONG THAT HISPANIC POPULATION WHAT IS THE PROPORTION THAT'S MEXICAN. SO THIS IS AN INTERESTING SHAPE OF GRAPH AND BASICALLY THERE ARE TONS AND TONS OF CEPACEOUS TRACKS WHERE 70, 80, 90% OF THE TRACK POPULATION SELF-REPORTS AS MEXICAN IN THE CENSUS. ALL THE OTHER GROUPS THIS IS THE PROPORTION OF THE EPISOUSE TRACT THAT BELONGS -- SENS IS TRACT HIS CENSUS TRACK WHO BELONG TO THAT GROUP. IN TERMS OF FEASIBILITY OF USING THIS DATA TO ASSIGN CANCER FOR ALL THESE GROUPS, THIS HERE IS BAD NEWS FOR THAT FEASIBILITY. SO THE NEXT SLIDE, THIS -- ALL HAS A HIGH TAIL OF A LOT OF TRACKS WITH SOW ROW OR CLOSE TO ZERO MEMBERS OF THESE SUBGROUPS. GOING TO GET RID OF THE HIGH TAIL AN EXPAND THE OTHER PART OF THE GRAPH. SO IT WAS -- IT HAD BEEN MY HOPE IN WRITING THIS PROPOSAL EACH WOULD HAVE SOME LITTLE DISTRIBUTION CLUMPS HERE. THERE'S CEPACEOUS TRACKS WITH CUBANS CENSUS TRACKS WITH DOMINICANS. THIS TURNED OUT TO BE IN SEER AREAS NOT PARTICULARLY THE CASE. THERE ARE A FAIR NUMBER OF PUERTO RICANS. MOST OTHERS -- SO THIS IS A MAIN CONCLUSION FROM THIS FEASIBILITY STUDY, SEER -- THE WAY HISPANIC POPULATION IS DISTRIBUTED IN THE U.S. WAS SEER AREAS AREN'T WHOLE CENSUS TRACKS TO SAY A HA, THESE ARE CENSUS TRACKS WITH A LOT OF (INAUDIBLE) IN THEM. SO GOING BACK TO THAT PLURALITY APPROACH THAT WE TALKED ABOUT, WHAT WAS THE POPULATION THAT REPRESENTED THE LARGEST PART MEXICAN WAS OVER 75%, PUERTO RICAN WAS DEACCEPT NUMBER OF TRACKS. CUBAN, DOMINICAN, CENTRAL, SOUTH AMERICAN, PRETTY SMALL MEMBERS OF TRACKS. AND OTHER HISPANIC, QUITE A FEW. SO THIS IS HOW THESE TRACKS GOING WITH THAT PLURALITY, MANY SLIDES ARE BASED ON PLURALITY APPROACH. EACH TRACK IS CALLED MEXICAN OR PUERTO RICAN BASED ON THAT BEING PLURALITY OF HISPANIC POPULATION. CALIFORNIA SIX THOUSAND TRACKS WERE MEMBER CAB, PLURALITY AND THEY ACCOUNT FOR 80% OF MEXICAN TRACK IN THE WHOLE REGISTRIES. FEW IN CALIFORNIA IN FACT WITH ANY OTHER PLURALITY. CONNECTICUT, NEW JERSEY, TURN OUT TO BE REALLY INTERESTING FOR THIS PARTICULAR QUESTION, THEY -- EACH HAS TRACK WITH A NUMBER OF GROUPS AND IN FACT ACCOUNT FOR MANY -- ALMOST -- CONNECT CONNECT AND NEW JERSEY ACCOUNT FOR ALMOST ALL THE TRACK WHERE PUERTO RICAN IS PLURALITY AND THEN NEW JERSEY HAS OTHER. NEW JERSEY HAS A LOT OF OTHER SPECIFIC NAME CATEGORIES APPROXIMATE NEW MEXICO HAS A LARGE AM OF OTHER HISPANIC. SO THIS IS -- THIS GRAPH LOOKS PRETTY HARD TO READ FROM THERE UP FORTUNATELY. THIS IS A -- I HATE TO CALL IT AN INTERMETHOD RELIABILITY BECAUSE I (INAUDIBLE) TERRIBLY RELIABLE BUT IT'S COMPARISON OF TWO THINGS. SO THIS IS, THE PLURALITY APPROACH NAMING THE CENSUS TRACK A A CERTAIN BELONGING TO GROUPS BASED ON WHICH IS THE PLURALITY CENSUS TRACK. THESE COUNTS ARE THE CASES WITHIN THE TRACK. NUMBER OF CASES SELLING TO EACH OF THOSE. THESE BACK TO SEER VARIABLES AND WHAT WAS THE SEER INFORMATION ABOUT HISPANIC ETHNICITY OF THAT CASE. THIS IS JUST SO MEXICAN ROW HAS DISAPPEARED BECAUSE I HAVE A MAP APPARENTLY. THAT IS THE BEST ONE. THERE YOU CAN SEE IT. SO OF THE 33 -- OVER 33,000 CASES WHO RESIDE IN MEXICAN PLURALITY CENSUS TRACK ONLY 9,000 DID THE SEER VARIABLE HAVE THEM IDENTIFY AS MEXICAN. MOST SPANISH AND LATINO NOS. I HAVE TO GO BACK (INAUDIBLE) IN A SECOND. SO IN THESE OTHER GROUPS, SMALL TOLL NUMBER OF PEOPLE, NOT SURPRISINGLY MOST RESIDE IN CENSUS TRACKS WHERE MEXICANS ARE THE MAJORITY HISPANIC GROUP. THEN AGAIN BIRTHPLACE SAME THING. I THINK THIS IS JUST TOO MUCH DETAIL, TO PUT THAT -- SHOULDN'T HAVE PUT THAT SLIDE IN. SO WE DID THAT COMPARISON AND I FEEL LIKE BECAUSE THE SEER SPANISH ORIGIN VARIABLE WOULD ONLY GET SOME SPECIFIC CATEGORY LIKE PER TOERY CONDITION OR CUBAN IF THEY WERE BORN THERE, THAT'S NOT A GOLD STANDARD. AND THE OTHER APPROACH IS IT IS NOT A GOLD STANDARD EITHER. TWO METHODS THAT DON'T AGREE WITH EACH OTHER WELL. SO HERE JUST HOW THE CASES FELL OUT IF BY THREE DIFFERENT APPROACHES THAT WE TALKED ABOUT INTO POPULATIONS. SO ANY ONE OF THOSE APPROACHES IS GOING TO CALL MOST OF THE BREAST CANCER CASES IN SEER MEXICAN AND ANY OTHER INFORMATION THAT WE WOULD HAVE TRUE, THEY REALLY VARY A LOT HOW IDENTIFYING OTHER GROUPS SO THE PLURALITY APPROACH IS TO MORE GENEROUS TO SAY WE HAVE OVER 3,000 PUERTO RICAN CASES, WHEREAS IF WE ONLY IF THE TRACK IS MAJORITY ONLY PUERTO RICAN MAJORITY OF THE TRACT WE WOULD HAVE ABOUT HALF THAT NUMBER. OVER HERE THIS IS SIGNING BASED ON PROP OF POPULATION IN THE TRACK AND I THINK I STILL THINK IT'S THE -- IF THE INTENT WAS SIMPLY TO ESTIMATE THE NUMBER OF CASES OF THESE DIFFERENT GROUPS THIS MIGHT BE OUR BEST ESTIMATE. BUT IN TERMS OF TRYING TO THINK ABOUT WHAT IS THE -- IS THE CANCER INCIDENCE DIFFERENT AMONG THESE GROUPS AN TRYING TO ASSIGN THE TRACT INCIDENCE TO THOSE POPULATIONS, THIS APPROACH MIGHT BE PROBLEMATIC. SO THIS THE BREAST CANADIAN INCIDENCE IN EACH HISPANIC SUBGROUP AND BY THE THREE DIFFERENT APPROACHES. SO THE SOLID BLUE BAR IS THE PLURALITY IDEA, THE NUMERATOR AN DENOMINATOR OF THE TRACT WERE ASSIGNED TO A GROUP, THE WHOLE TRACT BASED ON WHICHEVER GROUP WAS PLURALITY. THE RED IS IF ONLY IF THEY WERE MAJORITY -- THE DARK BLUE BAR IS ONLY MAJORITY SO THIS GETS A BUNCH OF PEOPLE TO THE MAJORITY CATEGORY. THE RED BAR IS BASED ON THE PORTION APPROACH. SO THIS VARIES BY DIFFERENCE APPROACHES. WE SAW THE EARLIER SLIDES THERE WERE VERY FEW CENSUS TRACKS FOR CUBANS CENTRAL AN SOUTH AMERICANS IN PLURALITY OR THE MAJORITY. SO THAT'S THE HALF EMPTY VIEW. THE HALF FULL VIEW, WHATEVER APPROACH WE USE, THE DIFFERENCE BETWEEN MEXICAN BREAST CANCER INCIDENCE AN PUERTO RICAN IS CONSISTENT, HIGHER IN PUERTO RICAN FROM ANY OF THOSE APPROACHES. THE OTHER HISPANIC BREAST CANCER UNDERSTAND DENSE IS PERSISTENT BY THOSE DIFFERENT APPROACHES. MY NEXT SLIDE IS BACK TO ONE OF THE APPROACHES TO MAKE IT NOT TOO BUSY. I'M SHOWING YOU THE CONFIDENCE INTERVALS. THE CONFIDENCE INTERVALS ARE PRETTY -- THE FACE VALUE CONFIDENCE INTERVALS GIVEN THIS APPROACH ARE ACTUALLY TIGHT. LOTS OF LIMITATIONS BUT THIS DOES SUPPORT WHAT THE FINING WAS FROM FLORIDA THAT THERE IS QUITE A DIFFERENCE IN TERMS OF MEXICAN AMERICAN HAVING LOWER BREAST CANCER INCIDENCE COMPARED TO PUERTO RICAN AMERICAN. SO AGAIN, LIMITATIONS OF THE APPROACH, LIMITATIONS, THERE AREN'T THAT MANY TRACKS WITH PUERTO RICANS PLURALITY OR CUBANS, DO CANS ESPECIALLY. ANOTHER CENSUS TRACK APPROACH ENABLES ANALYSIS USING HISPANIC SUBPOPULATION VARIABLE TO DEFINED SAME WAY AS NUMERATOR AND DENOMINATOR SO WHATEVER ERRORS IN THE NUMERATOR IS THE SAME ERROR IN DENOMINATOR. ANOTHER STRENGTH IS DIFFERENCE THES BREAST CANCER INCIDENCE BETWEEN MEXICAN AND PUERTO RICAN WOMEN IN THE UNITED STATES WERE EVIDENCED FROM ANY OF THOSE APPROACHES APPROXIMATE I THINK OTHER THAN DATA FROM FLORIDA, I DONE THINK ANY OTHER DATA WOULD INDICATE THAT. SO AS A REMINDER ALSO, NONE OF THIS ANALYSIS ADDRESSES THE UNDERLYING POTENTIAL MISCLASSIFICATION OF HISPANIC CASES OF ANY CANCER OF NON-HISPANIC WHICH IS A FAIRLY PREVALENT CONCERN. WHAT I DON'T ACTUALLY KNOW IS THAT GIVEN HISPANIC POPULATION GREW BETWEEN 20 AND 2010 FASTER THAN THE NON-HISPANIC POPULATION, CAREFULLY ESTIMATED DENOMINATOR STILL MIGHT HAVE BEEN GOING OFF TRACK IN THE LATER YEARS. I DIDN'T REMAKE ALL THE SLIDES BUT I DID ANALYSIS GOING THROUGH 2005 BECAUSE I WAS WORRIED ABOUT EXTRAPOLATION AS WE GOT CLOSER TO 2010. IT DIDN'T COME OUT DIFFERENT THE. BUT THAT'S JUST SOMETHING I WANTED TO ACKNOWLEDGE. SO I STILL THINK THAT -- SO AS MUCH AS I'M EMPHASIZING LIMITATIONS A LOT, WE ENDED UP HAVING SOME DELAYS RELATED TO GETTING THE DATA SET AND THINGS LIKE THAT, SO WE DIDN'T GO BEYOND THE ORIGINAL SCOPE OF AIMS IN THE ANALYSIS. I THINK THAT ONE COULD ESPECIALLY FOR AGAIN MEXICAN AND PUERTO RICAN APPLY THIS ECOLOGICAL CLASSIFICATION OF SUBGROUP ONLY TO UNKNOWN PEOPLE BUT WE DIDN'T TAKE PEOPLE WHO HAD A MEAN ETHNICITY AND LEAVE THEM ALONE AND APPLY THE HE ECOLOGICAL TO UNKNOWNS BUT POTENTIALLY ONE COULD CAN THAT AND VARIES BY THE DIFFERENT REGISTRIES AN DISTRIBUTION OF POPULATIONS WHAT INFORMATION WE MIGHT GET FROM THAT. ACKNOWLEDGING NAN STROUP AND KIM (INAUDIBLE) AT THE CANCER REGISTRY, LISA PAPPAS AND (INAUDIBLE) AT THE CANCER INSTITUTE AN N FOLK WHOSE INITIATED THIS WAS DAVE (INAUDIBLE) AND KATHY CRONIN AND (INAUDIBLE) DENOMINATORS. [APPLAUSE] (OFF MIC) >> DID YOU TAKE INTO ACCOUNT CEPACEOUS TRACK CERTAINTY BECAUSE ANY CENSUS TRACK WHERE CERTAINTY WAS LESS THAN STREET LEVEL ADDRESSED CODING YOU MAY HAVE MISPLACED THE INDIVIDUAL IN THE WRONG CENSUS TRACK AND THAT WOULD HAVE BEEN INCONSISTENT WITH YOUR PORTIONS OF THE HISPANIC POPULATIONS. Q. I SURE DID NOT DO THAT. NO. WE WERE VERY MUCH AT FACE VALUE OF THOSE -- THE DATA SET THAT WAS CREATED (INAUDIBLE). >> I THOUGHT IT INTERESTING TO SORT THE SUB CATEGORY AND HISPANIC AND REALLY THOUGHTFUL SO THANK YOU FOR THAT. VERY ENLIGHTNING. >> YOU GUYS (INAUDIBLE) IN KENTUCKY. [LAUGHTER] (OFF MIC) >> I THOUGHT IT WAS A PRIVACY ISSUE WHERE LOUISIANA -- THAT WAS ALASKA. >> THE LAST SESSION OF THE DAY IS RESULTS FROM LINKAGE STUDY, LINKING BIRTH CERTIFICATE INFORMATION. THIS IS GOING TO BE TWO PRESENTATIONS ONE BY NAN AND ONE BY DEE. DEE IS UP FIRST. >> CAN YOU HEAR ME? I KNOW IT'S 4:15, 4:20. ROSE MARY IS FALLING ASLEEP OVER THERE, I WAS TOO. SO IT'S LATE IN THE DAY SO WE'LL SEE WHAT HAPPENS HERE. THIS IS A SEER SPECIAL STUDY THAT WAS ACTUALLY DEVELOPED BY THE GROUP IN UTAH. SO I WANT TO THANK NAN AND KEN SMITH. KEN I WORKED WITH WHEN IN UTAH HE WAS HEAD OF SURVEY RESEARCH CENTER THERE AFTER I LEFT AND HE'S DEMOGRAPHY AND OTHER THINGS AN NAN WORKED IN REGISTRY IN THE BAY AREA WERE SHE WENT TO UTAH SO THESE ARE COLLEAGUES THAT WE WORKED WITH OVER TIME. BUT THIS WHOLE IDEA PRESENTING THE METHODS WAS THOUGHT UP AND DEVELOPED BY UTAH PARTICULARLY NAN. SO THE IDEA WAS THIS CAME FROM THE SEER SPECIAL STUDY THEY ASKED CRAB RAYTORS AND WE -- COLLABORATORS SO WE WANTED TO APPLY THE UTAH METHOD IN CALIFORNIA TO SEE IF WE CAN DO THE SAME THING AS THEY WERE DOING. SO I'M PRESENTING METHODS, WE HAVEN'T FINISHED ANALYSIS YET BECAUSE WE'RE DOING DATA COLLECTION. BUT OUTOUTWILL PRESENT IN A FEW MINUTES, NAN THE ACTUAL RESULTS. SO THE IDEA WAS CAN WE IDENTIFY CASES AND LOOK AT BIRTH RECORDS AND IDENTIFY SOCIAL CLASSES, DIFFERENT TIME WHEN DIAGNOSED? WHAT WE HAVE IN THE REGISTRY GENERALLY IS WHERE THEY LIVED AT TIME OF DIAGNOSIS. THIS MAY HAVE CHANGED OVER TIME, THERE'S ALSO LITERATURE TO SUGGESTION EARLY EXPOSURE IN THE ENVIRONMENT OR SOCIAL CULTURAL PATTERNS SO ON MAY HAVE AN EFFECT ON DISEASE IN LATER LIFE. THE IDEA COULD WE IDENTIFY A SOCIAL CLASS CATEGORY AT TIME OF BIRTH FOR THESE PATIENTS. UTAH AN NAN WILL TALK ABOUT THIS, THEY WERE PUTTING TOGETHER A COHORT OF BABY BOOMERS, GOING WAY BACK IN TIME TO IDENTIFY THESE BIRTHS AND LINK OVER TIME TO SEE WHICH DEAL WITH KAREN IN A COHORT. WE WERE GOING TO DO THAT BUT DIDN'T HAVE ENOUGH MONEY SO WE'RE DOING A CASE CONTROL STUDY I'LL TALK ABOUT IN A MOMENT. SO THE GOAL OF THE STUDY, FIRST WAS TO THE SEE IS IT FEASIBLE TO USE THE SAME METHOD THEY USED IN OUR POPULATION IN UTAH IN CALIFORNIA. SECOND WAS A CASE CONTROL STUDY SO WE WANTED TO TAKE CASES AND DO A RAN TESTIMONY SAMPLE THAT MATCHED TO THESE CASES OF PEOPLE WHO DIDN'T HAVE CANCER BIRTH RECORDS TO COMPARE IN TERMS OF OUTCOME. WE WERE LIMITED IN CALIFORNIA BECAUSE ELECTRONIC DATA WAS (INAUDIBLE) IN 1998 SO WE DIP GO BACK TO 1960 WHENEVER IT WAS UTAH WEAPON BACK BUT WE WENT BACK TO 1998 THROUGH 2000 AND -- THROUGH 2008. SO WE HAVE 12 YEARS OF DATA. SO THE OBJECTIVE THE UTAH CANCER REGISTRY WILL TELL HOW THEY DID IT. AND THERE'S SECRETS OF LINKAGE. THEN WE WOULD SEE IF WE CAN APPLY THOSE IN A WAY TO COMPARE THEM, HAVE PERCENTAGES OF LINKAGES TO SEE IF WE OOH EAR DOING A GOOD JOB OR WORSE WHATEVER THEY WERE DOING. TOGETHER WE PUT TOGETHER A GUIDELINES FOR THE RE WHO MAY WANT TO DO THIS FUTURE DO THESE LINKAGES, THE FINAL THING WAS THAT WE'RE GOING TO ASSESS HOW MUCH WORK THIS TOOK AN TIME IT TOOK TO PUT THIS TOGETHER. AND SEE A FAIR AM OF WORK. THE GOAL WAS TO TAKE THAT DATA FROM OUR REGISTRY AND IN CALIFORNIA, THIS IS ALL OF CALIFORNIA AND WE WANTED TO MATCH INDIVIDUAL DATA FROM THE BIRTH CERTIFICATES. WE THEN ASKED TO MAKE THE SES AT BIRTH, THE PARENT OCCUPATION OR CENSUS TRACK WHERE THEY LIVED AT BIT, THAT WOULD BE THE SOCIAL CLASS ASSIGNED TO THE -- THESE ARE JUVENILE CASES BECAUSE THEY GO BACK TO 1998. SO THESE ARE CASES THAT 0 TO ABOUT AGE 12. WE THEN CREATE ANALYTIC FILE FROM THE BIRTH RECORDS AND EVENTUAL REGISTRY FILES AN CONDUCT AMA'AMSIS OF CASE -- ANALYSIS CASE CONTROLS COMPARISON GROUP BASED ON SOCIAL CLASS AT BIRTH. WE ALSO COMPARE TO SOCIAL CLASS AT TIME OF DIAGNOSIS TO SEE IF THERE'S CORRELATION THERE AS WELL. SO GOAL 2 WAS TO DO THIS STUDY TO TEST THE HYPOTHESIS, SOCIAL CLASS AT BIRTH HAD SOME KIND OF RELATIONSHIP TO CANCER, JUVENILE CAPE CASES. BASICALLY THREE CONTROLS FOR EACH OF THE CASES, SO FAIR ENOUGH POWER TO DO THESE STUDIES. WE MATCHED ON GENDER RACE AND ETHNICITY AND MONTH ANDIER OF BIRTH. NOW, UTAH, THEY HAD FEWER BIRTHS THAN IN CALIFORNIA. DURING 1988 TO 2009 THERE WERE OVER 6,000 BIRTH, # MILLION IN CALIFORNIA, THAT'S ABOUT HALF A MILLION A YEAR. THEN WE HAD 7,195 CASES WHICH IS ABOUT 600 CASES FOR EACH YEAR. SO THIS WAS LINKED ELECTRONICALLY BUT THERE'S A FAIR AMOUNT OF MANUAL REVIEW OF RESULTS AND THEN YOU HAD TO MERGE THE ANALYSIS TO MERGE -- FOR WHAT WE WERE DOING SO WE STARTED WITH THE CASES IN THE REGISTRY, WE THEN LINKED -- FILE OF 6,049 BIRTHS DURING THAT TIME TO TRY TO IDENTIFY BIRTH CERTIFICATES OF THESE PARTICULAR CASES SLINGED FORD THE STUDY. SO YOU CAN SEE WE BOUGHT VARIABLES ON THE NAMES. WE USE THE SYSTEM FOR MATCHING NAMES. WE WANTED TO MATCH ON NAME, DATE OF BIRTH AND SO ON. SO THINGS WE USE TO MATCH TO HAVE SEVERAL PEOPLE THAT MATCH, WE COULD CHOUGHS THE RIGHT ONE. SO THE ITEMS WE HAD TO DO MANUAL REVIEW FOR FOR WAS FATHER'S LAST NAME, BIRTH CERTIFICATE, THE FATHER'S FIRST NAME, THE MOTHER'S MAIDEN NAME AND THEN WE SOMETIMES USE PLACE OF BIRTH FROM CANCER REGISTRY DATA TO FINE THESE LINKS SO IF A TRUE MATCH WAS NOT DETERMINED, THERE'S A FAIR NUMBER WE COUP DETERMINE, WE DID A HAND REVIEW SO WE -- THE LINK FILE AND COLLECT -- LINK TO GET ADDITIONAL DATA FROM REGISTRY TO SEE OTHER THINGS IN THE REGISTRY DATA TO HELP US MAKE THIS. WE THEN MATCHED THE FILES, DIFFERENT RECORDS AND FINALLY PUT THESE TWO TOGETHER SO WE PUT TOGETHER THE INFORMATION AND REGISTRY INFORMATION FOR THESE PEOPLE LINKED. SO AFTER WE LINK WE HAD TO REVIEW ONCE WE GOT THEM TOGETHER THEY WERE MATCHES THIS IS A -- IF WE ASSUME THERE WAS NOT A MATCH WE LOOKED TO SEE IF THEY HAD DIED, IF THEY HAD DIED WE OBVIOUSLY WOULD HAVE MORE INFORMATION TO MAKE A LINK AS WELL. IF THEY WEREN'T IN THE RECORD WE DO THINGS LIKE NAMES OCCUPATION, INDUSTRY AND ALL KIND OF INFORMATION THAT WE CAN FIND. WE FOUND A FAIR AMOUNT OF INFORMATION IN THE DATA FIELDS, TEXT. TO INDICATE FATHER OR MOTHER'S NAME. BECAUSE THERE'S NO PLACE TO COAT THAT THE PERSON WHETHER HAS THE CANCER. REGISTRIES PULL THIS SO WE CAN P PULL IT OUT OF THE (INAUDIBLE) IN THE DATA TO HELP US MAKE THESE LINKAGES. IT WAS INDICATED THEY WERE NOT LINKS. SO WE PUT THEM TOGETHER, O THIS IS THE RESULT OF THAT. YOU CAN SEE THERE WERE 7,195 CASES WE IDENTIFIED IN THE REGISTRY. WE WERE ABLE TO MATCH ABOUT 87% OF THOSE. SOME THAT DIDN'T MATCH WE HAD TO DO BY HAND, THAT'S 1161, YOU SEE MORE THAN HALF DIDN'T LINK THROUGH THE MANUAL LINK BUT QUITE A BIT SO MANUAL LIPPING WAS VERY IMPORTANT FOR US TO DO THAT DID SHOW UP IN THE ELECTRONIC MATCH. SO HERE ARE CHARACTERISTIC'S OF THE PEDIATRIC CASES. 55% WERE MALE, THEN GOING BACK TO (INAUDIBLE) THAT KAREN TALKED ABOUT EARLIER, THESE ARE PEDIATRIC CASES, THE CASES WERE DIAGNOSED IN 198 TO 2009. 53% WERE HISPANIC. WE LOOKED AT THE POPULATION OF THE WHOLE BIRTH FILE, IT'S ABOUT THE SAME NUMBER SO THEY ESTIMATED ABOUT 38% OF THE CALIFORNIA POPULATION IS HISPANIC AND IN A FEW YEARS IT WILL BE 51% OR MORE BECAUSE MORE WERE BORN THAN ANY OTHER GROUP IN CALIFORNIA DURING THESE YEARS. SO BUT FAIR DIVERSIFY OF DIFFERENT POPULATIONS TO DO THESE LINKAGES. THERE WERE ISSUES IN DOING LINKAGE WE FOUND SOME OF THE BIRTH RECORDS, SOME OF THE VARIABLES THAT SHIFTED, SOME DIDN'T LINK AND WEED THAT TO DO CODING AND MOVE THE VARIABLES TO DIFFERENT CATEGORIES. SOME REVERSED BETWEEN OCCUPATION, INDUSTRY, SO FAIR AMOUNT OF DATA CLEANING, WE COULD DO A LOT OF THESE WITH WITH (INAUDIBLE). WE DIDN'T HAVE TO DO THEM ALL BY HAND. SO (INAUDIBLE) TO HELP A LOT OF LINKAGES. SO THIS IS WHAT WE ENDED UP WITH IN TERMS OF THE STATISTICS FOR THE LINKAGE OCCUPATION AN INDUSTRY CODES FOR THE CASES. YOU'LL SEE OCCUPATION FOR THE MOTHER ABOUT 90% OF THOSE ABLE TO DO IT. 93% WERE INDUSTRY AND THOSE THAT HAD BOTH WHICH IS A COMBINATION IS ABOUT 85%. THE LINKAGE IS NOT QUITE AS GOOD FOR FATHERS AND I THINK THAT'S PROBABLY BECAUSE THE LINKAGE OF THE OCCUPATIONS GROUP, MOTHER WAS HOUSEWIFE OR SOMETHING LIKE THAT IN THIS DATA. THIS IS ABOUT WHAT UTAH (INAUDIBLE) TALK ABOUT THAT. (INAUDIBLE) FOR CONTROLS, THIS IS A 3 TO 1 MATCH INSTEAD OF 7,000, WE NOW HAVE 16,000 AND THE LINKAGE PERCENTAGE ARE ALMOST IDENTICAL BETWEEN THE CONTROLS AND CASES SO WE (INAUDIBLE) ABOUT THAT. HOW DO YOU CLASSIFY OCCUPATION AND INDUSTRY? THERE'S A PROGRAM PUT OUT BY CDC, I GUESS A SOY PROGRAM, I DON'T KNOW WHAT IT DOES BUT NAN CAN TELL YOU. YOU PUT IN THE DATA, AND IT ACTUALLY CODES THE DATA IN DIFFERENT CATEGORIES OF SOCIAL CLASS. AGAIN, A LOT OPHTHETI DIDN'T MATCH, THIS IS THE SECOND LINKAGE, A LOT COULDN'T CATEGORIZE SO WE HAD TO DO THE HAND MATCHING BECAUSE THERE WERE MISSPELLINGS IN THE OCCUPATIONS, THINGS THAT WE COULD CLEAN UP TO MAKE THE MATCH BETTER. UTAH GROUP WAS ALSO HELPFUL BUZZ THEY HAVE DONE A LOT OF THIS SO THEY SAY MAYBE CHANGE THIS CATEGORY, TO LOOK LIKE THIS IN THE LINK. THAT HELPED OUT SO THERE WERE A FAIR NUMBER WEED THAT TOUCHING UP AS WELL. SO THIS ANALYSIS, COMPARING THE INDIVIDUAL LEVEL (INDISCERNIBLE) WITH THE DIVISIONAL COUNTY AND CEPACEOUS TRACK LEVEL MEASURES. THEN REGISTRYS WE DO CENSUS TRACKS WITH SOCIAL CLASS ESTIMATES, HERE WE'LL HAVE INFORMATION FROM THE FATHER'S OCCUPATION AND MOTHER'S OCCUPATION AN INDUSTRY TO DO AN INDIVIDUAL BUT WE ALSO HAVE CENSUS TRACK SO WE CAN LOOK AT A SOCIAL CLASS BASED ON CENSUS TRACK AND SEE HOW WELL THOSE COMPARE AS WELL. THEY WILL CONDUCT CASE CONTROL ANALYSIS, WE CAN HARDLY WAIT. BECAUSE SIMILAR RESULTS ARE NOT GOING TO KILL YOU BUT THERE ARE LESSONS LEARNED WE FOUND LINKING WITH THE BIRTH CERTIFICATE PROVIDES INFORMATION FOR THE CANCER REGISTRY. FOR EXAMPLE IT HAS RACE AND ETHNICITY ON BIRTH CERTIFICATE, TO THE EXTENT IT'S IN THE ON THERE YOU MIGHT BE ABLE TO ADD THAT TO YOUR REGISTRY. WHAT ELSE -- THERE WERE A FEW THINGS THAT ACTUALLY YOU CAN PULL FORWARD AND INCREASE THE RELIABILITY IN SOME YOUR CANCER REGISTRIES. SO ANY QUESTIONS? WE CAN WAIT UNTIL NAN'S TALK AND TALK ABOUT IT. WE CAN SHOW YOU WHAT THIS RESULTS IN OVER TIME. WHY DON'T WE DO THAT AND THEN ANSWER QUESTIONS. >> THANK YOU SO MUCH, DEE. HE SHOWED YOU METHODOLOGY THAT WENT INTO THE LINKING ALGORITHM. I'M ACTUALLY GOING TO TALK ABOUT THE ANALYSES THAT WE ACTUAL HI RAN AND SOME APPROACH AND SHOW YOU SOME OF THE RESULTS. WE BASICALLY WERE INTERESTED IN THIS FUNDAMENTAL QUESTION WHETHER OR NOT EARLY LIFE SOCIO ECONOMIC STATUS WAS ASSOCIATED WITH CANCER RISK, THERE HAS BEEN LITERATURE ALREADY IN THIS FIELD. BUT I HAVE A CONFESSION TO MAKE. THAT I CHEATED. Z YOU KNOW THE UTAH POPULATION DATABASE ALREADY LINKS A LARGE NUMBER OF VITAL RECORD WITH CANCER REGISTRY DATA TO DO GENETIC STUDIES, I PRESENTED A FEW YEARS AGO ON THAT RESOURCE. SO A LOT OF DATA LINKAGE WE HAD TO GO THROUGH WE HAD BEEN THROW HA THAT PROCESS. THE IDEA WAS REALLY SPURRED BY DR. SMITH, KEN SMITH, QUESTION WHETHER OR NOT THIS KIND OF RESOURCE COULD REALLY BE IMPLEMENTED IN OTHER REGISTRIES BECAUSE IT'S TRULY A GOLD MINE. IN OUTCUT WE HAVE GOT BIRTH RECORDS LINKED BACK SURVEILLANCE IN 1966 SO WE HAD HISTORICAL COHORT THAT WE COULD WORK WITH TO EVALUATE EARLY LIFE AND IMPACT ON CANCER RISK FACTOR. ABOUT THEY ALSO ALREADY HAVE INDUSTRY FROM A NUMBER INCLUDING BIRTH CERTIFICATE DATA. SO OUR MAJOR OBJECTIVE WAS TO ESTABLISH THIS COHORT AND ACTUALLY PICK OUT THE BIRTH RECORDS LINKED TO THE CANCER REGISTRY DATABASE IN UTAH. ESTIMATE SES AT BIRTH AS WELL AS SES AT DIAGNOSIS, TO DESCRIBE THE RELATIONSHIP AT VICTIM LEVEL SES AT BIRTH AND AT CURRENT DIAGNOSIS WHICH A LOT OF YOU KNOW IS THE ONLY MEASURE THAT WE HAVE FOR SES. TO TEST THE GENERAL HIGH PRESIDENTSIS OF CANCEROUS INCOME ADULT HOOD. SOME OF YOU MAY OR MAY IN THE KNOW THIS PROJECT IS NEAR AND DEAR TO MY HEART BECAUSE I HAVE MY BACHELOR'S IN HUMAN DEVELOPMENT AND MASTERS IN FAMILY ECOLOGY SO EVALUATING PARENTAL SESND HOW IT IMPACTS FUTURE HEALTH OF THEIR OFFSPRING IS SOMETHING I'M COMING HOME NOW WITH THIS ANALYSIS. SO HAPPY TO GET (INAUDIBLE). SO WE ALL ARE WELL AWARE THERE IS AN S EBBS GRADIANT RELATED TO CANCER AND THERE'S A NUMBER OF THEORETICAL MODELS THAT REALLY CAN HELP GUIDE AND EVALUATING MECHANISMS THAT PROMOTE OR DETER HEALTH THROUGHOUT THE LIFE COURSE. AND SOME OF THE RESULTS ACTUALLY WILL -- YOU'LL FIND LEND SOME SUPPORT -- IM, LEND SUPPORT TO SOME OF THE PATHWAYS THAT CONTRIBUTE TO LATER KAREN RISK IN ADULTHOOD. IN THIS MODEL HERE THIS IS JUST TO GIVE YOU A LITTLE BIT OF A FRAMEWORK OF HUMAN DEVELOPMENT AND P INTERSECTION WITH LIFE COURSE SERIES AN CONCENTRIC CIRCLES ARE MEANT TO CONVEY THE NOTION THAT AS A PERSON GROWS THROUGH THE LIFE SPAN AND AGES LIFE SPAN THERE ARE CERTAIN LEVELS OF SOCIAL ECONOMIC AND POLITICAL INFLUENCES THAT REALLY IMPACT HOW THEY MANAGE THEIR STRESS IN LIFE AND THEIR BEHAVIOR. IN OUR STUDY WE BEGIN -- YOU WOULD THINK WITH UTAH POPULATION DATABASE WE WOULD HAVE MORE GENETIC INFORMATION FOR THIS ANALYSIS WHICH I REALLY CAN'T WAIT TO GET MY HAND ON, WE HAD A DELAY IN GETTING APPROVAL FROM MANAGING GROUP THAT OVERSEES THE USE OF FAMILY HISTORY DATA IN THE UPD SO WE DO HAVE FAMILY HISTORY INFORMATION AND WE CAN -- WE'RE GOING TO DO SOME ANALYSES BASED ON THIS INFORMATION. BUT WHAT I'LL SHOW YOU TODAY WE'RE STARTING AROUND THE FAMILY SPHERE OF CHILD ENVIRONMENT. AND OPERATIONALIZING AS PARENT INDUSTRY AN OCCUPATION AT BIRTH MEASURED BY MAN POWER SCORE WHICH USES INDUSTRY RANDOM AGO CODE CODED THROUGH THE CENSUS ALGORITHMS. AND THEN WE MOVE OUT FROM THERE AND ACTUALLY THROUGH THE HELP OF KEVIN HENRY AND GRADUATE STUDENT IN THE DEPARTMENT OF GEOGRAPHY, WE CAN GEOCODE A LARGE MAJORITY, 85% OF THE BIRTH RECORD TO THEIR PLACE OF BIRTH AT CEPACEOUS TRACK LEVEL AND ABLE TO PLACE COORDINATES FOR THEM SO WE WERE ABLE TO AS CERTAIN THE 1960 CENSUS TRACK INCOME VALUES FOR THESE CHILDREN BORN IN THAT TIME. AND THEY CAME THROUGH FOR US AND THE REASON WHY WE DECODEED TO THE 1960 CENSUS IS BECAUSE PRIOR TO THIS CENSUS TRACK DIDN'T EXIST IN UTAH. AND THEY DIDN'T BEGIN GEOCODING OR CREATING CENSUS TRACKS UNTIL THE 1960 CENSUS. IT WAS FOR A LIMITED NUMBER OF COUNTIES, IT WAS ONLY FOR SALT LAKE AND WEAVER COUNTY, THE MOST POPULOUS AREAS IN UTAH AT THE TIME. FINALLY WE ARE MOVING OUT TO LATER LIFE EXPERIENCES HERE, THE NEXT OUTER RANGE. WE LOOKED AT 1970 THROUGH 2010 CENSUS TRACK TIGHT KNOWSIS SES BASED ON CANCER SURVEILLANCE CENTERS. SO WHAT DID THE SAMPLE LOOK LIKE? WE TOOK BABY BOOMERS BORN FROM 1945 TO 1968, JUST UNDER 594,000 BIRTHS IN UTAH AT THE TIME STATEWIDE. WE RESTRICTED ANALYSIS TO CHILDREN OF AGE 18 AND LIVED IN UTAH AND KNOWN TO BE RESIDENTS IN UTAH AT THAT TIME. THIS RESTRICTION HERE ENSURED THEY HAD ENOUGH ABOUT THE AREA BEFORE THEN. AND BASED ON OUR LIMITATIONS WITH CEPACEOUS TRACK INFORMATION FOR THE 1960 CENSUS, WE HAD TO THEN LIMIT OUR SAMPLE AGAIN IN TWO WAYS. FIRST OF ALL, WE HAD TO REMOVE EVERYBODY -- EVERY OTHER BIRTH RECORD OUTSIDE SALT LAKE AND WEAVER COUNTY BUT WE ALSO NOTICED THAT IN THE 1968, 1969 BIRTHDAY THERE WERE NO INDUSTRY OCCUPATION CODE IN THE BIRTH CERTIFICATE, WE DON'T KNOW WHY THE DEPARTMENT OF HEALTH DIDN'T HAVE IT. I THINK IT'S BETWEEN GOING FROM INDUSTRY AND OCCUPATION AND COLLECTING EDUCATION. I THINK THERE WERE A COUPLE OF YEARS IN THERE HISTORICALLY THAT IT JUST DIDN'T GET INTO THE RECORD. SO WE HAD TO RESTRICT IT TO 1945 TO 1959 WHERE IT HAD MORE THAN ADEQUATE COVERAGE OF INDUSTRY AND OCCUPATION CODING AVAILABLE ABOUT 98% BUT IT'S STILL REPRESENTED ABOUT A LITTLE BIT MORE THAN HALF OF THE TOTAL COHORT. SO HERE IS WHERE WE LIMITED IT TO SALT LAKE AND WEAVER COUNTY. OUR FINAL SAMPLE, CALIFORNIA THE REST OF THE SEER REGISTRY SO WE HAD TO LIMIT IT TO DIDN'T HAVE ENOUGH POWER TO INCLUDE ANY OTHER RACE OR ETHNICITY IN OUR ANALYSIS THOUGH THERE WERE A FEW. SO AFTER CATEGORIZING MAN POWERED SCORE WHICH IS INDUSTRY AND OCCUPATION OF PARENTS ON THE BIRTH CERTIFICATE, WE THEN DIVIDED UP SES INTO THESE QUARTILES SO WE KIND OF AIDED A LOT INTERPRETATION OF THE DATA. THESE ARE IN 1,960-DOLLARS BY THE WAY. WHEN WE EVALUATED THE CORRELATION BETWEEN -- CORRELATION BETWEEN SES AT BIRTH AND SES BASED ON TWO MEASURES AND THE AREA BASED MEASURE AS WELL AS CORRELATIONS WITH SES AT THE TIME OF DIAGNOSIS, WE FOUND THAT THE CORRELATIONS ALTHOUGH THEY WERE SIGNIFICANT WERE STILL PRETTY LOW. I THINK THIS ANAL SITS HITS THE POINT THEY'RE ACTUAL HI MEASURING VERY DIFFERENT CONSTRUCTS. THEY COULDN'T IMPACTING HEALTH AND HEALTH BEHAVIOR IN MANY DIFFERENT WAYS. SO IT'S IMPORTANT TO KNOW THAT NOT ALL SES MEASURES ARE CREATED EQUAL. WE LOOKED AT THE DISTRIBUTION OF SES BY THE DIFFERENT -- THE DISTRIBUTION OF THE COHORT AS WELL AS THE CASES. SITE SES QUARTILE, AND WERE VERY COMFORTED TO KNOW THAT THE DISTRIBUTION OF THE CASES REALLY RESEMBLE THOSE OF THE COHORT. SO OUR CASES REALLY ARE COMING OUT OF THE POPULATION THAT (INAUDIBLE) FUNCTION GOING ON. WHEN WE COMPARE BIRTH CERTIFICATE SES TO CENSUS TRACK SES AT THE TIME OF DIAGNOSIS, WE SEE A VERY DIFFERENT PATTERN. AND THIS I THINK IS ONE OF THE FUNDAMENTAL THINGS I LEARNED DOING THIS STUDY INTERPRETING ANY FACTORS THAT INFLUENCE CANCER INCIDENCE BECAUSE THE CANCER -- THE SES AT THE TIME OF CANCER DIAGNOSIS REALLY IS REPRESENTATIVE OF PEOPLE WHO AT THE TIME THEY'RE DIAGNOSE REALLY HIGHER LEVEL SES. BUT ACCORDING TO OUR COHORT THE MOST OF THE CASES ACTUALLY COME FROM LOW SES FAMILIES WHEN THEY WERE BORN. SO THERE ARE A LOT OF THIS HERE IS PROBABLY MORE REFLECTION OF SES MOBILITY AS THEY -- AS CHILDREN ARE AGING AND THEN ALSO THEY HAVE MORE ACCESS TO OTHER CANCER SCREENING AND THINGS LIKE THAT. THIS IS AN IMPORTANT DIFFERENCE THAT WE FOUND. WHEN WE WANTED TO EVALUATE THE COHORT, WE LOOK AT SPECIFIC SITES FOR THE RISK OF CANCER, WE LOOKED AT ALL CANCERS COMBINED, FEMALE BREAST CANCER, CERVICAL CANCER, PROSTATE LUNG MELANOMA CANCER. PANCREATIC AND LUNG CANCER WERE ADDED BECAUSE THAW ARE NOT INFLUENCED BY SCREENING. SO E WANTED TO SEE HOW SES MIGHT PLAY A ROLE IN THOSE KINDS OF CANCERS. WE WERE INTERESTED IN HOW INDIVIDUAL SES AS DEFINED BY THE MAN POWER SCORE AND CENSUS TRACK LEVEL SES AT BIRTH PLAYED OUT IN THE (INAUDIBLE). WE SEPARATED CUMULATIVE HAZARD FUNCTION GRAPH AND CONDUCTED MULTI-VARIANT PROPORTION HAZARD MODELS AND WE USED THE TIME FROM AGE 18 FORWARD BECAUSE WE HAD THAT REQUIREMENT AS YOU RECALL, THEY HAD TO HAVE BEEN ALIVE AT AGE 18 AND LIVED IN UTAH SO WE STARTED OUR FOLLOW-UP AT THAT TIME. THE AVERAGE FOLLOW-UP FOR SAMPLES THROUGH END OF DECEMBER 31st, 2009 WAS ABOUT 30 YEARS. THERE'S A LOT OF ASSUMPTION, IT ASSUMES THAT EVERYBODY IS IN UTAH AND WE MIGHT BE MISS SOME CASES, WE MIGHT HAVE (INAUDIBLE) YOU'LL SEE FROM THE GRAPHS THAT I REALLY DON'T CARE. SO HERE IS CUMULATIVE INCIDENCE GRAPH FOR FEMALE BREAST CANCER. AND WHAT YOU'RE SEEING IS A VERY CLEAR BEGINNING SEPARATION BETWEEN THE HIGH SES GROUP AND THE LOWER SES GROUP FOR THESE WOMEN. I ADDED IN THIS REMINDER THAT MAMMOGRAPHY SCREENING USUALLY OCCURS AROUND P THESE AGES HERE. WE SEE THAT BEFORE THE AGE OF ABOUT 50 THERE IS NO DIFFERENCE IN BREAST CANCER RISK BY SES AND THAT'S EXPLAINED BY GENETIC FACTORS. THEN WE SEE THE LATER DIFFERENCES. I'M GOING TO QUICKLY THROUGH THE REST OF THESE SO I DON'T (INAUDIBLE). HERE ARE DIFFERENCES HERE FOR CERVICAL CANCER AND UNLICK BREAST KAREN, THIS SHOULDN'T SURPRISE ANYONE IN THE ROOM, UP LIKE BREAST CANCER WOMEN WHO ARE BORN TO LOW SES FAMILIES HAVE A SIGNIFICANTLY HIGHER RISK OF CERVICAL CANCER THAN WOMEN BORN IN HIGHER SES FAMILIES. I REALLY LIKE THIS LITTLE PICK RIGHT HERE BECAUSE YOU CAN TELL WHEN CANCER SURVEILLANCE STARTED IN 1966, ABOUT WHEN THIS COHOT STARTED, BUT THIS IS NOTHING RIGHT BEFORE 1966. HERE WE SEE SOME SES GRADIANT FOR PROSTATE CANCER SCREENING, FOR MEN. THEN WE SEE FROM MELANOMA THE HIGH SES GROUP INCIDENCE RISING SOONER AN QUICKER THAN THE REST OF THE COHORT. KEN SMITH ASKED ME IS THIS SCREENING EVENT, I WAS LIKE NO. HIGHER SES FAMILIES HAVE MORE OPPORTUNITIES FOR RECREATIONAL ACTIVITIES GOING ON VACATION IN THE BAHAMAS. SO EXPOSURE, INTENSE EXPOSURE TO UV HAPPENS EARLY ON IN THEIR LIFE. THE MULTI-VARIANT ANALYSIS REALLY HELPS SUPPORT A LOT OF THESE CUMULATIVE INCIDENCE FINDINGS PRELIMINARY FINDINGS. HIGHER RISK FOR CERVICAL CANCER AMONG THE LOWER SES GROUP, LOW ORIS OF MELANOMA FOR THE LOWER GROUP SO PRETTY CONSISTENT. WHEN WE LOOKED AT AREA-BASED SES AS A POSSIBLE INDICATOR FOR CANCER RISK, WHEN WE LOOK AT ALL CANCERS TOGETHER THAT'S NOTHING GOING ON. KEVIN ACTUALLY THINKS THAT THIS REALLY IS A MATTER OF THE FACT THAT UTAH REALLY HAS MORE INTEGRATED COMMUNITY, NOT A LOT OF SOCIAL ISOLATION IN UTAH. THEY HAD HIGH SOCIAL CAPITAL IN THE STATE SO IT COULD BE REFLECTED HERE. WHEN WE LOOK AT SPECIFIC CANCER SITES WE START TO SEE THE SAME PATTERN THAT WE SAW WITH INDIVIDUAL LEVEL SES, HERE IS INVASIVE CERVICAL AND IS ACTUALLY MORE THE DIFFERENTS ARE MORE MARKED. BECAUSE THE LOW SES AND THE HIGH SES. THEN WE SEE THIS -- EVEN MORE FOR PROSTATE CANCER. FOR THESE SPECIFIC CANCER SITES THE DIFFERENCES MIGHT BE MORE PRONOUNCED WHICH LEADS ME TO THINK THERE'S SOMETHING HAPPENING IN THE HIGHER SES AREAS VERSUS LOWER SES THAT COULD BE CONTRIBUTING TO THEIR RISK LATER ON. WE SEE THE SAME THING WE SAW PROSTATE CANCER WHERE RISK IS CRANING T AT EARLIER AGE AND HIGHER. AND THEN IT BARES OUR IN THE MULTI-VARIANT ANALYSIS IN THE (INAUDIBLE) MODEL. SO WE HAVE A LOT OF ANALYSIS STILL TO DO THAT EAR INTERESTED IN PURSUING. WE STARTED ANALYZING THE RISK OF THE PARENT WHO BORE THE CHILDREN DURING THIS TIME. THAT ANALYSIS A LOT MORE COMPLICATED. WE WANT TO LOOK AT AREA BASED MEASURES. THE MEASURES HERE ARE PACED ON INCOME. SO WE WANT TO LOOK AT THAT MEASURE. WE WANT TO CONDUCT MILLION LEVEL ANALYSES AND EVALUATE SOCIAL MO BUILT OF THE BABY BOOM CHILDREN. KEVIN HENRY WILL LEAD IN CONDUCTING SPATIAL MODELING AND CLUSTERING ANALYSIS FOR THIS DATA AND WE'RE ALSO GOING TO LOOK AT ALTERNATIVE COX MODELS, USING TIME VERSUS AGE REPEATING ANALYSIS AND SOMETHING I'M NOT FAMILIAR WITH, DR. SMITH WILL TAKE THE LEAD ON THIS ANALYSIS WHERE HE LOOKS AT THE MODEL AMONG SIBLINGS AND FAMILIES IN A WAY IT ACCOUNTS FOR SOME OF THE UNMEASURED CONFOUNDING FACTORS CONTRIBUTING TO A CHILD A FAMILY RISK CORRELATED RISK INSIDE THE FAMILY. SO APPARENTLY THOSE CAN ACTUALLY CAUSE WHO SOCK WHEN WRITING IT. HERE ARE ALL OUR COLLABORATORS THAT I WOULD LIKE TO THANK A LOT OF WHOM ARE NOT HERE. THAT'S IT. [APPLAUSE] >> ANY QUESTIONS? >> GREAT STUDY DESIGN. >> THANKS. >> DID YOU COMPARE ADULT SES WITH THE BIRTH COHORT SES? TO SEE HOW STABLE IT IS? IF IT'S STABLE THAT'S GOOD FOR THOSE OF US WHO HAVE BEEN USING ADULT SES. >> SO HOW WE DEFINE THE CHILD SES WAS BASED ON THEIR PARENT INDUSTRY. >> RIGHT. >> SO WHEN WE DO EVALUATE THE PARENT'S RISK WE'LL USE THAT SAME -- >> NO, I'M SAYING WITHIN THE ADULT THE PERSON WHO ENDED UP BECOMING THE CANCER CASE WHETHER THEY'RE SES AT BIRTH CHANGED MUCH FROM THEIR SES AT DIAGNOSIS >> YES. IT DID. IT DID. WE ACTUALLY DID A LOT OF OF ANALYSES LOOKING A BUNCH OF DIFFERENT WAYS AND WHAT WE WERE FINDING WAS WITHOUT ACTUALLY MONITORING WHERE THE BABY BOOMER MOVED, WE COULDN'T TELL FROM THE DATA WE KNEW THERE WAS EVIDENCE OF SOCIAL MOBILITY. WE KNEW THAT THERE SES AREA BASED LEVEL SES AT THE TIME OF THEIR BIRTH WAS DIFFERENT AND LOWER THAN THEIR AREA BASED SES MEASURE AT TIME OF DIAGNOSIS, WE KNEW THAT THERE WAS A TREND TOWARDS UP WAR MOBILITY. WE JUST DIDN'T KNOW TWO THINGS. WE DIDN'T KNOW IF THE PERSON MOVED LIKE PHYSICALLY MOVED TO A DIFFERENT CENSUS TRACK OR IF THE CENSUS TRACK, IING IF (INAUDIBLE) THIS IF THE SEN AT THIS TRACK ACTUALLY CHANGED OVER TIME. SO IF THERE WAS ANY KIND OF LIKE REDISTRICTING AND ALL OF A SUDDEN THE POOR PARTS OF THE CENSUS TRACK WAS REASSIGNED TO A DIFFERENT CENSUS TRACK SO NOW THEIR CENSUS TRACK IS HIGHER INCOME BASE, WE DIDN'T KNOW AT THE TIME. BUT THAT IS SOMETHING HE'LL LOOK AT. >> OKAY. GOOD. OKAY. YOU'RE FREE. >> SO THANK YOU ALL. WE'RE ENDING A LITTLE EARLY TODAY. THAT'S ALWAYS GOOD NEWS. WE'RE STARTING AT 8:30 TOMORROW MORNING. PLEASE COME BACK THEN, THANKS A LOT.