>> GOOD MORNING.
GOOD MORNING.
HELLO.
I WANTED TO THANK EVERYONE FOR
COMING OUT TODAY TO THE OFFICE
OF DISEASE PREVENTION MEDICINE,
MINE THE GAP SEMINAR SERIES WITH
SUSANNAH FOX.
BEFORE I TURN THINGS OVER TO OUR
DIRECTOR OF COMMUNICATIONS, I
WANTEDDED TO SAY A BIT ABOUT THE
MIND AND GAP SEMINAR SERIES.
THIS SERIES EXPLORES A WIDE
RANGE OF ISSUES AT THE
INTERSECTION OF RESEARCH,
EVIDENCE AND CLINICAL PRACTICECH
OUR HOPE WITH THIS SERIES IS TO
ENGAGE THE NIH COMMUNITY AND
THOUGHT-PROVOKING DISCUSSIONS TO
CHALLENGE WHAT WE THINK WE KNOW
AND TO THINK CRITICALLY ABOUT
OUR ROLE IN TODAY'S RESEARCH
ENVIRONMENT.
WE HAVE SEVERAL UPCOMING
SEMINARS THAT HAVE BEEN
SCROLLING THROUGH THE SCREEN AND
I ENCOURAGE YOU TO COME OUT AND
SUPPORT THIS SEMINAR SERIES.
IF YOU WOULD LIKE MORE
INFORMATION PLEASE GO TO OUR
WEBSITE AT CONSENSUS.NIH.GOV
CONSENSUS.NIH.GOV/MINETHEGAP FOR
MORE ANNOUNCEN'TSCH AND GET OUR
EMAIL LIST.
YOU MAY SEE JEANETTE AND KIM
OUTSIDE THE ROOM TO GET ON OUR
EMAIL LIST.
FINALLY I WANT TO THANK ALL OUR
SPONSORS FOR BRINGING MS. FOX TO
OUR ATTENTION AND INSIST SHE
LEND HER TALENT TO OUR SEMINAR
SERIES.
OFFICE OF DISEASE PREVENTION,
OFFICE OF RARE DISEASE RESEARCH,
BEHAVIOR AND SOCIAL SCIENCES
RESEARCH.
I WANT TO TURN THINGS OVER TO
KELLY.
>> GOOD MORNING.
I'M KELLY MARCH SEAL, DIRECTOR
OF COMMUNICATIONS IN THE OFFICE
OF DISEASE PREVENTION.
GREAT TO SEE Y'ALL HERE TODAY.
A SPECIAL WELCOME TO THOSE
VIEWING ONLINE FOR THE WEBCAST.
YOU'RE IN FOR A TREAT.
SUSANNAH FOX LEADS THE PEW
INTERNET AND LIFE PROJECTS
HEALTH RESEARCH AN OVER SEES
PROJECTS DIGITAL STRATEGY.
RECENT REPORTS BASED ON DATA IN
2010 INCLUDE AMERICANS LIVING
WITH DISABILITY, CANCER   .0,
MOBILE HEALTH, PEER TO PEER
HEALTHCARE AND THE SOCIAL LIFE
OF HEALTH INFORMATION.
WE HAVE BEEN EXCITED ABOUT TODAY
FOR A LONG TIME.
I HEARD SUSANNAH SPEAK A FEW
YEARS AGO AT A TRAINING SESSION
IN THIS ROOM FOR THE NIH
COMMUNICATIONS DIRECTORS.
HER PRESENTATION THAT DAY WAS
INFORMATIVE AND
THOUGHT-PROVOKING AND FROM THEN
ON I WAS ON THE LOOK-OUT NOT
JUST FOR REPORTS ON HER RESEARCH
AT PEW BUT ALSO FOR BROAD POST,
VIDEO CLIPS OF OTHER
PRESENTATIONS SHE DID, ARTICLE
BUSINESS OTHERS DESCRIBING HER
WORK.
OFTEN THE INFORMATION SHE
PROVIDED WAS PRACTICAL RELEVANCE
TO MY WORK BUT AS PARIS
MENTIONED THE MEDICINE MINE THE
GAP SEMINAR SERIES AIMS TO BRING
TO THE NIH SPEAKERS WHO
CHALLENGE CONVENTIONAL WISDOM
AND MAKE US QUESTION WHAT WE
THINK WE KNOW.
PRACTICALLY EVERYTHING I READ BY
OR ABOUT HER RESEARCH
CONTRADICTS SOMETHING I THINK I
ALREADY KNOW ABOUT THE AMERICAN
PUBLIC'S USE OF THE INTERNET AND
SOCIAL MEDIA AND HEALTH, OR
APPLIES TO THESE INSIGHTS IN NEW
AND EXCITING WAYS.
IT DOESN'T GET BETTER THAN THAT.
SO PLEASE JOIN ME IN WELCOMING
SUSANNAH FOX.
[APPLAUSE]
>> THANK YOU SO MUCH FOR HAVING
ME.
I'M REALLY EXCITED TO BE HERE.
I REMEMBER THAT MEETING TWO
YEARS AGO, IT WAS A GREAT ONE.
THANK YOU.
SO AS YOU MAY KNOW, THE PEW
INTERNET PROJECT IS SOCIAL
IMPACT OF THE INTERNET.
MOST INTERESTING AND EXCITING
ASPECT OF THE INTERNET THAT WE
ARE LOOKING AT NOW IS HOW MOBILE
SOCIAL TECHNOLOGIES ARE INVITING
US TO PARTICIPATE IN THE ONLINE
WORLD.
INSTEAD OF LETTING INFORMATION
JUST WASH OVER US, MOBILE SOCIAL
TECHNOLOGIES INVITE US TO JUMP
IN OURSELVES.
THIS NEW INFORMATION IS
TRANSFORMING POLITICAL
CAMPAIGNS, IT'S TRANSFORMING THE
NEWS BUSINESS AND ENTERTAINMENT
INDUSTRY AND IT'S TRANSFORMING
HEALTHCARE.
JUST PEER TO PEER FILE SHARING
TRANSFORMED THE MUSIC BUSINESS
BY ALLOWING PEOPLE TO SHARE
SONGS.
POOR THE PEER HEALTHCARE HAS THE
POTENTIAL TO TRANSFORM THE
PURSUIT OF HEALTH BY ALLOWING
PEOPLE TO SHARE ADVICE, SHARE
WHAT THEY KNOW ABOUT THEMSELVES.
WHAT WE SEE IS THAT PEER TO PEER
HEALTHCARE IS THE COMPLIMENTS OF
TWO POWERFUL FORCES.
NUMBER ONE, THE ANCIENT INSTINCT
TO SHARE ADVICE, TO SEEK AND
SHARE ADVICE ABOUT HEALTH.
NUMBER 2 IS OUR NEW FOUND
ABILITY TO DO SO AT INTERNET
SPEED AND AT INTERNET SCALE.
PEER TO PEER HEALTHCARE
ACKNOWLEDGES PATIENTS AND
CAREGIVERS KNOW THINGS ABOUT
THEMSELVES, ABOUT EACH OTHER,
ABOUT TREATMENTS AND THEY WANT
TO SHARE WHAT THEY KNOW TO HELP
OTHER PEOPLE.
TECHNOLOGY HELPS SURFACE AN
ORGANIZE THAT KNOWLEDGE TO MAKE
IT USEFUL FOR AS MANY PEOPLE AS
POSSIBLE.
I'LL SPEND THE NEXT FEW MINUTES
TALKING THE DATA THAT PROVES
THIS WAS A CONCEPT AND POINT OUT
WHERE I SEE ROADBLOCKS AND
OPPORTUNITIES.
THEN I'LL ASK FOR YOUR HELP
THINKING THROUGH WHERE THIS
MIGHT GO OVER THE NEXT FIVE
YEARS.
BUT FIRST A STORY FROM THE OTHER
SIDE OF THE COUNTRY.
SILICON VALLEY.
THE WEB 2.0 SUMMIT IS AN ANNUAL
MEETING OF HIGH POWERED
EXECUTIVES AND LEADING THINKERS.
THE STAGE BACKDROP LAST FALL WAS
THIS IMAGINARY MAP OF THE ONLINE
WORLD AND THE TERRITORIES THAT
HAVE BEEN CLAIMED BY DIFFERENT
COMPANIES.
IT'S A WHIMSICAL REPRESENTATION
OF THE SO-CALLED POINTS OF
CONTROL IN THE BATTLE FOR THE
NETWORK ECONOMY.
MARK ZUCKERBERG WAS THE LAST
SPEAKER OF THE EVENT.
HE CAME ON STAGE AND SAID YOUR
MATH IS WRONG.
THE BIGGEST PART OF THE MAP HAS
TO BE UNCHARTERED TERRITORY.
THIS MAP MAKES IT SEEM LIKE IT'S
ZERO SUM BUT IT'S NOT.
WE'RE BUILDING VALUE.
NOT JUST TAKING AWAY FROM OTHER
COMPANIES.
NOW, I FOUND THAT COMMENT SO
REFRESHING.
AND EVEN IDEALISTIC.
SO LEAVE ASIDE MARK ZUCKERBERG'S
BILLION DOLLARS AND LEAVE ASIDE
THE CUT-THROAT ATTITUDE OF SO
MUCH OF SILICON VALLEY AND THINK
ABOUT WHAT THAT STATEMENT MEANS
FOR YOU.
AND FOR ALL OF US.
HERE IS WHAT I THINK IT MEANS.
WE KNOW SOMETHING IMPORTANT IS
OUT THERE.
AND IT'S BIG AND POTENTIALLY
WORLD-CHANGING.
WE'RE BRAVE AND IDEALISTIC
ENOUGH TO THINK WE CAN TAKE
ADVANTAGE OF IT.
WHAT ALSO STRUCK ME IS THAT A
MAP OF THE HEALTH WORLD WOULD BE
SIMILAR.
FOR MOST PEOPLE IT'S UNMAPPED,
UNFAMILIAR TERRITORY.
AS SUZANNE SONTAG WROTE,
EVERYONE WHO IS BORN HOLDS DUAL
CITIZENSHIP IN THE KING TOM OF
THE WELL, AND IN THE KINGDOM OF
THE SICK.
ALTHOUGH WE ALL PREFER TO USE
THE GOOD PASSPORT, SOONER OR
LATER EACH OF US IS OBLIGED AT
LEAST FOR A SPELL, TO IDENTIFY
OURSELVES AS CITIZENS OF THAT
OTHER PLACE.
IT'S NOT SURPRISING WHEN SOMEONE
GETS DROPPED INTHE KINGDOM OF
THE SICK THEY GRAB THEIR PHONES,
THEY GRAB THEIR LAPTOPS, THEY
GRAB THEIR LOVED ONES AND THEY
GO.
THEY GO INTO THAT UNCHARTERED
TERRITORY OF A NEW DIAGNOSIS, A
NEW TREATMENT, A NEW GOAL TO
LOSE WEIGHT OR GET THEIR NUMBERS
UNDER CONTROL.
THEY CONSULT EXPERTS, THEY CALL
AN SEARCH AND TEXT.
THEY STUDY UP, THEY BAND
TOGETHER AN FORM POSSEs.
PIONEERS SHARE THEIR MAPS WITH
NEWCOMERS.
LETTING THEM KNOW WHICH CLINICAL
CENTERS ARE THE BEST FOR CERTAIN
CONDITIONS.
THEY POST WARNINGS, THAT
TREATMENT TURNS OUT NOT TO WORK
AS WELL AS WE HAD HOPED.
THEY POST NEW INFORMATION AS
THEY FIND IT.
SOMETIMES VALID, SOMETIMES NOT.
AND THE NUMBER ONE THING PEOPLE
DO IS TO GET THE HELL OUT OF THE
KINGDOM OF THE SICK.
EVERYONE WANTS TO HELP THEM.
EVERYONE IS WORKING ON SOMETHING
YOU HOPE WILL CHANGE LIVES, THAT
YOU HOPE WILL BUILD VALUE.
SO BY THE WAY IS THE REFORM OF
OUR HEALTHCARE SYSTEM.
MY DAD WAS A PRETTY SERIOUS
HIKER IN HIS DAY AND I REMEMBER
HIM COMING BACK FROM A
PARTICULARLY TOUGH CLIMB.
HE WAS GRATEFUL FOR THE HELP
THAT HE RECEIVED FROM THE GROUP
HE WAS WITH AND THE HELP THAT HE
WAS ABLE TO GIVE.
HE REPEATED THE WISDOM OF
CLIMBERS EVERYWHERE.
THE MOUNTAIN DOESN'T CARE WHO
YOU ARE.
THAT'S WHAT I'M HERE TO TALK
ABOUT TODAY.
HOW PEOPLE ARE BANDING TOGETHER
TO BUSH WACK THEIR WAY OUT OF
THE WING DOCUMENT OF THE SICK.
EVERYONE INCLUDING THE THE NIH
CAN LEARN FROM THEIR EXAMPLE.
THE PEW RESEARCH CENTER HAS BEEN
TRACKING THE UPTAKE OF INTERNET
USE CLOSELY FOR OVER TEN YEARS.
YOU THINK OF US AS YOUR GPS FOR
NAVIGATING THE ONLINE WORLD.
IN ORDER TO GET AN ACCURATE
PICTURE OF THE CHANGING
POPULATION, WE CONDUCT NATIONAL
RAN DAM DIGIT SURVEY, LAND LINE
AND CELL PHONE AND WE SURVEY IN
ENGLISH AND SPANISH.
IN 1995 ONLY ONE IN TEN AMERICAN
ADULTS HAVE ACCESS TO THE
INTERNET.
IN 2000 IT WAS UP TO HALF OF
AMERICAN ADULTS.
NOW 75% OF ADULTS AND TEENAGERS
HAVE ACCESS TO THE INTERNET.
ARE SIGNIFICANTLY LESS LIKELY
THAN HEALTHY ADULTS TO HAVE
ACCESS TO THE INTERNET.
62% OF ADULTS LIVING WITH ONE OR
MORE CHRONIC DISEASE GO ONLINE
COMPARED WITH 81% OF ADULTS
REPORTING NO CHRONIC CONDITIONS.
UNFORTUNATELY IT'S NOT JUST AGE.
WE CONTROLLED FOR ALL OTHER
DEMOGRAPHIC FACTORS IN LOOK AT
THE DATA ON CHRONIC DISEASE.
THERE'S SOMETHING INDEPENDENT IN
THE DATA THAT SHOWS THAT CHRONIC
DISEASE IS AN INDEPENDENT EFFECT
ON SOMEONE'S AFFECT TO HAVE
INTERNET ACCESS.
THAT'S A ROADBLOCK TO KEEP IN
MIND AS WE LOOK AT.
THIS THERE'S POCKETS OF PEOPLE
WHO REMAIN OFFLINE BUT MANY OF
THEM HAVE WHAT WE CALL SECOND
DEGREE INTERNET ACCESS.
THE LOVED ONES ARE ONLINE.
PEOPLE WHO ARE CARING FOR THEM
ARE LIKELY ONLINE.
CAREGIVERS REPRESENT AN
OPPORTUNITY FOR ENGAGEMENT OF
ELDERS AND OTHERS WHO REMAIN
OFFLINE.
6 IN 10 U.S. ADULTS GO ONLINE
WIRELESSLY WITH A LAB TOP,
MOBILE DEVICE OR TABLET.
WHAT'S INCREDIBLE TO ME IS THAT
18 TO 29-YEAR-OLD, CALL THEM
84%, OF 18 TO 29-YEAR-OLDS GO
ONLINE WIRELESSLY.
I HAVE THREE KEY POINTS ABOUT
THE WIRELESS OPPORTUNITY.
THE FIRST ONE IS LOCAL.
NEARLY HALF OF AMERICAN ADULT,
47% REPORT THAT THEY GET AT
LEAST SOME LOCAL NEWS AND
INFORMATION ON THEIR CELL PHONE
OR TABLET.
THIS IS AN EXAMPLE OF HOW
INTERNET'S BROAD PORTFOLIO OF
RESEARCH IS ABLE TO BENEFIT
OTHER INDUSTRIES.
WE'RE TRACKING THE INTERNET
IMPACT ON NEWS, POLITIC, GAMING,
EDUCATION AND ENTERTAINMENT, THE
HABITS AND BEHAVIORS THAT PEOPLE
FORM AND THOSE SECTORS ARE
LIKELY TO PORT OVER TO HEALTH
WHEN SOMEONE GETS SICK OR IS
CARING FOR A LOVED ONE.
THE SECOND KEY POINT ABOUT
WIRELESS IS -- HAS TO DO WITH
HEALTH.
WIRELESS INTERNET USERS ARE
VORACIOUS INFORMATION CONSUMERS.
ONE EXAMPLE IS 48% OF WIRELESS
INTERNET USERS LOOK ONLINE FOR
INFORMATION ABOUT DOCTORS OR
OTHER HEALTH PROFESSIONALS
COMPARED WITH 31% OF INTERNET
USERS WHO DO NOT HAVE WIRELESS
ACCESS.
ALWAYS ON, ALWAYS WITH YOU
INTERNET BECOMES A DEFAULT
INFORMATION SOURCE.
THE THIRD POINT ABOUT WIRELESS
IS DEVICES.
83% OF AMERICAN ADULTS HAVE A
CELL PHONE.
SMALL SCREENS OUTNUMBER BIG
SCREENS IN THE UNITED STATES.
ASK YOURSELF, ARE YOU DOING
EVERYTHING YOU CAN TO OPTIMIZE
FOR THE SMALL SCREENS, TO TAKE
ADVANTAGE OF TEXT MESSAGE
SOMETHING WE RESEBLY CAME OUT
WITH OUR FIRST REPORT TO CUTSED
ON SMART PHONES, A SEGMENT OF
THAT 83%.
35% OF AMERICAN ADULTS HAVE A
SMART PHONE.
OUR DEFINITION OF SMART PHONE
OWNER INCLUDES ANYONE WHO FALLS
INTO EITHER OF THE FOLLOWING TWO
CATEGORIES.
CELL OWNERS WHO SAY THEIR PHONE
IS A SMART PHONE.
CELL OWNERS WHO SAY THEIR PHONE
OPERATES ON A SMART PHONE
PLATFORM.
iPHONES AN BLACKBERRY DEVICES
AS WELL AS PHONES LIKE ANDROID
WINDOWS OR PALM OPERATING
SYSTEMS.
ONE FAVORITE SURVEY QUESTION IS
TO ASK PEOPLE TO TELL US IN
OTHER WORDS THE ONE WORD THAT
OCCURS TO THEM WHEN WE TALK
ABOUT A CERTAIN TOPIC.
BECAUSE IT ALLOWS US TO STEP
BACK AND LET THE RESPONDENTS
REALLY SAY WHAT THEY THINK.
WE ASKED SMART PHONE OWNERS TO
DESCRIBE HOW THEY FEEL ABOUT
THEIR PHONES IN A SINGLE WORD.
HERE IS WHAT THEY SAID.
THE THREE MOST COMMON WORDS WERE
GOOD, GREAT, AND CONVENIENT.
HOWEVER, IF YOU LOOK CLOSELY YOU
CAN SEE THE WORD EXPLETIVE TO
THE LEFT OF LOVE ON THE SLIDE SO
THERE ARE MIXED REVIEWS OUT
THERE.
SEVERAL DEMOGRAPHIC GROUPS OF
HIGHER THAN AVERAGE LEVELS OF
SMART PHONE ADOPTION INCLUDING
THE FINANCIALLY WELL OFF AND
WELL EDUCATED WHICH IS ABOUT
WHAT YOU WOULD EXPECT.
SMART PHONES ARE EXPENSIVE AS
ARE THE DATA PLANSCH THOSE UNDER
THE AGE OF 45 AND AFRICAN
AMERICANS AND LATINOS.
ONE OF THE MOST INTERESTING DATA
POINTS TO COME OUT OF THIS STUDY
IS THAT 25% OF SMART PHONE
OWNERS SAY THEIR PHONES ARE
THEIR MAIN SOURCE OF INTERNET
ACCESS.
25%.
42% OF SMART PHONE OWNERS
BETWEEN AGE 18 AND 29 SAY THAT.
WE LOOKED AT THE DATA AND MANY
OF THESE PEOPLE HAVE OTHER
CHOICES.
THEY'RE LIKELY TO HAVE A LAPTOP
OR A DESKTOP, THEY'RE LIKELY TO
HAVE OTHER CHOICES WHEN IT COMES
TO INTERNET ACCESS BUT THEY
CHOOSE TO GO ONLINE MOSTLY USING
THEIR SMART PHONE.
SO HERE ARE THREE OPPORTUNITIES
AMPLIFIED BY THIS RISE OF SMART
PHONES.
NUMBER ONE, REACHING AFRICAN
AMERICANS, LATINOS AND YOUNG
PEOPLE.
NUMBER TWO, MAKING PLACE
IRRELEVANT.
ALSO KNOWN AS LOCATION DISABLED.
YOU CAN GET THE INFORMATION OUT
TO EVERYONE NO MATTER WHERE THEY
ARE.
IF SOMEONE SAYS I NEED THIS
OBSCURE PIECE OF INFORMATION
WHERE I AM RIGHT NOW I MIGHT BE
IN A RURAL LOCATION, THAT'S
LOCATION DISABLED.
THE THIRD POINT IS THAT SMART
PHONES CAN MAKE PLACE EXTREMELY
RELEVANT THIS, AMPLIFIES THE
WIRELESS POINT ABOUT LOCAL.
OTHERWISE KNOWN AS LOCATION
ENABLED IT HELPS SOMEONE IN A
CERTAIN PLACE CONNECT WITH LOCAL
RESOURCES.
SO IF SOMEONE IS SAYING WHERE IS
THE NEAREST TESTING CENTER OR
CLINIC?
THAT'S LOCATION ENABLED.
THAT'S WHAT WE SEE DRIVING
MOBILE ADOPTION IN MANY WAYS.
HYPER LOCAL NEWS AND
INFORMATION.
PREVIOUS RESEARCH FOR THE PEW
INTERNET PROJECT IDENTIFY
SOMETHING WE CALL THE MOBILE
DIFFERENCE.
IF YOU HAND SOMEONE A SMART
PHONE THEY'RE MORE LIKELY TO
SHARE, MORE LIKELY TO
CONTRIBUTE.
MORE LIKELY TO FORWARD SOMETHING
TO RECORD AND UP LOAD A VIDEO,
TO UPDATE THEIR STATUS.
MORE LIKELY TO PARTICIPATE AND
NOT JUST CONSUME ON THE ONLINE
WORLD.
WHEN WE TALK ABOUT SHARING, WE
OF COURSE HAVE TO TALK AB SOCIAL
NETWORKING SITES LIKE FACEBOOK.
HALF OF AMERICAN ADULTS USE
SOCIAL NETWORKING SITES.
THE VAST MAJORITY HAVE A PROFILE
ON FACEBOOK.
THE PEW INTERNET PROJECT RECENT
REPORT ON SOCIAL NETWORKING
SITES FOUND CONTRARY TO FEARS
THE TECHNOLOGY ISOLATES PEOPLE
AND HAS A DETRIMENTAL IMPACT ON
SOCIETY, FACEBOOK USERS ARE MORE
TRUSTING THAN OTHER PEOPLE.
FACEBOOK USERS HAVE MORE CLOSE
RELATIONSHIPS AND GET MORE
SOCIAL SUPPORT OFFLINE THAN
OTHER PEOPLE.
WE UNCOVERED EVIDENCE THAT
SOCIAL LIFE ONLINE DOES INDEED
HAVE A POSITIVE ASSOCIATION WITH
A HEALTHY SOCIAL LIFE OFFLINE.
WE ARE BUILDING NETWORKS ONLINE
THAT WE TAP INTO WHEN WE NEED
HELP OR ADVICE.
SLATE PUBLISHED A STORY TWO
WEEKS AGO WHICH BROUGHT THIS
OBSERVATION TO LIFE.
DEBRA COGAN'S 4-YEAR-OLD SON LEO
WOKE UP SUNDAY WITH RASH AND
FEVER.
SHE TOOK HIM TO A CLINIC AND
WHILE WAITING THE TEST RESULTS
SNAPPED A PHOTO OF HIM WITH HER
PHONE.
SHE POSTED IT TO FACEBOOK WITH
THE CAPTION NOTHING SAYS HAPPY
MOTHER'S DAY QUITE LIKE A SUNDAY
MORNING AT THE PEDIATRICIAN.
FRIENDS BEGAN COMMENSURATING AND
ASKING QUESTIONS IN THE COMMENTS
WHICH ISSUE RIGHTS WOULD HAVE
BEEN INCONCEIVABLE BEFORE SHE
JOINED FACEBOOK.
IN THE ARTICLE SHE WRITES SHE
COULDN'T BELIEVE COMPLETE
STRANGERS WOULD EVER FRET OVER
MY CHILD'S WELFARE.
NEVER MIND THAT THE ACT OF
POSTING ITSELF HAS BECOME AS
ENTRYCAL TO MY DAILY EXISTENCE
AS TALKING, WRITING, THINKING,
DREAMING.
BACK OF THE CLINIC THE DOCTOR
GAVE A PRESCRIPTION FOR
PENICILLIN PENDING THE FINAL
TEST RESULTS.
BUT HER SON GOT WORSE OVERNIGHT.
SHE POSTED TO FACEBOOK A SECOND
PICTURE OF AN EVEN PU FIER LEO
WITH A CAPTION BABY GETTING
SICKER, EYES SWOLLEN SHUT.
FEVER RISING, PENICILLIN NOT
WORKING.
MIGHT BE SCARLET FEVER OR
ROSEOLA OR QUESTION MARK,
QUESTION MARK, QUESTION MARK.l'q2"V-4Ñr 
SHE POSTED A THIRD MORE
LARPING PHOTO HER SOCIAL CONVOY
SHIFTED INTO HIGH GEAR.
A FRIEND CALLED HER CELL PHONE
SAYING I HOPE YOU'LL EXCUSE ME
FOR BUTTING IN BUT YOU HAVE TO
GET TO THE HOSPITAL.
NOW.
HER SON MAX HAD HAD THE EXACT
SAME SYMPTOMS AND WAS
HOSPITALIZED FOR KAWASAKI
DISEASE, A RARE AUTO IMMUNE
DISORDER THAT ATTACK IT IS
CORONARY ARTERY SURROUNDING THE
HEART.
THE LONGER YOU WAIT THIS FRIEND
SAID THE WORSE THE DAMAGE.
TO CUT TO THE CHASE, THE FRIEND
WAS RIGHT.
LEO WAS ADMIT AND TREATED FOR
KAWASAKI DISEASE.
MONTHS LATER STILL RECOVERING
FROM KAWASAKI TRIGGERED LIVER
DISEASE.
WHEN THE FAMILY DOCTOR HEARD THE
DIAGNOSIS CAME FROM A FACEBOOK
FRIEND HE REPLIED BRAVO
FACEBOOK.
THIS STORY IS UNUSUAL.
LOOKING ONLINE FOR HEALTH
INFORMATION IS COMMON.
CROWD SOURCING AND DIAGNOSIS ON
FACEBOOK IS UNCOMMON BUT I BRING
IT AS AN ILLUSTRATION OF THIS
NEW PHENOMENON OF PEER TO PEER
HEALTHCARE.
SOCIAL NETWORK SITES ARE AN
OPPORTUNITY, ENABLING FACTOR IN
THE MOVEMENT TOWARD PEER TO PEER
HEALTHCARE.
REGINA HOLIDAY WAS THE FIRST
PERSON I HEARD DESCRIBE FACEBOOK
AS A PERSONAL HEALTH RECORD WITH
PRIVACY ISSUES.
HER HUSBAND SAID USE FACEBOOK TO
KEEP FRIENDS AND FAMILY MEMBERS
UP TO DATE ON HIS HEALTH.
WHICH TOOK A TURN FOR THE WORSE
A COUPLE OF YEARS AGO.
HE WAS FINALLY DIAGNOSED WITH
KIDNEY CANCER AND LOOKING BACK
AT THE FACEBOOK STATUS UPDATES
REGINA SAW THE WARNING SIGNS IN
RETROSPECT WHICH WERE MISSED BY
THE DOCTORS T.
WHO ONLY SAW HIM ONCE IN A WHILE
OR IN THE EMERGENCY ROOM.
AFTER FRED'S DEATH REGINA BECAME
AN ADVOCATE FOR PATIENT'S
RIGHTS, ESPECIALLY HEALTH DATA
RIGHTSCH SHE'S A TEACHER HERE IN
WASHINGTON D.C. AND HAS USED HER
ART TO DRAW ATTENTION TO HER
CAUSECH THIS IS THE PAINTING
REGINA DID FOR ME.
IT'S ON THE BACK OF ONE OF MY
SUIT JACKETS.
ON THE LEFT YOU SEE ME GIVING A
SPEECH, BUT I'M BEHIND THE
SCREEN, THE SCREEN OF
IMPARTIALITY AN OBJECTIVITY.
YOU DON'T SEE ME OR MY PERSONAL
OPINIONS.
INSTEAD I FEATURE DATA.
THAT'S DATA ON THE RIGHT.
FACELESS, NAMELESS, ANONYMIZED
DATA SCRUBBED CLEAN FOR AN
OFFICE.
LIGHT IS SHINING IN SINCE DATA
SHEDS LIGHT BUT THE PATIENT IS A
LITTLE SAD TO BE ANONYMOUS, TO
NOT HAVE THEIR STORY TOLL IN
DETAIL.
E -- TOLL IN DE-- TOLD IN
DETAIL.
I THINK ABOUT THAT WHEN I THINK
ABOUT ANALYZING MY COLUMNS WITH
NUMBERS.
WRITING REPORTS BASED ON DATA.
REGINA CAPTURED THE THE TENSION
BETWEEN ANONYMIZED DATA AND THE
STORIES THAT IS BEHIND EACH ONE
OF THOSE NUMBERS.
SHE EVEN SIGNED THE PAINTING
ADULTS BETWEEN AGES 18 TO 49.
REGINA PAINTED OVER 50 OTHER
JACKETS LIKE MINE ALONG THE
WALKING GAL RHODE ISLAND PEEP
SEND HER A BUSINESS JACKET OR
LAB COAT AND SHE PAINTS A STORY
ON THE BACK.
SO EVERY TIME YOU WEAR IT TO A
MEETING, OR A CONFERENCE PEOPLE
REMINDED TO THINK OF PATIENTS OF
PATIENT AND CAREGIVERS, BECAUSE
THAT'S THE POINT, TO BRING THOSE
STORIES INTO THE CLINICAL
DISCUSSIONS, TO BRING THOSE
STORIES INTO THE DISCUSSIONS
THAT WE HAVE ABOUT PUBLIC
HEALTH.
HERE ARE TWO MORE EXAMPLES FROM
THE WALKING GALLERY.
STORIES OF PEOPLE WHO FEEL LOST
IN THE WILDERNESS.
OPT LEFT IS AN IMAGE SHOWING A
HUSBAND AND WIFE WHO ARE DOCTORS
BUT ARE NOW FACING THE
WILDERNESS OF THEIR CANCER
TREATMENT.
ON THE RIGHT IS IMAGE OF A
MOTHER WHOSE CHILD IS SEVERELY
DISABLED AND THEIR JOURNEY UP
AND DOWN THE PATH OF HOSPITAL
LAND ALWAYS A GUEST AND NEVER A
FULL PARTNER ON CARE TEAM.
I WILL LEE THOSE IMAGES ON THE
SCREEN AS I TALK ABOUT PEOPLE
USING EVERY TOOL AT THEIR
DISPOSAL TO PURSUE HEALTH IN THE
KINGDOM OF THE WELL, AND
NAVIGATE THE KINGDOM OF THE
SICK.
6 AND 10 U.S. ADULTS GATHER
HEALTH INFORMATION ONLINE.
THE DOCTOR, NURSES AND OTHER
HEALTH PROFESSIONALS CONTINUE TO
BE THE FIRST CHOICE FOR MOST
PEOPLE WITH HEALTH CONCERNS.
ESPECIALLY AMONG PEOPLE WITH
CHRONIC CONDITIONS.
DIGGING DEEPER WE DID SURVEY
WORK LOOKING AT THE DIFFERENT
KINDS OF INFORMATION SOMEONE
MIGHT WANT.
NINE OF TEN ADULTS SAY HEALTH,
PROFESSIONALS ARE MORE HELPFUL
THAN FELLOW PATIENTS FRIENDS AND
FAMILY WHEN IT COMES TO GETTING
AN ACCURATE MEDICAL DIAGNOSIS.
ONLY 5% OF AMERICAN ADULTS SAY
FELLOW PATIENTS FRIENDS AND
FAMILY ARE MORE HELPFUL THAN A
CLINICIAN FOR A DIAGNOSIS.
THE PICTURE SHIFTS WHEN WE TALK
ABOUT EMOTIONAL SUPPORT.
IN DEALING WITH A HEALTH ISSUE.
PATIENT FRIENDS AND FAMILY ARE
THE MUCH MORE POPULAR CHOICE.
IT'S AN EVEN SPLIT WHEN IT COMES
TO PRACTICAL ADVICE COPING WITH
DAY TO DAY HEALTH SITUATIONS.
PROFESSIONAL SOURCES LIKE
DOCTORS AND NURSES RANK EVEN
WITH FRIENDS AND FAMILY.
THE BOTTOM LINE IS THE INTERNET
DOES NOT REPLACE HEALTH
PROFESSIONALSCH PEER TO PEER
HEALTHCARE IS A WAY FOR PEOPLE
TO DO WHAT THEY HAVE ALWAYS DONE
TO LEND AN EAR LEND A HAND, LEND
ADVICE BUT AT INTERNET SPEED AND
SCALE.
IT'S THE EVOLUTION OF INTERNET
USE THAT THE PEW INTERNET
PROJECT HAS BEEN TRACKENING
OTHER INDUSTRIES AND IS JUST
FINALLY HAVING AN IMPACT ON
HEALTHCARE.
FOR YEARS THE DEFALL SETTING FOR
PEOPLE WITH A HEALTH QUESTION
WAS I DON'T KNOW BUT I CAN TRY
TO FIND OUT.
THE NEW SETTING FOR SOME PEOPLE
NOW IS I KNOW AND I WANT TO
SHARE MY KNOWLEDGE.
PEER TO PEER HEALTHCARE IS PART
OF THAT TREND.
PEW INTERNET RESEARCH SHOWS ONE
IN FIVE ENTERIN THE USERS HAVE
GONE ONLINE TO FIND OTHERS WHO
HAVE HEALTH CONCERNS SYSTEM TO
THEIRS.
RIB THE MOBILE DIFFERENCE F YOU
HAND SOMEONE A SMART PHONE
THEY'RE MORE LIKELY TO SHARE AND
CONTRIBUTE, NOT JUST CONSUME
INFORMATION.
WE HAVE ALSO IDENTIFIED A
DIAGNOSIS DIFFERENCE.
HOLDING ALL OTHER DEMOGRAPHIC
CHARACTERISTICS CONSTANT.
WE FIND A CHRONIC DISEASE,
SIGNIFICANTLY INCREASES AN
INTERNET USERS' LIKELIHOOD TO
CONTRIBUTE AND CONSUME
USER-GENERATED CONTENT RELATED
TO HEALTH.
THEY'RE LEARNING FROM EACH
OTHER.
NOT JUST FROM INSTITUTIONS.
THESE TWO FORCES IS COMING
TOGETHER TO DRIVE FORWARD THIS
TREND OF PEER TO PEER
HEALTHCARE.
OPT ONE HAND WE HAVE
AVAILABILITY OF SOCIAL TOOLS.
ON THE OTHER HAND WE HAVE THE
MOTIVATION.
ESPECIALLY AMONG PEOPLE LIVING
WITH CHRONIC CONDITIONS TO
CONNECT WITH EACH OTHER.
ONE IN FOUR INTERNET USERS
LIVING WITH A CHRONIC DISEASE
HAS GONE ONLINE TO LOOK FOR
SOMEONE LIKE THEM.
A SIGNIFICANTLY HIGHER
PERCENTAGE OF -- THAN OTHER
INTERNET USERS.
ONE IN FOUR USERS WHO ARE CARING
FOR A LOVED ONE HAVE DONE SO.
AS I HAVE INTERNET USERS WHO
EXPERIENCED SIGNIFICANT CHANGE
THIS THEIR PHYSICAL HEALTH SUCH
AS WEIGH LOSS OR GAIN, PREGNANCY
OR QUITTING SMOKING.
ALL THESE GROUPS ARE ALSO MORE
LIKELY TO USE SOCIAL NETWORKING
SITES LIKE FACEBOOK, TO GATHER
HEALTH INFORMATION AND FOLLOW
THEIR FRIENDS' HEALTH UPDATES ON
THE SITES.
ON A PARALLEL TRACK PEOPLE USE
ONLINE RESOURCES TO QUANTIFY
THEIR HEALTH.
PEW INTERNET HAS FOUND ONE IN
FOUR USERS TRACK WEIGHT, DIET,
EXERCISE ROUTINE OR OTHER HEALTH
SYMPTOMS ONLINE.
ONE IN FOUR USERS.
WIRELESS INTERNET USERS ARE
SIGNIFICANTLY MORE LIKELY THAN
OTHER INTERNET USERS TO TRACK
THEIR OWN HEALTH DATA ONLINE.
THE TOOLS ARE IN PLACE.
THE CULTURE IS SHIFTING TO
EXPECT PEOPLE HAVE ACCESS TO
INFORMATION AND TO EACH OTHER.
THERE'S MOUNTING EVIDENCE THAT
CONNECTING PATIENTS WITH EACH
OTHER AND WITH THEIR DATA HAS A
POSITIVE EFFECT ON HEALTH
OUTCOMES.
BUT WE'RE STILL AT THE EARLY
ADOPTION STAGES.
WHAT WILL IT TAKE TO BRING THIS
TO THE NEXT LEVEL?
I'M GOING TO G OVER THE
ROADBLOCKS AND THE
OPPORTUNITIES.
NUMBER ONE, THERE ARE POCKETS
THAT ARE TRULY OFFLINE WHICH
DESCRIBES PEOPLE AGE 70 OR OLDER
AN THOSE WITH CHRONIC DISEASE OR
DISABILITY.
NUMBER TWO, PEOPLE WHO SEE NO
REASON TO CHANGE THEIR BEHAVIOR
OR ENGAGE IN THEIR HEALTH, NOT
MOTIVATED TO SEEK TREATMENT
WHETHER ONLINE OR OFFLINE.
THE THIRD ROADBLOCK IS
TECHNOLOGY THAT'S SIMPLY A PAIN
TO USE.
WE CAN ALL THINK OF EXAMPLES IN
OUR LIVES.
THE FOURTH IS COMMUNITIES AND
TOOLS WHICH ARE SILOS OF
INFORMATION.
UNCONNECTED TO CLINICAL PRACTICE
AND UNABLE TO CONNECT WITH EACH
OTHER.
FINALLY LACK OF AWARENESS THAT
ONLINE COMMUNE COMMUNITIES
INFORMATION RESOURCES AND OTHER
TOOLS EXIST TO MAKE A DIFFERENCE
IN HEALTH OUTCOMES.
NOW LET'S GO OVER THE
OPPORTUNITIES.
TO ANSWER POCKETS OF PEOPLE
TRULY OFFLINE WHICH ARE MOSTLY
PEOPLE OVER AGE 70, THERE ARE
CAREGIVERS WHO CAN HELP SOMEONE
ACCESS ONLINE RESOURCES THAT
THEY MAY NEED TO GET BETTER
CARE.
FOR THOSE WHO SEE NO REASON TO
ENGAGE H IN THEIR HEALTH
ARVETION LIFE CHANGING DIAGNOSIS
OR OTHER EVENT CAN PROMPT
ENGAGEMENT AND THAT CAN TRIGGER
THE DIAGNOSIS DIFFERENCE.
WE ALSO SEE MOBILE ADOPTION
WHICH REALLY IS SWEEPING THE
COUNTRY.
IT SEEMS TO HAVE AN INDEPENDENT
EFFECT ON PEOPLE'S ENGAGEMENT
ONLINE THAT'S THE MOBILE
DIFFERENCE.
FINALLY THERE'S THE
TECHNOLOGICAL MEANS TO CONNECT
SIGH LES AB LET DATA FLOW.
LACK OF WARENESS, THERE'S
MAINSTREAM PRESS COVERAGE, WORD
OF MOUTH AND CLINICAL PROGRAMS
TO HELP SPREAD AWARENESS.
NOW, THIS IS THE PART WHICH I
NEED YOUR HELP.
THINK OF YOUR OWN LIVES, YOUR
FRIENDS AND FAMILY OR MAYBE
YOURSELF, WHO MIGHT BENEFIT
CONNECTING TRYING TO DO.
NOW THINK ABOUT YOUR WORK,
WHETHER IT'S IN CLINICAL
PRACTICE RESEARCH OR ANOTHER
PURSUIT.
WHO MIGHT BENEFIT FROM
UNDERSTANDING PEER TO PEER
HEALTHCARE?
WHAT ARE THE ROADBLOCKS AND
OPPORTUNITIES YOU SEE IN THE
LANDSCAPE?
I WANT TO HEAR FROM YOU IN THE
DISCUSSION SO PLEASE START
THINKING ABOUT THOSE QUESTIONS.
I'M GOING TO END WITH EXAMPLES
OF BEACONS OF CHANGE THAT I SEE.
BEACON NUMBER ONE, PATIENT
LEADERS.
KATHERINE CALHOUN IS THE MOTHER
OF BILLY, A SWEET NINE-YEAR-OLD
BOY WHO HAPPENS TO HAVE AN AL
BRIGHT SYNDROME WHICH AMONG
OTHER THINGS CAUSES SEVERE BONE
PAIN.
THEY LIVE IN LOUISIANA,
KATHERINE HAS RESEARCHED AND
NETWORKED HER WAY TO GETTING
BILLY CARED FOR AT THE BEST
CLINICAL CENTERS IN THE COUNTRY
INCLUDING HERE AT THE NIH.
KATHERINE IS ALSO A LEADER OF A
SOCIAL CONVOY WHICH SHE
DESCRIBES AS WITH AS PATIENT
ADVOCATES.
I CAN'T DO IT IN HER LOUISIANA
ACCENT BUT JUST IMAGINE THAT.
SHE SENDS SO MANY PATIENTS TO
BILLY'S BONE DOCTOR AN
ENDOCRINOLOGIST THAT THESE
DOCTORS REFER TO APPOINTMENTS AS
CONSULTS FOR DR. CALHOUN.
SHE'S NOW WORKING ON A BIOETHICS
PROJECT AND RECENT WILY WAS IN
DISCUSSION GROUPS WITH CLINIC
WHOSE TALKED ABOUT HOW
CUTTING-EDGE OFF LABEL USE OF
MEDICATIONS, A DISCRETELY SHARED
AMONG COLLEAGUES AT CONFERENCES
AND IN SOCIAL SETTINGS.
BUT WHAT ABOUT CLINICIAN WHOSE
AREN'T PRIVY TO THESE
CONVERSATIONS?
KATHERINE SPOKE UP, YOU HOPE THE
PARENTS FIND A BIG MOUTH TROUBLE
MAKING MOM LIKE ME WHO WILL GIVE
THEM A LIST OF POSSIBLE
MEDICATIONS AND THE WHYS AND
HOWS AN WHOS.
THAT'S PEER TO PEER HEALTHCARE.
BEACON NUMBER 2, CLINICIAN
LEADERS.
I THINK CLINICIAN INVOLVEMENT
MAYBE A SIGNIFICANT PIECE OF
PUZZLE.
A WAY TO SPARK INTEREST AMONG
PEOPLE WHO HAVE INTERNET ACCESS,
WHO ARE USING SOCIAL TOOLS, THEY
MIGHT HAVE A FACEBOOK PROFILE
BUT THEY'RE NOT USING ANY OF
THAT NETWORKING CAPABILITY FOR
HEALTH.
AND A RECOMMENDATION FROM THE
CLINICIAN IS POWERFUL.
CHILDREN'S HOSPITAL IN BOSTON
CREATED A SOCIAL NETWORKING
SOFTWARE APPLICATION FOR MEMBERS
OF THE EXISTING TWO DIABETES
COMMUNITY, TU DIABETES.
TO CHART HEMOGLOBIN A-1C VALUES.
THE RESULTING TOOL TO ANALYZE
ALLOWS PEOPLE TO CONTRIBUTE
THEIR OWN DATA AND CONTROL WHO
HAS ACCESS TO IT.
JUST TO GIVE YOU A SENSE OF THE
SCALE SINCE THEY LAUNCHED, AS OF
YESTERDAY 2,114, TWO DIE BY
TEASE USERS ENTERED IN A-1C TO
ANALYZE.
65% OF 2 ANALYZE USERS SAY THEY
RECEIVE HELPFUL INFORMATION ON
HYPOGLYCEMIA FROM THEIR DOCTOR.
72% SAY THEY RECEIVE HELPFUL
INFORMATION ON THE TOPIC IN 2
DIABETES T SOCIAL NETWORK.
I LOVED THIS QUOTE FROM ONE OF
THE CHILDREN'S HOSPITAL
RESEARCHERS, MELISSA WHITESMEN.
SHE SAYS WE FOUND THIS VERY HIGH
LEVEL OF WHAT WE CALL
INFORMATION ALTRUISM.
PEOPLE ARE WILLING IN A PRIVACY
PRER SERVING MODEL TO MAKE
INDIVIDUAL DECISIONS HOW THEY
WERE GOING TO SHARE THEIR DATA.
TO ANALYZE OPENS THE DOOR
BETWEEN THE PATIENT'S SOCIAL
NETWORK AND THE CLINICAL
SETTING.
WHAT IF THAT DOOR WAS OPENED BY
A CLINICIAN WHO PRESCRIBED 2
ANALYZE TO HER PATIENTS?
WOULD THAT BRING PEER TO PEER
HEALTHCARE TO A NEW LEVEL?
MY SECOND EXAMPLE OF CLINICIAN
LEADERSHIP IS THE IMPROVED CARE
NOW NETWORK OF PEDIATRIC GASTRO
INTERROLOGISTS WHO SHOWED
COLLABORATION AMONG CLINICIANS
IMPROVE HEALTH OUTCOMES AMONG
CHILDREN AND ADOLESCENTS WITH
ULCER RAYTIVE COLITIS AND
KROHN'S DISEASE.
BY SHARING DATA AND IDEAS AS
WELL AS BUILDING A SYSTEM TO
SUPPORT TRANSLATING GOOD IDEAS
INTO PRACTICE.
CLINICIANS IMPROVED THE
REMISSION RATE FROM 49% TO 67%
WITH NO NEW DRUGS.
THE COLLABORATIVE CHRONIC CARE
NETWORK, C-3N SEEKS TO BUILD ON
IMPROVED CARE NOW'S SUCCESS BY
ADDING PATIENTS, FAMILIES, AND
RESEARCHERS TO THE CLINICAL
LEARNING SYSTEM.
BY ACKNOWLEDGING THE CRITICAL
ROLE THAT FAMILIES PLAY IN
KEEPING CHILDREN HEALTHY.
C-3N AIMS TO CONNECT SILOS OF
KNOWLEDGE THAT EXIST WITHIN THE
PATIENT'S HOME NETWORK AND THEIR
CLINICAL NETWORK.
BY THE WAY C-3N IS SUPPORTED BY
AN AWARD FROM THE NATIONAL
INSTITUTE OF DIABETES AN
DIGESTIVE AND KIDNEY DISEASES.
BEACON NUMBER 3, TECHNOLOGY
LEADERS OF THESE PEOPLE WHO MAKE
IT EASY AND EVEN FUN TO TRACK
HEALTH DATA AND CONNECT WITH
OTHER PEOPLE.
PATIENTS LIKE ME IS THE
APPROXIMATELY NAMED SERVICE THAT
HELPS PEOPLE TO CONNECT WITH
OTHERS WHO SHARE THEIR HEALTH
CONCERNS.
PATIENTS LIKE ME COLLECTS
SELF-REPORTED PATIENT DATA AND
HELPS PEOPLE MAKE DISCOVERIES
ABOUT HOW THEIR EXPERIENCES FIT
WITH THE LARGER PICTURE OF
HEALTH AND DISEASE.
IF YOU HAVEN'T BEEN TO THE SITE
RECENTLY IT'S BECOME EVEN MORE
ACCESSIBLE OPENING UP TO ALL
CONDITIONS AND TREATMENTS AND
CONTINUING TO HARNESS PEOPLE'S
INFORMATION ALTRUISM.
THIS OPEN SHARING HAS A WAY TO
COMMUNICATE WITH EACH OTHER AN
CLINICIANS AND IT'S A WAY FOR
RESEARCHERS TO OBSERVE
CONDITIONS AN TREATMENTS WORK IN
THE REAL WORLD.
A SIMPLER BUT JUST AS
REVOLUTIONARY EXAMPLE OF
TECHNOLOGY LEADERSHIP IS THE
BLUE BUTTON INITIATIVE CREATED
BY THE VETERAN'S ADMINISTRATION.
VED VET RANS USE THE VA PROGRAM
MY HEALTHY VET TO TRACK THEIR
BLOOD PRESSURE WEIGHT, HEART
RATE, CONTACT INFORMATION AND
OTHER HEALTH HISTORY DETAILS.
THE BLUE BUTTON PROJECT ALLOW IT
IS VETERAN TO DOWNLOAD A SIMPLE
CHART THAT CAN BE READ, PRINTED
OR SAVED WHILE MAINTAINING
CONTROL OF THE PERSONAL
INFORMATION.
IT IS A REALLY SIMPLE IDEA
THAT'S REVOLUTIONARY.
ONE SMALL STEP FOR MAN, ONE
GIANT STEP FOR DATA LIBERATION.
HERE MY QUESTION FOR YOU AS WE
GO INTO THE DISCUSSION.
WHAT IF ALL THE STORY TELLING
AND DISCUSSION AND DATA SHARING
THAT WE KNOW IS HAPPENING AMONG
PATIENTS AND CAREGIVERS COULD BE
CODED, ANALYZED AND HARVESTED
FOR INSIGHTS.
WHAT IF SOCIAL NETWORKING DATA
COULD ALLOW PUBLIC HEALTH
RESEARCHERS TO ENGAGE IN
SYNDROMIC SURVEILLANCE?
WHAT IF INSTEAD OF RUNNING
CLINICAL TRIALS ON PATIENTS,
SCIENTISTS RAN TRIALS WITH
PATIENTS?
WHAT IF PATIENTS OWN THE FACT WE
HAVE AS MUCH TO SHARE AND
CONTRIBUTE TO OUR HEALTH AS ANY
CLINICIAN HAS TO SHARE AND
CONTRIBUTE?
THE PEW INTERNET PROJECT FOUND
IF YOU ENABLE AN ENVIRONMENT IN
WHICH PEOPLE CAN SHARE, THEY
WILL.
THE BENEFITS OF THAT SHARING
WILL ENTICE OTHER PEOPLE.
THAT'S PEER TO PEER HEALTHCARE.
THANK YOU.
[APPLAUSE]
SO AS WE GO INTO DISCUSSION
PERIOD IF YOU COULD COME UP TO
ONE OF THE TWO MICROPHONES TO
ASK A QUESTION.
DOES ANYBODY HAVE A QUESTION
ABOUT ANY OF THE DATA?
GO AHEAD PLEASE.
IF YOU CAN COME UP TO THE
MICROPHONE, PLEASE.
SO IT SEEMS TO ME THE TECHNOLOGY
AND THE COMMUNITY ARE LEADING
THE PATIENT CARE (INAUDIBLE).
DO YOU THINK THE REGULATION IS
STANDING IN THE WAY OF SHARING
THE KNOWLEDGE BETWEEN PATIENT
AND PROFESSIONAL?
>> GREAT QUESTION.
ARE YOU ASKING ABOUT THE FEDERAL
REGULATION HAVING TO DO WITH
PRIVACY HIPAA?
>> YES.
>> YOU KNOW, IT'S VERY
INTERESTING QUESTION BECAUSE
WHAT WE SEE IS THAT FOR BETTER
OR WORSE OVER THE LAST TEN YEARS
THESE PATIENT COMMUNITIES HAVE
SPRUNG UP BECAUSE PATIENTS WANT
TO CONNECT WITH EACH OTHER.
AND IT STARTD ON EMAIL LIST
SERVES AND OLD SCHOOL BULLETIN
BOARD FORUMS.
NOW THERE'S FANCY SITES LIKE
ASPIRE.COM AND PATIENTS LIKE ME.
AND THESE EXIST FULLY OUTSIDE
THE CLINICAL SETTING SO THEY
HAVE NOTHING TO DO WITH HIPAA.
THEY CAN DO WHATEVER THEY WANT
ESSENTIALLY.
THEN THERE ARE THE CLOSED
SYSTEMS THAT SPRUNG UP IN A
CLINICAL SETTING.
AND THERE ARE POWERFUL WAYS THAT
PEOPLE ARE CONNECTING.
IN INTEGRATED CARE MODELS.
I THINK NAVIGATING AND
CONNECTING THOSE TWO, THAT'S
WHAT I'M REALLY EXCITED ABOUT
SEEING.
IT'S TRUE THAT HIPAA SCARES
PEOPLE FRANKLY.
I THINK THAT THERE'S ALSO A LOT
OF MISUNDERSTANDING ABOUT
HOWEVER HIPAA REACHES.
SO WHAT I AM ALWAYS INTERESTED
IN IS TO HEAR FROM PEOPLE LIKE
DEVIN MCGRAW, SENOR FOR OFFICE
AN TECHNOLOGY WHO ACTUALLY IS
ABLE TO TALK ABOUT HOW THESE TWO
WORLDS CAN BE CONNECTED EVEN
UNDER THE CURRENT HIPAA REG.
SO I THINK MOVING FORWARD THERE
MIGHT CONTINUE TO BE
REEVALUATIONS OF HIPAA AND
UPDATES TO IT BUT PEOPLE ARE
STARTING TO NAVIGATE UNDER
HIPAA.
THANK YOU FOR THE QUESTION.
>> HOW ARE YOU DOING.
THANK YOU.
I'M WONDERING -- (INAUDIBLE)
>> WE HAVE GOT FOLKS WATCHING ON
THE WEB CAM SO THEY'RE GOING TO
WANT TO --
>> TEST, 1, 2.
>> QUESTION FOR YOU.
HAVE YOU LOOKED AT ALL THE TYPES
OF MEDICAL AND HEALTH
INTERVENTIONS THAT ARE THE
SUBJECT OF THESE NEW KINDS OF
EXCHANGE?
I'M TALKING ABOUT WESTERN VERSUS
EASTERN MEDICINE, WESTERN VERSUS
COMP TEAR AN ALTERNATIVE.
I DON'T MEAN VERSUS.
IS THERE ANYTHING YOU CAN
COMMENT ON REGARDING THAT ASPECT
OF IT?
>> SO WHETHER PEER TO PEER
HEALTHCARE HAS ENTERED INTO THE
COMPLIMENTARY MEDICINE.
>> PEOPLE THAT ARE PARTICIPATING
IN USING THE ONLINE WIRELESS
TECHNOLOGIES FOR HEALTH
INFORMATION ACCESS AND EXCHANGE,
IS THAT MOSTLY WITHIN THE
WESTERN MEDICINE BOX OR ARE THEY
GOING OUTSIDE OR ARE THEY GOING
TO COMPLIMENTARY AND
ALTERNATIVE, EASTERN
TRADITIONAL, CHINESE, ET CETERA,
ET CETERA?
OR IS THAT YET A NEW AREA THAT
NEEDS TO BE EXPLORED?
>> GREAT QUESTION.
WE -- WE THE PEW INTERNET
PROJECT ASKED QUESTIONS ABOUT
WHETHER PEOPLE SEEK INFORMATION
ABOUT ALTERNATIVE TREATMENTS AND
EXPERIMENTAL TREATMENTS.
SO WE DO HAVE DATA WHICH LOOKS
AT THAT.
THERE'S ALWAYS A STRONG MINORITY
WHO USE THE INTERNET TO LOOK FOR
THAT INFORMATION.
IN TERMS OF BEACONS OF CHANGE
THESE ARE NOT NECESSARILY GROUPS
THAT WE HAVE DONE VARY WORK ON
BUT CURE TOGETHER IS ONE EXAMPLE
OF A PATIENT-DRIVEN RESEARCH
THAT BASICALLY THEY CONDUCT AS
THEY PUT IT N OF ONE STUDIES.
THEY ALLOW PEOPLE TO CONTRIBUTE
TREATMENTS FOR CERTAIN
CONDITIONS.
ONE OF MY FAVORITE ONES WAS ON
MIGRAINES.
THEY CHART HUNDREDS OF PEOPLE
CONTRIBUTE WHAT HELPS THEM DEAL
WITH THEIR MIGRAINES.
THEY CHART IN TERMS OF WHETHER
IT'S POPULAR, AND WHETHER IT'S
WELL KNOWN.
SO I DEFINITELY RECOMMEND
LOOKING AT CURE TOGETHER FOR AN
EXAMPLE OF THAT.
AND WHAT THEY FIND IS THAT SURE,
THE MEDICATIONS ARE DEFINITELY
HELPFUL.
BUT SO ARE ALTERNATIVE
TREATMENTS.
BUT OPENING UP THAT KNOWLEDGE
THAT REALLY OFTEN HAPPENS IN A
SOCIAL SETTING.
SURE YOU GO TO YOUR DOCTOR AND
YOU GET THAT PRESCRIPTION FOR
IMITREX OR WHATEVER WORKFORCE
YOU BUT YOU ALSO TALK TO YOUR
FRIENDS ABOUT HOW TO DEAL WITH A
MIGRAINE.
THAT'S DEFINITELY HAPPENING
ONLINE.
>> IF YOU DON'T MIND COMING TO
THE MICROPHONE, PLEASE.
>> HI.
MY NAME IS MARTHA DAWSON, I WORK
HERE AT NIH.
I HAVE HAD A LONG CAREER IN
HEALTHCARE, BACK TO 16 YEARS OF
AGE.
I MYSELF OVER MANY YEARS HAVE
MADE USE OF PEER TO PEER
INTERNET USAGE WITH RETINAL
ATTACHMENT I JOINED A GROUP THAT
WAS VERY HELPFUL.
I HAVE ALSO DURING MY CAREER
BEEN THE PRIVACY OFFICER AN
MENTAL HEALTH FACILITY.
I WANT TO PICK UP A LITTLE BIT
ON THE -- NOT SO MUCH A HIPAA
ISSUE BUT A POTENTIAL PITFALL
FOR PEOPLE WHO ARE USING PEER TO
PEER INTERNET USAGE.
I CAN USE AS AN EXAMPLE AT A
MENTAL HEALTH FACILITY WHERE I
WORKED THAT WAS AT RISK, IT WAS
A STATE FACILITY AT RISK OF
BEING CLOSED.
PARENTS OF ADOLESCENTS, CHILDREN
WERE GOING TO THE INTERNET TO
PEER TO PEER, POLITICAL,
WHATEVER, DISCUSS THEIR CONCERNS
FOR THEIR CHILD AND DISCLOSING
THAT THEY THEIR CHILD'S
IDENTIFICATION, SO MY CONCERN IN
MY QUESTION IS, THAT INFORMATION
OF COURSE IS OUT THERE.
IT'S GOING TO BE OUT THERE EVEN
WHEN THEY'RE ADULTS, WHEN
THEY'RE LOOKING FOR JOB, MAYBE
THEY WANT TO GO INTO POLITICS
AND ALL THAT INFORMATION,
THERE'S OTHER SENSITIVE
INFORMATION THAT PEOPLE SHARE IN
A TIME OF CRISIS, I HAVE DONE IT
MYSELF, YOU SHARE INFORMATION
THAT YOU WOULDN'T WANT TO
NECESSARILY DISCLOSE.
SO I THINK THAT I PUT IN THE
COLUMN OF POTENTIAL PITFALLS
THAT DO NEED PUBLIC AWARENESS
AND TEACHING OF PEOPLE ABOUT THE
SENSITIVITY OF WHAT'S OUT THERE.
>> THANK YOU SO MUCH THAT'S A
GREAT POINT.
I'LL TELL MY OWN STORY WHICH IS
WHEN I FIRST STARTED LOOKING AT
THIS AREA, (INAUDIBLE) FRIEDMAN,
FOUNDER OF ACOR.ORG, A FUG OF
KAREN ONLINE RESOURCES.
IT'S VERY -- CANCER RESOURCES.
IT'S SIMPLE LIST SERVE
TECHNOLOGY FOR PEOPLE LIVING
WITH CANCER.
AND THERE IS VERY INTENSE
SHARING PEOPLE ARE WILLING
BASICALLY AS THEY SAY, OUR LIVES
ARE ON THE LINE, THEY'RE WILLING
TO PUT THEIR WHOLE HEALTH
HISTORY ONLINE IN CASE SOMEBODY
SEES SOMETHING THAT CAN TRIGGER
ADVICE OR IN CASE IT WOULD HELP
SOMEONE ELSE.
AND HE SLUGGED AND -- SHRUGGED
AND SAID OUR POLICY IS THAT YOU
HAVE NO PRIVACY.
THAT'S AN EXAMPLE OF A COMMUNITY
THAT'S PART OF THE DEEP WEB.
IT'S EMAIL DISLERVE, ARCHIVED
AND PASSWORD PROTECTED.
SO THE GOOD NEWS IS THOSE 15
YEARS OF INSIGHTS ARE PART OF
THE DEEP WEB NOT SEARCHABLE BY
GOOG GOOGLE.
YET IT CAN BE SURFACED.
AND WHAT IS AMAZING TO SEE IS
HOW ARE CULTURE -- OUR CULTURE
IS CHANGING TO ABSORB ALL THIS
SHARING.
NOT MANY COULD HAVE PREDICTED
THAT WE WOULD -- THAT WE WOULD
WANT TO SHARE AS MUCH AS WE DO
ON SOCIAL MEDIA SITES.
AND SOME MORE THAN OTHERS.
IT'S A CONCERN THAT I THINK IS
ACTUALLY BROADER THAN
HEALTHCARE.
AND CERTAINLY IT'S SPECIFIC TO
HEALTH.
BUT IT'S SOMETHING THAT WE
REALLY NEED TO THINK ABOUT AS A
SOCIETY.
HOW ARE THINGS CHANGING TO
ABSORB ALL THE SHARING.
ONCE EVERYBODY IS COMPLETELY
PUBLIC DO WE NEED A POLICY THAT
YOU HAVE NO PRIVACY?
NOT SURE THAT MAKES SENSE.
ONE OF THE THINGS THAT WE HAVE
OBSERVED IS THAT PEOPLE IN
SURVEYS EXPRESS CONCERN ABOUT
PRIVACY, IF YOU ASK SOME
QUESTIONS ABOUT WHAT YOU WANT TO
SHARE WE ASK QUESTIONS ABOUT
WHAT DO YOU THINK IS KNOWN ABOUT
YOU ONLINE.
IT'S NOT OUR HEALTH SURVEYS BUT
SURVEYS BY DIGITAL IDENTITY.
PEOPLE DON'T KNOW WHAT'S
ACTUALLY AVAILABLE ABOUT THEM
ONLINE.
PEOPLE DON'T KNOW HOW FINEABLE
THEY ARE.
AND ACTUALLY BABY BOOMERS ARE
MOST LIKELY TO BE FINDABLE
ONLINE BECAUSE BOOMERS ARE LESS
LIKELY FOR EXAMPLE THAN MY
LENIALS TO HAVE A LAND LINE, TO
BE AT THE SAME HOME ADDRESS OVER
TEN YEARS.
MY LENIALS ARE IS SAVVY ABOUT
CLOUDING WHO THEY ARE ONLINE SO
WE HAVE THIS DISCONNECT BETWEEN
GENERATIONS AND BETWEEN PEOPLE
WHO SAY BE CAREFUL AND OTHER
WHOSE SAY LET THE DATA FLOW.
SO IT'S A QUESTION WE NEED TO
THINK ABOUT MORE DEEPLY.
>>
(OFF MIC)
>> YOU HAVE TO GET CLOSE TO IT.
>> I'M A MAN SO I DON'T LIKE TO
ASK DIRECTIONS.
ONE REASON I DONE LIKE TO ASK
DIRECTIONS IS THAT IN MY
EXPERIENCE MOST OF THE TIME WHEN
I ASK DIRECTIONS THE DIRECTIONS
I GET ARE WRONG.
HAS ANYBODY DONE ANY OUTCOME
STUDIES PEER TO PEER HEALTH
SUPPORT?
>> GREAT QUESTION.
WE HAVE NOT DONE STUDIES LOOKING
AT PEER TO PEER BUT ABOUT EVERY
TWO YEARS PUT A SURVEY IN THE
FEEL ABOUT HEALTH WHERE WE ASK
PEOPLE ABOUT WHETHER THEY KNOW,
WHETHER THEY OR SOMEONE THEY
KNOW HAS BEEN HELPED BY ONLINE
RESOURCES OR WHETHER THEY HAVE
BEEN HARMED.
THE PERCENTAGE OF AMERICAN
ADULTS WHO HAVE BEEN HELPED, HAS
FLUCTUATED.
IT'S BETWEEN ONE-THIRD OR MORE
PEOPLE WHO SAY THEY HAVE BEEN
SIGNIFICANTLY HELPED BY HEALTH
INFORMATION FOUND ONLINE.
HARMED HAS BEEN A FLAT LINER AT
3%, THAT'S FROM THE FIRST TIME
WE ASSAYED IN YEAR 2002 I
BELIEVE.
SO THERE ARE PEOPLE WHO SAY THEY
OR SOMEONE THEY KNOW HAS BEEN
HARMED BY INFORMATION THEY FIND
ONLINE BUT IT'S QUITE LOW.
IT'S JUST 3%.
THERE ARE STUDIES THERE ARE
JOURNALS TRACKING THIS, THE
JOURNAL OF PARTICIPATORY
MEDICINE IS TRACKING IT, THE
JOURNAL OF MEDICAL INTERNET
RESEARCH IS TRACKING THESE
STUDIES.
SO IT'S DEFINITELY OF USE FOR
PEOPLE TO START ASKING PEOPLE
ABOUT WHERE THEY GET THE
INFORMATION.
SO WE CAN START QUANTIFYING
WHETHER THE GOOD INFORMATION OR
BAD INFORMATION IS COMING FROM
ONLINE RESOURCES OR OFFLINE
RESOURCES.
YOU CAN GET BAD HEALTH ADVICE
OFFLINE.
BUT AGAIN, THE INTERNET MAKES IT
FASTER AND MAKES IT A WIDER
NETWORK THAN EVER BEFORE.
>> I HAVE TWO QUESTIONS.
YOU TALKED ABOUT INDIVIDUALS
WITH CHRONIC DISEASES AND I WAS
WONDERING IF YOU COULD TALK
ABOUT INDIVIDUALS WITH RARE
DISEASES AND HOW THEY MAKE USE
OF SOCIAL NETWORKS AND TOOLSCH
THEN NUMBER 2, WITH RESPECT TO
PEOPLE USING MOBILE, DO YOU HAVE
ANY DATA ON THE TYPES OF HEALTH
TOPICS AND TYPES OF INFORMATION
THAT PEOPLE ARE SEARCHING FOR
WITH MOBILE TECHNOLOGY AS
OPPOSED TO TYPICAL DESK TOP
TECHNOLOGY?
>> THANK YOU SO MUCH.
GREAT QUESTION.
THE STUDY THAT WAS TITLED PEER
TO PEER HEALTHCARE WAS A
COMBINATION OF AN RDD PHONE
SURVEY AND SURVEYS OF
COMMUNITIES OF PEOPLE LIVING
WITH RARE DISEASE.
WHAT WE DID FOR THAT SURVEY WAS
ASK PEOPLE TO TELL STORIES.
IT WAS NOT ANYTHING THAT WE
COULD QUANTIFY NECESSARILY.
BUT WE GOT INCREDIBLE STORIES AB
PEOPLE LIVING WITH RARE DISEASE.
AND THAT'S ACTUALLY HOW I MET
KATHERINE CALHOUN WHO WAS ONE OF
THE PATIENT LEADERS I TALKED
ABOUT.
WHEN I STARTED DOING ANALYSIS OF
THE RARE DISEASE COMMUNITY
RESPONDENTS, I HAVE TO ADMIT
THAT I SPENT QUITE A BIT OF TIME
DOING ANALYSIS AT HOME, BECAUSE
I NEEDED TO CRY SO OFTEN.
I LOVE MY COLLEAGUES BUT I'M NOT
READY TO SIT IN MY OFFICE AND
LET THE TEARS FLOW.
THAT IS AND WHAT WAS SO MOVING
ABOUT DOING THAT ANALYSIS IS
PEOPLE WHO SEE THE INTERNET AS A
LIFELINE, A LOT OF PEOPLE LIVING
WITH RARE DISEASE WHO MIGHT HAVE
NEVER MET ANYBODY WITH THEIR SAM
CONDITION THEY CAN TALK ONLINE
WITH HUNDREDS OF PEOPLE WHO HAVE
THE SAME CONDITION.
THEY'RE ABLE TO SHARE SERIOUS
CLINICAL INFORMATION,
SIGNIFICANT INFORMATION, THEY'RE
ABLE TO SHARE TIPS ABOUT WHERE
TO GET TREATMENT, SOME OF THE
INCREDIBLE STORIES WERE MOMS OF
KIDS OF BABIES WHO HAVE
DIGESTIVE ISSUES.
THOSE MOMS TOLD ABOUT HOW A
DOCTOR OR NURSE CAN'T TELL
PHYSICIANS A BABY HOW TO FEED
THEM BETTER THAN A MOM COULD.
THERE ARE NOT ONLY DISCUSSION
FORUMS BUT ONLINE VIDEOS.
WHERE YOU CAN GET INFORMATION
ABOUT EXACTLY HOW TO TAKE CARE
OF YOUR CHILD OR LOVED ONE.
WHAT WAS INCREDIBLE IS TO HEAR
HOW THERE WAS A CERTAIN FAMILY
IN THIS RARE CONDITION IS PASSED
DOWN AND THEY HAVE OVER A
HUNDRED YEARS OF KNOWLEDGE
LIVING WITH THIS RARE CONDITION,
IT WAS PASSED DOWN GENERATION TO
GENERATION.
BUT INSTEAD OF KEEPING THAT
KNOWLEDGE SILOED IN THE FAMILY,
THEY'RE ABLE TO SHARE WITH
EVERYONE.
THE MIND BOGGLES WHEN YOU THINK
ABOUT THE POTENTIAL OF THIS FOR
RARE DISEASE.
THEY'RE REALLY THE SUPER HEROES
OF PEER TO PEER HEALTHCARE.
I'M REALLY INSPIRED BY THEM.
LOOKING AT MOBILE, BEFORE I TELL
YOU THE TOPICS LET ME DESCRIBE
THE PEOPLE MOST LIKELY TO BE
USING MOBILE.
18 TO 29-YEAR-OLDS ARE MOST
LIKELY TO HAVE MOBILE ACCESS,
LIKELY TO USE THEIR SMART PHONE
AS THE MAIN SOURCE OF
INFORMATION.
ALWAYS ON, ALWAYS WITH YOU
INTERNET.
WOW.
PEOPLE ON THE WEBCAST SOMEBODY
JUST TURNED ON A COMPUTER AND IT
WAS SUPER LOUD.
THIS IS YAHOO DATA NOT PEW
INTERNET DATA.
BUT YAHOO LOOKED AT TYPES OF
INFORMATION PEOPLE LOOK FOR ON
THEIR MOBILE PLATFORM VERSUS
THEIR WEB PLATFORM.
SEXUAL HEALTH INFORMATION IS ON
THE MOBILE PLATFORM.
IT WAS PREGNANCIES, PREGNANCY
INFORMATION STD INFORMATION
VERSUS ON THE WEB IT'S MORE OF
YOUR GENERAL HEALTH CONCERNS
THAT YOU WOULD EXPECT.
I GAVE A TALK A COUPLE OF YEARS
AGO TO UNDERGRADUATES AND IT WAS
A BIG HE LECTURE HALL, FRANKLY MOST
WERE NOT PAYING ATTENTION TO ME.
THEY HAD THEIR LAPTOPS OPEN AND
THAT WAS FINE.
I KNEW THAT I WOULD REACH A FEW
OF THEM.
WITH THE DATA BUT YOU CAN
IMAGINE THEIR ALL HEADS DOWN
TYPING UNTIL I GOT TO THE POINT
WHERE I WAS DESCRIBING HOW
AIDS.GOV DID ANALYSIS OF WHEN
THEY GET THE MOST TRAFFIC AND
WHAT THE PEOPLE ARE SEARCHING
FOR, IT'S THE MIDDLE OF THE
NIGHT OOPS MOMENTS THAT PEOPLE
ARE SEARCHING FOR INFORMATION
ABOUT HIV.
ALL OF A SUDDEN ALL 100 HEADS
LOOKED UP AT ME.
I SUDDENLY HAD THEIR COMPLETE
ATTENTION.
THAT'S ACTUALLY A GREAT EXAMPLE
OF A FEDERAL AGENCY THAT LOOKED
AT HOW PEOPLE WERE ARRIVING AT
AIDS.GOV.
THEY WEREN'T LOOKING FOR POLICY
PRESCRIPTIONS, THEY WERE LOOKING
FOR BASIC INFORMATION.
ABOUT HIV TRANSMISSION.
SO AIDS.GOV WAS ABLE TO REALLY
CHANGE THEIR WEBSITE TO RESPOND
TO THE PUBLIC.
BECAUSE THEY DID COME UP FIRST
IN A LOT OF SEARCH RESULTS.
ANOTHER QUESTION?
>> HI.
I WAS WONDERING IF THERE'S BEEN
ANY INVESTIGATION INTO PEER TO
PEER HEALTHCARE SHARING PATHWAYS
IN OTHER COUNTRIES AROUND THE
WORLD, ESPECIALLY COUNTRIES WITH
DIFFERENT USAGE PATTERNS IN
TERMS OF WIRELESS ADOPTION AND
LARGER AGE GAPS.
>> GREAT QUESTION.
THERE WAS A HEALTH 2.0
CONFERENCE LAST SPRING IN PARIS
AND THERE WAS REPRESENTATION
FROM ALL OVER THE EU AN
PRESENTATIONS MADE.
I ACTUALLY SHOULD SAY, I'M GOING
TO PUT THE NOTES FROM WHAT I
SAID WITH LINKS TO ALL THE
ARTICLES THAT I CITED SO IF
YOU'RE INTERESTED YOU CAN DIG
DEEPER AND I'LL ADD LINKS TO
HEALTH 2.0 EUROPE BECAUSE THE
PRESENTATIONS ARE ON THE HEALTH
2.0 SITE.
TWO COUNTRIES THAT I LOOK TO FOR
INSPIRATION FOR WHERE THE FUTURE
COULD GO ONE IS DENMARK, OTHERS
IS THE NETHERLANDS.
DENMARK IS LIVING IN THE FUTURE.
LET'S JUST -- YOU KNOW, GET THE
CAVEAT OUT OF THE WAY, THEY'RE A
TINY COUNTRY EXTREMELY DIFFERENT
FROM US.
THEIR HEALTHCARE SYSTEM IS
EXTREMELY DIFFERENT FROM OURS.
THEY HAVE UBIQUITOUS INTERNET
ACCESS AND UBIQUITOUS ELECTRONIC
MEDICAL RECORDS AND THEY DO IN
FACT HAVE CLINICAL INTEGRATION.
BOTH DENMARK AND NETHERLANDS
WHICH IS SIMILAR FRANKLY IN
TERMS OF THEIR HEALTHCARE SYSTEM
AND THE SIZE OF THEIR COUNTRY
AND THE WAY THEY'RE INTEGRATED
WITH THE CLINICAL SETTING, BOTH
OF THOSE COUNTRIES CAME TO THE
CONFERENCE AND FOLLOWED UP WITH
VISITS TO THE UNITED STATES
BECAUSE THE U.S. IS AHEAD IN
TERMS OF THAT INDIVIDUALISTIC
AMERICAN SPIRIT OF I'M GOING TO
HELP MYSELF, I'M GOING TO
CONNECT WITH OTHER PATIENTS.
AND SO THAT'S WHAT I'M REALLY
INTERESTED IN LOOKING AT, THE
DIFFERENCE BETWEEN THE EUROPEAN
MODEL WHERE IT'S -- THE
RESOURCES FOR HEALTHCARE ARE
VERY DIFFERENT THAN THEY ARE
HERE, WHEREAS IN THE UNITED
STATES THERE IS THIS SENSE OF
EMPOWERMENT AND UP WITH PATIENTS
THAT IS HAPPENING IN EUROPE BUT
NOT TO THE SAME DEGREE.
SO THOSE ARE THE TWO PLACES THAT
I KNOW THE MOST.
I WOULD BE REALLY INTERESTED IF
OTHER PEOPLE HAVE OBSERVATIONS
OR MORE INTERNATIONAL
PERSPECTIVE ON THAT.
>> HI.
BOB GOLD.
JUST WANT TO ADD A LITTLE BIT.
THAT IS IN AFRICAN AND INDIAN
AREAS SUBSTANTIAL USE OF MOBILE
TECHNOLOGIES CURRENTLY IN USE AS
YOU KNOW, BUT MORE POPULATION
BASED APPLICATIONS.
TRYING TO DEAL WITH DELIVERING
SERVICES IN REMOTE AND RURAL
AREAS, TAKES ON A DIFFERENT
FOCUS THAN THE INDIVIDUAL
REACHING OUT FOR ASSISTANCE,
IT'S A SYSTEM DELIVERING
ASSISTANCE TO LARGER GROUPS OF
PEOPLE.
THE RECENT UN PUBLICATION ON
MOBILE TECHNOLOGIES AND
DEVELOPMENT IS SOMETHING
EVERYBODY OUGHT TO READ ABOUT.
UN COMPLETED A 92 NATION SURVEY
REGARDING UTILIZATION OF MOBILE
TECH NOTHINGS FOR HEALTH.
>> I -- TECHNOLOGIES FOR HEALTH.
>> I HAD A SLIDE ABOUT SMALL
SCREENS VERSUS BIG SCREENS.
LOOK AT THE U.S., CLEAR THEY'S
THE CASE IN ASIA, AFRICA, IND
INDIANAIA, ET CETERA.
-- INDIA.
ET CETERA.
>> I WANTED TO GO BACK TO YOUR
CLOSING STATEMENT ABOUT DOING
CLINICAL TRIALS WITH PATIENTS
INSTEAD OF I THINK YOU SAID ON
PATIENTS.
THAT IS A LIKE I STOLE.
>> I WAS CURIOUS, I CERTAINLY
SEE THE BENEFITS OF PATIENTS
INTERACTING AND SHARING
INFORMATION BUT WHEN YOU'RE IN A
CLINICAL TRIAL I'M WONDERING IF
THERE'S DETRIMENT TO PEOPLE
SHARING INFORMATION TRYING TO
FIGURE OUT IF THEY'RE ON
STANDARD TREATMENT OR THE
EXPERIMENTAL TREATMENT AND MAYBE
REACHING OUT FOR SOME
ALTERNATIVE TREATMENTS BECAUSE
THEY THINK THEY'RE ON THE
EXPERIMENTAL ONE AND IT'S NOT
WORKING OR EVEN THE STANDARD ONE
NOT WORKING AND I WONDERED AND
IF YOU HAVE INSIGHTS INTO THAT.
>> FANTASTIC QUESTION.
WE HAVE NOT DONE STUDIES LOOKING
AT THAT DIRECTLY.
WHAT I CAN SAY IS FROM DOING
FIELD WORK IN PATIENT
COMMUNITIES OVER THE LAST TEN
YEARS, ONE OF THE FIRST INSIGHTS
THAT WE GOT FROM FIELD WORK WE
DID IN A PATIENT COMMUNITY IF
SOMEONE SAID WE'RE LIKE LAB RATS
TAPPING ON CAGES.
AND THE LESSON I TAKE FROM IT IS
THAT PEOPLE HAVE ALWAYS TALKED
WITH EACH OTHER IF THEY CAN, ONE
CLINICAL SETTING WHERE PATIENTS
ARRIVE EARLY TO SEE IF THEY GET
A CHANCE TO SEE SOMEBODY ELSE
WITH THE SAME CONDITION, NOW
THEY CAN DO IT ONLINE.
IT CAN BE A DOUBLE EDGE SWORD
BECAUSE THE MAJOR CLINICAL
TRIALS IS RECRUITMENT.
SO YOU HAVE THE OPPORTUNITY
WHERE PEOPLE WITH RARE
CONDITIONS OR PEOPLE WITH
CHRONIC CONDITIONS OR IF PEOPLE
KNOW ABOUT THE ARMY OF WOMEN
WHERE PEOPLE ARE RECRUITED INTO
BREAST CANCER TRIALS.
HERE IS AN OPPORTUNITY FROM
WHERE NETWORK IS DOING THE
RECRUITMENT AND THERE'S
SOMETHING REALLY POWERFUL ABOUT
THAT.
AND IS IT JUST SOMETHING
RESEARCHERS HAVE TO GET USED TO?
POSSIBLY.
IS THERE A DOWN SIDE TO IT?
POSSIBLY.
IS THERE A BENEFIT TO IT?
POSSIBLY.
SO ONE OF THE THINGS THAT I RELY
ON IS THAT I AM I SOMETIMES CALL
MYSELF AN INTERNET GEOLOGIST
BECAUSE WHAT I CAN DO FOR YOU IS
TELL YOU WHERE THE LANDSCAPE IS
AND WHERE I SEE AN EARTHQUAKE
COMING AND I CAN'T TELL YOU WHAT
TO DO ABOUT IT.
BUT I CAN TELL YOU THAT IT'S
COMING.
SO THAT'S WHAT I WOULD SAY ABOUT
THE CLINICAL TRIALS CHALLENGE,
THAT WE HAVE PATIENTS WHO ARE
DEEPLY INTERESTED AND
CONTRIBUTING.
THERE'S NOT ONLY INFORMATION
ALTRUISM, THERE'S TRUE ALTRUISM.
IN GIVING UP WHAT YOU CAN FOR
THE BETTERMENT OF SOCIETY AND
THE BETTERMENT OF SCIENCE.
AND WHAT CAN WE GIVE BACK TO THE
PATIENTS.
>> HI.
I WORK AT NIH AND I'M ALSO A
CYSTIC FIBROSIS PATIENT HERE AT
THE NIH.
FOR ME THE PEER TO PEER
LANDSCAPE IS FANTASTIC BECAUSE
IN MY CONDITION WE'RE NOT
SUPPOSED TO GET CLOSE TO EACH
OTHER AND MEET UP FREQUENTLY TO
TALK.
SO TO SEE OUR COMMUNITY ONLINE
IS VIBRANT.
I WAS WONTDING ARE IF THERE'S
EVIDENCE IN YOUR WORK THAT RARE
SYMPTOMS OR PROBLEMS ONLINE ARE
I CAN MAG THEIR WAY TO CLINICAL
RESEARCH AND TRIALS AND IF NOT
HOW IN A PATIENT COMMUNITY CAN
WE GET THERE AND IF THERE'S
ANYONE WHO HAS POWER, CASING AND
TOLERANCE AND CS I THINK IS A
REAL PROBLEM THAT'S NOT BEEN
STUDIED.
>> THANK YOU VERY MUCH.
THAT IS A GREAT POINT.
THAT IS PERFECT FOR ENTERNED
COMMUNITIES.
I HAVE SEEN EXAMPLES WHERE
PEOPLE ARE STARTING TO LOOK AT
PATIENT NETWORKS.
AND WHAT IS HEARTENING IS TO SEE
THIS IS HAPPENING IN THE DOT COM
WORLD.
THERE'S A LOT OF INTEREST IN THE
DOT COM WORLD AND ALSO INTEREST
IN OUR WORLD IN DC IN TERMS
OF.GOV AS WELL AS ENDOWED WORK.
SO I THINK THAT -- I WOULD BE
INTERESTED IN THE LITERATURE TO
SEE WHAT IS DONE SO FAR AND WHAT
-- BECAUSE I KNOW SOME STUDIES I
THINK IT WOULD BE USEFUL IT'S
ALREADY DONE PLEASE LET ME KNOW.
HELP YOU BRING TOGETHER WHAT'S
BEEN DONE SO FAR AS AN EXAMPLE
FOR OTHERágé PATIENT COMMUNITIES.
I DO KNOW THAT THEY'RE THE LIFE
APT COMMUNITY IS ONE EXAMPLE IN
THE CANCER WORLD WHO THROUGH THE
ADVOCACY OF PATIENT COMMUNITY
WAS ABLE TO PUSH FORWARD
PHARMACEUTICAL COMPANIES
DEVELOPMENT OF WHAT TURNED OUT
TO BE GLEVAK.
AND SO THAT'S ONE OF THOSE SORT
OF RALLYING STORIES FOR A LOT OF
PATIENT COMMUNITIES, THAT THERE
IS THE OPPORTUNITY TO SAY, THIS
WAS BY THE WAY A VERY, VERY
SMALL CLINICAL TRIAL.
AND THE PATIENTS -- THIS
HAPPENED MORE THAN TEN YEARS
AGO, A VERY SMALL CLINICAL TRIAL
THAT SHOWED SUCH PROMISE
PHARMACEUTICAL COMPANY IS
ABANDONING THE DRUG FOR VARIOUS
REASONS AND I'LL LIK LINK TO THE
ARTICLE THAT SHOWS US IT'S A
LINK IN CANCER 2.0.
AND THEY WERE ABLE TO
SUCCESSFULLY LOBBY FOR THIS DRUG
TO GO FORWARD AND THIS CERTAIN
KIND OF CANCER IS CERTAINLY A
CHRONIC CONDITION AS LONG AS WE
STAY ON THE DRUG.
>> I DO -- I'M WORKING ON AN
OUTREACH CAMPAIGN TO FAMILY
CAREGIVERS.
I WAS WONDERING IF YOU'RE LOOK
AT INFORMATION SHARING, WHAT YOU
MIGHT HAVE TO ADD ABOUT THE
DISTINCTION AND TYPES OF
INFORMATION SHARED THAT IS
CONDITION-SPECIFIC AND THEN
TYPES OF INFORMATION THAT SPANS
CONDITIONS LIKE IN MY RESEARCH
WITH CAREGIVERS, SOME THINGS ARE
WOUND CARE, VERY IMPORTANT.
DISCHARGE PLANNING.
HOME CARE.
AND ALSO MEDICATION MANAGEMENT.
I WAS WONDERING IF YOU HAD
ANYTHING TO ADD ABOUT THE
DIFFERENCES.
AND IF YOU TRACK THAT.
>> GREAT QUESTION.
WE HAVE AN EVER CHANGING LIST OF
TOPICS WE ASK PEOPLE ABOUT AND
ASK WHETHER THEY HAVE GONE
ONLINE TO LOOK FOR INFORMATION
ABOUT THOSE TOPICS.
AND WE HAVE ADDED SOME THINGS
LIKE LONG TERM PLANNING AND END
OF LIFE CARE HAVE SOME SUMMARY
CHARTS AND HELP TOPICS ALSO HAS
SUMMARY CHARTS OF THE QUESTIONS
WE ASKED OVER THE YEARS.
ACTUALLY I USUALLY ESPECIALLY ON
THE ePATIENTS.NET BLOG TO
SUGGEST TOPICS, THAT'S WHERE I
GOT THE END OF LIFE CARE TOPIC
TO BE ADDED TO THE 2010 SURVEY.
SO I INVITE PEOPLE ACTUALLY TO
EMAIL ME SUGGESTIONS.
I WOULD BE REALLY INTERESTED TO
HEAR WHAT TOPICS ARE WE MISSING
FROM THE LIST AND I'M ACTUALLY
REALLY INTERESTED IN DOING A
SPECIAL CARE GIFERS' REPORT.
WE HAVE TONS OF DATA BECAUSE WE
HAVE ASKED THAT CAREGIVER
QUESTION.
SO IF YOU WANT THE TALK
AFTERWARDS I WOULD BE HAPPY TO
PROVIDE MORE DATA.
>> HI, SUSANNAH.
STEPHANIE DAILY WITH NIH SENIOR
HELP WEBSITE.
THANK YOU SO MUCH FOR THAT
WONDERFUL PRESENTATION.
AND FOR THOSE INCITES.
I HAVE A QUESTION RELATING TO
OLDER ADULTS.
ONE THING YOU SAID DURING YOUR
PRESENTATION WAS THAT CHRONIC --
PEOPLE WITH CHRONIC CONDITIONS
SEEM TO USE SOCIAL MEDIA A LOT,
OLDER ADULTS HAVE CHRONICKENS
BUT DONE SEEM TO BE HEAVY USERS
OF IT.
CAN YOU SAY MORE ABOUT THAT, WHY
YOU THINK SOME OF THE REASONS
ARE AND IF THERE'S REASONS --
ANY WAYS YOU SEE THAT CHANGE
SOMETHING AND THE SECOND
COROLLARY QUESTION, BOOMERS HAVE
MOVED INTO THE OVER 60 CATEGORY.
SO THEY'RE NOW OLDER ADULTS.
YET PEOPLE, THEY'RE DIFFERENT
FOR PEOPLE WHO ARE 70 AND OLDER
AND 8 O AND OLDER.
DIFFERENCES IN PEER TO PEER
USAGE, INTERACTION BETWEEN
BOOMERS AN OLDER ADULT?
>> ABSOLUTELY.
THANK YOU FOR THAT QUESTION.
BOOMERS ARE TRANSFORMING THE
SENIOR DEMOGRAPHIC FROM THE
BOTTOM UP.
WE SEE THIS WAVE OF INTERNET
ACCESS.
IF YOU LOOK AT AGE GROUPS IN A
CLIP, NOW IT'S MOVE MOVING UP,
DEFINITELY AGE 70 AND REALLY
MOVING UP, AND FOLKS WHO ARE
OFFLINE.
THE BABY BOOMER WAVE IS REALLY
TRANSFORMING THAT POPULATION BUT
WE HAVE HARD CORE OF PEOPLE
TRULY OFFLINE IN THEIR LATE
'70s, 80s, 90s.
AN OPPORTUNITY -- IT'S
INTERESTING.
A LOT OF THESE FOLKS HAVE CELL
PHONES, THESE MIGHT NOT BE
PEOPLE USING THEM FOR TEXT
MESSAGING BUT IFmsñ THERE'S SOME
APPLICATION THAT CAN BE A VOICE
ACTIVATED CALL IN SERVICE,
THAT'S THE KIND OF THING THAT
THE CELL PHONE IS ABLE TO DO AND
I HAVE TO SAY DON'T FORGET TO
MAKE IT EASY TO PRINT OUT
BECAUSE THAT SNEAKER NET IS
STILL A NETWORK AFFECT, SNEAKER
NET MEANING THAT YOU WOULD HAVE
TO GET UP AND WALK TO YOUR DESK
OVER TO THE PRINTER, I DON'T
KNOW IF ANYBODY REMEMBERS THAT
FROM WAY BACK WHEN.
IN TERMS OF THE USE OF SOCIAL
MEDIA FOR HEALTH, IT'S A REALLY
IMPORTANT CAVEAT TO SAY THAT
ONCE SOMEONE IS ONLINE AND THEY
HAVE A CHRONIC CONDITION, THAT'S
WHEN THE DIAGNOSIS DIFFERENCE
KICKS IN.
IT'S THAT ONCE SOMEONE IS
ONLINE, WHICH IS ALWAYS WHY I
LEAD AT THE BEGINNING WITH THE
FACT THAT ONLY 62% OF PEOPLE
LIVE WITH CHRONIC CONDITION HAS
ACCESS TO THE INTERNET.
SO LOOKING AHEAD WE'LL CONTINUE
TO SEE THE DEMOGRAPHIC CHANGE
AND SHIFT HAPPENING.
BUT ONCE SOMEONE IS ONLINE, AGE
BECOMES LESS OF A FACTOR,
ESPECIALLY WITH CHRONIC
CONDITIONS.
AND THIS IS ALSO WHERE WE SEE
HAPPENING IN OTHER SECTORS
PORTING OVER TO HEALTH.
THERE ARE LOTS OF SENIORS WHO
JOINED FACEBOOK TO BE ABLE TO
SEE PICTURES OF THEIR
GRANDCHILDREN.
HOW CAN THAT BE LEVERAGED FOR
HEALTH?
OR DO WE WANT IT TO BE?
OR DO WE WANT SOMETHING
DIFFERENT TO HAPPEN?
SO THOSE ARE THE SORTS OF
THINGS, IT'S IMPORTANT THE LOOK
AT NOT JUST OUR HEALTH DATA BY
THE BROAD PORTFOLIO OF WHAT
OLDER ARE DOING ONLINE.
WE HAVE A SERIES OF REPORTS
CALLED GENERATIONS ONLINE WHICH
COULD BE VERY USEFUL.
YES.
>> HI, CATHY CAMP.
THANK YOU, THAT WAS AN EXCELLENT
DISCUSSION.
MY QUESTION HAS TO DO -- TO GET
BACK TO SOME OF THE OUTCOME
ISSUES THAT WERE BROUGHT UP BY
THE GENTLEMAN IN THE FRONT ROW.
IS THERE DATA THAT PEER TO PEER
HEALTH EXCHANGE ACTUALLY DELAYS
PEOPLE FROM SEEKING HEALTHCARE
FROM A HEALTHCARE PROFESSIONAL,
NUMBER ONE, NUMBER TWO, HAVE YOU
ACCUMULATED OR ASKED WHAT
PERCEPTIONS OF OF PEER TO PEER
BENEFITS AN EXCHANGE?
>> GREAT QUESTION.
WE HAVE A CHALLENGE DOING
TELEPHONE SURVEYS THAT WE CAN'T
GET THE DETAILS THAT.
s THE ANONYMIZED DATA THAT WE
HAVE.
ONE WAY THAT WE TRY TO GET
AROUND OR ACCOUNT FOR THAT IS TO
ASK PEOPLE ABOUT THE LAST TIME
THEY NEEDED HEALTH INFORMATION.
IN A SURVEY HELPS THEM TO
REMEMBER SOMETHING SPECIFIC SO
WE ASKED THE LAST TIME YOU HAD A
SIGNIFICANT HEALTH QUESTION WHO
DID YOU TURN TO.
THE OVERWHELMING MAJORITY TURNED
TO A HEALTH PROFESSIONAL.
WE SEE THAT CUTTING ACROSS
WHETHER SOMEONE HAS HEALTH
INSURANCE OR NOT.
PEOPLE DO WANT TO TALK WITH A
HEALTH PROFESSIONAL WHEN THEY
NEED A DIAGNOSIS AND WHEN THEY
HAVE A SIGNIFICANT QUESTION.
SO WE HAVE NOT WE DON'T HAVE
EVIDENCE EITHER WAY ABOUT
WHETHER THEY DELAY TREATMENT.
THAT WOULD BE A VERY INTERESTING
QUESTION TO ASK.
IN REGARDS TO CLINICS, THE PEW
INTERNET PROJECT FOCUSES ON
GENERAL POPULATION CONSUMER
SURVEYS, WE HAVE NOT DONE
SURVEYS OF CLINICIANS.
THERE ARE ORGANIZATIONS WHO HAVE
MANHATTAN RESEARCH.
I THINK IT WOULD BE INTERESTING
TO ASK SOME OF THESE SOCIAL
IMPACT QUESTIONS OF CLINICS
BECAUSE OFTEN SINCE THE
ORGANIZATIONS THAT ARE DOING THE
CLINICIAN RESEARCH ARE FOR
PROFIT ENTITIES THEY HAVE A
DIFFERENT ORIENTATION THAN A
NON-PROFIT ENTITY, IT WOULD BE
WONDERFUL TO ASK SOME OF THOSE
QUESTIONS.
FRANKLY WE DON'T HAVE THE
BUDGET.
CLINICIANS OFTEN WANT TO BE PAID
FOR THEIR TIME.
IN DOING SURVEYS (INAUDIBLE)
INFORMATION.
ONE OF THE ISSUE IS THAT THE
FEARS OR CONSEQUENCES THEY HAVE
BEEN DENIED INSURANCE IN THE
WORKPLACE, SO SHOWING THE
PATIENT OR THE INDIVIDUAL THAT
THERE'S NO FEAR THAT'S NORMAL.
THE DEGREE OF FEAR IS DEPENDING
ON WHO (INAUDIBLE) COMMUNITY AND
AMONG THE RARE DISEASE COMMUNITY
AS YOU REALIZE YOURSELF THEY
ACTUALLY HAVE ONE ANONYMIZED.
THEY WANT TO BE OUT THERE SO
PEEP WILL KNOW THEM.
I THINK EDUCATION SHARING MORE
INFORMATION.
>> THANK YOU VERY MUCH, THAT
WOULD BE A VOTE FOR REGULATION
AS AN OPPORTUNITY AND AN
OPPORTUNITY FOR THAT ROADBLOCK
IS THAT FEAR OF ENGAGEMENT,
THANK YOU.
>> THE QUESTIONS ABOUT THE
DIFFERENT AGE CATEGORIES AND
SINCE WE HAVE SO MANY
COMMUNICATEORS IN THE ROOM AND
QUESTION RESOURCES.
IF WE HAVE THE 18 TO
29-YEAR-OLDS WHO ACCORDING TO
YOUR INCIDENTAL DATA ARE MOST
INTERESTED IN SEX, AND THE
CAREGIVER -- THE CAREGIVER
POPULATION FOR MANY CHRONIC
CONDITIONS CERTAINLY NOT ALL,
NOT TRYING TO PUT EVERYBODY IN
THE SAME BASKET, BUT SEVERAL
CHRONIC CONDITIONS ARE OF THE
OLDER POPULATION SO THE
CAREGIVERS WILL LIKELY BE THE
PARENTS OF THOSE 18 TO
29-YEAR-OLDS.
CERTAINLY PEOPLE WITH CHRONIC
CONDITIONS FALL MORE INTO THAT
CATEGORY OF NOT USING, THEY
DISPROPORTIONATELY AFFECT
AFRICAN AMERICANS AND LATINOS
AND THEY HAVE LESS INFORMATION
-- ACCESS TO INFORMATION.
SO I'M WONDERING IF YOU HAD ANY
THOUGHTS OR RECOMMENDATIONS OR
REGARDING WHERE COMMUNICATORS --
GOVERNMENT COMMUNICATORS SHOULD
BE PUTTING EMPHASIS, TO REACH
THE ONES WHO ALREADY SOLD ON THE
TECHNOLOGY OR IS IT TO REACH OUT
TO THOSE WHO MAY NOT HAVE AS
MUCH ACCESS.
>> GREAT QUESTION.
IT ACTUALLY -- THAT WAS ONE OF
THE MAJOR QUESTIONS AT A
CONFERENCE I ATTENDED THE MOBILE
HEALTH 2011 CONFERENCE AT
STANFORD WHICH WAS A MIX IF YOU
WERE THERE FROM SILICON VALLEY,
THIS WAS HELD AT STANFORD, AND
ACTUALLY A LOT OF PEOPLE WHO
WERE FROM THE FEDERAL
GOVERNMENT.
WAS ANYBODY HERE IN MOBILE
HEALTH 2011?
THERE WERE SOME FOLKS FROM THE
NIH AT THE CONFERENCE.
AND ALSO PEOPLE FROM STATE
PUBLIC HEALTH AGENCIES.
IT WAS REALLY ATTENTION, FRANKLY
-- ATTENTION IN THE ROOM AND ON
STAGE BECAUSE THERE WAS A LOT OF
EXCITEMENT AND THERE CONTINUES
TO BE
>> WHOW ARE YOU REACHING WITH
THESE APPS.
SURELY EXCITED ABOUT THE APPS
BUT THE PEOPLE FOCUSED ON PUBLIC
HEALTH WHETHER IT'S STATE LEVEL
OR FEDERAL LEVEL WERE TALKING TO
EACH OTHER AND ALSO ON STAGE HOW
IEGHTS NOT APPS.
IT'S ABOUT OPTIMIZING FOR THE
MOBILE WEB.
SOMEBODY ELSE HAD THE INSIGHT
THAT SOMETIMES YOU DON'T HAVE
THE BUDGET FOR AN APP, SOMETIMES
IT'S DIFFICULT TO GET SOMETHING
CHANGED YOU HAVE TO GO THROUGH
QUITE A FEW CHECK OFFS TO GET
SOMETHING PUBLISHED ONLINE.
IF YOU'RE PART OF STATE OR
FEDERAL AGENCY.
BUT SO MUCH OF THE HEALTH
INFORMATION THAT PEOPLE REALLY
NEED IS FEASIBLE.
SO THEREFORE, OPTIMIZING,
TAKING, FREEING YOUR INFORMATION
FROM THE PDF, AND ALLOWING IT TO
BE SHARED, ALLOWING SOMEBODY TO
BE ABLE TO BLOG SOMETHING OR
GRAB AN IMAGE, THAT'S WHAT A LOT
OF THE PUBLIC HEALTH FOLKS WERE
FOCUSING ON, WHEREAS THE
ENTREPRENEURS WERE VERY MUCH
FOCUSING ON THE APPS.
YES.
>> BOB GOLD AGAIN.
I HAVE TWO QUESTIONS AND FEEL
FREE TO PICK OR CHOOSE.
THE FIRST ONE IS A FOLLOW-UP
COINCIDENTALLY.
THERE'S A PROBLEM WITH PERM NANS
OF INFORMATION ON THE INTERNET.
THE BEST ILLUSTRATION I CAN
THINK OF IS THAT EARLY IN THIS
-- IN THE LAST DECADE, THE FDA
RELEASED SOME RECOMMENDATIONS
RELATED TO LIS STEERIA FOR WOMEN
WHO WERE PREGNANT ABOUT WHAT
FOODS TO AVOID AND WHAT NOT TO
HAVE TO WORRY ABOUT.
SIX YEARS LATER THEY REVISED
THOSE RECOMMENDATIONS.
THE ORIGINAL RECOMMENDATIONS
NEVER CAN BE REMOVED FROM THE
WEB.
THE CHALLENGE IS WHAT DO YOU DO
WITH INFORMATION ONCE PERMANENT
THOUGH THE SCIENCE CHANGES IN
THIS ENVIRONMENT.
I DON'T KNOW IF ANYONE IS
SYSTEMATICALLY LOOKING AT THAT
ISSUE AS A PUBLIC HEALTH ISSUE
BIT'S ONE TO BE CONCERNED ABOUT.
THERE'S NO GUARANTEE WHICH
RECOMMENDATIONS SOMEONE IS GOING
TO FIND.
THE OTHER QUESTION THAT HAS
THOOZ DO WITH TOOLS.
-- HAS TO DO WITH TOOLS.
I APPRECIATE YOU'RE A GEOLOGIST
OF THE INTERNET.
THAT IS MY PRIMARY INTEREST.
SINCE THE RELEASE OF HEALTHY
PEOPLE 2020 LAST NOVEMBER, I
HAVE COLLECTED EVERY TWEAK ABOUT
-- TWEET ABOUT HEALTHY PEOPLE
2020 INTO A PRIVATE ARCHIVE.
I'M LOOKING FOR TOOLS THAT CAN
HELP ME ORGANIZE THAT
INFORMATION IN A MEANINGFUL WAY
AN EXTRACT USEFUL WAYS IN WHICH
PEOPLE ARE APPLYING IT, THE
CHALLENGES THEY HAVE, THE
BENEFITS THEY GET FROM IT, AND I
WANT YOUR THINKING ABOUT THAT.
>> GREAT QUESTIONS.
REGARDING THE PERMANENCE OF
INFORMATION.
IT'S DEFINITELY A CHALLENGE.
I THINK THAT WE HAVE SOME
LIBRARIANS IN THE ROOM WHO WOULDfR/
BE WONDERFUL RESPONDENTS TO THAT
QUESTION, PROBABLY BETTER THAN
ME IN TERMS OF HOW TO CREATE
INFORMATION -- INFORMATION
ARCHITECTURE AN ARCHIVES THAT
WOULD PRIVILEGE THE MORE UP TO
DATE INFORMATION.
I THINK THAT I DON'T KNOW OF A
STUDY BUT GOT THEIR HUSBAND ONE
IN TERMS OF LOOKING AT THE
SEARCH RESULTS BECAUSE STILL
TRUE THAT MOST PEOPLE ARE USING
A SEARCH ENGINE WHEN THEY HAVE A
HEALTH QUESTION.
SO IT'S THE STATE THE PEOPLE GO
TO WHEN THEY GET A NEW DIAGNOSIS
THEY GO ONLINE TO RECOVER FROM
THE DOCTOR'S APPOINTMENT.
THEY PUNCH KEY WORDS INTO A
SEARCH ENGINE AND WHEN THEY DIG
DEEPER THEY GET INTO STUFF LIKE
PEER TO PEER HEALTHCARE.
BUT WHAT ABOUT THAT FIRST STAGE?
WHAT DO THEY FIND WHEN THEY
SEARCH?
I ACTUALLY RECENTLY READ A BOOK
CALLED THE PANIC VIRUS WHICH IS
ABOUT VACCINES AND THE SPRAYS
LINKED TO AUTISM.
IT'S A BOOK WHICH DUG REALLY
DEEPLY INTO THE DANGERS OF
ONLINE HEALTH INFORMATION AND
HOW IT CAN -- YOU CAN GO DOWN A
RABBIT HOLE WHERE EVERYBODY IS
SAYING ONE THING AND IT'S
DIVORCED FROM REALITY OF
SCIENCE.
BUT IT BECOMES THAT ECO CAMER
THAT YOU FEAR -- CHAMBER THAT
YOU FEAR.
THAT LANSETT ARTICLE, BY WAY,
HELLO, SMOKING GUN, LANSETT?
ANYWAY, BUT IT'S SOMETHING THAT
I THINK THAT WE CAN LOOK AT AND
THAT I WOULD BE INTERESTED IN
TALKING TO THE MAJOR SEARCH
ENGINES ABOUT.
BECAUSE THE WAY -- IT'S A BLACK
BOX ABOUT HOW BEING IN GOOGLE
AND ASK AND YAHOO CHOOSE THE
ALGORITHM.
BUT YOU CAN PRETTY MUCH TELL HOW
-- WHEN THEY CHANGE THINGS
WHAT'S GOING TO BE PRIVILEGED.
SO AS LONG AS SITES LIKE THE NIH
AND PUBMED AND CDC, ALL THOSE
STILL POP UP HIGH, THEN THAT'S
AN INDICATION THAT WE'RE ON THE
RIGHT TRACK.
BUT IT WOULD BE VERY INTERESTING
TO YOU TO ENGAUGE WITH THE
SEARCH COMMUNITY AS I KNOW THE
NIH ENGAGED WITH WIKIPEDIA.
IN YOUR SECOND QUESTION WITH THE
TOOLS.
SO SINCE YOU KNOW UNIVERSITY OF
MARYLAND I WOULD RECOMMEND BENCH
NIDERMAN, THAT'S FRANKLY WHO I
WOULD CONTACT.
IF I WANTED TO DO THAT KIND OF
RESEARCH.
>> I WOULD LIKE TO ADD TO THAT
THERE ARE FOLKS AT THAT TIME
NATIONAL LIBRARY OF MEDICINE
DOING NATURAL LANGUAGE
PROCESSING INCLUDING LOOKING AT
TWEETS AND SO FORTH.
ON THE ISSUE OF THE ECO CHAMBER,
IN SOME COMMUNITIES INCLUDING
THE AUTISM COMMUNITY NIH
ACTIVELY PROACTIVELY ENGAGES
THEM SO THERE'S IT'S CONNECTING
UP WITH NIH AND MITIGATING SOME
OF THAT.
>> THANK YOU.
>> SOMEONE MENTIONED, MIGHT HAVE
BEEN YOU, THE INTERESTING
CONCEPT OF COST.
IN THE MIDST OF THE BUDGET
THINGS WE HAVE HEARD OVER THE
LAST COUPLE OF WEEKS, HAS THERE
BEEN A LOT THAT YOU HAVE SEEN
OUT THERE BASED ON DOES USE OF
PEER TO PEER AND INTERNET
INCREASE OR RAISE OR DECREASE
THE COST OF HEALTHCARE?
>> GREAT QUESTION.
SO WE DON'T HAVE DATA THAT LOOKS
AT THAT.
BUT I WILL SAY THAT I'M GETTING
MORE AND MORE CALLS FROM STATE
LEVEL PUBLIC HEALTH AGENCIES.
WHOSE BUDGETS ARE BEING CUT WHO
ARE LOOKING FOR CREATIVE WAYS TO
SPREAD THE KNOWLEDGE ABOUT
CONTROLLING DIABETES.
FOR EXAMPLE, PEOPLE ARE LOOKING
FOR NEW WAYS TO NAVIGATE THIS
EPIDEMIC THAT WE HAVE, FRANKLY.
SOMETIMES I LOOK AT THESE -- THE
BROAD PUBLIC HEALTH TRENDS AND
WE SEE THIS GROWING COHORT OF
PEOPLE LIVING WITH PREVENTABLE
CHRONIC DISEASE.
AT THE SAME TIME WE HAVE A
GROWING COHORT OF PEOPLE WHO ARE
ONLINE, USING SOCIAL MEDIA FOR
FUND, FOR WORK, FOR WHATEVER,
LESS LIKELY FOR HEALTH.
THAT -- WHEN I SEE THAT, I SEE
THIS -- I SORT OF PICTURE IT
LIKE A GIANT CLIFF OF SNOW, THAT
THERE'S THIS -- THREATENING US
THAT WE HAVE THIS HUGE
POPULATION LIVING WITH CHRONIC
DISEASE EQUALLY LARGE POPULATION
USING SOCIAL MEDIA.
WHAT'S GOING TO TRIGGER THE
AVALANCHE?
AND WHICH WAY IS IT GOING TO GO
IN TERMS OF PEOPLE CONNECTING
WITH EACH OTHER TO SUPPORT EACH
OTHER IN GETTING THE NUMBERS
UNDER CONTROL, LOSING WEIGHT,
FINDING TREATMENTSCH WHEN I
THINK ABOUT ALSO THE SUPER
HEROES, THE PEOPLE LIVING WITH
RARE DISEASE, AND MAKING THIS
MOTION BECAUSE I THINK OF THEM
AT THE PINNACLE OF PEER TO PEER
HEALTHCARE.
THEY HAVE THE GREATEST NEED AND
THEY'RE RISING TO THE CHALLENGE
BY NETWORKING ONLINE.
WHAT ABOUT THE REST OF THE
MOUNTAIN OF PEOPLE WHO COULD
BENEFIT, WHO COULD LEARN FROM
THE SUPER HEROES OF RARE DISEASE
AND LET LESSONS OF PEOPLE WHO
COME DOWN TO MORE COMMON
CONDITIONS OR NEED TO GET
SOMETHING UNDER CONTROL.
I DON'T HAVE DATA.
I JUST HAVE HOPE.
ANY OTHER QUESTIONS?
>> I'M CURIOUS, GIVEN ALL OF THE
RELIABLE AN UNRELIABLE
INFORMATION OUT THERE, HAVE YOU
FOUND PROVIDERS THESE DAYS ARE
RELUCTANT SPECIFICALLY SEEKING
OF UNDERSERVED POPULATIONS WHO
MAYBE WOULDN'T THINK TO GO TO
THE INTERNET TO FIND OUT MORE
INFORMATION.
>> YEAH.
THAT'S ONE OF THOSE QUESTIONS
THAT I WOULD LOVE TO ASK
CLINICIANS WHEN WE HAVE ASKED
THE CONSUMER GENERAL POPULATION
ABOUT WHETHER THEY HAVE
CONSULTED A DOCTOR ABOUT WHAT
THEY FIND ONLINE, PEOPLE ARE
IT'S BEEN A MIXED REVIEW ABOUT
WHETHER CLINICIANS ARE
ENCOURAGING OR NOT.
WHAT -- WHEN WE LOOK AT THE
GENERAL POPULATION AND WE SEE
THIS CULTURAL SHIFT THAT'S
REALLY CHANGING POLITICAL
CAMPAIGNS, IT'S CHANGING THE
NEWS BUSINESS, CHANGING HOW WE
GET MOVIES AND MUSIC, YOU ALMOST
HAVE TO BELIEVE THAT CLINICS
AREN'T IMMUNE TO THE COULD WHICH
ARE CHANGE -- CULTURE CHANGE.
I HAVE BEEN AT MEDICAL
CONFERENCES, I WENT TO THE
AMERICAN COLLEGE OF SURGEONS
LAST YEAR, AND WAS PART OF A
PANEL ABOUT SOCIAL MEDIA USE
AMONG SURGEONS.
I ACTUALLY WAS REALLY NERVOUS
ABOUT THAT CONFERENCE.
I JUST HAVEN'T SPOKEN TO THAT
MANY SURGEONS.
AND IT WAS ONE OF THE
FRIENDLIEST AUDIENCES THAT I
HAVE EVER SPOKEN TO.
THEY WERE -- IT WAS A PACKED
HUGE ROOM IN THE CONVENTION
CENTER HERE IN D.C. AND THERE
WAS ACTUALLY A TWITTER TUTORIAL
BEING LED FROM THE STAGE AND THE
RESULT OF THE TUTORIAL WERE UP
ON THE SCREEN BECAUSE PEOPLE
WERE ASKED TO SEND THEIR FIRST
TWEET WITH THE HASH TAG AND THE
SCREEN FILLED WITH ALL THESE
SURGEONS SENDING THEIR FIRST
TWEET THAT'S NOT DATA, IT'S JUST
ANECDOTE BUT IT WAS REALLY
INTERESTING TO SEE HOW THIS
POPULATION WHO WENT THROUGH
THEIR ENTIRE MEDICAL EDUCATION
AND ARE IN PRACTICE AND HOW
EAGER THEY WERE TO LEARN HOW TO
CONNECT WITH PATIENTS.
MOST OF THE DISCUSSION WAS ABOUT
THE CHALLENGE IS KNOWING WHETHER
THEY SHOULD FRIEND A PATIENT ON
FACEBOOK FOR EXAMPLE.
AND SO THAT'S WHERE THE BEACON
OF CHANGE I BROUGHT UP FROM
CHILDREN'S HOSPITAL AND THE
PARTNERSHIP WITH 2 DIABETES IS
REALLY INTERESTING BECAUSE IT'S
SOMETHING THAT THEY ACKNOWLEDGE,
THEY TRY TO CREATE A TOOL THAT'S
FACEBOOK LIKE BUT -- IN TERMS OF
USABILITY BUT IT'S PROFESSIONAL.
SO IT'S A WAY IN A PROFESSIONAL
SETTING NOT WITH YOUR HIGH
SCHOOL FRIENDS MIXED IN, BUT FOR
A CLINICIAN TO CONNECT WITH A
PATIENT AND BE ABLE TO CONNECT
WITH THE SOCIAL NETWORK
DISCUSSION THAT'S HAPPENING
ANYWAY.
SO I THINK THAT THE CULTURE
CHANGE IS REACHING DOCTORS AND I
LOVE TO SEE MORE DATA TO SHOW
IT.
THANKS FOR THE QUESTION.
>> THANK YOU, SUSANNAH.
A QUESTION, WHAT INFORMATION ARE
WE MISSING?
WHAT ARE WE NOT PROVIDING TO
PATIENTS, HEALTHCARES THAT WE
SHOULD BE PROVIDING FOR?
IS THERE SUFFICIENT INFORMATION
THAT WE'RE NOT PACKAGING IT
CORRECTLY TO GET IT OUT THERE TO
THE PUBLIC?
>> THAT IS A GREAT QUESTION.
SO THAT'S WHERE I WOULD POINT TO
THE RESEARCH WHERE WE ASK PEOPLE
ABOUT WHETHER THEY TURN FOR
DIFFERENT SOURCES OF INFORMATION
O. IT WAS -- IT'S REALLY
INTERESTING TO SEE HOW WHEN IT
COMES TO MEDICINE WHEN IT COMES
TO DIAGNOSIS OR FIGURING OUT A
TREATMENT PATH, PEOPLE ARE
LIKELY TO TURN TO CLINICIANS.
IT'S WHERE AS SO MUCH HEALTH
HAPPENS OUTSIDE THE CLINICAL
SETTING.
SO WHILE IN THE PAST PEOPLE MAY
HAVE BEEN FRUSTRATED THAT THEY
DON'T REALLY KNOW SO THEY'RE NOW
ON THE TREATMENT PATH, THEY HAVE
A DIAGNOSIS, BEFORE THAT
HAPPENS, AND DURING THAT
PROCESS, THEY TURN TO A
CLINICIAN.
AND THEN AFTER IT THEY TURN TO
FRIENDS AND FAMILY AN PEER
PATIENTS.
UNLESS THEY CAN'T GET A
DIAGNOSIS.
AND SO I THINK IT'S WHEN WE SEE
THIS DISCONNECT POINTS WHERE
SOMEONE IS MORE LIKELY NOW TO GO
ONLINE.
SO I THINK IT WOULD BE A
DIFFICULT QUESTION TO ANSWER
BECAUSE IT'S DIFFERENT FOR EVERY
PERSON BUT IF SOMEONE IS
SEARCHING FOR A DIAGNOSIS AND
UNABLE TO GET IT FROM A HEALTH
PROFESSIONAL, WHAT WE HAVE SEEN
IS THAT THEN TRIGGERS THE
LIKELIHOOD TO GO ONLINE.
THANK YOU SO MUCH.
I'VE REALLY ENJOYED THIS
DISCUSSION.
THANK YOU VERY MUCH FOR COMING
OUT.
[APPLAUSE]
>> I WANT TO THANK EVERYONE FOR
COMING OUT TODAY.
REMIND YOU THAT ON ON
SEPTEMBER 6TH IN THIS SAME ROOM
FROM ONE TO 3 THOMAS LEVIST,
DIRECTOR OF HOPKINS CENTER FOR
HEALTH DISPARITIES WILL BE HERE
DISCUSSING HEALTH INEQUALITIES.
I DON'T KNOW IF THE DIRECTOR OF
OUR OFFICE PAUL COATS HAD
SOMETHING TO SAY.
>> THANK YOU.
I REALLY ENJOYED THIS, THIS IS A
SERIES THAT I HAVE A STRONG
INTEREST IN.
I DIDN'T INVENT IT, IT WAS A
CREATION OF MY EXCEPTIONAL PRESS
SEDSOR BARRY KRAMER AND HIS
STAFF -- PREDECESSOR BARRY
KRAMER AND HIS STAFF BUT I GOT
TO INHERIT THIS.
THIS IS A WONDERFUL START TO A
NEW SERIES OF CONVERSATIONS
ABOUT WHERE DO WE -- IF THERE
ARE GAPS, HOW DO WE ADDRESS THEM
AND HOW DO WE TRY TO DEAL WITH
FILLING THE INFORMATION GAPSCH
THIS IS A WONDERFUL WAY TO GET
STARTED.
THANK YOU, SUSANNAH.
>> THANK YOU.
>> THANK YOU.