THANK YOU FOR JOINING US TODAY.
I KNOW THERE ARE MANY COMPETING
OBLIGATIONS AS WE APPROACH THE
THANKSGIVING HOLIDAY.
AS YOU KNOW THIS IS OUR SECOND
MEETING OF THE NICHD STILLBIRTH
WORK GROUP THE ADVISORY GROUP OF
OUR COUNCIL.
BEFORE WE BEGIN I'D JUST LIKE TO
THANK EVERYONE WHO WAS SO
ENGAGED IN OUR FIRST MEETING.
WHAT YOU SAID WAS VERY IMPORTANT
TO US AND WE HAVE TAKEN YOUR
COMMENTS INTO CONSIDERATION AND
THAT HAS REALLY INFLUENCED HOW
WE HAVE ORGANIZED THE REMAINING
MEETINGS.
I WANTED TO LET YOU KNOW WE ARE
APPRECIATIVE OF PARTICULARLY THE
ENGAGEMENT OF THE PEOPLE WHO
HAVE HAD LIVED EXPERIENCE OF
HAVING DELIVERED STILLBORN
BABIES AND WE ARE COMMITTED TO
JOINING YOU IN DEVELOPING A
RESEARCH AGENDA TO PREVENT THIS
FROM HAPPENING IN THE FUTURE.
WITH THAT, I'M GOING TO TURN THE
VIRTUAL MICROPHONE OVER TO
DR. JANE FOR THE INTRODUCTIONS.
>>HI THERE, GOOD MORNING
EVERYONE.
HELLO, DR. BIANCHI.
I ECHO THE FEELINGS THAT THE
ENGAGEMENT FROM THE GROUP HAS
BEEN ENORMOUS AND I'M GRATEFUL
TO ALL OF YOU FOR PARTICIPATING
IN THIS VERY IMPORTANT EXERCISE.
STILLBIRTH IS IS AN IMPORTANT
AREA TO FOCUS ON AND THE NUMBER
OF STILLBIRTH HAPPEN EVERY YEAR
I GOT AN E-MAIL FROM ONE OF YOU
LAST NIGHT ABOUT HOW STILLBIRTHS
FAR EXCEED THE NUMBER OF SIDES
DEATH EACH YEAR AND WE NEED FOR
US TO CONTINUE TO FOCUS ON
FINDING THE CAUSES OF STILL
BIRTH AND FOCUS ON PREVENTION.
WITH MY CO-CHAIR I WANT TO THANK
YOU TO THE THE FIRST OF OUR
SESSIONS ON EXPERTS ON
STILLBIRTH.
WE ORGANIZED TODAY'S AGENDA INTO
AGENDAS.
ONE ON BARRIERS TO COLLECTING
DATA ON STILLBIRTHS.
THE SECOND SESSION WILL FOCUS ON
COMMUNITIES AT HIGHER RISK FOR
STILLBIRTHS.
IN SESSION 1 WE'LL HAVE SEVERAL
SPEAKERS.
WE'LL GET STARTED WITH AN
OVERVIEW OF THE DATA CHALLENGES
THAT WE FACE IN STILLBIRTHS AND
THEN WE'LL HAVE A DISCUSSION
ABOUT THE POTENTIAL FOR A
U.S. STILLBIRTH REGISTRY.
SIMILAR TO WHAT THE BIRTH
DEFECTS REGISTRY DOES AT THE CDC
AND THEN WE'LL TALK ABOUT THE
ALL OF US STILLBIRTH
SURVEILLANCE PROGRAM AND THE
BARRIERS THEY'VE BEEN FACING IN
COLLECTING DATA AND FOLLOWED BY
CONCERNS IN COLLECTING
STILLBIRTH DATA AND WILL HAVE
HALF AN HOUR, AMPLE TIME FOR
DISCUSSION.
WE'LL THEN HAVE A BREAK FOLLOWED
BY SECOND SESSION AND I'LL TALK
ABOUT THAT WHEN WE GET THERE.
I WANTED TO SEE IF THERE'S
COMMENTS BEFORE WE GET STARTED
WITH THE FIRST SESSION.
>>NO, THANK YOU.
WE'RE EXCITE ABOUT THE PANEL OF
SPEAKERS AND EXCITED ABOUT THE
ROBUST DISCUSSION ABOUT
IMPORTANT ISSUES.
THANK YOU.
>>GREAT.
>>THANK YOU.
DR. DUDLEY, ARE YOU READY TO
KICK US OFF.
NO BETTER PERSON TO GIVE US THE
BACKGROUND AROUND DATA
CHALLENGES.
THE WORK DR. DUDLEY HAS DONE
OVER THE YEARS IN THIS AREA AND
I LOOK FORWARD TO THE DISCUSSION
THAT FOLLOWS.
DR. DUDLEY, PLEASE GO AHEAD.
>>THANK YOU, GOOD MORNING,
EVERYBODY.
NOT 100% SURE WHAT YOU'RE
WANTING TO GET OUT OF MY 10
MINUTES OF FAME BUT WE'LL KICK
IT OFF AND GET THINGS GOING IF
SOMEONE CAN PULL UP MY SLIDES OR
WHATEVER YOU WANT.
SADLY I HAVE NO DISCLOSURES TO
REPORT.
I'M JUST OUT THERE DOING WORK.
I THOUGHT WE'D GET BASIC FIRST
AND TO BE HONEST WITH YOU I'VE
NEVER LOOKED AT THE DEATH
CERTIFICATE FORM IN ANY GREAT
DETAIL SO THE FIRST FEW SLIDES
ARE JUST TO REVIEW WHAT A DEATH
CERTIFICATE LOOKS LIKE AND THIS
IS PAPER ONE OFF THE CDC WEBSITE
THE FIRST PART IS DEMOGRAPHIC
DATA AND DISPOSITION OF THE
REMAINS THE FATHER IS THE CAUSE
CONDITIONS CONTRIBUTING TO FETAL
DEATH.
YOU CAN SEE THERE'S INITIATING
CAUSE CONDITION, OTHER SIG CAUSE
CONDITIONS AND CHECK BOXES AND
FILL-IN BLANKS FOR THIS AND IF
YOU LOOK, THERE ARE THINGS LIKE
FETAL ANOMALY, FETAL INFECTION
AND THE LIKE.
THE TOP OF THE SECOND PAGE IS
INFORMATION ON THE MOTHER.
THE EDUCATION, RACE, ETHNICITY,
MARITAL STATUS, DETAILS ABOUT
PRENATAL CARE.
IT'S QUITE A DETAILED FORM.
THEN YOU GET DOWN TO THE RISK
FACTORS FOR PREGNANCY AND YOU
CAN LOOK AT ALL THE RISK FACTORS
THAT ARE LISTED INCLUDING METHOD
OF DELIVERY, INFECTIONS DURING
DELIVERY, COMORBIDITIES AND
FETUS.
THE FORM HAS QUITE A BIT OF
DETAIL.
WHAT I DID A HIGHLY BIASSED
LIMITED SURVEY OF WHERE I CAN
FIND OUT HOW PEOPLE FILLED OUT
THE FORM.
THE FIRST FOUR SITES ARE IN
VIRGINIA AND THE RESIDENT
COMPLETES THE WORK SHEET AND IT
GOES TO THE DEAN IN DECEDENT
AFFAIRS AND GOES BACK TO THE
RESIDENT FOR ATTESTATION AND THE
DIENER FILLS OUT THE DEATH
REGISTRATION IN VIRGINIA.
AND THE BIRTH REGISTRAR
COMPLETES THE EDRS AND THEN GOES
BACK TO THE RESIDENT FOR
ATTESTATION THE THIRD IS
DEFINING WOMEN WHO HAVE FETAL
DEATH.
THEY HAVE A SYSTEM THEY CREATED
TO HELP THEM WITH THAT.
THEY COMPLETE THE FORMS AND HAVE
THE RESIDENT SIGN IN THE EDRS.
THE DATA IS OFTEN INCOMPLETE DUE
TO DISCHARGES.
OFTEN THE PATIENTS DON'T TAKE
TIME AND IT TAKES TIME FOR THE
REGISTRARS TO FIND THEM.
THE FIRST THREE SITES WERE
UNIVERSITY HOSPITALS WITH
RESIDENCY.
THE FOURTH SITE WAS A COMMUNITY
HOSPITAL AND AT THIS SITE THE
PHYSICIAN WHO DELIVERS THE BABY
COMPLETES A PAPER FORM, GIVES IT
TO THE UNIT CLERK WHO FORWARDS
IT TO THE BIRTH REGISTRAR TO THE
ED ARE -- EDRS AND GOES TO THE
STATE.
IN THE FIFTH SITE THE BABY'S
BODY GOES TO THE HOSPITAL MORGUE
AND IN INTERNAL MESSAGE GOES TO
THE DELIVERING RESIDENT WITH AN
ONLINE FORM WITH A LINK TO THE
ELECTRONIC SYSTEM IN THIS STATE
THE RESIDENT COMPLETES THE FORM
AND THEN RECEIVE AS A
CONFIRMATORY E-MAIL AND
RESIDENTS HAVE A CHEAT SHEET TO
HELP THEM FILL OUT THE FORMS.
YOU CAN SEE THERE ARE EACH
HOSPITAL THAT CALLED HAS
DEVELOPED THEIR OWN INTERNAL
SYSTEM TO TRY TO COMPLETE THESE
FORMS WHICH CAN BE QUITE
CUMBERSOME YOU CAN IMAGINE.
THE OTHER THING TO KEEP IN MIND
IS PRACTICALLY AT LEAST IN
RESIDENCY PROGRAMS OFTEN WOMEN
WHO SUFFER STILLBIRTH ARE
DELIVERED BY FIRST-YEAR,
SECOND-YEAR RESIDENTS.
HAVE YOU YOUNG JUNIOR PEOPLE
FILLING OUT THE FORMS.
THEY DON'T NECESSARY GO TO THE
ATTEND.
LIKE I SAID I'VE NEVER SEEN THE
FORM UNTIL I LOOKED AT IT
ONLINE.
SO SOME FUN FACTS I LEARNED
THROUGH ALL THIS, VIRGINIA
DEPARTMENT OF HEALTH HAS A NICE
20-PAGE GUIDE BOOK ON HOW TO
HELP COMPLETE THIS EDRS AND I
PAGED THROUGH IT BUT I GUARANTEE
A PRIVATE PHYSICIAN WILL NOT
TAKE THE TIME AND IT'S
STRAIGHTFORWARD BUT CUMBERSOME
THEY HAVE AN ONLINE VIDEO TO
VIEW HOW TO COMPLETE THE
CERTIFI
CERTIFICATES.
IN VIRGINIA ALL FETAL DEATHS,
ALL PREGNANCY LOSSES ARE
SUPPOSED TO BE ENTERED SO IT
DOESN'T MATTER GESTATIONAL AGE.
IF THE EVENT OCCURS OUTSIDE
LABOR AND DELIVERY, FEW PEOPLE
KNOW ANYTHING ABOUT THESE FORMS.
FOR EXAMPLE, EMERGENCY ROOM
DOCTORS DON'T KNOW ANYTHING
ABOUT IT.
SO THERE'S GOING TO BE SOME
INCOMPLETE DATA.
AS YOU CAN SEE, LOOKING AT THE
BIRTH CERTIFICATE FORM,
ASSIGNING A CAUSE OF DEATH FROM
THAT COULD BE A BIT OF A
CHALLENGE AND I'M GOING TO TALK
BRIEFLY ABOUT WHAT WE DID IN THE
STILLBIRTH COLLABORATIVE
RESEARCH NETWORK BACK 10, 15
YEARS AGO BECAUSE WHEN WE WERE
COLLECTING OUR DATA AND HAD
COLLECTED OUR COHORT, WE WERE
INTERESTED IN TRYING TO DEVELOP
A SYSTEM TO IDENTIFY CAUSE OF
DEATH.
WE HAD A WORKSHOP AND BROUGHT IN
EXPERTS FROM ALL OVER THE WORLD.
AT THE TIME THERE WERE 35
DIFFERENT WAYS OR CLASSIFICATION
SYSTEMS TO IDENTIFY A CAUSE OF
FETAL DEATH.
THE MAIN THING WE LEARNED IS
THAT EACH OF THE SYSTEMS WAS
CREATED BASED ON THEIR SPECIFIC
DATA SET AND WHAT THEY HAD
COLLECTED AND HAD A SPECIFIC
PURPOSE IN MIND.
THE PURPOSE SEEMED TO BE
DIRECTED TOWARDS A RESPONSE TO
SOME NEED IN THAT COMMUNITY OR
THAT COHORT.
SO WE WANTED TO -- AND NONE OF
THEM WERE REALLY SUFFICIENT OR
WHAT WE HAD COLLECTED OR WERE
COLLECTING IN OUR COHORT.
AND SO IN RESPONSE TO THAT, WE
CREATED OUR OWN SYSTEM WHICH IS
CALLED INCODE WHICH WE PUBLISHED
IN GREEN JOURNAL BACK IN 2010.
THIS IS A FAIRLY UNBIASSED,
EVIDENCE-BASED SYSTEM WHERE WE
IDENTIFIED WHAT WERE KNOWN
CAUSES OF BIRTHS -- SUPPOSED TO
BE KNOWN CAUSES OF STILLBIRTH
AND CLASSIFIED THESE.
THIS IS CALLED INITIAL CAUSES OF
FETAL DEATH EVALUATION WITH THE
THOUGHT WHEN THERE'S MORE
INFORMATION AVAILABLE THERE'S
MORE CAUSES FOR WHAT THE FETAL
DEATH WAS.
WE CREATED BASICALLY AN
EIGHT-PAGE FORM WITH A BRIEF
SECOND FOR HYPERTENSIVE
DISORDERS OF PREGNANCY.
WE CREATED A SYSTEM WHERE YOU
CAN HAVE A DISEASE THAT'S
PRESENT, FOR EXAMPLE, JUST
HYPERTENSION ALONE, PROBABLE
CAUSE AND POSSIBLE CAUSE OF
STILLBIRTH AND PROBABLE CAUSE OF
STILLBIRTH AND HYPERTENSIVE
DISEASE WITH AT LEAST TWO OF THE
FOLLOWING.
THE POINT WAS TO GO THROUGH EACH
SET OF STILLBIRTH AND COMPLETE
THE EIGHT-PAGE FORM AND IDENTIFY
A CAUSE OF PROBABLE OR POSSIBLE
CAUSE OF DEATH.
AND INCODE ARE MATERNAL MEDICAL
CONDITIONS, COMPLICATIONS, FETAL
GENETIC ABNORMALITIES,
PATHOLOGIC ABNORMALITIES.
SO IF YOU GO THROUGH BACK TO THE
BIRTH CERTIFICATE FORM YOU'LL
FIND QUITE A BIT OF WHAT IS IN
INCODE AND THINGS MENTIONED ARE
ACCOUNTED FOR IN INCODE.
NOW, THE THING ABOUT OUR
ANALYSIS, WE HAD 500 STILLBIRTHS
AND EACH OF THE STILLBIRTHS
REVIEWED BY TWO INVESTIGATORS
WHO THEN DISCUSSED THEM AT
LENGTH WITH EACH OTHER TO
IDENTIFY WHAT WE THOUGHT WAS A
POSSIBLE CAUSE OF DEATH.
IT WAS QUITE A LABORIOUS TASK
AND EVEN THEN UPWARDS WITH OF
20% TO 25% OF THE STILLBIRTHS WE
COULD NOT IDENTIFY POSSIBLE
CAUSES OF DEATH.
COMPARE THAT TO WHAT YOU DO FOR
FETAL DEATH CERTIFICATE WHERE
YOU MAY HAVE A JUNIOR RESIDENT
OBSTETRICIAN HAS TO FILL OUT A
FORM THAT HAS 40 VALUES YOU CAN
SEE HOW THE DATA MAY BE A LITTLE
BIT NOT AS THOROUGH OR AS
COMPLETE AS ONE MIGHT HOPE.
THIS MAY SHAKE OUT IN THE LONG
TERM WITH LARGE NUMBERS BUT
STILL IT IS A CHALLENGE TRYING
TO UNDERSTAND EXACTLY WHAT
HAPPENED IN SPECIFIC STILL
BIRTH.
THE OTHER THING TO KEEP IN MIND
AT LEAST IN VIRGINIA, THERE'S A
SEVEN-DAY DEADLINE THAT WE'RE
SUPPOSED TO HAVE THE FORMS
COMPLETE WITHIN SEVEN DAYS OF
STILLBIRTH AND SO NOT ALL THE
INFORMATION IS AVAILABLE.
THE PLACENTAL PATHOLOGY AND
AUTOPSY AND WHEN IT COMES TO THE
TIME OF THE STILLBIRTH IS WHEN
THE PATIENT DELIVERS AND THE
EXACT TIMING OF WHEN THE STILL
BIRTH OCCURRED MAY BE DIFFERENT
AS IT MAY BE DAYS TO WEEKS AFTER
THE BABY HAS DIED BEFORE THE
STILLBIRTH WAS DETECTED AND
DEBBIE CONWAY ON THE PANEL, LED
OUR EFFORTS TO COME UP WITH A
SYSTEM TO ACTUALLY IDENTIFY THE
DATE OF WHEN THE FETUS PASSED.
THOSE ARE TWO EXCLUSIVE EVENTS
AND IT'S MATHEMATIC AND I'M NOT
EXACT ON THE WAY WE ARRIVE AT IT
IF DR. CONWAY WANTS TO GO OVER
THAT WE CAN DO THAT.
IN CONCLUSION, THE FETAL DEATH
CERTIFICATE IS A BIT CUMBERSOME
TO COMPLETE.
I DON'T KNOW HOW I'D DO AT IT,
TO BE HON EST.
THE LACK OF MANAGEMENT OF FETAL
BIRTH CERTIFICATE.
EVERY SYSTEM HAS COME UP WITH
THEIR OWN WAY OF COMPLETING THE
FORMS.
DETERMINING THE CAUSE OF FETAL
DEATH CAN BE DIFFICULT EVEN FOR
EXPERTS AND IT STRUCK ME THAT WE
COULD EASILY WE DEVELOPED INCODE
BACK IN THE TIME WHEN THERE WAS
NOT A LOT OF COMPUTER-BASED
ALGORITHMS IT WOULD BE EASY FOR
SOMEONE WHO KNOWS WHAT THEY'RE
DOING COMPUTER I'D THAT OR THE
CAUSE OF DEATH OR EVALUATION YOU
WANT TO USE AND POTENTIALLY LINK
IT THE EMRs.
I'M SURE THEY'RE GOING TO BE
LEGAL AND OTHER HURDLES TO TRY
TO DO THAT BUT WHERE THERE'S A
WILL THERE'S A WAY AND IT WOULD
MAKE IT SO BASICALLY YOU CAN
EXTRACT THE CLINICAL DATA FROM
THE MEDICAL RECORD AND IT
DEPENDS ON HOW ACCURATE THE
MEDICAL RECORD IS AND CUTS OUT
THE MIDDLEMEN AND THEN IT COULD
BE UPDATEABLE AS MORE
INFORMATION BECAME AVAILABLE AS
THE CAUSE OF DEATH EVOLVES OVER
TIME UNTIL SOMEONE SAYS YOU
FINISHED THE EVALUATION.
AND I THINK THAT CONCLUDES MY
SLIDES AND MY COMMENTS.
I JUST THINK THIS IS SOMETHING
RIPE FOR ELECTRONIC MECHANISM
WOULD CUT OUT -- WOULD MAKE THE
DATA MUCH MORE APPLICABLE.
>>THANK YOU.
DR. DUDLEY IS THE DIVISION CHIEF
OF MATERNAL FETAL MEDICINE IN
THE DEPARTMENT OF OG GYN
DEPARTMENT OF VIRGINIA AND HAS A
LONG TRACK RECORD OF THIS FIELD.
WE'LL SAVE QUESTIONS TOWARDS THE
END OF THE PANEL DISCUSSION.
I ALSO WANTED TO MENTION TO THIS
GROUP THAT THE NICHD WOUL LIKE
YOU ALL TO KNOW -- WOULD LIKE
YOU ALL TO KNOW THERE BE A
PUBLIC LISTENING SESSION COMING
UP AND REGISTRATION INFORMATION
WILL BE COMING YOUR WAY PRETTY
SOON.
THERE'S ALSO AN RFI SEEKING
INFORMATION THAT WOULD BE
HELPFUL IN DEVELOPING A STRONG
STRATEGY AROUND STILLBIRTHS
RESEARCH.
I'M GOING PULL IT UP FOR A
MINUTE SO EVERYONE IS FAMILIAR
AND CAN TRACK ALONG WITH WHAT
NICHD'S ENVISIONING WITH THE
PRESENTATIONS YOU ARE LISTENING
TO.
SO LET ME SEE IF I CAN PULL THIS
UP HERE.
LET ME READ OUT A BRIEF OVERVIEW
OF THE RFI.
THE RFI WHICH IS NOTHD22054 IS
THE NOTICE NUMBER.
IT'S ENTITLED DEVELOPING
STRATEGIES TO STRENGTHEN
RESEARCH ON STILLBIRTH
PREVENTION.
IT WAS RELEASED ON NOVEMBER 10.
RESPONSES ARE DUE IN BY JANUARY
6 OF 2023.
AND I THINK IT'S REALLY
IMPORTANT THAT EVERYONE
PARTICIPATES IN GIVING FEEDBACK
TO THE NICHD SO THE RESEARCH
AGENDA CAN BE PROPERLY
ORGANIZED.
THE FOUR AREAS WE'RE CURRENTLY
FOCUSSING IN ARE ON VALUES TO
COLLECTING DATA ON STILLBIRTHS
THROUGHOUT THE UNITED STATES.
WE'RE LOOKING AT COMMUNITIES AT
HIGH RISK FOR STILLBIRTH AND
LOOKING AT THE PSYCHOLOGICAL
IMPACT AND TREATMENT FOR MOTHERS
FOLLOWING STILLBIRTH AND FINALLY
WE'RE LOOKING AT KNOWN RISK
FACTORS FOR STILLBIRTHS.
SO THANK YOU, DR. DUDLEY FOR THE
INTRODUCTION.
NEXT ON OUR AGENDA WE HAVE A
DISCUSSION ON PREVENTION OR HE
PRESENTATION WILL FOCUS ON
U.S. STILLBIRTHS REGISTRY.
IT'S SIMILARITY WITH DEFECTS
REGISTRY SHE IS FROM THE CDC.
IT'S ALL YOURS.
>>THANK YOU.
>>GOOD MORNING, AS DR. JAIN
SAID I'M DR. REEFHUIS.
I WATCHED THE RECORDING OF THE
FIRST MEETING I'M SORRY I MISSED
AND HOPE TO ANSWER QUESTIONS
RAISED AROUND WHAT CDC IS DOING
AROUND FETAL DEATH SURVEILLANCE
AND RESEARCH.
BEFORE I WANT TO MAKE A NOTE ON
TERMINOLOGY.
CDC USES STILLBIRTH AND STILL
DEATH TO REFER TO THE LOSS OF A
BABY AT OR AFTER 20 WEEKS OF
PREGNANCY.
YOU HEARD FROM ANY COLLEGIATE
THE LAST MEETING.
THERE'S SEVERAL GROUPS AT CDC
THAT LOOK AT FETAL DEATHS
INCLUDING NCHI AND THE DIVISION
OF REPRODUCTIVE HEALTH AND I
KNOW COLLEAGUES ARE ATTENDING
TODAY.
I'LL FOCUS ON THE WORK THE
DIVISION OF BIRTH DEFECTS AND
INFANT DISORDERS.
SO WHAT IS THE BRANCH TALKING
ABOUT FETAL DEATHS?
AS MENTIONED LAST TIME IN 2020,
31.6% OF THE FETAL DEATHS HAD AN
UNKNOWN CAUSE OF DEATH BUT OF
THOSE WHERE THE CAUSE IS KNOWN,
15.5% WERE CAUSED BY BIRTH
DEFECTS SO THERE'S SUBSTANTIAL
OVERLAP.
THE FETAL DEATH RISK AMONG SOME
SPECIFIC BIRTH DEFECTS.
FOR SOME WE KNOW THE RISK WAS
HIGH BUT EVEN FOR BIRTH DEFECTS
NOT AFFECTING ORGAN WE SEE AN
ELEVATED RISK.
THERE'S EFFICIENCIES TO BE
REACHED BY COMBINING WORK ON
THESE TWO TOPICS AND AS SOMEONE
WHO WORKED WITH SURVEILLANCE
SYSTEMS FOR MY ENTIRE CAREER,
THE FOUNDATION FOR THAT WORK
SHOULD BE SURVEILLANCE.
AS MANY KNOW, MUCH OF OUR
CURRENT SURVEILLANCE RELIES ON
FETAL DEATH CERTIFICATES AS
DR. GREGORY EXPLAINED HAS THE
ADVANTAGE OF HAVING A BROAD
REACH ACROSS THE UNITED STATES.
THIS IS A FORM OF PASSIVE CASE
FINDING WHERE'S THE SYSTEM
RECEIVES REPORTS FROM HOSPITALS
AND OTHER SERVICES BUT THERE'S
NO FOLLOW-UP TO CONFIRM THE
DATA.
TO USE BIRTH DEFECT AS A
COMPARATOR.
THERE SURVEILLANCE METHODS VARY
BY STATE AND SOME RELY ON
PASSIVE CASE FINDING AND THERE'S
AN INFRASTRUCTURE IN PLACE FOR
OTHER METHODS.
AN ACTIVE SURVEILLANCE SYSTEMS
STAFF MEMBERS CONTINUALLY REVIEW
MEDICAL RECORDS FROM USUALLY
MULTIPLE HEALTH CARE FACILITIES
IN A GIVEN GEOGRAPHIC AREA THAT
DIAGNOSE AND CARE FOR CHILDREN
WITH BIRTH DEFECTS.
FOR EACH CASE IDENTIFIED THEY
COLLECT INFORMATION ON MOTHER
AND BABY.
THIS CAN BE TIME AND RESOURCE
INTENSIVE BUT RESULTS IN THE
MOST COMPLETE COLLECTION OF
BIRTH DEFECTS DATA.
THERE ARE ALSO STATES WITH
PASSIVE CASE FINDING WITH
CONFIRMATION.
THE SYSTEMS DO NOT RELY ON
COMMITTED STAFF TO FIND
INFORMATION ABOUT PREGNANCIES
IMPACTED BY BIRTH DEFECTS BUT
RELY ON AGREEMENTS TO USE A SET
OF CASE DEFINITION OFTEN ICD
CODES FROM HOSPITALS AND OTHER
AVAILABLE HEALTH CARE SERVICE.
THE INFORMATION IS REVIEWED AND
VARIED MOTHER ODDS ARE USED TO
VERIFY THE DIAGNOSES OF THE
BABIES REPORTED TO HAVE BIRTH
DEFECTS.
ALL THE METHODS ARE POPULATION
BASED OPPOSED TO CLINIC BASED.
THIS IS CRUCIAL TO DEVELOP A
CLEAR UNDERSTANDING HOW THE
ENTIRE POPULATION IS IMPACTED
AND SNFK TO ALLOW US TO ASSESS
HEALTH INEQUITIES.
OUR DIVISION IS ABLE TO SUPPORT
BIRTH DEFECT SURVEILLANCE ACROSS
THE COUNTRY WITH 10
POPULATION-BASED SURVEILLANCE
PROGRAMS AND SEVEN SITES
PARTICIPATING TO EVALUATE
PREGNANCY EXPOSURES WHICH I'LL
DISCUSS IN MORE DETAIL LATER.
IN 2005, OUR DIVISION STARTED
WORK TO EXPLORE THE FEASIBILITY
OF FETAL BIRTH SURVEILLANCE AND
TWO SYSTEMS IN IOWA AND
METROPOLITAN IOWA WERE
ESTABLISHED TO USE AS A
FOUNDATION FOR RESEARCH AND FOR
FETAL DEATHS.
WE LEARNED FETAL DEATH RECORDS
CONTRIBUTE TO DATA AND SEVERAL
WOUND UP NOT INCLUDED WITH THE
MOST COMMON REASON BEING IN THE
MEDICAL RECORD THE PREGNANCY WAS
REPORTED TO BE LESS THAN 20
WEEKS GESTATION.
THESE FINDINGS PROVIDE IMPORTANT
INFORMATION AND GUIDANCE FOR
FUTURE WORK ON FETAL DEATH
SURVEILLANCE.
WE USED WHAT WE LEARNED IN THE
PROJECT TO EXPAND OUR BIRTH
DEFECT RESEARCH TO INCLUDE FETAL
DEATHS.
THE BIRTH DEFECT STUDY TO
EVALUATE PREGNANCY EXPOSURES IS
A LARGE CASE CONTROLLED STUDY
THAT STARTED TO COLLECT
INFORMATION ON BIRTH DEFECTS IN
2013.
IN 2015 WE STARTED INCLUDING
FETAL DEATHS AS WELL.
TWO OF THE SEVEN SITES, ARKANSAS
AND MASSACHUSETTS WERE FUNDED TO
CONDUCT ACTIVE FETAL DEATH
SURVEILLANCE MEANING THEY
IDENTIFY FETAL DEATHS THROUGH
HOSPITAL RECORDS AND REVIEWED
THE MEDICAL RECORD AND THEY'RE
IN THE PROCESS OF REVIEWING ALL
THE CASE TO CLASSIFY THE CAUSE
OF DEATH.
AND BD STEPS IS A CASE CONTROL
STUDY.
THE INTERVIEW COVERS A WIDE
RANGE OF POSSIBLE RISK FACTORS
INCLUDING ILLNESS, STRESS, AND
INFORMATION ABOUT FETAL
MOVEMENT.
THE TWO SITES HAVE CONDUCTED 503
INTERVIEWS WITH WOMEN WHO
EXPERIENCED FETAL DEATH AND MOST
DIDN'T HAVE A BIRTH DEFECT AND
375 INTERVIEWS IN THE CONTROL.
WHILE WE'RE WAITING FOR THE DATA
TO BE CLEANED FOR ANALYSIS WE
PUBLISHED OTHER PROJECTS I'LL
DESCRIBE IN THE NEXT FEW SLIDES.
WE USED THREE DATA SOURCES
AVAILABLE, THE NATIONAL VITAL
STATISTICS DATA THE LARGEST
FETAL DEATH DATA WE HAVE IN THE
POPULATION AND DATA FROM THE
NATIONAL BIRTH DEFECTS
PREVENTION STUDY COLLECTING
INFORMATION ON FETAL DEATHS BUT
ONLY FOR CASES WITH BIRTH
DEFECTS IN 10 STATES AND THE
METROPOLITAN STUDY I DISCUSSED
EARLIER.
IN EARLY 2020, WE COLLABORATED
WITH COLLEAGUES AND PUBLISHED A
REPORT BASED ON VITAL STATISTIC
DATA AND IT SHOWED 1 IN EVERY
166 PREGNANCIES ENDED IN A FETAL
DEATH AND A THIRD DID NOT HAVE A
CAUSE SPECIFIED ON THE RECORD.
WE ALSO DESCRIBED DIFFERENCES BY
RACE, ETHNICITY.
ON THE LEFT YOU SEE FETAL DEATH
RATE BY STATE.
THE DARKER THE BLUE, THE HIGHER
THE RATE OF FETAL DEATH.
IN THE TOP LEFT YOU SEE THE OVER
ALL RATE FOR ALL ETHNICITIES
COMBINED WITH HIGHER RATES IN
THE SOUTHEAST.
YOU CAN SEE IN THE OTHER THREE
MAPS, ONCE YOU STRATIFY BY RACE,
ETHNICITY THE FETAL DEATH RATES
ARE RELATIVELY CONSISTENT AND
HIGHEST FOR NON-HISPANIC BLACK
WOMEN.
THE GRAPH ON THE RIGHT SHOWS THE
DISTRIBUTION OF RACE ETHNICITY
WITHIN EACH ASSIGNED CAUSE OF
DEATH.
THOUGH THE DISTRIBUTION IS
PRETTY EVEN WITH BIRTH EFFECTS
YOU CAN SEE THE HIGHER RATES FOR
NON-HISPANIC BLACK WOMEN FOR ALL
OTHER CAUSES OR MOST OF THEM.
I ALSO WANTED TO SHARE TWO
RECENT PAPERS LED BY SOME
COLLABORATORS FROM MASSACHUSETTS
USING DATA.
THE FIRST DESCRIBED FETAL DEATH
RISK AND A SECOND LOOKED AT
PREGNANCIES AFFECTED BY BIRTH
DEFECTS AND VASO MEDICATIONS
CAUSE EFFECT AND RESEARCHERS
ACKNOWLEDGE MORE RESEARCH IS
NEEDED SINCE IT COULD BE RELATED
TO THE UNDERLYING HYPERTENSION
INSTEAD OF MEDICATION.
AND DATA FROM BD STEPS COULD BE
USED TO FURTHER EXPLORE THE
ASSOCIATION BUT WE STARTED TO
LOOK AT THE RISK FACTORS WITH
THE DATA AVAILABLE TO US.
AND LASTLY, I WANTED TO MENTION
A RECENT PUBLICATION THAT
SUMMARIZES THE FETAL DEATH DATA
VIA THE ENHANCED UNIVERSAL
PROJECT.
DATA WAS COLLECTED ON 2,211
FETAL DEATHS AND AS SEEN HERE
COMBINING ACTIVE SURVEILLANCE
DATA WITH FETAL DEATH
CERTIFICATE DATA APPEARS TO
SUPPORT MORE ACCURATE DEATH
ASCERTAINMENT.
THERE'S MORE WORK TO BE DONE
WHICH IS WHY WE'RE.
WE HAVE SEVERAL ACTIVITIES
PLANNED AROUND FETAL DEATHS.
SOME OF OUR IMMEDIATE WORK
INCLUDES BEGINNING ANALYSIS OF
BD STEPS FETAL DEATH DATA AND
CLASSIFICATION OF CAUSES IS
UNDERWAY AND THE INTERVIEW DATA
ARE BEING CLEANED AND GETTING
READY FOR ANALYSIS.
I HOPE THIS MEETING CAN GIVE US
SOME DIRECTION AS TO WHICH
TOPICS TO PRIORITIZE ONCE THE
DATA ARE READY.
WE HAVE ALSO FORECASTED A NOTICE
OF FUNDING AND WE WILL CONTINUE
TO COLLECT INFORMATION TO ASSESS
POSSIBLE RISK FACTORS.
AND FINALLY, WE'RE FORECASTING A
NOTICE OF FUNDING OPPORTUNITIES
FOR PREGNANCY INFANT LINKED
SURVEILLANCE INCLUDING SEVERAL
OUTCOMES INCLUDING FETAL DEATHS.
AGAIN, THANK YOU FOR THE
OPPORTUNITY TO SHARE WHAT WE'RE
WORKING ON AT THE CDC AND I'M
HAPPY TO ANSWER ANY QUESTIONS.
>>THANK YOU, SO MUCH.
I CAN'T IMAGINE ANY BETTER
PERSON TO HAVE COVERED THIS
ASPECT OF STILLBIRTH DATA
GATHERING AT THE RESEARCH BRANCH
AT THE CDC.
I'M LOOKING FORWARD TO THE
DISCUSSION SESSION.
I'M SURE THERE'LL BE LOTS OF
QUESTIONS FOR YOU.
OUR NEXT SPEAKER IS THE
EXECUTIVE OFFICER FOR THE CENTER
FOR INHERITED DISORDERS STATE
GENETICS COORDINATOR FOR THE
IOWA DEPARTMENT OF PUBLIC
HEALTH.
I'M THRILLED, KIMBERLY, YOU WERE
ABLE TO PARTICIPATE IN THIS
DISCUSSION TODAY.
OVER TO YOU.
>>THANK YOU, DR., JAIN.
AND THANK YOU FOR THE
OPPORTUNITY TO SHARE IOWA'S
EXPERIENCE FROM THE FIELD AND
THE PREVIOUS SPEAKER SET ME UP
FOR THIS AS WELL.
I HAVE NO DISCLOSURES TO REPORT
AND FOR THIS PRESENTATION I USE
THE TERM STILLBIRTH AND FETAL
DEATH INTERCHANGEABLY.
I'M GOING DESCRIBE TWO PARALLEL
PROJECTS IOWA USED TO BUILD THE
INFRASTRUCTURE FOR STILLBIRTH
SURVEILLANCE.
IN 2004 A BILL WAS SIGNED BY THE
GOVERNOR AND THIS HOUSE FILE
2362 CAME FROM LEGISLATION
INTRODUCED BY
THEN-REPRESENTATIVE JANET
PETERSON WHO HAD THE HEARD
BREAKING EXPERIENCE AND BEGAN TO
LOOK AT WAYS TO UNDERSTAND THE
OCCURRENCE OF STILLBIRTHS AND
INTRODUCE HOUSE FILE 2362.
THE INTENT WAS HAVE THE IOWA
DEPARTMENT OF PUBLIC HEALTH
STUDY AND DEVELOP PREVENTION
STRATEGIES TO REDUCE STILLBIRTHS
AND OTHER INHERITED OR
CONGENITAL DISORDERS WHICH CAN
CAUSE DEATH AND DISABILITY IN
NEWBORNS.
THE AIM WAS TO ENABLE THE
DEPARTMENT TO ESTABLISH A
STILLBIRTH PROTOCOL WORK GROUND
FOR THE GUIDELINES AND
EVALUATIONS OF CAUSES AND
PREVENTION OF STILLBIRTHS.
AND LOOK AT SURVEILLANCE TOOLS
AND PROCESSES FROM THAT.
SO WE START BY BUILDING A SYSTEM
FOR STILL BIRTH SURVEILLANCE.
WE CONVENED AN EXPERT WORK
GROUP.
THE LIST OF THE WORK GROUP IS
DESCRIBED HERE.
THE AIM WAS TO BUILD AN
EVALUATION TOOL AND PROVIDE
GUIDANCE AND THE EVALUATION OF
STILLBIRTH OCCURRENCE.
IN ADDITION WE ALSO ENGAGED WITH
OTHER IOWA DEPARTMENT OF PUBLIC
HEALTH STAFF AND OUR MEDIA
RELATIONS AREA AND OUR STATE
CHILD DEATH REVIEW TEAM AND
STAFF IN GENETICS PROGRAMS AS
WELL.
IN DEVELOPING THE SYSTEM WE
WANTED TO DESIGN A STILLBIRTH
EVALUATION PROTOCOL WITH AN
EVALUATION FORM AND THIS WAS
BASED ON WISCONSIN'S PROGRAM THE
WISCONSIN STILLBIRTH
SURVEILLANCE PROGRAM FORMS AND
YOU CAN FIND LINKS TO THOSE AT
THE BOTTOM OF THE PAGE.
WE HELD WORK GROUP MEETINGS.
WE WE VIEWED THE PROCESS FOR
EVALUATION OF STILLBIRTH.
THE GOALS WERE REVIEWED, WE
DISCUSSED THE EVALUATION TOOL,
THE DISSEMINATION OF THE TOOL
AND A MANUAL THAT WENT ALONG
WITH THAT AND WE EDITED THE TOOL
AS WE WENT ALONG.
WE DESIGN THE STILLBIRTH
EVALUATION PROTOCOL WITH
DIFFERENT SECTIONS AND THIS
EXPANDS UPON WHAT YOU WOULD FIND
IN THE FETAL DEATH CERTIFICATE.
THE SECTIONS INCLUDE MORE
DETAILED HISTORY AND HISTORY AND
A PATIENT INTERVIEW.
THERE'S A SECTION FOR NARRATIVE
FOR THE PATIENT OR MOTHER TO
DESCRIBE HER EXPERIENCE WITH THE
STILLBIRTH.
WE ALSO ASKED THEM TO RECORD ON
GROSS FETAL, UMBILICAL AND
PLACENTAL CORD EXAMINES AND
PROVIDED RECOMMENDED PATHOLOGY
AND POSTMOREM EVALUATION AND
RECOMMENDED WAYS TO FOLLOW UP
WITH THE FAMILY AND MADE SURE WE
WE PROVIDED CULTURALLY SPECIFIC
GRIEF SUPPORT INFORMATION.
THE HOSPITALS THAT FILL THIS OUT
ESPECIALLY THE SMALLER HOSPITALS
DON'T HAVE STILLBIRTHS OCCURRING
VERY OFTEN IN THE FACILITIES SO
EVERY TIME IT DOES HAPPEN
THEY'RE RELEARNING WHAT TO DO
AND HOW BEST TO SUPPORT THIS
FAMILY.
IN ADDITION TO BUILDING A TOOL
THEY WOULD FILL OUT AND SPIT
WITH THE INFORMATION WE WANT
WANTED TO GIVE A DOCUMENT THEY
COULD USE TO GUIDE THEM THROUGH
THE SUPPORT OF THE FAMILY AND
THE SITUATION AS WELL.
WE DISSEMINATED THE TOOL AND
PROVIDED INFORMATION ON THE USE
OF THE TOOL DURING SITE VISITS.
OUR CARE TEAM IS COMPRISED OF A
NEONATOLOGIST AND FETAL MEDICINE
SPECIALIST AND NICU NURSE AND
VISIT ALL THE BIRTHING HOSPITALS
IN IOWA ON A REGULAR AND PROVIDE
INFORMATION AND PROVIDE A
RECORDS REVIEW OF THEIR OUTLYING
INCIDENTS AND I SENT THE
PROTOCOL TO ALL THE BIRTHING
HOSPITALS IN THE STATE AND
PROVIDED IN-PERSON EDUCATION TO
THE LARGEST BIRTHING HOSPITALS
TO THEIR NURSING AND MEDICAL
STAFF AND THE COPY OF THE FORMS
ARE AVAILABLE ON THE WEBSITE AT
THE LINK HERE.
I DID RECEIVE ASSISTANCE FROM
THE MEDICAL STAFF AT THE
HOSPITALS WHEN I MET WITH THEM.
THEY SAW IT AS ONE OTHER FORM TO
FILL OUT.
ONE PHYSICIAN SAID WHO'S GOING
TO PAY US FOR FILLING OUT THE
FORM.
THERE WAS RESISTANCE OF GOING
BEYOND WHAT THEY WERE REQUIRED
TO DO BY LAW, IF YOU WILL.
THE SURVEILLANCE PORTION OF THE
SCHMIDT EVALUATION PROTOCOL FORM
ARE SENT TO THE IOWA REGISTRY
FOR CONGENITAL AND INHERITED
DISORDERS TO ME AS AN ADDITIONAL
CASE FINDING TOOL AND THE
INFORMATION FROM THAT IS
COLLECTED AND ABSTRACTED AND
SURVEILLANCE HAPPENS AS WITH THE
OTHER BIRTH DEFECTS PROGRAM THAT
OUR IOWA REG STRE FOR CONGENITAL
AND INHERITED DISORDERS UNDER
TAKES.
THE FETAL DEATH CERTIFICATE IS
STILL THE LEGAL RECORD OF
STILLBIRTH IN IOWA THE
EVALUATION TOOL'S ANCILLARY TO
THAT PROCESS.
WHERE WE ARE NOW WITH USE OF THE
FETAL DEATH EVALUATION FORM IT'S
VOLUNTARY.
NOT EVERY BIRTHING FACILITY IS
FILLING IT OUT AND SUBMITTING
IT.
HALF THE HOSPITALS ARE SENDING
THE FORM IN AND THERE ARE OFTEN
VARIOUS STAGES OF COMPLETION AND
NOT ALL STAGES ARE COMPLETION,
THE ENTIRE FORM ISN'T DONE AND
GET JUST ONE SIDE OF THE FORM IF
THE FORM IS DOUBLE SIDED BUT WE
ARE ABLE TO GET SOME VALUABLE
INFORMATION FROM THOSE FORMS.
I PUT THAT INFORMATION ON THE
SPREAD SHEET WHICH IS SPREAD
WITH OUR BIRTH DEFECTS REGISTRY
AND THE EVALUATION FORM HAS BEEN
ABLE TO BE MODIFIED SINCE IT'S
INCEPTION.
AS RESEARCH PROGRESSES AND WE'RE
FINDING OUT MORE THINGS, WE DO
HAVE THE ABILITY TO AMEND THE
FORM DEPENDING ON OUR CURRENT
DATA NEEDS WHICH IS DEFINITELY
NOT LIKE THE FETAL DEATH
CERTIFICATE.
SOME OF THE THINGS THAT WE HAVE
ADDED INCLUDE WE ASKED
INFORMATION ABOUT THE BLOOD
PRESSURE RANGE, SLEEPING
POSITION, INDICATED IF THE
MOTHER RECEIVED INFORMATION
ABOUT MONITORING FETAL MOVEMENT
AND RECENTLY WE'VE ASKED THEM
ABOUT THE MOTHERS COVID STATUS.
AND EDUCATION CONTINUING ON THIS
WITH HEALTH CARE AND PROVIDERS
AND POLICY MAKERS ABOUT USING
THE FORM.
AND SOME INFORMATION IS SHARED
WITH THE STATEWIDE PERINATAL
CARE TEAM FOR EXAMPLE I HAD ONE
SITUATION WHERE A PARENT ON THE
PARENT NARRATIVE FORM THEY
INDICATED THAT THEY WERE
EXPERIENCING DECREASED FETAL
MOVEMENT AND CONTACTED THE HELP
LINE OR 24-HOUR NURSE CALL IN
LINE AT THE HOSPITAL AND WAS
TOLD TO GET REST, DRINK ORANGE
JUICE AND GET REST AND COME BACK
IN THE MORNING AND OF COURSE
WHEN THEY DID, THAT INFANT HAD
DIED.
SO WE'RE ABLE TO PROVIDE
INFORMATION DEPENDING ON THE
INFORMATION WE GET FROM THE
EVALUATION FORMS.
THE BUDGET WE HAVE FOR THE
INITIAL PROJECT WAS $26,000 FROM
THE STATE TOBACCO SETTLEMENT AND
FUNDED OUR MEETING AND
CONFERENCE CALLS, ETCETERA.
WE WERE ABLE TO RECEIVE SOME
FUNDING THROUGH A COOPERATIVE
AGREEMENT FROM CDC FORESYSTEM
DEVELOPMENT AND THAT LEADS ME TO
DISCUSS THE NEXT PART OF THE
PROJECT THE IOWA STILL BIRTH
SURVEILLANCE PROJECT.
IOWA RECEIVED A COOPERATIVE
AGREEMENT FROM THE CENTERS FOR
DISEASE CONTROL AND PREVENTION
TO ESTABLISH THE IOWA STILLBIRTH
SURVEILLANCE PROJECT AND THE
DEPARTMENT RECEIVED CONTINUATION
AWARDS WITH THE PROJECT ENDING
ULTIMATELY IN SEPTEMBER OF 2015.
AND THE AIMS OF THE STILLBIRTH
SURVEILLANCE PROJECT WERE TO
EVALUATE THE FEASIBILITY OF
EXPANDING OUR SURVEILLANCE
PROGRAM TO INCLUDE STILLBIRTH
SURVEILLANCE.
SO WE WANTED TO EXAMINE THE
FEASIBILITY OF EXPANDING OUR
POPULATION-BASED SURVEILLANCE
PROGRAM TO INCORPORATE DATA FROM
EXISTING RECORDS OR FETAL
DEATHS.
WE WANTED TO MONITOR AND REPORT
ON FETAL DEATHS AND SERVE AS A
REGISTRY FOR ET YO LOGICAL
STUDIES AND SERVE AS A RESOURCE
FOR EVALUATION OF STILLBIRTH
PREVENTION PROGRAMS THAT AIM TO
REDUCE THE OCCURRENCE OF FETAL
DEATHS.
I HAVE TO SAY WE NEED TO NOTE
THE INTENT WAS NOT TO CONDUCT
ONGOING STILL BIRTH SURVEILLANCE
AND ANALYSIS BUT SOMEONE THE
FEASIBILITY TO INCLUDE FETAL
DEATHS THAT COULD IN TURN INFORM
RESEARCH.
DEV DEV
OUR REGISTRY FOR CONGENITAL
DISORDERS AND IRCID HAD AN
ACTIVE PROCESS AND WOULD EXAMINE
HOSPITAL AND PROVIDER RECORDS
AND PROTOCOL FORMS AND
INFORMATION FROM OUR STATEWIDE
PERINATAL CARE TEAM REPORTS AND
IN THE BEGINNING WE WERE LOOKING
AT OBITUARIES IN OUR LOCAL PAPER
OR ONLINE TO IDENTIFY POTENTIAL
CASES FOR ABSTRACTION.
AND OUR REGISTRY GOES OUT AND
LOOKS FOR CASES RATHER THAN
RELYING ON FACILITY-PROVIDED
REPORTING AND PULLING DATA FROM
SECONDARY SOURCES.
THE CASES ARE REVIEWED AND
ABSTRACTED AND ENTERED IN THE
DATA SYSTEM AND EXAMINED BY THE
DATA REGISTRY MANAGER AND
CLINICIAN AND PATHOLOGIST AND
FOR QUALITY CONTROL AND THE DATA
ANALYSES ARE CONDUCTED BY THE
REGISTRY EPIDEMIOLOGIST.
WE HAD A PERINATOLOGIST AND
PATHOLOGIST TO REVIEW EACH CASE
TO VERIFY ITS ELIGIBILITY TO BE
INCLUDED AS A STILLBIRTH CASE.
SOME OF THE OUTPUTS FROM THIS
PROJECT INITIALLY WE IDENTIFIED
AND ABSTRACTED ABOUT 1600 CASES
OF FETAL DEATH IN IOWA OCCURRING
FROM 2005 TO 2013.
AND THEN IN 2011 THE REGISTRY
FORMED A CONSORTIUM WITH
STATEWIDE COVERAGE IN IOWA AND
HAWAI'I AND A FIVE-COUNTY
METROPOLITAN AREA OF COLORADO
AND THE 12 WESTERN COUNTIES OF
NEW YORK STATE.
THIS ALLOWED FOR THE INCLUSION
OF CASES WHICH ENHANCED THE
RACIAL AND ETHNIC DIVERSITY AND
ALLOWED FOR REPLICATION OF THE
FEASIBILITY TO INCLUDE
STILLBIRTH SURVEILLANCE AND WE
HAVE MANUSCRIPTS AVAILABLE IF
YOU'D LIKE I CAN SHARE LATER.
AND IT ADDRESSED ALL OF OUR
PROJECT AND WAS ABLE TO ADDRESS
ALL THE STILLBIRTH SURVEILLANCE
AIMS ON THE FEASIBILITY OF
EXPANDING OUR SURVEILLANCE TO
INCLUDE STILLBIRTHS.
I'LL HIGHLIGHT A COUPLE STUDIES
THAT CONSIDER SOME CONTESTS WE
WERE PRESENTED WITH IS THE IOWA
STILLBIRTH PROJECT REGARDING
COLLECTION OF THE DATA AND SOME
CHALLENGES EXPERIENCED.
SO WE HAD A STUDY THAT EXAMINE
FETAL DEATH CERTIFICATES AND
NEARLY ONE-QUARTER OF THE
STILLBIRTHS THAT RESOURCED FETAL
DEATH SER CATS DID NOT MEET THE
REPORTING CRITERIA.
AND RECORD ABSTRACTION VERIFIED
192 AS REPORTABLE STILLBIRTH FOR
THOSE.
NOT EVERY CASE THAT RECEIVED A
FETAL DEATH CERTIFICATE MET THE
CRITERIA FOR BEING A FETAL
DEATH.
OF THE STILLBIRTHS NOT MEETING
THOSE 80% WERE NOT REPORTABLE
DUE TO INACCURATE INFORMATION
AND IT WAS LARGELY DUE TO MEET
THE STILLBIRTH CRITERIA AND
GESTATIONAL AGE 20 WEEKS OR
BIRTH WEIGHT 350 GRAMS OR MORE
AND DESPITE ACCURATELY REPORTED
GESTATIONAL AGE AND BIRTH
WEIGHT.
AND AS DR. DUDLEY MENTIONED THE
TRAINING AND EDUCATION OF HOW TO
COMPLETE THE FETAL DEATH
CERTIFICATE IS DEFINITELY
LACKING AND SHOULD BE AN ONGOING
PROCESS.
WE LOOKED AT A COMPARISON OF
CASE ASCERTAINMENT SOURCES AND
EVALUATED DATA SOURCES INCLUDING
FETAL DEATH RECORDS WHICH
ENUMERATED EACH REPORTABLE
STILLBIRTH DELIVERED FROM 2005
TO 2013 AND RECORDS IDENTIFYING
1,434 OF 1,754 REPORTABLE STIL
BIRTHS AND THE MEDICAL RECORDS
HAD AN ADDITIONAL 207
STILLBIRTHS AND SOME WERE FOR
REPORT BE STILLBIRTHS AND 351
STILLBIRTHS WERE NOT REPORTED
AND WE FOUND ABSTRACTION THAT
MET OUR DEFINITION FOR
STILLBIRTH BUT WERE NOT ISSUED A
FETAL DEATH CERTIFICATE.
THIS IS A LIST OF SOME OF THE --
I ASKED THE BIRTH DEFECTS
REGISTRY STAFF TO GIVE ME
INFORMATION ABOUT SOME OF THE
BARRIERS THEY MET WHEN OBTAINING
QUALITY COMPREHENSIVE DATA AND
THIS IS THE LIST THEY CAME UP
WITH.
THEY NOTED A LACK OF AUTOPSY
RESULTS.
THE LACK OF GENETIC TESTING
RELATED TO THE ABOVE ON THE LACK
OF AUTOPSIES AND IN LIEU OF
AUTOPSIES, THERE'S A LACK OF
PHOTOS OF THE FETUS TO EXAMINE
AND DO AN EXAMINE ON THE BABY
AND POOR DATA ON DELIVERY
WEIGHT, GESTATIONAL AGE,
ETCETERA.
LACK OF INFORMATION ON THE EXACT
DAY OF FETAL DEATH OR PREGNANCY
DATING AND THEN VARIABLE
INFORMATION ON THE PRENATAL
HISTORY.
WITHOUT GOING DIRECTLY TO THE
PRENATAL PROVIDERS.
THEY WOULD HAVE TO GO DEEPER IN
THE CLIENT'S MEDICAL TO RECORD
INFORMATION AND THERE'S RISK
FACTORS AND THERE'S A LACK OF
TRAINING AND PROVIDERS AND
FUNERAL HOME DIRECT IN
COMPLETING THE DEATH
CERTIFICATES.
OUR MAIN CHALLENGE REMAINS THAT
STILLBIRTH SURVEILLANCE HAS THE
LIMITED AVAILABILITY OF
POPULATION-BASED DATA.
AND TO REVIEW THE EXAMINE OF
FETAL DEATH CERTIFICATES WE
FOUND THEY WERE OFTEN FILLED OUT
INCORRECTLY IN COMPLETELY OR FOR
CASES THAT DID NOT MEET THE
STATE CRITERIA FOR FETAL DEATH
REPORTING AND USING AS USING THE
DATA IN THE FETAL DEATH
REPORTING IN ADDITION TO THIS
QUOTE HE SAYS IF WE FIRST KNOW
WHERE WE ARE AND WITHER WE ARE
TENDING WE CAN BETTER JUDGE WHAT
TO DO AND HOW TO DO IT AND WE
FIRST MUST KNOW WHERE WE ARE AND
WITHER WE ARE TENDING.
THAT'S ALL I HAVE AND I'M HAPPY
TO ANSWER QUESTIONS LATER.
THANK YOU.
>>THANK YOU, SO MUCH, KIMBERLY.
THIS WAS A GREAT PRESENTATION.
AGAIN, AS I MENTIONED, THERE'LL
BE PLENTY OF DISCUSSION TIME
FOLLOWING YOUR PRESENTATIONS AND
I'M SURE THERE'LL BE QUESTIONS
FOR YOU RELATED TO CASE
ASCERTAINMENT AND REALLY
FIGURING OUT THET BEST WAY TO
BRING IN -- FIGURING OUT THE
BEST WAY TO BRING IN RELIABLE
INFORMATION.
SO CONTINUING WITH THE THEME,
OUR NEXT SPEAKER IS PROFESSOR IS
THE ROBERT A. LEFFLER PROFESSOR
OF LAW AND ASSOCIATE DEAN FOR
RESEARCH AND FACULTY DEVELOPMENT
AT THE UNIVERSITY OF ARKANSAS
SCHOOL OF LAW.
SHE WILL TALK TO US ABOUT THE
LEGAL ISSUES REGULLATED OR OR L
WITH STILLBIRTH DATA COLLECTION.
THIS IS AN INTERESTING AREA,
JILL.
WE OFTEN IN THE HEALTH CARE WE
TEND TO STRAIGHTAWAY JUMP INTO
HOW DO WE DO THINGS.
WE DON'T FOCUS ON WHY ARE WE
DOING THIS AND WHAT DO WE REALLY
NEED BACK TO KIMBERLY'S POINT
THERE.
ABOUT WHERE WE ARE AND WHERE ARE
WE HEADED FROM HERE.
THANK YOU FOR JOINING US TODAY,
JILL.
WE LOOK FORWARD TO JUR
PRESENTATION.
-- YOUR PRESENTATION.
>>THANK YOU, SO MUCH, DR. JAIN
AND THANK YOU SO MUCH TO THE
NATIONAL INSTITUTE OF CHILD
HEALTH AND HUMAN DEVELOPMENT.
I'M GRATEFUL THIS WORKING GROUP
EVEN EXISTS AND I REALLY
APPRECIATE THE OPPORTUNITY TO
PRESENT HERE TODAY.
I'M JILL LENS A LAW PROFESSOR
NOW AT THE ARKANSAS SCHOOL OF
LAW AND ALSO A STILLBIRTH MOM
ABOUT FIVE AND A HALF YEARS AGO
MY KIDDO WAS STILLBORN AND WAS
37 WEEKS IN PREGNANCY.
WHEN I GOT BACK TO WORK I PUT
THE PIECES TOGETHER THAT I COULD
DO THIS PROFESSIONALLY AND
WANTED TO FIGURE OUT HOW LAWS
AFFECT STILLBIRTH AND HOW THEY
MAY BE AFFECTING OUR STILLBIRTH
RATES AND THE EXPERIENCE OF
STILLBIRTH AND OTHER RESEARCH I
MAY BRING UP HERE OR THERE
WITHIN THE PRESENTATION.
THE MAIN FOCUS OF WHAT I WANT TO
TALK ABOUT TODAY IS ABOUT HOW
LAWS AFFECT OUR DATA COLLECTION.
AND BEFORE I GET TOO INTO THIS,
I DO WANT TO THANK A FEW
EPIDEMIOLOGISTS THAT COULD TALK
TO ME AND I KNEW I HAD ONE
PERFECT MY KIDDO BUT I JUST SAW
DOMINIQUE'S NAME IN A SLIDE A
LITTLE BIT AGO, DOMINIQUE HENKE
WAS HELPFUL AND DR. WENDY
NIMHARD AT THE UNIVERSITY OF
ARKANSAS MEDICAL SCHOOL WAS VERY
HELPFUL AND ALSO I DON'T KNOW IF
KIM REMEMBERS BUT I WAS CALLING
KIM I DON'T REMEMBER HOW MANY
SUMMERS AGO AND GOT A LITTLE BIT
INSIGHT FROM HER ALSO.
I WANTED TO START WITH AUTOPSIES
WHICH I KNOW WAS TALKED ABOUT IN
THE LAST MEETING.
WE DON'T HAVE MANY AUTOPSIES IN
THIS COUNTRY.
THIS WAS TWO YEARS FROM 2014 AND
2015.
WE ONLY HAD ONE-FIFTH ABOUT OF
STILLBIRTHS HAD A FETAL AUTOPSY.
THERE ARE DISPARITIES WHEN THEY
HAPPEN AND THERE'S ETHNIC AND
RACIAL DISPARITIES AND SOCIO
ECONOMIC DISPARITIES.
AUTOPSY WAS MORE LIKELY WITH
INCREASED MATERNAL EDUCATION NOT
ONLY DO WE NOT HAVE ENOUGH
AUTOPSIES BUT THE ONCE HAVE WILL
NOT BE REPRESENTATIVE.
WHY DON'T WE HAVE MORE AUTOPSIES
IS A QUESTION I WAS RESEARCHING?
OBVIOUSLY, IT'S A DISTRESSING
AND SHOCKING TIME.
YOU'RE HOLDING YOUR BABY AND
ALSO TRYING TO MAKE DECISIONS
WHETHER OR NOT TO HAVE AN
AUTOPSY AND IT'S ALSO DIFFICULT
BECAUSE IT'S A DIFFICULT
SITUATION AND DIFFICULT FOR
DOCTORS TO TALK ABOUT ALSO.
THESE ARE DOCTORS WHO ARE USED
TO HELPING BIRTH LIVE BABIES AND
THESE ARE DOCTORS USED TO HAPPY
TIMES AND THIS IS NOT A HAPPY
TIME AND MAYBE DON'T ALWAYS USE
CERTAIN LANGUAGE AND THE AUTOPSY
MAY NOT REVEAL A CAUSE BUT THAT
SAID WITH HEY, THEY'RE GOING TO
CUT YOU'RE BABY UP CAN BE
DISCOURAGING AND THERE'S AN EASY
WAY TO SAY THE SAME THING SAYING
THIS IS THE BEST WAY TO FIND OUT
THE CAUSE.
AND DOCTORS ARE WORRIED ABOUT
LIABILITY.
PERHAPS THEY'RE WORRIED ABOUT
THE RESULTS OF THAT AUTOPSY
SHOWING IT WAS SOMETHING RELATED
TO MEDICAL CARE THAT CAUSED THE
STILLBIRTHS AND ANOTHER REASON
AUTOPSIES DON'T HAPPEN IS
SOMETIMES DOCTORS ARE OVER
CONFIDENT ABOUT THE CAUSE AND
THAT'S SOMETHING THAT HAPPENED
WITH MY KIDDO THE DOCTOR WAS
CONVINCED I HAD A PLACENTAL
ISSUE AND I FELT GUILT SINCE
THEN I DID NOT DO EVERYTHING
POSSIBLE TO FIND OUT WHY MY SON
DIED BUT AT THE SAME TIME IT
WOULD HAVE BEEN DIFFICULT TO
AGREE TO THAT THAT DAY.
THE THOUGHT OF THAT HAPPENING TO
HIM WAS VERY DIFFICULT.
AT THE SAME TIME I WASN'T TOLD,
THIS WILL HELP CONTRIBUTE TO
RESEARCH TOO THOUGH AND
SOMETHING LIKE THAT MAY ARE ALSO
SWAYED MY DECISION A LITTLE BIT.
COST WAS NOT A FACTOR IN OUR
DECISION.
WE WOULD HAVE FIGURED THAT OUT
BUT I'M PRIVILEGED IN MANY WAYS
AND COST IS A BIG PROBLEM WITH
FETAL AUTOPSIES.
THERE'S NO GUARANTEE OF
INSURANCE COVERAGE AND THERE'S
DIFFICULTY TRYING TO FIGURE OUT
IF INSURANCE COVERS THIS.
MEDICAID DOES NOT COVER THE COST
OF THE FETAL AUTOPSY AND I KNOW
EVERYONE ON THE PANEL THOSE THIS
BUT MEDICAID COVERS HALF OF
PREGNANCIES IN OUR COUNTRY AND I
THINK HIGHER IN MY STATE CLOSER
TO TWO-THIRDS IN ARKANSAS
MEDICAID COVERS THESE
PREGNANCIES.
MEDICAID IS NOT COVERING AN
AUTOPSY.
AND AUTOPSIES ARE EXPENSIVE AND
STILLBIRTH IS SURPRISINGLY
EXPENSIVE AND AUTOPSIES CAN
EASILY FALL TO A LOW PRIORITY.
WE ALSO NEED TO BE CONCERNED
ABOUT THE QUALITY OF AUTOPSIES
THAT ARE COMPLETED WE DON'T HAVE
ENOUGH PERINATAL PATHOLOGISTS IN
THE COUNTRY.
LITTLE KIDS ARE NOT JUST LITTLE
ADULTS AND STILLBORN BABY NOT
LITTLE ADULTS AND HAVE TO BE
CONCERN ABOUT THE QUALITY OF
AUTOPSIES WE DO HAVE.
I WILL TALK ABOUT AUTOPSIES A
LITTLE BIT MORE AT THE END BUT
WANT SHIFT TO FETAL DEATH
CERTIFICATES AND WE ALL KNOW
THESE THINGS HAVE INACCURATE
INFORMATION AND HAVE INCOMPLETE
INFORMATION.
I NEVER SAT THROUGH THE TRAINING
TO COMPLETE A FETAL DEATH
CERTIFICATE.
I DO NOT KNOW WHAT THAT'S LIKE.
I DO WANT TO SUGGEST I THINK
PART OF THE PROBLEM BEHIND THIS
IS LACK OF AWARENESS OF
STILLBIRTH AND A COMPLETE LACK
OF AWARENESS OF HOW IMPORTANT
FETAL DEATH CERTIFICATES ARE IN
OUR ABILITY TO RESEARCH
STILLBIRTHS.
I DO WANT TO START WITH A
HISTORY LESSON BECAUSE I THINK
IT'S VERY INTERESTING.
WE GATHERED DATA ON STILLBIRTH
SINCE THE EARLY 1900s AND I MEAN
LIKE 1905.
THIS IS ALWAYS BEEN STATE-BASED
ALL VITAL STATISTICS ARE
STATE-BASED.
THE FEDERAL -- THE CONGRESS HAS
NO FEDERAL AUTHORITY TO MANDATE
ANY SORT OF VITAL STATISTICS
ABSENT AMENDING A CONSTITUTION.
IT'S STILL STATE-BASED.
BACK IN 1905, STATES HAD LAWS
ABOUT REGISTERING STILLBIRTHS
BUT THE WAY IT WAS DONE WAS WITH
A BIRTH AND DEATH CERTIFICATE.
INTERESTINGLY THERE WAS JUST A
QUESTION ON THE BIRTH
CERTIFICATE, WAS THE BABY
STILLBORN.
THIS CONTINUED FOR A WHILE.
ALSO, I ASKED MY MOM HER 1946
BIRTH CERTIFICATE AND I OUTED
HER AGE BUT FOR A GOOD REASON,
EVEN HER BIRTH CERTIFICATE HAD A
BOX TO CHECK IF THE BABY WAS
STILLBORN.
THIS PRACTICE WAS AROUND FOR
QUITE SOME TIME.
I MENTIONED THIS IS
DECENTRAL
DECENTRALIZED.
STATES ALL DO THEIR OWN THING AS
FAR AS ISSUING VITAL STATISTICS.
WE TRY TO HELP.
UNIFORMITY IS A GOOD THING.
SO SOMETHING LIKE THE MODEL
VITAL STATISTIC LAW EXISTS.
THERE'S A MODEL LAW THAT FEDERAL
AGENCIES PRODUCE AND WE HOPE
STATES WILL FOLLOW THAT.
I BRING THAT UP IMPORTANTLY
BECAUSE THE 1907 MODEL VITAL
STATISTICS LAW WAS THE SAME AS
THIS PENNSYLVANIA LAW ABOUT
USING THE STILLBIRTH WITH THE
BIRTH CERTIFICATE.
BACK TO MODERN DAY, STATES
CONTROL THE ISSUANCE OF FETAL
DEATH CERTIFICATES AND NOT EVERY
STATE USES THE SAME DEFINITION.
SOME STATES DO FETAL WEIGHT OVER
350 GRAMS OR WEIGHT UNKNOWN 20
WEEKS.
SOME STATES DO 20 WEEKS AND SOME
DO 20 WEEKS OR IF THAT'S UNKNOWN
THEN 350 GRAMS.
THERE HAVE BEEN SOME OUTLIERS.
SOUTH DAKOTA I CAN'T GET TO THE
BOTTOM OF THIS ONE.
EVEN THE REPORT ON THE 2020
STILLBIRTH DATA HAD AN ASTERISK
NEXT TO SOUTH DAKOTA IT ONLY
REPORTS STILL BIRTHS OVER 500
GRAMS WHICH USED TO BE SOUTH
DAKOTA'S LAW BUT THEY CHANGED
THAT LAW IN 2007 AND THEY NOW
USE THE 20-WEEK STANDARD.
SO I DON'T KNOW IF WE ARE ONLY
REPORTING 20 GRAMS BUT
SOMETHING'S AMISS THERE.
ALSO, WE HAD SOME RECENT
OUTLIERS ONLY WITHIN THE LAST 10
YEARS THAT OUR OUTLIER
DEFINITIONS HAVE CHANGED.
IT WAS 2012 THAT TENNESSEE
FINALLY GOT RID OF ITS -- IT
USED TO HAVE 500 GRAMS OR 22
WEEKS.
SO THAT'S WHAT TENNESSEE WAS
USING UP TO 2012.
NEW MEXICO WAS USING 500 GRAMS
UNTIL 2014.
EVEN IF WE FEEL COMFORTABLE
WHERE STATES ARE NOW, IT'S
RELATIVELY RECENT.
I WILL SAY PEOPLE MAY LOOK AT
THIS AND SAY THE DEFINITION
CLOSE ENOUGH AND THEY ARE
RELATIVE CLOSE.
I DON'T KNOW IF WE SETTLED FOR
CLOSE ENOUGH IN OTHER CONTEXT
THOUGH AND ONE THING I DO NOT
UNDERSTAND IS THAT THE 1992
MODEL VITAL STATISTICS ACT HAS
THE 350 OR WEIGHT UNKNOWN 20
WEEKS AND THAT CHANGED BEFORE
1992 IT WAS USING THE 20 WEEKS
OR WEEKS UNKNOWN, 350 GRAMS AND
I CANNOT FIND ANY DOCUMENTATION
ABOUT WHY THAT WAS CHANGED.
I DON'T UNDERSTAND WHY OUR MODEL
ACT WOULD NOT USE THE MEDICAL
DEFINITION OF STILLBIRTH AT 20
WEEKS.
THESE ARE PICTURES OF MY KIDDO'S
FETAL DEATH CERTIFICATE.
WE SAW A BLANK VERSION FROM
DR. DUDLEY EARLIER THIS MORNING.
THIS IS THE INITIATING CAUSE AND
THE SIGNIFICANT CAUSE SECTIONS
OF CALEB'S DEATH CERTIFICATE, MY
SON'S NAME IS CALEB, AND THOUGHT
I HAD A PLACENTAL OBSTRUCTION
AND I LEARNED FROM A SPECIALIST
SINCE I DIDN'T HAVE ONE BUT WHAT
I ALSO WANTED TO MENTION IS
Y'ALL CAN SEE AS FAR AS OTHER
OBSTETRICAL COMPLICATIONS LISTED
AS A CAUSE OR SIGNIFICANT CAUSE
CONTRIBUTING TO CALEB'S DEATH
WAS MY GESTATIONAL DIABETES.
I WANTED TO PAUSE FOR A SECOND
TO EXPRESS HOW UPSET I WAS WHEN
I OPENED THIS MAIL AND GOT THE
FETAL DEATH CERTIFICATE AND SAW
GESTATIONAL DIABETES LISTED AS A
CAUSE OR SIGNIFICANT CAUSE OF
CALEB'S DEATH.
OBVIOUSLY, THIS WAS SOMETHING I
HAD AND SOMETHING I HAD CONTROL
OVER TO SOME EXTENT.
SO TO SEE THAT AS LISTED AS A
CAUSE OF HIS DEATH WAS VERY
DIFFICULT FOR ME.
ALSO WHAT WAS ALSO EXTREMELY
DIFFICULT FOR ME WAS IF THIS
ILLNESS, DISEASE, THE ILLNESS I
HAD WAS A BIG ENOUGH DEAL TO BE
LISTED AS A CAUSE, WHY WASN'T I
HOLD AHEAD OF TIME?
WHY WASN'T I TOLD WHEN I WAS
DIAGNOSED WITH GESTATIONAL
DIABETES THIS CAN BE AN ISSUE
CONTRIBUTING TO STILLBIRTHS?
I MEAN, THE OPPOSITE WAS TRUE,
LIKE I DO BELIEVE MY DOCTOR
MENTIONED THAT MAYBE HE WOULD
HAVE TO COME OUT EARLY WHICH IS
NOT ANYTHING WE WORRY ABOUT
THESE DAYS WITH HOW FAR MEDICINE
HAS ADVANCED.
OTHERWISE IT WAS LIKE A NO BIG
DEAL AND CONTROL IT WITH YOUR
DIET AND I DID CONTROL IT WITH
MY DIET.
BUT IT'S A DISCONNECT.
LIKE IF THIS WAS A BIG ENOUGH
DEAL TO APPEAR ON HIS FETAL
DEATH CERTIFICATE I SHOULD HAVE
BEEN TOLD THAT GESTATIONAL
DIABETES WAS A BIG DEAL AND I
THINK THIS IS CONSISTENT WITH
THE THEME OTHERS HAVE SHARED
WITH THE THIS WORKING GROUP.
THERE'S A LACK OF KNOWLEDGE OF
STILLBIRTH AND IT BEING A
POSSIBILITY UNTIL IT HAPPENS TO
YOU.
AS ALLOW -- AS A LAWYER WE TALK
ABOUT THE DISPARITY BETWEEN
PATIENT AND DOCTORS AND TALK
ABOUT LAWS THAT HELP EVEN THAT
DISPARITY.
I THINK ESPECIALLY IN PREGNANCY
CARE, I THINK THAT DISPARITY IS
QUITE STARK YET.
AND ONE THINGS I WANT TO MENTION
ON THIS LEVEL, THERE'S GREAT
SCHOLARSHIP OUT THERE ABOUT IS
BEING CALLED OBSTETRIC VIOLENCE
AND THE IDEA THAT COERCING
PEOPLE INTO LIKE C-SECTIONS THEY
DON'T WANT AND THE STORIES TOLD
THERE IS THE DOCTOR WAS TRYING
TO PRESSURE ME INTO IT AND
PLAYED THE DEAD BABY CARD.
THE ONLY TIME STILLBIRTHS COMES
UP IS WHEN WE ARE TRYING TO
SCARE PEOPLE INTO PROCEDURES,
WHICH I HAVE A VERY DIFFERENT
TAKE ON THAT AND IF THERE'S SOME
CHANCE OF STILLBIRTH YOU NEED TO
BE LISTENING TO YOUR DOCTOR BUT
THE LACK OF AWARENESS AND LACK
OF DISCUSSION ABOUT STILLBIRTH
MAKES PEOPLE IMMEDIATELY THINK I
DON'T NEED TO WORRY ABOUT THAT.
COMING BACK TO CALEB'S FETAL
DEATH CERTIFICATE AND IT SAYS
PLACENTAL OBSTRUCTION AND I'M
SINCE LEARNED FROM A SPECIALIST
THAT PROBABLY DIDN'T HAPPEN SO
HIS FETAL DEATH IS INACCURATE.
SO I WANTED TO SHARE THIS WITH
YOU AND WE SAW THIS FROM
DR. DUDLEY AND WE ALSO DISCUSSED
IT THAT THESE FETAL DEATH
CERTIFICATES ARE FILLED OUT
BEFORE AUTOPSY ARE PERFORMED AND
BEFORE PLACENTAS ARE EXAMINED
AND THIS THERE'S THE QUESTION
WAS THE AUTOPSY RESULTS USED IN
DETERMINING THE CAUSE OF FETAL
DEATH.
THE FETAL DEATH CERTIFICATE
CONTEMPLATES THAT TIMING.
THAT'S ALSO TRUE FOR DEATH
CERTIFICATES FOR DEATHS OF
LIVING PEOPLE.
THERE'S A QUESTION ON THAT
STANDARD DEATH CERTIFICATE ALSO
WHETHER AN AUTOPSY WAS PERFORMED
AND WHETHER THE FINDINGS WERE
AVAILABLE.
THERE IS AN ADDITIONAL LANGUAGE
ON THE STANDARD DEATH
CERTIFICATE AND YOU CAN SEE THAT
ON THE BOTTOM OF MY SLIDE IF
THERE'S ADDITIONAL MEDICAL
INFORMATION THAT BECOMES
AVAILABLE WE NEED TO IMMEDIATELY
REPORT THAT SO GET IT AMENDED.
THAT LANGUAGE IS NOT ON THE
FETAL STANDARD DEATH CERTIFICATE
UNLESS THERE'S A PAGE OF IT I
CAN'T FIND BUT I'M CURIOUS WHY
THE URGENCY EXISTS FOR THE
STANDARD DEATH CERTIFICATE AND
NOT THE FETAL DEATH CERTIFICATE.
IF WE DO LEARN MEDICAL
INFORMATION LATER WE CAN AMEND A
FETAL DEATH CERTIFICATE BUT
THERE'S A PROCESS.
THERE'S A PROCESS AND ANY
CHANGES TO ME MEDICAL DATA OF
THE PART OF THE FETAL DEATH
CERTIFICATE HAS TO COME FROM THE
DOCTOR WHO PROVIDED THE MEDICAL
INFORMATION ON THE FETAL DEATH
CERTIFICATE.
THAT COULD BE THE DOCTOR THAT
TRIED TO TALK OUT OU FROM THE
AUTOPSY WITH OR YOU CUT OFF THE
RELATIONSHIP WITH OR COULD STILL
BE THE DOCTOR YOU STILL HAVE A
GREAT RELATIONSHIP WITH BUT THE
CHANGING THE FETAL DEATH
CERTIFICATE IS NOT ON TOP HIS
PRIORITY LIST.
HE HAS OTHER PATIENTS.
ULTIMATELY, I GUESS THE QUESTION
IS, WHAT'S THE POINT?
I'VE SHOWED YOU MY KIDDO'S FETAL
DEATH CERTIFICATE ACCORDING TO A
SPECIALIST IS INACCURATE BUT I
DON'T SEE WORTHWHILE REASON TO
GO THROUGH THE PROCESS OF
AMENDING IT.
AND I CARE VERY MUCH ABOUT WHY
HE DIED BUT I DON'T SEE A
WORTHWHILE REASON OF GOING
THROUGH THE PROCESS OF HAVING
HIS DEATH CERTIFICATE AMENDED IS
WORTHWHILE AND IT'S CONCERNING
FOR OUR SYSTEM AS A WHOLE.
KIM PIPER BROUGHT UP IN IOWA
THEY'RE GATHERING COVID
INFORMATION WITH RESPECT TO
STILLBIRTHS AND THAT'S SOMETHING
I WANT TO TALK ABOUT HERE TOO IN
MY TIME.
COVID INFECTIONS DURING
PREGNANCY AND STILLBIRTHS AND
VACCINATION STATUS OR
UNVACCINATED.
THE CDC REALIZED VERY EARLY ON
THAT WE NEEDED DATA ABOUT
POSSIBLE AFFECTS IN PREGNANCY IF
A PREGNANT PERSON WERE TO HAVE A
COVID INFECTION AND ACT ED VER
EARLY AND SAID WE NEED THE
INFORMATION AND DATA.
THE EMPHASIS AND NOT ONLY
EMPHASIS BUT THE ONLY WORK WAS
DONE WITH RESPECT TO LIVE BIRTH
CERTIFICATES.
THIS IS STUFF -- THREES EXAMPLES
FROM THE CDC AND SUGGESTIONS
THEY ASKED -- RECOMMENDATIONS
THEY MADE TO STATES TO CHANGE
LIVE BIRTH CERTIFICATES.
ONE OF THESE ONE IS PLEASE AS
INFECTION PRESENT OR TREATED
DURING PREGNANCY CAN YOU AT
LEAST WRITE COVID, BETTER YET
CAN WE LIST COVID AS A POSSIBLE
INFECTION AND BETTER THAN THAT
CAN WE HAVE INFORMATION WITH
COVID TO WHICH TRIMESTER THAT
COVID INFECTION HAPPENED.
AGAIN, THIS WAS ONLY ON LIVE
BIRTH CERTIFICATES.
THERE IS A SPOT ON A FETAL DEATH
CERTIFICATE ASKED FOR TREATMENTS
DURING PREGNANCY AND A SPOT FOR
OTHER WE COULD EASILY WRITTEN
COVID IN BUT IN WELL-INTENTIONED
EFFORTS TO SIMPLIFY THE FETAL
DEATH CERTIFICATE WE STOPPED
NATIONALLY COLLECTING CERTAIN
INFO AND THAT INCLUDES
INFORMATION ABOUT MATERNAL
INFECTIONS DURING PREGNANCY.
SO EVEN IF WE HAD INFORMATION ON
THE FETAL DEATH ISSUE
CERTIFICATE FOR COVID DURING
PREGNANCY WE'RE NOT COLLECTING
THAT ANYMORE AND IT WAS A
WELL-INTENTIONED EFFORT TO MAKE
THE DEATH CERTIFICATE EASIER TO
FILL OUT BUT WE'RE NOT
COLLECTING THE DATA.
THIS HAMPERED OUR ABILITY TO
GATHER DATA ON COVID INFECTION
AND STILLBIRTHS.
THE STUDIES THE CDC HAS DONE
ABOUT HOW AN UNVACCINATED
INFECTION INCREASES THE RISK OF
STILLBIRTH, THEY AREN'T -- FETAL
DEATH CERTIFICATE IS ONE SOURCE
AND THE OTHER IS HOSPITALS.
AND THE EMERGING THREATS
DATABASE WAS COMPARING STATE
COVID DATABASES WITH STATE
STILLBIRTH DATA THEN HOME TESTS
HAVE -- YOU ALL KNOW.
IT'S ENTIRELY STILL POSSIBLE
THAT YOUR O.B. MAY BE ASKING YOU
IF YOU HAD COVID AND THAT
INFORMATION WOULD BE IN THE
PREGNANT PERSON'S MEDICAL FILE
AND MAYBE COULD EVEN SHOW UP IN
THE OTHER PART OF THE FETAL
DEATH CERTIFICATE I'LL BE
HONEST, WHEN I MADE THE
DISCOVERY I WAS LIKE IS THIS
RIGHT WE'RE NOT DOING THIS FOR
STILLBIRTHS AND E-MAILS
DR. MARTIN AT THE CDC AND TO
MAKE SURE I WAS RIGHT ABOUT THIS
AND WE MOVED TO GATHER MORE DATA
ABOUT COVID INFECTIONS AND LIVE
BIRTHS.
WE WANTED TO FOCUS IN ON IS IT
CAUSING LOW BIRTH WEIGHT OR
PREMATURE BIRTHS.
WE NEVER DID IT WITH RESPECT TO
STILLBIRTHS.
WE WORRIED ABOUT COVID INFECTION
INFORMATION WITH RESPECT TO
STI
STILLBIRTHS.
TO ME IT SPEAKS TO A QUESTION OF
HOW COVID IS SUCH AN
AFTERTHOUGHT AND OF COURSE, YES,
HINDSIGHT'S 20/20.
IF WE CAN GO BACK AND FIX ALL
THIS BUT THANK GOODNESS BUT
APRIL 2020 WAS A DIFFICULT TIME
AND STILLBIRTH WAS AN
AFTERTHOUGHT.
I THINK ALL THE SLIDE SAYS IS
POSSIBLE IMPROVEMENTS.
THINGS I WANTED TO SHARE.
NEXT SLIDE.
WE'VE TALKED ABOUT SID DEATHS IN
THESE PRESENTATIONS.
A LOT OF STATES PAY FOR
AUTOPSIES AFTER A SUSPECTED SID
DEATH AND A LOT OF STATES
DECLARED IT A PUBLIC EMERGENCY
WE NEED TO DO WE CAN ABOUT AND
THAT INCLUDES AUTOPSY AND THAT
INCLUDES STATE-PAID FOR
AUTOPSIES.
WE'RE NOT DOING THIS FOR STILL
BIRTH.
WE'RE NOT EVEN DOING THIS FOR
TERM STILLBIRTHS.
RATHER THAN FOCUS ON THE
FRUSTRATION I'D LIKE TO FOCUS ON
THE FACT WE HAVE A BLUEPRINT.
WE HAVE A BLUEPRINT OUT THERE
ALREADY AS TO HOW WE COULD
INCREASE THE NUMBER OF AUTOPSIES
THAT HAPPEN FOR STILL BIRTHS.
IT WOULD BE MORE EXPENSIVE
BECAUSE WE HAVE MORE STILLBIRTHS
BUT WE HAVE A BLUEPRINT FOR
FIGURING OUT HOW YOU DO MORE
AUTOPSIES.
WE'VE HEARD ABOUT REGISTRIES.
AND ARKANSAS HAS ONE TOO.
ARKANSAS CREATED A REPRODUCTIVE
HEALTH MONITORING SYSTEM AND IT
SPECIFICALLY ALSO GATHERED DATA
ON STILLBIRTHS.
SO THIS WASN'T JUST PIGGYBACKING
OFF THE STILLBIRTH REGISTRY.
I DO WANT TO TAKE A STEP TO
MENTION THAT ARKANSAS IS NOT
DOING WELL WITH ITS STILLBIRTH
RATE BUT WE DO HAVE A PRETTY
GOOD SYSTEM FOR GATHERING DATA
HERE.
THE LAST THING I WANT TO LEAVE
YOU WITH AND THIS IS SOMETHING I
RUN INTO MY RESEARCH ALL THE
TIME.
I WANT TO EMPHASIZE THAT GOING
FORWARD WHEN WE TALK ABOUT
ADDITIONAL RESEARCH, WE NEED TO
FOCUS ON RESEARCH AS PREVENTION
AND THE PURPOSE IS TO PREVENT
AND NOT TO -- AND BABIES ARE
STILL BEING STILLBORN.
AND I THINK BOTH SIDES IN THE
ABORTION DEBATE ASSUME EITHER A
PREGNANCY ENDS IN ABORTION OR
LIVING BABY AND THE
ANTI-ABORTION SIDE WANTS TO
EMPHASIZE THE BABE YES SHOULD BE
BORN AND WILL BE BORN AND THE
ABORTION RIGHT SIDE WANTS TO SAY
IF ABORTION IS NOT AVAILABLE
EVERYONE WOULD BE FORCED INTO
PARENTHOOD.
PREGNANCY LOSS DOESN'T HAPPEN.
AND THE FRAMING LEADS TO US
BLAME THE PREGNANT PERSON WHEN A
BABY IS STILL BORN.
WE HAD WOMEN ARRESTED FOR
CAUSING THEIR CHILD'S STILLBIRTH
AND THOSE WOMEN ARE ALMOST
ALWAYS MARGINALIZED.
AND IT WAS POOR WHITE WOMEN WHO
WERE ARRESTED AND PROSECUTED AND
IT'S DRUG USE AND I ALWAYS PAUSE
BECAUSE I'M AMAZED AND THE
MEDICAL DISCUSSION IS IT'S
DIFFICULT TO FIGURE OUT THE
CAUSE OF STILLBIRTH AND WE HAVE
PEOPLE IN JAIL FOR CAUSING THEIR
KIDDO'S STILL BIRTH AND THE JURY
DETERMINE THE CONDUCT CAUSED THE
STILLBIRTH BEYOND A REASONABLE
DOUBT.
AND HER BABY WAS BORN WITH THE
CORD WRAPPED AROUND THE BABY'S
NECK AND USUALLY THE REPORT IS
WELL, IT HAPPENS.
BUT THEY TESTED HER BLOOD AND
THEY FOUND COCAINE IN THE BLOOD
AND THE STATE MEDICAL EXAMINER
WHO WASN'T EVEN CERTIFIED CON
INCLUDED COCAINE WAS THE CAUSE
AND THE JURY FOUND BEYOND THE
REASONABLE DOUBT THE COCAINE
CAUSED THE BABY'S STILLBIRTH.
WE NEED TO KEEP THE STORIES IN
MIND AND PREGNANCY STILL BIRTH
ALMOST CRIME SCENES.
AND THAT DOESN'T PREVENT AN
ARREST AND THE ADDITIONAL TRAUMA
THAT CAN COME FROM AN ARREST AND
I'M REALLY CONCERNED ABOUT THE
QUALITY OF MEDICAL CARE THAT
PEOPLE OVERSEE WHEN THEY'RE
SUSPECTED.
I'M CONCERNED ABOUT THE QUALITY
OF MEDICAL AREA EVERYONE
EXPERIENCES THEIR BABY IS IT
STILLBORN WHEN WOMEN ARE
SUSPECTED HOW WILL THEY BE
TREATED.
TWO WOMEN IN CALIFORNIA SPENT
TIME IN PRISON AND ANOTHER WOMAN
FELL ASLEEP DURING A DIFFICULT
LABOR AND THEY TOOK THE BABY
AWAY SO I'M CONCERNED ABOUT
TREATMENT AND ADDING THE
TRAUMATIZATION FROM BEING
INVESTIGATED FROM THE POLICE AND
THESE ARE ALSO MARGINALIZED
PERSONS WHO WILL NOT HAVE EASY
ACCESS TO MENTAL HEALTH CARE.
THAT'S A BIT OF A SOAPBOX BUT I
JUST WANT US TO KEEP THIS IN
MIND.
RESEARCH IS ABOUT PREVENTING NOT
BLAMING.
I COULDN'T RESIST SHARING A
PICTURE OF MY KIDDO WHEN HE WAS
BORN AND WE COUNT WHAT MATTERS
AND THE FACT THAT WE'RE NOT
DOING THE BEST JOB OF COUNTING
STILLBIRTHS TO ME COMMUNICATES
WE -- STILL BIRTHS DON'T
MATTER -- THEY DON'T MATTER AND
AGAIN, THANK YOU AGAIN FOR THE
OPPORTUNITY.
>>THANK YOU, PROFESSOR LENS.
THIS IS A POWERFUL PRESENTATION.
YOUR BACKGROUND AS A MOM WITH
STILLBIRTH AND YOUR EXPERTISE IN
THE LEGAL PROFESSIONAL AND RICH
CONVERSATION AROUND ALMOST A
STATE OF DISARRAY THAT SURROUNDS
STILLBIRTHS.
WE HAVE PLENTY OF TIME FOR
DISCUSSION.
BEFORE I HAND IT OVER TO
DR. LONGO, I WANTS TO SEE IF
DR. BIANCHI HAD COMMENTS TO
MAKE.
>>THANK YOU, LUCKY.
I WANT TO THANK THE SPEAKERS FOR
THEIR PRESENTATIONS.
I ALSO WANTED TO CLARIFY THERE
SEEMS TO BE SOME
MISUNDERSTANDING ON TWITTER THAT
WE ARE NOT INCLUDING THE VOICES
OF PEOPLE WITH LIVED EXPERIENCE
OF STILL BIRTH.
WELL, YOU JUST HEARD JILL LENS
DESCRIBING HER EXPERIENCE.
WE ESTABLISHED JANUARY 5 SESSION
IS PURELY FOCUSSED ON HEARING
THE VOICES OF PEOPLE
EXPERIENCING STILLBIRTH.
MAYBE THAT WASN'T CLEAR AT THE
BEGINNING OF THE WE'RE GOING
DEDICATE THAT SESSION TO HEARING
FROM YOU BUT IN ORGANIZING THE
SESSIONS TODAY AND THE ONE ON
DECEMBER 9, WE NEEDED TO
ORGANIZE EACH OF THE SESSIONS TO
RESPOND TO THE MANDATE FROM
CONGRESS AND SO YOU'VE HEARD
ABOUT THE FOUR TOPICS WE'RE
ADDRESSING AND TODAY'S MORNING
SESSION IS ON CURRENT BARRIERS
TO COLLECTING DATA ON
STILLBIRTHS.
WE ARE REQUIRED BY CONGRESS TO
ADDRESS.
I I REALIZE FORMS DON'T REFLECT
THE EMOTIONS BUT THEY ARE DATA
TO GIVE US INFORMATION ON HOW TO
PROPOSE A RESEARCH AGENDA AND
WHERE POSSIBLE WE HAVE EXPERT
SPEAKERS WHO THEY THEMSELVES
EXPERIENCE STILLBIRTH.
KEEP THAT IN MIND AS WITH YOU
WRITE ON TWITTER.
WE'RE LISTENING TO YOU AND
INCORPORATING WHAT YOU SAID INTO
THE AGENDA BUT PLEASE GIVE US A
LITTLE BIT OF TIME TO GO THROUGH
THE AGENDA AND AGAIN WE WELCOME
YOUR VOICES IN WRITING TODAY IN
THE LIVE FEED BUT WE'RE
DEDICATING AN ADDITIONAL SESSION
WE DIDN'T ORIGNALLY HAVE
SCHEDULED IN JANUARY SO WE CAN
HEAR FROM YOU DIRECTLY.
>>THANK YOU.
I WANTED TO THANKS ALL THE
SPEAKERS.
THIS WAS WONDERFUL.
WE'RE TRYING TO ANSWER QUESTIONS
TO MOVE FORWARD TO ADD THE RIGHT
QUESTION FOR US.
I ALSO WANT TO REMIND AGAIN WE
HAVE THE REQUEST OF INFORMATION
ON POSTED ON THE NICHD WHICH HAS
YOUR INPUT REGARDING THE
INVESTMENT OF STRATEGIES TO
INCLUDE THE IMPACT OF NIH IN THE
RESEARCH OF STILLBIRTHS.
USE THAT TOOL ALSO TO REACH OUT
TO US TO INCORPORATE YOUR
FEEDBACK AND AS DR. BIANCHI SAID
USE THE RESEARCH FOR THE MEETING
AND MEETING WITH THE PUBLIC ON
JANUARY 5, 3-5.
AND NOW WE'RE GOING TRANSITION
TO THE MEETING DISCUSSION ON THE
FIRST PART WITH OUR SPEAKERS.
NOW SEVERAL QUESTIONS CAME WERE
ABOUT THE PLACENTAL AND FETAL
AUTOPSY.
WE CAN ADD DISCUSSION AROUND
THAT BUT I ALSO WANT TO LET YOU
KNOW WE HAVE SPEAKERS TO ADDRESS
THE COMPONENT ON THE TO THE
MEETING AND KNOW IT'S AN
IMPORTANT PART OF THE DATA
COLLECTION.
AND WE CAN UTILIZE THE STILL
BIRTH DEFECT REGISTRY TO CREATE
THE SURVEILLANCE.
PLEASE, IT'S OPEN TO THE TASK
FORCE NOW.
>>I HAVE A FOR PROFESSOR LENS
TO BEGIN WITH.
JILL, I ASSUME IF YOU KNEW WHAT
YOU KNOW NOW YOU WOULD HAVE
OPTED FOR AN AUTOPSY FOR CALEB.
WHAT ELSE WOULD YOU HAVE DONE
WITH A REARVIEW MIRROR.
WHAT WOULD HAVE YOU DONE
DIFFERENTLY.
>>AND THANK YOU FOR SAYING
CALEB'S NAME, BY THE WAY, I GET
A KICK OUT OF THAT.
I WOULD HAVE DONE MEDICALLY,
I'LL BE HONEST THE AUTOPSY
QUESTION STILL DIFFICULT FOR ME.
I DON'T KNOW WHAT I WOULD HAVE
DONE.
I WAS VERY FORTUNATE THOUGH TO
GET INVOLVED IN THE STILLBIRTH
COMMUNITY AND IT WAS PROBABLY
THREE YEARS LATER I WAS ABLE TO
LEARN FROM HIM THAT IT WASN'T A
PLACENTAL ISSUE AND I LIVED WITH
THE IDEA OF BEING AN ABRUPTION
MOM AND THAT WAS DIFFICULT FOR
ME.
AGAIN, I'M SO PRIVILEGED TO EVEN
HAVE FOUND THE ADDITIONAL
INFORMATION BECAUSE IT'S ONE
THING THAT'S DIFFICULT.
FINDING OUT WHETHER OUR KIDS
DIED SHOULD DEPEND ON WHETHER
YOU CAN AFFORD IT.
IN THE UNITED STATES WHERE WE
ARE CAPABLE OF PROVIDING OUR
PATIENTS WITH THE MOST SCENESED
HEALTH CARE BECAUSE HEALTH CARE
LAWS ARE MANAGED AT THE STATE
LEVEL, THERE'S SUCH LACK OF
STANDARDIZATION AND AN
OPPORTUNITY TO STANDARDIZE BASIC
ELEMENTS OF DATA COLLECTION AND
REPORTING SO HOW DO WE DEAL
WHERE THE SUPREME COURT IS
PUSHING DOWN THOUGH THE STATE
LEVEL MORE AND MORE AUTHORITY
AND RESPONSIBILITY?
>>I THINK UNFORTUNATELY THE
ANSWER IS MONEY.
EVEN THE MODEL STATISTICS ACT
DOESN'T USE THE STANDARD 20
WEEKS I DON'T UNDERSTAND AND WE
COULD GIVE THEM MONEY TO
ENCOURAGE THEM AS FAR AS DOING
STILLBIRTH RESEARCH BUT WHERE
DOES THAT MONEY COME FROM IS A
QUESTION.
>>ONE QUESTION FOR MS. KIM
PIPER, AS I LISTEN TO THE
PRESENTATION AROUND ISSP, TWO
QUESTIONS FOR KIM.
FIRST, IT APPEARS TO ME EIGHT OF
THIS IS STILL MANUALLY DONE AND
CUMBERSOME GIVEN HOW MANY TIMES
DATA IS TRANSFERRED FROM ONE
FORM TO THE NEXT FORM ULTIMATELY
TO PERHAPS A DATABASE WHICH
LEADS TO POOR CASE ASCERTAINMENT
ALSO.
COULD YOU COMMENT HOW EFFICIENT
THAT ENTIRE PROCESS IS OR HOW WE
COULD BE MADE BETTER, KIM, IF
YOU HAD PLENTY OF THESE SOURCES?
>>YEAH, PLENTY OF RESOURCES
WOULD BE EXCELLENT BUT THE TWO
SEPARATE PROCESSES WITH THE
FETAL DEATH EVALUATION FORM
WHICH IS VOLUNTARY THE HOSPITALS
FILL OUT, THAT IS A VERY
INFORMAL ASSESSMENT TOOL WE USE
TO SEE WHAT'S GOING ON WITH THE
FETAL DEATHS AND THE
CIRCUMSTANCES AROUND FETAL DEATH
AND THOSE ARE THE FORMS THAT
USUALLY THE NURSING STAFF FILL
OUT AND SUBMIT TO ME AND I'LL
FORWARD THE INFORMATION OR
SPREAD SHEET INFORMATION ON TO
OUR REGISTRY WHO ALSO DOES
THE -- USES THE INFORMATION ON
FETAL DEATH CERTIFICATES FOR
THEIR ASCERTAINMENT IT'S A FORM
TO USE A CASE OF STILLBIRTH
SUBMITTED BY THE HOSPITAL BUT
THE OFFICIAL PROCESS IS THROUGH
THE BIRTH DEFECTS REGISTRY AND
THE ACTIVE SURVEILLANCE METHODS
AND THEY'RE USING THE FIELD
DEATH CERTIFICATES AND REVIEWING
MEDICAL RECORDS FOR CASES OF
FETAL DEATH.
THAT PROCESS IS ELECTRONIC AND
THERE'S NO HAND-OFFS WITH THAT
SYSTEM SO THAT'S OUR OFFICIAL
PROCESS RIGHT NOW WITH THE FETAL
DEATH EVALUATION FORMS KIND OF
BEING AN ANCILLARY PROJECT RIGHT
NOW.
>>THANK YOU.
OVER TO YOU.
>>THANK YOU TO ALL THE
SPEAKERS.
FANTASTIC TALKS AFTER HEARING
ABOUT THE WONDERFUL STUDIES DONE
THAT HAVE USED A PROTOCOL WHERE
FAMILIES HAVE BEEN INTERVIEWED
AND STUDIES PRESENTED IN IOWA,
THE CDC FUNDED STUDY, STILLBIRTH
COLLATERAL RESEARCH NETWORK AND
WHERE THERE'S SPECIFIC PROTOCOL
WHERE AN ATTEMPT AT WISCONSIN
WHERE THE SPECIFIC STILLBIRTH
PROTOCOL AND MUCH INFORMATION IS
POSSIBLE.
THE IDEA AND I GUESS STARTING
WITH THE CDC, DOING SOME SORT OF
INDIVIDUAL META-ANALYSIS TAKING
THE DATA AND MATERNAL INTERVIEWS
AND SEE IF WE CAN COMBINE THE
INFORMATION ON U.S.-BASED
PREGNANCIES.
>>THANK YOU.
TRYING TO PULL TOGETHER
DIFFERENT DATA WE HAVE TO TRY TO
QUESTIONS OUT THERE ARE A GOOD
STEP FORWARD AND THE CHALLENGES
IS THE SAMPLES WE HAVE AVAILABLE
ARE NOT GOING TO BE
REPRESENTATIVE OF THE ENTIRE
POPULATION AND BY INCREASING THE
UPTAKE AND AVAILABILITY IS
IMPORTANT AND WE ARE CONTINUING
AND IT WOULD BE GREAT TO HAVE
ADDITIONAL SITES THAT WE CAN
EACH AND OUT DO INTERVIEWS FOR
THE PARENTS OF STILLBIRTHS.
THAT'S SOMETHING WE'RE ALWAYS
INTERESTED IN IN EXPANDING AND
DOING MORE ON SO THAT'S
SOMETHING WE WORK TOWARDS.
>>JUST TO FOLLOW-UP, I THINK WE
HEAR LOUD AND CLEAR THAT PARENTS
WANT TO HELP US FIND ANSWERS AND
WE HAVE THEM PART OF THE STUDIES
AND ASK THEM IF THEY'RE WILLING
TO BE INTERVIEWED AND GIVE A
BLOOD SAMPLE.
HEARING THE WONDERFUL WORK DONE
AT THE CDC AND IOWA AND
WISCONSIN'S DONE WONDERFUL WORK
AND UTAH'S DOING WONDERFUL WORK
WITH THE FAMILIES WE'VE
IDENTIFIED NOW TO SEE IF WE CAN
DO A DEEPER DIVE WITH ALL THE
INFORMATION WE HAVE AVAILABLE
BECAUSE THE FETAL DEATH
CERTIFICATE THERE'S SO MUCH THAT
NEEDS TO BE DONE AND JILL, THANK
YOU FOR YOUR TALK.
IT'S EXTREMELY INSPIRING AND
MOTIVATING AND IN TERMS OF THE
STILL BIRTH COLLABORATIVE
RESEARCH NETWORK, DR. DUDLEY
PRESENTED THE CLASSIFICATION,
GESTATIONAL DIABETES WOULD NOT
BE CONSIDERED A CAUSE.
JUST WANTED TO SAY THAT.
THANK YOU FOR TALKING ABOUT YOUR
EXPERIENCE.
>>GOOD MORNING.
THIS IS GOOD TIMING BECAUSE I
WANTED TO PIGGY BACK ON WHAT
DR. REDDY WAS SAYING I TALK WITH
THE UTAH'S STILLBIRTHS PROGRAM
WHICH IS KIND OF LIKE A LOOK AT
THE SOCIAL DETERMINATES OF
HEALTH AND IT'S AN INTERVIEW
WITH THE PARENT THAT HAS
EXPERIENCED A FETAL DEATH.
AND I DON'T NEED TO ASK MY
QUESTION ANYMORE BECAUSE I WAS
CURIOUS IN IOWA TO FIND OUT HOW
SOON AFTER THE PATERNAL
INTERVIEW WAS CONDUCTED BECAUSE
I DO ALSO AGREE WITH YOU OF THE
IMPORTANCE OF GETTING THE
PARENTS' VOICE INVOLVED I LIKE
THE ACTIVE SURVEILLANCE WITH CDC
AND THE DIFFERENT SITES AND
LOOKING AT THE DIFFERENCE
PRESENTATIONS FROM IOWA IS
COMPELLING AND I'M ALSO CURIOUS
TO SEE AND LOOKING AT THE SOCIAL
SIDE AND OTHER INFORMATION THAT
MAY NOT BE FOUND ON THE
CERTIFICATE.
OVER, THANK YOU.
>>THE MATERNAL PART IS MY
FAVORITE PART OF A FETAL DEATH
INFORMATION FORM.
THE INFORMATION THE PARENTS CAN
PROVIDE TO ILLUMINATE THEIR
PERCEPTION OF THE CIRCUMSTANCES
AROUND WHAT HAS HAPPENED IS VERY
BENEFICIAL.
THOSE FORMS ARE USUALLY FILLED
OUT BY THE NURSING STAFF.
SOMETIMES THE MEDICAL PROVIDERS
WILL FILL THEM OUT AND SEND THEM
IN BUT OFTEN IT'S THE NURSING
STAFF AND THEY TEND TO HAVE
CLOSER RELATIONSHIP WITH THE
FAMILIES AT THAT POINT.
AND THEY FILL THE FORM OUT AND
SUBMIT IT WITHIN A DAY OR TWO OF
THE CONCEPT OF THE STILLBIRTH.
>>THANK YOU.
A COUPLE POINTS AND A QUESTION.
ONE THING IS ABOUT CONSENTING
WOMEN FOR AUTOPSIES.
IN OUR EXPERIENCE WITH SCREEN,
MY VIEW OF THIS IS THAT
CONSENTING FOR AUTOPSY IS A
PROFESSION NOT AN EVENT.
MOST PEOPLE JUST DO A ONE-OFF,
HEY, YOU WANT TO SIGN THIS FORM
ABOUT AN AUTOPSY AND THAT'S JUST
NOT EFFICIENT.
YOU HAVE TO BROACH THE TOPIC AND
WORK WITH THE PATIENT AND
SOMETIMES REQUIRES MULTIPLE
VISITS TO OBTAIN CONSENT AND AT
LEAST IN THE STILLBIRTH
COLLABORATIVE RESEARCH NETWORK
WE WERE ABLE TO OBTAIN CONSENT
WITH 50% TO 60% OF OUR PATIENTS
WHICH WAS OUR TARGET, IT WAS OUR
GOAL.
SECOND, THERE'S A PREVAILING
OPINION AND I STILL ENCOUNTER
OFTEN THAT WOMEN AND FAMILIES
WHO SUFFER STILLBIRTH DON'T WANT
TALK ABOUT WHAT'S HAPPENED TO
THEM.
THAT'S ENTIRELY WRONG.
OUR EXPERIENCE WAS THESE
PATIENTS DESPERATELY WANT TO
TALK ABOUT THIS AND TRYING TO
PROCESS ALL THE EMOTIONS AND
TALKING THROUGH THE IS THE WAY
THEY DO THIS AND IT'S CRITICALLY
IMPORTANT FOR THEM TOOK ABOUT
THIS ESPECIALLY WITH HEALTH CARE
PROVIDERS WHO ARE SYMPATHETIC TO
WHAT HAPPENED TO THEM.
MY QUESTION TO KIM PIPER THOUGH
IS HOW MUCH BURSTING FACILITIES
DO YOU HAVE IN IOWA --
BIRTHINGBIRTH
BIRTHINGBIRTH IING
FIRST HALVES DO YOU HAVE IN
IOWA?
>>ABOUT 60.
>>WHAT ARE THE AVERAGE DELIVERY
VOLUMES?
>>WELL, OBVIOUSLY THERE'S A
RANGE.
IOWA HAS ABOUT 6,000 BIRTHS A
YEAR SO --
>>I DID MY RESIDENCY AT IOWA.
IT'S KIND OF LIKE A LAWYER --
YOU ONLY ASK THE QUESTION YOU
KNOW THE ANSWER TO.
THE THING IS LIKE A LOT OF THESE
FACILITIES ARE GOING TO BE 300,
400 WOMEN A YEAR AND HAVE ONE
STILLBIRTH.
I CAN SEE HOW THAT WOULD BE A
CHALLENGE.
IN OTHER STATES, FOR EXAMPLE, AT
LEAST HERE IN VIRGINIA WE HAVE
55 DELIVERING FACILITIES SPREAD
ACROSS A HUGE GEOGRAPHIC REGION.
YOU DON'T REALIZE HOW LONG
VIRGINIA IS UNTIL YOU LIVE HERE.
IT'S A LONG STATE.
YOU THINK ABOUT TEXAS AND
THERE'S ABOUT 240 DELIVERY
FACILITIES OR CALIFORNIA WHERE
THERE'S ABOUT 240 OR 260.
TRYING TO REPLICATE THAT AND
SCALE IT UP WOULD BE A
CHALLENGE, I THINK.
DO YOU HAVE THOUGHTS ABOUT THAT
HOW YOU CAN SCALE THIS UP TO A
LARGER STATE.
ARE YOU ASKING ME?
>>YEAH, I'M ASKING YOU.
YOU'VE BEEN DOING THE WORK.
>>THE KICKER IS IT'S VOLUNTARY
THOUGH WE HAVE 60 BIRTHING
FACILITIES NOT ALL SUBMIT THE
INFORMATION.
I DON'T NECESSARILY HAVE A
CARROT OR A HAMMER TO ENCOURAGE
THEM TO DO THAT OTHER THAN THE
VALUE AND THE INFORMATION THAT
THEY'RE ABLE TO PROVIDE TO
INFORM POTENTIAL STILLBIRTH
PREVENTION EFFORTS.
SO SCALING IT UP DEFINITELY YOU
WOULD LOSE THE RELATIONSHIP THAT
YOU WOULD HAVE WITH WITH THE
FACILITIES BEING IN A SMALLER
STATE.
BUT I THINK RAMPING UP, I DON'T
THINK THAT WOULD TAKE A WHOLE
LOT TO DO THAT.
BUT THE THING WOULD JUST BE
HAVING THEM SEE THE VALUE AND
PROVIDING THIS ADDITIONAL
INFORMATION.
>>THANK YOU.
>>THANKS.
FIRST, THANKS TO ALL THE GREAT
SPEAKERS THIS MORNING.
IT WAS FUN AND A LOT OF REALLY
INNOVATIVE APPROACHES AND A HAVE
A COMMENT MORE THAN A QUESTION.
I WANTED TO FRAME THE COMMENTS
IN A WAY TO POINT THE WAY
FORWARD AS FAR AS WHERE RESEARCH
GOES.
THERE'S DIFFERENT COMPONENTS TO
THIS THING.
AND ONE MAJOR COMPONENT IS
LOGISTICAL AND ONE IS ECONOMIC.
AND THEN A MAJOR COMPONENT IS
RESEARCH AND I THINK AS AN
UNDERSTAND IT, THE NIH'S ROLE IS
GOING TO BE MORE RESEARCH.
SO HOW CAN WE FRAME THIS AS
RESEARCH?
I THINK SEVERAL THINGS WERE WELL
HIGHLIGHTED.
THE QUALITY OF THE FETAL DEATH
CERTIFICATES IS NOT REAL GOOD.
IT'S NOT BECAUSE PEOPLE DON'T
CARE.
IT'S BECAUSE OF RESOURCES.
AND ONE IS INACCURATE DATA
BECAUSE SO MUCH THE EVALUATION
OF THE STILLBIRTH HAPPENS AFTER
THE FORM IS FILLED OUT AND
THERE'S WAY TO ACCESS ELECTRONIC
HEALTH RECORD AND IMPROVE THE
QUALITY OF THE DATA BUT THE
SECOND PIECE -- AND I THINK
EVERYONE WORKING IN THE FIELD
FOR A WHILE REALIZES THIS IS
EVEN IF YOU GET THE ACCURATE
DATA, DETERMINING A CAUSE OF
STILLBIRTH IS DIFFICULT.
OFTEN IT REQUIRES SEVERAL
EXPERTS DISCUSSING ALL THE
INFORMATION AND PUTTING IT IN
CONTEXT AND IDEALLY INTERVIEWING
FAMILIES AND THEN MAKING A
SOMEWHAT SUBJECTIVE
DETERMINATION OF THE CAUSE OF
STILLBIRTH AND IT'S USUALLY
REFERRED TO AS AUDITS AND WE'RE
SEEING THAT IN IOWA AND IN
CAPTURING SOCIAL DETERMINATES IT
REQUIRES AN INTERVIEW AND AS THE
VERY EXPENSIVE TO DO THOSE KINDS
OF THINGS.
THE SECOND PIECE IS WE'RE NOT
DOING ADEQUATE EVALUATIONS.
ONLY ABOUT 20% OF FOLKS HAVE
AUTOPSIES AND A LOT OF FOLKS
DON'T HAVE OTHER COMPONENTS OF
THE STILLBIRTH EVALUATION.
SO WE NEED A BETTER EVALUATION
AND MORE COMPREHENSIVE
EVALUATION OF EACH CASE AND THEN
WE NEED TO TRACK THOSE DATA.
AND I THINK ALL THOSE THINGS
WERE MADE UNEQUIVOCALLY CLEAR BY
OUR EXCELLENT SPEAKERS.
THE PROBLEM IS THAT IT'S SO
EXPENSIVE TO JUST GO AHEAD AND
DO THAT ON EVERY CASE IN THE
UNITED STATES.
SO IN ORDER FOR US TO JUSTIFY
THE EXPENSE FOR THE HEALTH CARE
SYSTEM AND FOR EACH STATE HEALTH
DEPARTMENT AND THE CDC, I THINK
WE NEED TO DETERMINE THROUGH
RESEARCH WHICH APPROACHES ARE
MOST VALUABLE AND WHICH
APPROACHES ARE BEST FOR FAMILIES
AND WHICH APPROACHES ARE MOST
COST EFFECTIVE.
THE KINDS OF RESEARCH THAT MIGHT
BE IMPORTANT WOULD BE ONE AND
THE MOST IMPORTANT WAYS TO
COUNSEL FAMILIES AND TO HELP
THEM DECIDE THEY WANT TO DO
AUTOPSIES AND THEN WORKING WITH
EACH STATE TO DO IMPLEMENTATION
SCIENCE.
HOW DO YOU GET THE MOST ACCURATE
DATA AND CONDUCT AUDITS WITH
FAMILIES TO CAPTURE SOCIAL
DETERMINATES AND CAPTURE THE
CAUSES.
IT WOULD BE GREAT FOR ALL THE
PEOPLE INVOLVED HERE TO TOUCH
BASE WITH EACH OTHER AND SEE HOW
WE CAN DO RESEARCH TO DETERMINE
THE BEST WAY TO IMPROVE
STILLBIRTH EVALUATION AND THE
BEST WAY TO IMPROVE ACCURACY AND
IT WOULD BE EASIER TO PUSH
LEGISLATION THROUGH TO FUND
STATE HEALTH DEPARTMENTS TO THEN
IMPLEMENT THOSE THINGS.
I WANTED TO AT LEAST TRY TO
FRAME THE DISCUSSION IN TERMS OF
WHAT ARE THE BEST RESEARCH IDEAS
THAT CAN COME OUT OF THIS AND
COULD PEOPLE INVOLVED IN THIS
GROUP AS WELL AS OTHERS PARTNER
TO TRY TO CONDUCT THAT RESEARCH.
THANKS.
>>THAT'S A WONDERFUL POINT ALL
OF YOU HAVE BROUGHT UP.
AND I THINK WE'RE CLEAR IT'S IN
THE COLLECTION OF THE DATA AND
CAN WE STANDARDIZE TOOLS.
I'M NOT SURE IF I'M MISSING
ANYONE FOR QUESTION OR
DISCUSSION AND ANSWERING SOME OF
THE COMMENT I BROUGHT UP?
LIKE MS. NOBLE PIPER, I MAY HAVE
MISSED THE BUDGET YOU WERE
SAYING -- I WAS CURIOUS WHAT IT
TOOK TO GET THERE IN TIME LINE
AND MECHANISMS AND GIVING AN
IDEA OF THE ORGANIZATION
INFRASTRUCTURE AND THE TIME AND
BUDGET JUST TO SEE BACK TO THE
OTHER QUESTION THE FEASIBILITY
OF SCALING UP.
>>WE HAD A WHOPPING $26,000 FOR
THE EVALUATION FORMS TO START
THAT AND THAT PAID FOR THE WORK
GROUP, CONVENING THE WORK GROUP
OF EXPERTS AND THE ORIGINAL
DRAFTING AND EDITING OF THE
FETAL DEATH EVALUATION PROTOCOL
ON THE FORM.
SINCE THEN IT HAS BEEN -- I JUST
DO IT.
THERE'S NO SPECIFIC FUNDING OR
OTHER RESOURCES PROVIDED TO DO
THAT.
SO DEFINITELY, IF WE HAVE MORE
RESOURCES WE COULD DO A LOT MORE
WITH THAT PROJECT AS FAR AS
EXPANDING IT AND GETTING THE
BIRTHING FACILITIES TO SUBMIT
THESE FORMS AND SEE THE
IMPORTANCE OF THAT AND
DISSEMINATING SOME OF THE
INFORMATION THAT WE'RE GLEAN
FROM THE FORMS AS WELL.
AS FAR AS THE BIRTH DEFECTS
REGISTRY WE HAVE THE COOPERATIVE
AGREEMENT WITH CDC TO DO THAT
AND THAT'S ABOUT $300,000 A
YEAR.
>>THANK YOU SO MUCH.
DR. JAIN OR DR. REDDY.
>>I WANT TO BRING BACK
DR. BIANCHI FOR A MOMENT BECAUSE
IT'S IMPORTANT TO CLARIFY THE
NICHD AND NIH IN GENERAL IS
CHARGED WITH RESEARCH, LOOKING
INTO THE WHY.
THE WHAT AND HOW IS REALLY THE
DOMAIN OF THE HUMAN HEALTH
SERVICES, PUBLIC HEALTH
AUTHORITIES AND CMS AND OTHER
AREAS WHERE HEALTH CARE IS
MANAGED AND DISTRIBUTED.
DIANA, AS I LOOK AT THE COMMENTS
POSTED BY PEOPLE OBVIOUSLY ARE
VERY EMOTIONALLY TO THIS CAUSE,
WE'LL NEED TO MAKE SURE WE FRAME
OUR PRIORITIES IN A WAY WE STAY
FOCUSSED ON OUR RESEARCH
PRIORITIES THAT WILL HOPEFULLY
LEAD TO PROGRESS IN THE FIELD
BUT ULTIMATELY THERE'S A BIGGER
COMPONENT TO STILLBIRTH
PREVENTION AND MANAGEMENT AND
EVERYTHING THAT KIM AND JILL AND
OTHERS SPOKE TO ABOUT WHICH
NEEDS TO BE MANAGED IN THE
PUBLIC HEALTH DOMAIN.
>>THANK YOU, LUCKY.
I AGREE WITH YOU.
THIS IS NOT OBVIOUSLY
EXCLUSIVELY A RESEARCH PROBLEM.
WE'VE HEARD ABOUT PROBLEMS WITH
MEDICAID COVERING OF AN AUTOPSY
THAT THE NOT IN NIH'S PURVIEW.
I THINK WE'LL TALK ABOUT THOSE
WHEN IT COMES TIME TO WRITING
THE REPORT, THE FOCUS OF OUR
REPORT WILL NEED TO BE ON
ESTABLISHING A RESEARCH AGENDA
FOR PREVENTION.
AS PART OF THE REPORT I'M SURE
WE CAN MENTION THE NEED FOR
OTHER FEDERAL AGENCIES TO BE
INVOLVED.
YOU'VE HEARD FROM THE CDC,
DR. REEFHUIS GAVE AN EXCELLENT
PRESENTATION AND THEY CAN
PARTNER WITH US ON HOW TO MOVE
FORWARD WE CAN'T SOLVE ALL THE
PROBLEMS WE'RE LISTENING AND
MANY THINGS TO DO WITH CARE COME
UNDER THE PURVIEW OF OTHER
AGENCIES AND WE HAVE DEALING
WITH SIMILAR ISSUES WITH
MATERNAL MORTALITY AND SEVERE
MORBIDITY WHERE NIH HAS A
RESEARCH AGENDA BUT WE ALSO
PARTNER TO ADDRESS THE ISSUE OF
HOW TO DECREASE MATERNAL
MORTALITY IN THE COUNTRY.
AGAIN, I SAID IT LAST TIME AND
I'LL SAY IT AGAIN, OUR FOCUS IS
ON RESEARCH WHICH IS DIRECTLY
LINKED TO PREVENTION AND THAT'S
WHAT WE NEED TO FOCUS ON.
THAT'S OUR DELIVERABLE.
NOW, DID I HAVE A QUESTION FOR
BOTH OF YOU, SO PEOPLE ARE
WRITING IN TO THE SUPPOSEDLY THE
LIVE DISCUSSION AND SENDING
E-MAILS TO THE BEZEL GROUP.
IS ANYONE LOOKING AT THOSE?
CAN WE ASK SOME OF THOSE
QUESTIONS?
>>WE'RE LOOKING AT THOSE.
SOME ARE ABOUT THE PLACENTA
PATHOLOGY AND WE CAN OPEN THAT
UP NEXT SESSION AND SOME WERE
JUST ABOUT WHAT YOU SAID AND WE
WERE EXPLAINING THE RESTRICTION
OF THE TIME AND ONE WERE SENDING
IN AN E-MAIL SHARING WITH US THE
WORK FROM AUSTRALIA ON THE
STILLBIRTH CENTER FOR RESEARCH
EXCELLENCE WHICH I DON'T KNOW IF
ANYONE MAY BE ON THE TASK FORCE
IS FAMILIAR I HEARD ABOUT BUT I
DON'T KNOW THE DETAIL.
AND THIS I BELIEVE IS ON THE
DATA COLLECTION AND WE WERE
APPRECIATING WITH DR. LENS WITH
US TODAY AND WE HAVE MORE JUST
TO LET YOU KNOW EVERYONE IS
LISTENING.
WE HAVE MORE THAN ARE GOING TO
BE IN THE NEXT SECTION SPEAKER
THAT I EXPERIENCE.
I HAVE TRIED TO INCORPORATE AS
MUCH AS WE CAN.
YEAH, I DON'T HAVE ANOTHER
QUESTION BUT I SEE DR. HAHN ON
CAMERA MAYBE SHE HAS SOMETHING
SHE WANTS TO SHARE.
>>I WANTED TO THANK DR. BIANCHI
FOR THOSE COMMENTS AND NOTE THAT
BECAUSE YOU DO HAVE THE PARTNERS
AS PART OF THE TASK FORCE THAT
THE REPORT COULD INCLUDE
RECOMMENDATIONS TO AGENCIES IF
YOU FEEL THOSE ARE APPROPRIATE.
>>I ALSO WANT TO THANK YOU FOR
THE ARTICLE WHICH I READ AND
PART OF WHY YOU WERE INVITED
TODAY.
YOU THOUGHT YOU PRESENTED NOT
ONLY THE PERSONAL EXPERIENCE BUT
FROM THE LENS OF THE LEGAL
PERSPECTIVE.
THANK YOU FOR SENDING THAT.
>>MONICA, IF I CAN PROPOSE, I
KNOW WE HAVE A LONG DAY AND WE
DIDN'T FACTOR IN A LUNCH BREAK
WE ONLY HAD A 10 MINUTE BREAK.
I MAY ASK WE BREAK OVER HERE AND
GIVE EVERYONE ENOUGH TIME TO
GRAB A BITE TO EAT AND THEN
REASSEMBLE AT 12:30.
I DO WANT TO JUST SUMMARIZE THIS
MORNING'S SESSION BY BRINGING
BACK PETER WHEN HE SAID WHAT WE
CAN'T MEASURE PROPERLY, WE CAN'T
IMPROVE.
AND SO I THINK THE STARTING
POINT IN ANY QUEST TO TACKLE
STILLBIRTH AS A MAJOR PUBLIC
HEALTH PROBLEM HAS TO BE
ACCURATE MEASUREMENT CASE,
ASCERTAINMENT AND FIGURING OUT
WHAT LED TO THE FETAL DEMISE.
IT'S AN EXCRUCIATINGLY PAINFUL
EXPERIENCE.
I REMEMBER MY OLDER BROTHER, HIS
WIFE HAD A STILLBIRTH WHEN I WAS
IN MEDICAL SCHOOL AND IT SHAPED
MY ENTIRE CAREER BEYOND THAT
BECAUSE TO THE FAMILY WENT
THROUGH A LONG PERIOD OF
GRIEVING WITH THAT LOSS AND FELT
SO HELPLESS AROUND THAT TIME AND
HOW I CHOSE A CAREER AROUND
NEON
NEONATOLOGY.
THANK YOU FOR THE SPEAKERS IN
THE SESSION.
AMAZING TALKS AND WE'LL REGROUP
AT 12:30.
THANK YOU.
>>THE SECOND SESSION PROMISES
TO BE AS IMPORTANT AND AS ENGAGE
AS THE FIRST SESSION.
IN THIS WE'RE FOCUSSING ON WHAT
MAKES SOME COMMUNITIES OR GROUPS
ADD HIGH RISK FOR STILLBIRTHS.
MON
MONICA, WOULD I LIKE TO GET US
STARTED WITH THE SESSION.
>>SURE.
WELCOME BACK AGAIN, EVERYONE.
LIKE DR. JAIN SAID IT'S GOING TO
BE ABOUT COMMUNITY RISK OF
STILLBIRTH WE HAVE DR. DONNA
HOYERT WHO WILL GIVE AN OVERVIEW
ON THE CAUSE OF FETAL DEATH AND
DISPARITIES.
THANK YOU, DR. HOYERT.
>>I WAS ASKED TO TALK ABOUT
RACE AND ETHNIC DISPARITIES IN
STILLBIRTH BEFORE YOU HEAR FROM
THE OTHER SPEAKERS IN THE
SESSION.
AND MY INFORMATION IS BASED ON
THE NATIONAL VITAL STATISTICS
SYSTEM AND OVERLAPS ON WHAT
ELIZABETH GREGORY TALKED ABOUT
IN THE LAST MEETING AND MY
CONTINUING ROLE IS MORE FOCUSSED
ON CAUSE OF DEATH AND THE FETAL
DEATH DATA.
THIS IS ON DATA COLLECTED
THROUGH A DECENTRALIZED
STRUCTURE AND WHILE STATE LAW
REGULATION PREEMINENT THERE'S
LEVELS THAT TOUCH VITAL
STATISTICS.
THE INTERNATIONAL STANDARDS
EMBODIED IN THE INTERNATIONAL
CLASSIFICATION OF DISEASES HAVE
WIDE RANGING INFLUENCE ON WHAT
WE COLLECT, HOW WE COLLECT THAT
INFORMATION AND HOW WE PROCESS
IT AND HOW WE CLASSIFY CAUSE OF
DEATH.
THESE ARE ALSO THE SAME SOURCE
FOR THE STANDARDS THAT DEFINE
WHAT IS DONE FOR THE OTHER 3.4
MILLION ANNUAL DEATHS IN THE
U.S.
AND FETAL DEATH INFORMATION WAS
FIRST COLLECTED IN 1918 AND HAS
BEEN COLLECTED ANNUALLY SINCE
1921.
IF YOU DON'T ALREADY KNOW WHY WE
USE THE TERM FETAL DEATH IN THE
BIO STATISTICS SYSTEM WE USE THE
UMBRELLA TERM FETAL DEATH
FOLLOWING A LONGSTANDING W.H.O.
RECOMMENDATION.
THE POINT WAS TO TRY TO AVOID
CONFUSION ARRIVING FROM VARYING
USAGES OF A VARIETY OF TERMS
INCLUDING STILLBIRTHS,
SPONTANEOUS ABORTION AND
MISCARRIAGE AND OTHERS.
YOU'VE ALREADY SEEN THIS IN
ELIZABETH'S PRESENTATION BUT
AGAIN A PRESENTATION OF A
DEFINITION AND REPORTING
REQUIREMENT DETERMINES WHICH
FETAL DEATHS ARE INCLUDED IN THE
VITAL STATISTICS SYSTEM.
IN THE UNITED STATES, THIS IS
THE RECOMMENDED DEFINITION THAT
ENCOMPASSES AN INTRAUTERINE
DEATH WITH DEATH OCCURRING AT
ANY POINT WITHIN THE PREGNANCY
BUT THE REPORTING REQUIREMENT
ONLY REQUIRES THE SUBSET OF ALL
THESE EVENTS BE REPORTED.
SINCE IT IS A DECENTRALIZED
SYSTEM, EACH STATE HAS
RECOMMENDATION FETAL DEATHS.
THE DEFINITION IS CONSISTENT
WHILE REPORTING REQUIREMENTS ARE
MORE VARIABLE ACROSS BUT
NEVERTHELESS MOST STATES REQUIRE
REPORTING OF FETAL DEATH WITH A
GESTATION OF 20 WEEKS OR MORE.
THE NEXT SLIDE SHOWS WHEN A
PREGNANCY ENDS WITH FETAL DEATH
STATE RESOLUTIONS SPECIFIES IF
THE FETAL DEATH NEEDS TO BE
RECORDED ON A FETAL DEATH
REPORT.
IF IT DOES, WE HAVE GUIDANCE ON
WHO AND WHAT DOCUMENTATION
SHOULD BE THE BETTER SOURCE OF
INFORMATION.
FOR A VARIETY OF DETAILS AND
CHARACTERISTICS ABOUT THE
MOTHER, PREGNANCY AND DELIVERY
AND THE FETUS.
AUS -- CAUSE OF DEATH IS MUCH
MORE RECENT PUBLICATION RELEASED
AND BY PROCESSING CAUSE
INFORMATION I MEAN ALL
CONDITIONS ARE ASSIGNED A CODE
AND ASSOCIATED TITLE FROM THE
10th REVISION OF THE W.H.O.'S
INTERNATIONAL CLASSIFICATION OF
DISEASES AS MOST APPLICABLE TO
THE LITERAL TEXT.
ONE CONDITION FROM THE MANY THAT
MIGHT BE RECORDED IS DESIGNATED
THE INITIATING CONDITION AND WE
USE MODIFICATION RULES FOR
SELECTING THE INITIATING CAUSE.
AND THERE ARE ABOUT 8,000
CATEGORIES IN THE CLASSIFICATION
IT'S ORGANIZE IN MULTIPLE LEVELS
OF DETAIL WITH PERINATAL
CONDITION AND CONGENITAL
MALFORMATION CHAPTERS BEING MOST
RELEVANT FOR FETAL DEATHS.
ICD CODES CAN BE REARRANGED IN
GROUPS IN DIFFERENT WAYS BUT WE
PRIMARILY USE A STANDARD
TABULATION LIST AND FOCUS ON THE
MOST FREQUENTLY REPORTED CAUSES
FROM THAT LIST.
USING THAT GROUPING OF CAUSE,
NEARLY 90% OF FETAL DEATHS ARE
REPORTED INVITAL STATISTICS DATA
AS DUE TO ONE OF FIVE CAUSES.
THIS SLIDE SHOWS THE MOST
COMMONLY REPORTED CAUSES FOR 42
AREAS FOR 2018 TO 2020.
UNSPECIFIED CAUSE AT 31% IS MOST
COMMON FOLLOWED BY PLACENTAL
CORD AND MEMBRANE COMPLICATIONS
WITH 25%, MATERNAL COMPLICATIONS
WITH 13%, CONGENITAL
MALFORMATIONS UNRELATED TO
PREGNANCY AT 11%.
IF YOU INSERT THE VARIOUS CAUSES
BY CHARACTERISTIC THE CAUSES
REMAIN REPEATEDLY.
BIRTH WEIGHT AND GESTATIONAL
AGES ARE CHARACTERISTICS WHICH
THE CAUSES ARE SUPPLANT OTHERS
SPECIFICALLY DIABETES AND OTHER
COMPLICATIONS OF LABOR AND
DELIVERY AND SOME OF THE HIGHER
BIRTH WEIGHT AND LONGER
GESTATIONAL AGE CATEGORIES.
THERE'S INVESTIGATION TO
DETERMINE WHAT HAPPENED WITH
FETAL DEATHS BUT ITEMS
THEMSELVES HAVE COMPLETED AND
PLANNED CATEGORIES.
THIS SLIDE I'M ASSUMING PLAN IS
REALIZED AND COMBINE THE VALUES.
DOING THIS INDICATES PLACENTAL
EXAMINES ARE FAIRLY COMMON AT
NEARLY 70% WITH AUTOPSY LESS
COMMON AT AROUND 20%.
THESE THREE ORIGIN GROUPS ARE IN
OUR DATA.
AND RACE IS ONE OF A NUMBER OF
CHARACTERISTICS THAT HAVE LONG
BEEN AVAILABLE AND ASSESSED
FETAL DEATH DATA AND THE VARIOUS
OTHER LINES ON THE SLIDE
INDICATE RACE GROUPS.
AND WE HAVE A LITTLE MORE DETAIL
AND THESE ARE PERIODIC BREAKS AS
WE CHANGE.
I'M NOT BEING CAREFUL IN SHOWING
THE CHANGES IN THE LABELS OVER
TIME IN THE SLIDE BUT THE
CURRENT LABELS FOR THE LARGEST
GROUPS ARE SINGLE RACE
NON-HISPANIC WHITE AND
NON-HISPANIC BLACK AND HISPANIC
BLACK POPULATIONS.
THERE'S SUBSTANTIAL AND
PERSISTENT HIGHER FOR THE BLACK
POPULATION COMPARED TO THE WHITE
POPULATION.
THIS IS A SMALL CHARACTERISTIC
AND WHAT IT LOOKS LIKE BY
HISPANIC AND ORIGIN GROUPS.
I START WITH AN EXAMPLE OF
GEOGRAPHY WHICH IS WHERE MY
THOUGHTS WOULD FIRST TURN AT THE
MENTION OF ENVIRONMENTAL
INFLUENCES.
AND WE LOOKED AT ARKANSAS,
ALABAMA, MISSISSIPPI AND NEW
MEXICO, TEXAS, CONNECTICUT,
MASSACHUSETTS AND IOWA.
THE NUMBER OF EVENTS BECOMES AN
ISSUE IF YOU START LOOKING AT
ADDITIONAL CHARACTERISTIC AND WE
OFTEN COMBINE YEARS OF DATA TO
DO SO.
THREE YEARS IS NOT ENOUGH SO WE
SAW THE MAP FOR ANOTHER GROUP OF
THREE YEARS EARLIER TODAY.
THE PERCENTAGE IN REPORTING
UNSPECIFIED CAUSE OF DEATH
STICKS OUT THE MOST AND IT'S
SUBSTANTIALLY MORE FOR THE
STATES WITH HIGHER FETAL
MORTALITY RATES.
THE PERCENTAGE IS ABOUT 38% FOR
THE HIGH FETAL MORTALITY RATE
STATES VERSUS 24% FOR THE LOW
FETAL MORTALITY RATE STATES.
I ALREADY KNOW FETAL MORTALITY
RATES VARY AND THIS SHOWS MORE
CATEGORIES THAN SHOWN A FEW
SLIDES BACK.
IN 2020 FETAL MORTALITY RATES
WERE HIGHEST FOR NON-HISPANIC
AND PACIFIC ISLANDER AND
NON-HISPANIC BLACK WOMEN
FOLLOWED BY NON-HISPANIC
AMERICAN INDIAN OR ALASKAN
NATIVE.
LOOKING AT THE SAME CAUSES WERE
AMONG THE FIVE MOST COMMON
ACROSS RACE AND HISPANIC ORIGIN
GROUPS.
WITH RESPECT TO PERCENT
DISTRIBUTION THE PERCENT WITH
CONGENITAL MALL FORMATIONS
DIFFERED THE MOST BETWEEN GROUPS
WITH AN ACCOUNTING FOR 6.1% OF
DEATHS FOR NON-HISPANIC BLACK,
11.7% FOR HISPANIC AND 12.2% FOR
NON-HISPANIC WHITE POPULATIONS.
IF WE CALCULATED FETAL MORTALITY
PERCENT BY CAUSE RATHER THAN
DISTRIBUTION, THE LARGER
DIFFERENCES ARE BETWEEN THE
NON-HISPANIC WHITE AND
NON-HISPANIC BLACK POPULATIONS.
LIKE THE OVER ALL DIFFERENCE
BETWEEN NON-HISPANIC WHITE AND
BLACK THE RATES FOR THE
NON-HISPANIC BLACK POPULATION
WOULD BE ABOUT DOUBLE THAT FOR
THE WHITE POPULATION AND FOR
UNSPECIFIED CAUSE AND
COMBINATIONS OF PLACENTA CORD
AND MEMBRANES WITH TRIPLE FOR
MATERNAL COMPLICATIONS AND
MATERNAL CONDITIONS UNRELATED TO
PREGNANCY AND DIFFERENT WITH
SIMILAR RATES FOR CONGENITAL
MALFORMATIONS FOR THE TWO
GROUPS.
AS YOU KNOW THE HISPANIC ORE MIN
POPULATION IS COMPRISED OF MANY
SUBGROUPS.
AMONG HISPANIC ORIGIN SUBGROUPS
IN 2020 RATES RANGE FROM 4.41
FOR DOMINICAN WOMEN AND OTHER IN
KNOWN HISPANIC WOMEN.
HOWEVER, DIFFERENCES AMONG THESE
GROUPS WERE GENERALLY NOT
SIGNIFICANT.
FETAL MORTALITY RATES WERE
LOWEST FOR WOMEN AGE 25 TO 29
AND 30-34.
IF ONE LOOKS AT THIS BY RACE AND
HISPANIC ORIGIN THE NUMBER OF
EVENTS WAS TOO SMALL FOR A
SINGLE YEAR AND TO CALCULATE
RELIABLE RATES FOR FEMALES UNDER
AGE 15 FOR ALL THREE IN HISPANIC
ORIGIN GROUPS.
AGE SPECIFIC RATES FOR
NON-HISPANIC BLACK WOMEN WERE
HIGHER THAN THOSE FOR
NON-HISPANIC WHITE WOMEN FOR
THOSE AGED 15 AND OVER.
RATES FOR NON-HISPANIC BLACK
WOMEN WERE HIGHER THAN THOSE AGE
15 TO 44.
THE RATE AT AGE 45 AND OVER WERE
NOT SIGNIFICANTLY DIFFERENT.
THE RATES FOR NON-HISPANIC WHITE
CROSSED NEITHER IS CONSISTENTLY
GREATER THAN THE OTHER.
THE RATE FOR THE NON-HISPANIC
BLACK POPULATION WAS GREATER
THAN THE NON-HISPANIC BLACK AND
WHILE THE POPULATIONS AND THE
GREATER WAS GREATER FOR THE
HISPANIC WHITE THAN NON-HISPANIC
WHITE POPULATION.
THE FETAL MORTALITY DECLINED TO
A LOW AT 39 TO 41 AND 41 WEEKS
AND INCREASED AT 42 WEEKS OF
GESTATION OR MORE.
THE PATTERN WAS SIMILAR FOR THE
THREE LARGEST RACE IN HISPANIC
ORIGIN GROUPS.
THE LINES FOR THE DIFFERENT
GROUPS ARE CROSSING SOME IN THE
NON-HISPANIC BLACK POPULATION
DOES NOT CYST LY -- CONSISTENTY
HAVE HIGHER RATES ACROSS THE
GESTATIONAL AGES.
I SWITCHED TO LOG SCALE WITH THE
NEXT SLIDE.
THE FETAL MORTALITY RATE IS
HIGHER FOR FETUSES WEIGHING LESS
THAN 500 GRAMS AND INCREASED TO
A LOW FOR FETUSES WEIGHING 300
TO 3,999 GRAMS AND INCREASED
SLIGHTLY FOR FETUSES WEIGHING
4,000 GRAMS MORE AND THE PATTERN
WAS SIMILAR FOR THE THREE
LARGEST RACE IN HISPANIC ORIGIN
GROUPS BUT SEE THE LINES ARE
CROSSING AT POINTS.
HERE'S ANOTHER INSTANCES WHERE
THE RATES ARE NOT CONSISTENTLY
MUCH HIGHER.
DIFFERENCES IN RATES BETWEEN THE
NON-HISPANIC WHITE AND HISPANIC
POPULATION ARE NOT SUBSTANTIALLY
DIFFERENT.
THE 4,000 GRAMS OR MORE CATEGOY
IS ONE THAT HAS A NOTABLY
DIFFERENT REPORTED CAUSE OF
DEATH DISTRIBUTION.
AT THAT DELIVERY WEIGHT,
DIABETES IS THE MOST FREQUENTLY
MENTIONED CAUSE OF DEATH CLOSELY
FOLLOWED BY UNSPECIFIED CAUSE
BOTH AROUND 30%.
THERE'S VARIATION BY RACE AND
HISPANIC ORIGIN FOR THE WHITE
POPULATION UNSPECIFIED REMAINS
MOST COMMON AND COMBINATIONS OF
PLACENTA CORD AND MEMBRANES AT
25% AND DIABETES AT 22%.
FOR THE BLACK POPULATION, 38%
DIABETES AND 21% UNSPECIFIED AND
CORD AND MEMBRANE 12%.
FOR THE HISPANIC POPULATION, 43%
ARE ATTRIBUTED TO DIABETES, .4%
UNSPECIFIED CAUSE AND
COMPLICATIONS OF PLACENTA CORD
AND MEMBRANES, 14%.
THE FETAL MORTALITY RATE WAS
GREATER FOR THE SMOKING GROUP
AND GREATER FOR THE NON-HISPANIC
BLACK POPULATION THAN OTHER
GROUPS AND THE RATES WERE
GREATER FOR THE HISPANIC
POPULATION THAN THE NON-HISPANIC
WHITE POPULATION.
DATA FROM THE NATIONAL VITAL
STATISTICS SYSTEM FETAL DEATH
DATA SHOWED FETAL MORTALITY
RATES VARY BY MANY
CHARACTERISTICS.
OVER ALL THE FETAL MORTALITY
RATE FOR NON-HISPANIC WHITE
POPULATIONS ARE SIMILAR WHILE
THE RATES FOR THE NON-HISPANIC
BLACK POPULATIONS IS MORE THAN
DOUBLE THOSE FOR THE
NON-HISPANIC WHITE AND LOOKING
AT RATES BY OTHER VARIABLES OR
CHARACTERISTICS, DIFFERENCES ARE
OBSERVED BETWEEN THE
NON-HISPANIC BLACK AND WHITE
POPULATIONS ACROSS MANY OF THESE
OTHER CHARACTERISTICS.
SAYS TOBACCO USE AND OTHERS NOT
SHOWN TODAY.
HOWEVER THIS IS NOT ALWAYS THE
CASE.
AND RATES FOR THE NON-HISPANIC
BLACK POPULATION ARE NOT
CONSISTENTLY GREATER THAN THAT
FOR THE NON-HISPANIC WHITE
POPULATION ACROSS GESTATIONAL
AGE AND BIRTH WEIGHT CATEGORIES.
WITH FEW CAUSES OF DEATH RAISED
IN THIS PRESENTATION, THE
DIFFERENTIAL IS MORE ELEVATED
FOR MATERNAL COMPLICATIONS AND
CONDITIONS UNRELATED TO
PREGNANCY BUT ABSENT FOR COULD
BE GENTLE MALFORMATION.
AND THAT CONCLUDES MY
PRESENTATION.
THANK YOU FOR YOUR ATTENTION.
>>WONDERFUL, PRESENTATION,
DR. HOGUE FOR THE DIFFERENCES IN
THE DISPARITIES WE'RE SEEING AND
THE CAUSE OF FETAL DEATH.
THANK YOU FOR ACCEPTING.
NOW TO TRANSITION DEEPER INTO
DISPARITIES WE HAVE DR. HOGUE
PROFESSOR OF EPIDEMIOLOGY OF
MATERNAL AND STUDY AND LOOKING
AT RACIAL AND ETHNIC DISPARITIES
IN BIRTH.
>>THANK YOU, DR. LONGO.
GOOD AFTERNOON.
I WOULD LIKE TO THANK
DR. BIANCHI AND THE WORKING
GROUP FOR YOUR INVITATION TO
SPEAK TODAY.
MY ONLY DISCLOSURE IS THIS
INVITATION APPEARED IN MY E-MAIL
WHEN I WAS IN NEW ZEALAND ON
VACATION AND I ARRIVED BACK HOME
SATURDAY NIGHT SO I HAVE HAD
LITTLE TIME TO PREPARE THIS
PRESENTATION.
AND I HOPE DURING THE Q&A PERIOD
YOU ASK FOR FURTHER
CLARIFICATION OR EXPANSION FOR
ANYTHING THAT MAY NOT HAVE BEEN
CLEAR AS WE HAVE GONE THROUGH
THIS RATHER HASTY PRESENTATION
PREPARATION.
I WAS ASKED TO COMMENT ON RACIAL
DISPARITIES IN STILLBIRTH.
I'LL LIMIT MY COMMENT TO ONE
TYPE OF COMMUNITY AT HIGHER RISK
NAMELY AFRICAN AMERICAN WOMEN.
THIS IS FOR TWO REASONS.
FIRST, AFRICAN AMERICAN WOMEN AS
YOU HAVE HEARD HAVE A DECIDED
HIGHER RATE OF STILLBIRTH THAN
WHITE WOMEN AND THE STILLBIRTH
RATE FOR OTHERS REPORTED BY RACE
OR ETHNICITY IS SIMILAR OF THAT
BLACK WOMEN AND MORE IS RAIN FOR
RACIAL DISPARITY FOR AFRICAN
AMERICAN WOMEN THAN FOR OTHER
GROUPS.
IT'S IMPORTANT TO UNDERSTAND
RACE IS NOT A RISK FACTOR BUT
INDICATOR OF PERINATAL PROBLEMS
INCLUDING STILLBIRTH.
IN THE UNITED STATES,
INDIVIDUALS IN A COMMUNITY
BROADLY DEFINED BY THE TERM
AFRICAN AMERICAN ARE ABOUT TWICE
AS LIKELY THAN INDIVIDUALS IN
ANOTHER COMMUNITY DEFINED BY
WHITE, COLOR OR ANCESTRY TO
EXPERIENCE STILLBIRTH.
THE REASONS FOR THIS ARE THE
RISK FACTORS THAT AFRICAN
AMERICANS EXPERIENCE MORE
FREQUENTLY THAN WHITE COMMUNITY
MEMBERS EXPERIENCE.
THE PURPOSES OF RESEARCH AND
SURVEILLANCE ONE CAN
CHARACTERIZE RISK FACTORS FOR
EXCESS STILLBIRTH RISK AMONG
AFRICAN AMERICANS AS SOCIAL
SYSTEMIC, GENETIC, MEDICAL OR
INDIVIDUAL INTERPERSONAL.
SOCIAL SYSTEMIC RISKS INCLUDE
INSTITUTIONALIZED AND HISTORICAL
RACISM THAT PLACE MANY AFRICAN
AMERICAN WOMEN IN REDLINED
NEIGHBORHOODS WITH POOR ACCESS
TO HEALTH NUTRITION, HEALTH
SERVICES AND LIMITED ACCESS TO
WORK THAT PAYS LIVABLE WAGES.
WOMEN WHO ACHIEVE A HIGH LEVEL
OF EDUCATION AND WELL PAYING
JOBS ARE OFTEN FACED WITH
INSTITUTIONALIZED RACISM WITHIN
THEIR WORK AND NEIGHBORHOOD
SETTINGS.
FOOD DESERTS AND OTHER
ENVIRONMENTS THAT INCREASE THE
RISK OF OBESITY BEGINNING IN
CHILDHOOD.
OBESITY IS DIFFICULT TO
INTERVENE AFTER ONE BECOMES
OBESE AND IT'S AN ANYONE RISK
FACTOR FOR STILLBIRTH.
PREGNANT AFRICAN AMERICAN WOMEN
ARE ABOUT 50% MORE LIKELY THAN
WHITE WOMEN TO BE OBESE.
AMEALIOR -- AMELIORATION
EFFORTS CAN BE EVALUATED THROUGH
QUASI-EXPERIMENTAL RESEARCH.
AS AN EXAMPLE OF SUCH A SYSTEMIC
INTERVENTION THAT REDUCES RACIAL
DISPARITIES, THE NIH SPONSORED A
QUASI-EXPERIMENTAL STUDY OF
CHANGES IN ELEMENTARY STUDENT'S
HEALTH WITH THE INTRODUCTION OF
SCHOOL-BASED HEALTH CENTERS
PLACED IN PUBLIC SCHOOLS WHICH
HAVE A LARGE PERCENTAGE OF
STUDENTS WITH LIMITED FINANCIAL
RESOURCES.
THIS STUDY DEMONSTRATED INCLUDES
THE HEALTH SERVICES FOR STUDENTS
ENROLLED IN MEDICAID.
RECENT STUDIES FOUND THAT
AFRICAN AMERICAN WOMEN ALSO FACE
MEDICAL CARE SYSTEMS THAT IGNORE
THEIR VOICE AND MAKE RACIST
ASSUMPTIONS THAT LEAD TO LOWER
QUALITY HEALTH CARE AND
ULTIMATELY TO GREATER RISK OF
SEVERE MATERNAL MORBIDITY AND
POOR PREGNANCY OUTCOMES.
A RECENT ANALYSIS OF WOMEN
DELIVERING STILLBIRTH IN
CALIFORNIA FOUND 10.6% OF
AFRICAN AMERICAN MOTHERS
SUFFERED SEVERE MATERNAL
MORBIDITY COMPARED TO 5.2% OF
WHITE OR HISPANIC MOTHERS.
PROGRESS TOWARDS ACHIEVING
EQUITY CAN BE MEASURED THROUGH
SURVEILLANCE OF END RESULTS
INCLUDING REDUCED MATERNAL
OBESITY, SEVERE MORBIDITY AND
ADVERSE PREGNANCY OUTCOMES AND
PRO
PROXY.
CERTIFICATES BECAME LINKED AND
WAS ASSOCIATED TO INFANT
MORTALITY TO COMMUNITIES OF
COLOR AND THE BENEFIT OF
MOTHER'S HIGHER EDUCATIONAL
ATTAINMENT WAS LESS THAN FOR
AFRICAN AMERICAN THAN FOR WHITE
WOMEN IN LARGE PART BECAUSE WELL
EDUCATED AFRICAN AMERICAN WOMEN
WERE FAR MORE LIKELY TO DELIVER
PERI VIABLE INFANTS AT EXTREMELY
LOW GESTATIONAL AGES.
SUBSEQUENT RESEARCH HAS REVEALED
THE STRESS OF RACISM ON AFRICAN
AMERICAN WOMEN'S HEALTH AS WELL
AS LOWER QUALITY MATERNAL CARE
ARE THE LIKELY REASONS FOR THIS
ONGOING DISPARITIES IN VERY
PRETERM BIRTH AND INFANT
MORTALITY.
AND JUST TO MAKE A COMMENT ABOUT
DR. HOYERT'S WONDERFUL
PRESENTATION, IT'S TRUE THAT THE
FETAL MORTALITY RATE FOR VERY
PRETERM BIRTHS IS SIMILAR ACROSS
RACES.
WHAT MAKES THE DIFFERENCE IS
AFRICAN AMERICAN WOMEN ARE THREE
TO FOUR TIMES AS LIKELY TO
DELIVER BABIES AT THOSE VERY LOW
GESTATIONAL AGES.
SYSTEMIC PROGRESS IN MEDICAL
CARE SUCH AS REDUCTION IN
UNNECESSARY INFECTION CAN ALSO
BE TRACKED THROUGH VITAL RECORD
SURVEILLANCE.
EXCUSE ME A MINUTE.
SYSTEM PROGRESS IN MEDICAL CARE
SUCH AS REDUCTION IN UNNECESSARY
C SECTION CAN BE TRACKED BUT
HOWEVER, THIS MECHANISM IS NOT
IN PLACE FOR STILLBIRTHS.
THE DATA IS COLLECTED FROM LIVE
BIRTHS BUT NOT FOR STILLBIRTHS.
THIS CAN BE DEVELOPED THROUGH
ADEQUATE EXPANSION OF RECORDS OF
THE GESTATION IS AS COMPLETE AND
ACCURATE AS THE INFORMATION NOW
AVAILABLE FOR LIVE BIRTHS.
SOME MEASURES ARE ON THE FETAL
DEATH CERTIFICATE AND SOME ARE
REMOVED BECAUSE OF LIMITED
RESOURCES.
AS ANOTHER DIVERSION FROM
PREPARED COMMENTS IN RESPONSE TO
THE DISCUSSION ABOUT THE QUALITY
OF FETAL DEATH CERTIFICATES THE
NATIONAL CENTER FOR HEALTH
STATISTICS HAS LONG BEEN STYMIED
AND REDUCED IN RESOURCES
AVAILABLE TO STATES TO IMPROVE
THEIR VITAL RECORD SYSTEMS.
STATES AS YOU KNOW ARE
RESPONSIBLE FOR VITAL RECORDS
AND REPORT TO THE NATION ONLY ON
REQUEST.
THE NATION CAN REQUEST QUALITY
BY INCREASING THE FINANCIAL
SUPPORT TO STATES WHO ARE ALSO
STRAPPED IN QUALITY OF THEIR
VITAL RECORDS COLLECTION.
SO THIS IS A MATTER OF FUNDS AND
FUNDS FOR ONGOING SURVEILLANCE
ARE VERY IMPORTANT.
IN THE LONG RUN, I BELIEVE IT
WOULD BE A HIGHLY HOST COST
EFFECTIVE WAY IN ACHIEVING
SYSTEMIC ACTIVITY AND THE NEED
IS GROWING.
MORE DELIVERIES ARE NOW LIVE
BORN.
IN GEORGIA, DIFFERENT REPORTS GO
IN THE VITAL RECORDS SYSTEM.
THAT MEANS PERI VIABLE BABIES
THAT DIE SOON AFTER BIRTH MAY BE
MISSED ENTIRELY BECAUSE OF THE
UNDERSTANDING OF WHO SHOULD
REPORT THEM.
BY REQUIRING THE SAME
INFORMATION FOR ALL DELIVERIES
AT 20 WEEKS GESTATION AND ABOVE,
THERE'S VITAL STATUS AT DELIVERY
AND PROBLEMS SUCH AS THESE COULD
BE MINIMIZED.
AND WITH RISK FACTORS FOR STILL
BIRTH AND KNOWN TO OCCUR MORE
FREQUENTLY AMONG AFRICAN
AMERICAN WOMEN SOME ARE GENETIC,
OTHER CAUSES ARE YET TO BE FULLY
UNDERSTOOD.
BETTER UNDERSTANDING WILL
REQUIRE A BETTER UNDERSTANDING
OF THE UNDERLYING CAUSES OF THE
CAUSES OF DEATH AND FOR THAT
STUDIES ARE VERY VALUABLE AS HAS
BEEN DEMONSTRATED THROUGH THE
COLLABORATIVE RESEARCH.
WE ARE REVIEWED THE RACIAL AND
ETHNIC DISPARITIES IN STILLBIRTH
KNOWN IN 2011 AND HERE I HAVE
LISTED HIGHER RISK FOR AFRICAN
AMERICAN WOMEN FOR SYSTEMIC
LUPUS AND TWIN GESTATION AND
SPONTANEOUS PRE TERM BIRTH.
AND LEAGUES USED THE FETUSES AT
RISK APPROACH WHICH IS SLIGHTLY
DIFFERENT THAN THE ODDS RATIO'S
APPROACH PER GESTATIONAL AGE TO
ESTIMATE THE RISK OF STILLBIRTH
AT SPECIFIC GESTATIONAL AGES AND
FOUND AFRICAN AMERICAN PERI
VIABLE DELIVERIES AND PRETERM
BIRTHS WERE AT HIGHER HAZARD OF
STILLBIRTH THAN WHITES WITH
HAZARD DECLINING AS FETAL AGE
DECREASED.
IN THE PAPER HAZARD RATIO WAS
LOWEST AT 1.57 FOR FETUSES
DELIVERING AT 39 TO 40 WEEKS AND
INCREASED WITH POST TERM
DELIVERIES AT 2.2 AFTER 41
WEEKS.
6 IN THE FIRST TASK FORCE WE
NOTED STILLBIRTH IS NOT A
DISEASE BUT RATHER A CONDITION.
SIMILAR PRE TERM DELIVERY IS NOT
A DISEASE BUT A CONDITION.
PRETERM DELIVERY AND STILLBIRTH
ARE HIGHLY CORRELATED AT
GESTATIONAL AGES BELOW 24 WEEKS
WHEN FEW FETUSES ARE LIVE BORN.
IN FACT IN THE STILLBIRTH
COLLABORATIVE NETWORK STUDY
STILLBIRTHS AT 20-24 WEEKS WERE
CONSIDERED TO BE CAUSED BY
OBSTETRIC COMPLICATIONS AND NOT
PREVENTIBLE.
AS NOTED THE COMMONALITY OF
INDIVIDUAL AND INTERPERSONAL
RISK FACTORS FOR PRE TERM BIRTH
AND THE MAJORITY OF EXCESS STILL
BIRTHS AMONG AFRICAN AMERICAN
PREGNANCY A STRONG ARGUMENT FOR
CONSIDERING THE EXTENT OF THOSE
RISK FACTORS AND THOSE
AMELIORATION AND THE FACTORS
AMONG AFRICAN AMERICAN PREGNANCY
SIMILAR.
FORTUNATELY, THERE'S AN EXISTING
MECHANISM THAT CAN BE USED FOR
RESEARCH FOR THE FACTORS.
THAT IS THE PREGNANCY RISK
ASSESSMENT MONITORING SYSTEM
WHICH ALREADY PROVIDED DATA ON
RESEARCH IN BIRTHS IN AFRICAN
AMERICAN DELIVERIES.
IT'S A CDC SPONSORED STATE-BASED
SURVEILLANCE PROGRAM THAT
SAMPLES WOMEN WHO HAVE RECENTLY
GIVEN BIRTH AND APPROACHES THEM
TO ASK ABOUT THEIR PRENATAL AND
POSTPARTUM CARE EXPERIENCES AS
WELL AS TO INQUIRE ABOUT OTHER
RISK FACTORS NOT ON THE
CERTIFICATE.
TODAY THERE'S MORE THAN 700
PUBLICATIONS FROM THE ONGOING
SYSTEM INCLUDING EXAMINATIONS OF
RACIAL DISPARITIES IN PRENATAL
CARE AND RISK FACTORS.
SPECIAL TOPICS ARE INCLUDED AT
TIMES FOR ALL STATES AND ALSO
STATES HAVE THE OPPORTUNITIES TO
ASK ADDITIONAL QUESTIONS.
A FEW YEARS AGO, CDC FUNDED TO
DO A SMALL PILOT STUDY OF WOMEN
IDENTIFIED THROUGH FETAL DEATH
CERTIFICATES TO EXPLORE WHETHER
THEY'D BE WILLING TO ANSWER THE
QUESTIONNAIRE.
THE ENCOURAGING FINDINGS LED TO
A MORE EXTENSIVE STUDY IN HUE
UTAH.
THE PLUS SIGN INCLUDES FETAL
DEATHS IN THE FINDING.
IF PRAMS WAS CONTINUED THIS WAY
IT WOULD PROVIDE VALUABLE
INFORMATION SURVEILLANCE AS WELL
AS RESEARCH USING LINKED
RECORDS.
I DID A QUICK SEARCH IN PUB MED
AND FOUND SOME STUDIES IN
PRETERM BIRTH AND SEVEN
ADDITIONAL RACIAL BIAS OR
DISCRIMINATION IN PRAMS.
AS AN EXAMPLE OF WHAT CAN BE
LEARNED, CONSIDER THE STUDY BY
KIM AND COLLEAGUES PUBLISHED IN
2020 IN THE ANNALS OF BEHAVIOR
AND MEDICINE THEY FOUND CHRONIC
STRESS AND RACISM MAY DEVELOP
ACCELERATED PRE TERM BIRTH RISK
AMONG MINORITY WOMEN AND
RECOMMENDED FUTURE RESEARCH THAT
WOULD INCLUDE MORE OBJECTIVE AND
ACCURATE CHRONIC STRESS MEASURES
TO ASCERTAIN THE COMPLEX
RELATIONSHIPS AMONG CHRONIC
STRESS AND RACIAL DISCRIMINATION
AND THE AGE WITH DIFFERENTIALS
IN PRE TERM BIRTH.
I WOULD ASKED MORE NUANCED
MEASURES OF RACIAL
DISCRIMINATION SUCH AS IF I CAN
TOP THIS, THE JACKSON MEASURE OF
GENDERED RACISM WOULD BE USEFUL
AND THAT'S THE DOUBLE PLUS.
PLEASE ALSO NOTE ON THIS SLIDE
THERE IS KNOWN RISK FACTORSES
ARE INCLUDED AND THESE INCLUDE
OBJECTIVE MEASURES SUCH AS THE
SOURCE OF FUNDING FOR MEDICAL
CARE, MEDICARE OR PRIVATE AND
ANALYSES HAVE SHOWN
LOW-RESOURCED WOMEN DO BETTER IN
PREGNANCY OUTCOMES IF THEY'RE IN
MEDICAID RATHER THAN PRIVATE
INSURANCE AND THAT MAY BE
RELATED TO THE KIND OF CARE T
RECEIVED IN PRIVATE CARE AND
RECALL ADVICE ABOUT CONTROLLING
WEIGHT, MARIJUANA USE AND
SMOKING.
I ADDED FETAL MONITORING WHICH
IS OF INTEREST TO THOSE WHO
EXPERIENCED STILLBIRTH AND
THERE'S A QUESTION WHETHER HER
PRENEATAL CARE PROVIDER ADVISED
HER TO COUNT KICK COUNTS.
HYPERTENSIVE DISORDERS OF
PREGNANCY ARE NOTED ON THE
CERTIFICATE AND USING THIS
INFORMATION AND STRESSFUL LIFE
EVENTS ERS FOUND PRETERM BIRTH
WAS EXPERIENCED WITH JOB LOSS,
PAY REDUCTION AND DIFFICULTY
PAYING BILLS AND STRESS.
AND IT INCLUDED QUESTIONS ABOUT
HEALTH CONDITIONS INCLUDING
GESTATIONAL DIABETES.
THIS INFORMATION IS ALSO
COLLECTED ON THE BIRTH
CERTIFICATE.
INVESTIGATIONS OF THE TWO
SOURCES HAVE BEEN INCLUDED AT
THE MOST ACCURATE VARIABLE AND
LOOK AT GESTATIONAL DIABETES AND
AFTER LEAF ONE OF THE TWO
SOURCES.
USING THE MEASURE THEY USED DATA
TO INVESTIGATE THE ASSOCIATION
OF GESTATIONAL DIABETES WITH A
REPORT OF RACIAL DISCRIMINATION
AMONG WOMEN IN NEW YORK CITY.
THEY REPORTED THAT RACIAL
DISCRIMINATION WAS ASSOCIATED
WITH A 24% INCREASE IN
GESTATIONAL DIABETES AFTER
ADJUSTING FOR ALL OTHER
COVARIANTS.
WHILE CLINICAL METHODS TO AVOID
EXTREME CLINICAL DELIVERY HAVE
BEEN FOUND AND MOUNTING EVIDENCE
OF RACIALLY DISCRIMINATE
PRACTICES MAY ARE REDUCE
BARRIERS FOR WOMEN AND AT THE
SAME TIME RESEARCH IS NEEDED
INTO EFFECTIVE METHODS TO
SUPPORT THE EMOTIONAL HEALTH OF
THESE WOMEN WHO ARE AT INCREASED
RISK OF DEPRESSION ASSOCIATED
WIN LIFE EVENTS AND ENGENDERED
RACISM.
NIH IS CURRENTLY SPONSORING
RESEARCH ON MINDFULNESS METHODS
AND LOOKING AT COGNITIVE
BEHAVIORAL THERAPY FOR
DEPRESSION PREVENTION AMONG HIGH
HISPANIC PREGNANT WOMEN IN UTAH.
I'M NOT AWARE OF ANY SUCH
CURRENT PROJECT FOCUS ON AFRICAN
AMERICAN WOMEN.
AT THE FIRST TASK FORCE MEETING
THERE RESEARCH MENTIONED IN
AUSTRALIA AND THE UNITED
KINGDOM.
AND CONDUCT CLINICAL HEALTH
SERVICES RESEARCH MAY BE AN
OPTION TO CONSIDER.
IF SUCH A STURDY IS UNDERTAKEN T
CAN BE TAKEN WITH A SAMPLE OF
THOSE EXPERIENCING DEATH AND
ASKING ABOUT THOSE AND WOMEN
WITH LIVE BIRTH WOULD ALSO BE
ASKED AND THE RISK REDUCTION
THEREFORE COULD BE ESTIMATED.
THE OUTCOME MEASURE COULD BE
EMOTIONAL STATUS AT THE TIME OF
THE POSTPARTUM INTERVIEW.
THIS TYPE OF STUDY IS ANALOGOUS
TO ONE CONDUCTED TO EVALUATE
BREAST FEEDING PRACTICES.
BREAST FEEDING WAS HIGHER FOR
THE WOMEN WHO HAD DELIVERED IN
BABY-FRIENDLY HOSPITALS BUT MANY
COMPONENTS OF THE BUNDLE WERE
MISSING.
THEY RECOMMENDED THE HOSPITALS
BE MONITORED AS GREATER
COMPLIANCE WITH A LARGER IMPACT
ON BREAST FEEDING RATES AND
POTENTIALLY REDUCE SOCIO
ECONOMIC DISPARITIES IN BREAST
FEEDING.
WITH TO TREATMENT AND MOTHERS,
THERE'S BEEN A GROUP OF FORMER
STILLBIRTH COLLABORATIVE
INVESTIGATORS IN ANALYZING SWIM
FROM THE STUDY WHO AGREED TO BE
FOLLOWED AND LATER INTERVIEWED
BY SCREENING STAFF.
WE'VE PREVIOUSLY REPORTED ON THE
SYMPTOMS THAT WERE PRESENT AT
THE TIME OF FOLLOW-UP WHICH WAS
FROM SIX MONTHS TO 36 MONTHS
AFTER THEIR LOSS.
MORE RECENTLY, WE EXPLORED THE
DISTRIBUTION OF SELF-IDENTIFIED
STRESS IN THE COHORT OF WOMEN
WHO EXPERIENCED A PERINATAL LOSS
COMPARED WITH THE COHORT OF
WOMEN WITH A SURVIVING LIVE
BIRTH.
ABOUT TWO-THIRDS OF WOMEN WHO
EXPERIENCED A STILLBIRTH
INDICATE THE LOSS WAS THEIR MOST
STRESSFUL LIFE EVENT.
RECORDING MALTREATMENT WAS
ASSOCIATED WITH LOWER RISK AS
IDENTIFYING THE MOST STRESSFUL
LIFE EVENT AFTER ADJUSTING FOR
COVARIATES AND THIS IS IN EFFORT
TO HELP WOMEN COPE WITH THE
STRESS.
OUR CURRENT WORK IS FOCUSSED ON
COPING STRATEGIES FOR WOMEN
EXPERIENCING STILLBIRTH OR
PERINATAL LOSS.
1 IN 6 WOMEN RECEIVED KNOW
SUPPORT AND AMONG THOSE WHO WERE
SUPPORTED, WE FOUND A DIVERSITY
OF COPING MECHANISMS WITH A
BROAD DIVERSITY OF EXPERIENCE
POTENTIALLY BASED ON THE
RESOURCES AVAILABLE TO THEM AS
WELL AS CULTURAL EXPERIENCES AND
AS APPROACHES DEVELOP, TAKING
THIS DIVERSITY INTO ACCOUNT WILL
BE HELPFUL PARTICULARLY FOR
AFRICAN AMERICAN WOMEN WHO ALONG
WITH HISPANIC RESPONDENTS WERE
MORE LIKELY TO RECOMMEND PRAYER
OR OTHER SPIRITUAL COPING
METHODS.
STILLBIRTH RISK IS ABOUT TWICE
THE RISK OF STILLBIRTH IN THE
FIRST PREGNANCY.
AMONG AFRICAN AMERICAN WOMEN,
STILLBIRTH RECURRENCE IS MORE
LIKELY THAN AMONG WHILE THE
WOMEN.
IN THE SCREEN STUDY, WE FOUND
ABOUT ONE-FIFTH OF THE
ASSOCIATION OF THIS REOCCURRENCE
RISK MAY BE ATTRIBUTABLE TO A
SHORT INTERPREGNANCY INTERVAL OF
SIX MONTHS OR LESS BETWEEN THE
LOSS AND THE CONCEPTION OF THE
NEXT PREGNANCY.
THE EVIDENCE FOR INCREASED RISK
OF ADVERSE PREGNANCY OUTCOMES
WITH A SHORT INTERVAL IS
EXTENS
EXTENSIVE.
DESPITE THIS IN A NATIONAL
SURVEY OF OBSTETRICIANS,
TWO-THIRDS ENDORSED A WAITING
TIME IN THE HIGH-RISK PERIOD OF
LESS THAN SIX MONTHS FOR PARENTS
WHO HAD EXPERIENCED A
STILLBIRTH.
MORE RESEARCH IS NEEDED FOR
EFFECTIVE CLINICAL EDUCATION.
WITH RESPECT TO THE FINAL ISSUE
ON THE SLIDE, I MENTIONED
ONGOING RESEARCH INTO
MINDFULNESS-BASED THERAPIES.
THIS COULD BE ONE APPROACH TO
RESEARCH FOR WOMEN WHO
EXPERIENCED STILLBIRTH.
THIS IS THEN OF MY FORMAL AL
REMARKS AND LOOK FORWARD TO THE
DISCUSSION AT THEN OF THIS
SESSION.
>>THANK YOU, DR. HOGUE FOR THE
PRESENTATION AND ANSWERING
RESEARCH QUESTIONS BASED ON OUR
FIRST MEETING.
I APPRECIATE THAT.
NOW WE'LL GO TO DR. MICHELLE
DEBBINK ASSIST PROFESSOR OF
GYNECOLOGY AND MATERNAL FETAL
MEDICINE AT THE UNIVERSITY OF
UTAH.
SHE'S GOING TO TALK ABOUT
EPIDEMIOLOGY AND DATA TO
UNDERSTAND RACIAL AND ETHNIC
INEQUALITIES IN STILLBIRTH.
THANK YOU.
>>THANK YOU FOR THE
INTRODUCTION.
THANK YOU ALL FOR HAVING ME
TODAY.
I'M REALLY HONORED AND
PRIVILEGED TO BE ABLE TO SHARE
SOME OF DATA WITH YOU ALL.
I HOPE THAT THEY PROVIDE SOME
ADDITIONAL RICHNESS TO THE
CONVERSATION TO COME.
AS DR. LONGO SAID I'LL BE
SPEAKING ABOUT A MIXED METHODS
APPROACH, EPIDEMIOLOGIC AND
QUANTITATIVE DATA IN LOOKING AT
MARGINALIZED COMMUNITIES IN
UTAH.
I HAVE NO CONFLICTS OF INTEREST
TO DISCLOSE WITH THE
PRESENTATION BUT I CURRENTLY
RECEIVE SALARY SUPPORT FROM THE
MARCH OF DIMES AS PART OF THE
REPRODUCTION DEVELOPMENTALIST
PROGRAM AND PART OF THE U-CARES
GRANT.
THE OBJECTIVES KNOWING THE
AUDIENCE IS BROAD TO TALK A
LITTLE BIT ABOUT STRUCTURAL
MODELS OF HEALTH INEQUITY TO
IDENTIFY INEQUITY IN STILLBIRTH
AND PREGNANCY LOSS AND TO
CONNECT WITH STORIES OF MOTHERS
AND ATTEMPT TO INTEGRATE THE
EPIDEMIOLOGIC AND QUALITATIVE
DATA TO BEGIN TO UNDERSTAND THE
SCOPE OF ADDRESSING STILLBIRTH
AND PREGNANCY LOSS IN UTAH.
SOME MAY BE FAMILIAR WITH THE
PUBLIC HEALTH PARABLE AND THE
IDEA OF THE PUBLIC HEALTH
PARABLE IS TAKING CARE OF PEOPLE
AND UNDERSTANDING RISK FOR
ADVERSE HEALTH OUTCOMES OCCURS
ALONG A SPECTRUM OF A RIVER WITH
A WATER FALL AT THE END
METAPHORICALLY.
ON ONE END OF THIS RIVER WHERE
THE WHITE ARROW IS YOU HAVE
INDIVIDUALS WHO ARE ON THE FRONT
LINES TAKING CARE OF PATIENTS
WHO ARE IMPACTED BY WE LOOK AT
INDIVIDUAL WHO'S ARE STANDING AT
EDGE OF THE WATER FALL AND
TRYING TO PUT TOGETHER KAYAKS
AND LIFE VESTS AND WAYS TO
HELPFUL PEOPLE OUT OF THE RIVER
BEFORE THEY GO OVER THE WATER
FALL AND EXPERIENCE THE ADVERSE
HEALTH OUTCOME WE'RE TRYING TO
PREV
PREVENT.
THINKING HOW DO WE AND WORK WITH
MOTHERS WHO MAY BE AT RISK OF
PREGNANCY LOSS AND TRYING TO
PREVENT THEM FROM GOING OVER THE
WATER FALL AND LOOKING AT
INDIVIDUALS AND SURVEIL PEOPLE
WE FEEL ARE AT HIGH RISK FOR
GOING OVER THE WATER FALL.
AND WE KNOW PEOPLE ENDS UP AT
THE WATER FULL AT
DISPROPORTIONATE RATES AND
PREGNANT PEOPLE FROM
HISTORICALLY AND STRUCTURALLY
MARGINALIZED ETHNIC BACKGROUNDS
END UP AT THE PRECIPICE OF
ADVERSE OUTCOMES WITH AN
INCREASED FREQUENCY COMPARED TO
FOLKS FROM MORE PRIVILEGED
BACKGROUNDS.
THE QUESTIONS WE MAY ASK
OURSELVES UP STREAM OR UP RIVER
IS HOW ARE PEOPLE ENDING UP IN
THE RIVER AND AT THE PRECIPICE
OF THE WATER FALL?
IN OTHER WORDS, WHAT PUTS
PEOPLE AT RISK OF RISK.
THAT'S WHEN WE START TO ASK
BIGGER STRUCTURAL QUESTIONS.
THINKING OF MODELS OF STRUCTURAL
CAUSE OF HEALTH INEQUITY THIS
TAKES INTO ACCOUNT THE LIFE
COURSE OF PREGNANT AND
POSTPARTUM PEOPLE AND DEVELOPED
TO DISCUSS MATERNAL MORBIDITY
AND MORTALITY AND APPLICABLE TO
ADVERSE PREGNANCY OUTCOMES.
THE MODEL WORKS IN THIS WAY THE
SMALL BLUE DOT IN THE CENTER IS
A SINGLE PERSON CAPABLE OF
PREGNANCY AND GOING THROUGH
THEIR LIFE WHICH IS THE LIGHT
GREEN ORBIT THERE AND GOING
THROUGH THEIR LIFE THE
PREREPRODUCTIVE LIFE CYCLE AND
THROUGH THE POSTPARTUM PERIOD
AND YOU'LL NOTICE AS YOU COME
AROUND THE ORBIT OF THIS
PERSON'S LIFE WE HAVE THIS PINK
BOX HERE AND THE PINK BOX
CONTAINS HEALTH CONDITIONS,
THINGS WE THINK ABOUT WHEN
SOMEONE WALKS THROUGH THE DOORS
OF A CLINIC AND HOSPITAL AND HAS
WHAT WE ASCERTAIN TO BE HIGHER
RISK FOR PREGNANCY LOSS OR A
STILLBIRTH AND FOR THE VAST
MAJORITY OF THE TIME FOLKS IN
CLINICAL SPACES FOCUS ON WHAT'S
IN THAT PINK BOX AND HOW DO WE
TRY TO REDUCE THE LIKELIHOOD
SOMEONE FALLS OVER THE WATER
FALL AND EXPERIENCES A
STILLBIRTH OR PREGNANCY LOSS.
I ARGUE IF WE TAKE THE UPSTREAM
ATTENTION YOU'LL SEE NOT ONLY IS
IT SHOWING THE SINGLE DOT OF AN
INDIVIDUAL IN THE ORBIT OF THEIR
LIFE BUT THE CONCENTRIC CIRCLES
OF INFLUENCE ON THEIR LIFE.
AND IT GOES TO THE FACTORS THAT
CAN CREATE THE RISK OF RISK.
THE WAYS PEOPLE GET THROWN INTO
THE RIVER IN THE FIRST PLACE.
YOU'LL SEE THE RINGS OF
INFLUENCE MAY GO FROM HEALTH
STATUS, FAMILY AND INTERPERSONAL
RELATIONSHIPS, PERSONAL
CHARACTERISTICS AND BELIEVES ALL
THE WAY TO OUT TO PREEXISTING
SOCIO ECONOMIC STATUS, ACCESS TO
CERTAIN HEALTH SYSTEMS AND QUAT
OF CARE AND LAWS AND POLICIES.
AND I WOULD ARGUE THERE'S ONE
LEVEL ABOVE THESE IN THE PURPLE
BOX AND THEY ARE THE STRUCTURAL
SYSTEMS THAT DIFFERENTIALLY
DISTRIBUTE ACCESS TO THE THINGS
IN THE PURPLE BOX AND THOSE ARE
THINGS LIKE STRUCTURAL RACISM,
STRUCTURAL REPRESSION AND
STRUCTURAL DISTRIBUTION OF
ACCESS BY SOCIO ECONOMIC STATUS.
SO EVEN ACCESS TO THE LARGER
FACTORS IN THE PURPLE BOX ARE
SHAPED BY STRUCTURAL FACTORS
SUCH AS STRUCTURAL RACISM AND
INSTITUTIONAL RACISM.
WHEN WE THINK OF INEQUITIES IN
STILLBIRTH IN PARTICULAR
DR. HOGUE AND SILVER PUBLISHED
THIS FRAMEWORK IN 2011.
I WANT TO FOCUS ON THE LEST SIDE
OF THE FIGURE BECAUSE THAT'S THE
UPSTREAM STRUCTURAL FACTOR.
THIS IS THE LEVEL OF THE PURPLE
BOX AND ABOVE THAT I WAS TALKING
ABOUT ON THE PREVIOUS SLIDE
WHICH IS INDIVIDUALS WHO OTHERS
PERCEIVE TO HAVE AN ETHNIC
IDENTIFY MAY EXPERIENCE
INTERPERSONAL RACISM AND
INSTITUTIONALIZED RACISM AND THE
INTERPERSONAL EXPERIENCES CAN
DIFFERENTLY DISTRIBUTE
OPPORTUNITIES AND FOR WEALTH
ACCUMULATION AND THAT PLAYS INTO
THE RISK FOR STILLBIRTH DOWN
STREAM.
TO BETTER UNDERSTAND WHAT'S
HAPPENING IN A CONCRETE WAY,
WE'RE ARE GOING TO DIVE IN THE
EPIDEMIOLOGIC DATA.
THE DATA COMES FROM UTAH'S VITAL
RECORDS DATA FROM 2013 TO 2019
USING FETAL DEATH AND BIRTH
CERTIFICATES ONWARD AND IT
PROVIDES MORE RELIABLE RACE AND
ETHNICITY DATA AND PRIOR TO 2013
THE DATA'S SOMEWHAT UNLIABLE AND
WE MODELLED OUR GROUPS ON NIH
CATEGORIES.
I THINK THERE'S IMPORTANT
CAVEATS WITH NIH CATEGORIES IN
TERMS OF MULTI-RACIAL
INDIVIDUALS AND AMERICAN INDIAN
AND ALASKAN NATIVE INDIVIDUALS
PARTICULARLY IN THE SOUTHWEST
AND INTERMOUNTAIN WEST.
FOR THOSE WHO IDENTIFY AS
MULTIRACIAL THERE'S A SEPARATE
BUCKET AND THE EXPERIENCE IN
TERMS OF THE WAYS PEOPLE PRESENT
IN THE WORLD AND THEIR CULTURAL
BACKGROUNDS AND THEIR EXPERIENCE
OF STRUCTURAL AND INTERPERSONAL
RACISM MAY BE VERY DIFFERENT
FROM OTHERS WITHIN THAT SAME
MULTI-RACIAL CATEGORY.
IF YOU HAVE SOMEONE WHO FOR
INSTANCE IDENTIFIES AS BIRACIAL
AND BLACK AND WHITE BACKGROUND
OR PACIFIC ISLANDER AND ALSO
WHITE THEIR EXPERIENCE WITHIN
THAT CATEGORY MAY NOT BE THE
SAME AS SOMEONE WHO IDENTIFIES
AS WHITE AND JAPANESE OR OTHER
WAYS AND THAT CATEGORY IS
HETEROGENEOUS AND SOME WHO HAVE
EXPERIENCE WHO MIRROR AN
EXPERIENCE THAT'S MULTI-RACIAL
BUT IMPOSSIBLE TO TEASE OUT WITH
THIS DATA AND THE MOST OCCURRING
IDENTITY IS HISPANIC IDENTITY
AND BECAUSE OF THE CATEGORIES,
THAT LATINO, LATINA IS PRIVILEGE
OVER ALASKAN NATIVE IDENTITY SO
THERE'S SOME CROSSOVER THERE
THAT MAY BE LOST.
THE DATA I'LL SHOW ARE BASIC
DESCRIPTIVE ANALYSIS AND
LOGISTIC REGRESSIONS.
WHAT YOU SEE IS STILLBIRTH RATES
PER 1,000 BIRTHS FROM 2013 TO
2019 IN UTAH.
THE GREEN AND YELLOW LINES ARE
LINES FOR WHITE INDIVIDUALS AND
THE DARKER GREEN LINE AROUND SIX
STILLBIRTHS PER 1,000 AND THEN
YOU CAN SEE HISPANIC AND LATINA
AND THE LIGHTER GREEN AND GOLD
LINES LARGELY TRACK TOGETHER.
THE DARK PURPLE LINE AT THE TOP
WHICH IS ABOUT 50% SOMEWHERE
BETWEEN 50% HIGHER AND TWO TIMES
HIGHER THAN THE STILLBIRTH RATE
FOR OTHER GROUPS IN UTAH IS THE
RATE EXPERIENCED BY NATIVE
HAWAIIAN AND PACIFIC ISLANDER
AND THE DARK GREEN LINE IS THE
INDIVIDUALS IDENTIFIED AS BLACK
IN UTAH AND THAT'S ABOUT 50%
GREATER AND OCCASIONALLY TWO
TIMES AS HIGH AS THE RATES
EXPERIENCED BY WHITE INDIVIDUALS
OR THE TOTAL STILLBIRTH RATE IN
UTAH.
FINALLY, I WANTED TO DRAW
ATTENTION TO THE BRIGHT BLUE
LINE WHICH IS THE STILLBIRTH
RATE FOR AMERICAN INDIAN ALASKAN
NATIVE INDIVIDUALS AND THERE ARE
TWO THINGS TO DRAW ATTENTION TO.
ONE IS THE RATE FLUCTUATES
BROADLY ACROSS TIME AND PART IS
DUE TO NOISE IN THE DATA.
THE NUMBER OF INDIVIDUALS GIVING
BIRTH WHO IDENTIFY AMERICAN
INDIAN AND ALASKAN NATIVE AND
THEY CAN BE ALTERED BY ONE OR
TWO ADDITIONAL STILLBIRTHS IN
ANY GIVEN YEAR AND ALSO BECAUSE
OF VARIOUS DATA DIFFICULTIES
BETWEEN COLLABORATIONS BETWEEN
THE STATE OF UTAH AND SOVEREIGN
NATIONS WITHIN UTAH THERE ARE
DIFFICULTIES WITH MAKING SURE
THE DATA ASCERTAINMENT IS
COMPLETE.
WHAT WE HAVE HERE IS TRANSLATING
THESE LINES TO SOME NUMBERS AND
THE DATA INCLUDE 355,310 LIVE
AND STILLBIRTHS INCLUDED AND
AMONG NATIVE HAWAIIAN AND
PACIFIC ISLANDER THERE WAS AN
11.6 PER 1,000 STILLBIRTHS AND
AMONG BLACK AND AFRICAN AMERICAN
THERE WAS A TOTAL OF 39 AND FOR
LATINAS 5.39 PER 1,000 AND THE
AVERAGE WAS 5.2 FOR ALASKAN
NATIVE AND ONLY 16 STILLBIRTHS
OVER THE COURSE OF THAT TIME
PERIOD THAT CONTRIBUTES TO THAT
FLUCTUATION OF DATA OVER TIME.
THESE NUMBERS TRANSLATE TO ODDS
RATIOS FOR PACIFIC ISLANDER
INDIVIDUALS, 1.7 TIMES THE ODDS
FOR AFRICAN AMERICAN INDIVIDUALS
AND SIMILAR ODDS FOR HISPANIC
AND LATINA OR AMERICAN INDIAN OR
ALASKAN NATIVE INDIVIDUALS
WITHIN UTAH DURING THIS TIME
FRAME.
WHEN WE'RE THINKING OF DRAWING
ATTENTION TO THE EXPERIENCES OF
NATIVE HAWAIIAN AND PACIFIC
ISLANDER INDIVIDUALS YOU MAY SAY
WHY SIT IMPORTANT TO DRAW
ATTENTION AND THIS SAY
POPULATION RELATIVELY UNDER
STUDIED BUT IMPORTANTLY IS
GROWING RAPIDLY WITHIN THE
UNITED STATES.
UTAH HAS THE HIGHEST PER CAPITA
POPULATION OF PACIFIC ISLANDER
INDIVIDUALS OUTSIDE OF HAWAI'I
AS A PERCENTAGE AND IN TERMS OF
THE PROPORTION OF THE
POPULATION, UTAH IS THE HIGHEST
IN THE CONTIGUOUS UNITED STATES
AND GROWING RAPIDLY.
BETWEEN THE KNOWLEDGE THIS
POPULATION IS GROWING WITHIN THE
CONTINENTAL UNITED STATES AND
ALSO THEY ARE EXPERIENCING
HAWAI'I -- HIGH BURDEN AND
PREGNANCY LOSS IMPORTANT
OUTCOMES IS ANOTHER REASON TO
UNDERSTAND THE RISK FACTORS THAT
PLAY INTO THEIR RISK FOR ADVERSE
OUTCOMES.
AND WHAT I WANT TO SAY ABOUT
THAT IS SOMETHING I WAS JUST
ALLUDING TO WHICH IS NATIVE
HAWAIIAN PACIFIC ISLANDER PEOPLE
IN UTAH EXPERIENCE NOT ONLY A
HIGHER RATE OF PREGNANCY LOSS
BUT THE HIGHEST RATES OF
MATERNAL MORBIDITY AND SUDDEN
INFANT DEATH COMPARED TO OTHER
ETHNICITY GROUPS IN UTAH AND I
THINK IT ILLUSTRATES SOMETHING
I'VE TAKEN TO CALLING STRUCTURAL
MIRROR SYNDROME.
FOR THOSE FAMILIAR WITH FETAL
MIRROR SYNDROME A FETUS UNWELL
IN UTERO THE MOTHER MAY MIRROR
THAT SICKNESS AND BECOME ILL
HERSELF.
I THINK THE PARALLEL I'D LIKE TO
DRAW IS THERE ARE STRUCTURAL
FACTORS INCREASING THE RATES OF
FOLKS WHO IDENTIFY AS NATIVE
HAWAIIAN AND PACIFIC ISLANDER
BEING AT RISK OF GOING OVER THE
RISK WATER FALL AND WHETHER IT'S
PREGNANCY LOSS, STILLBIRTH OR
NEONATAL LOSS AND MATERNAL
MORBIDITY AND THE STRUCTURAL
FACTORS LEADING TO THAT RISK ARE
OVER ALL SIMILAR AND WARRANT OUR
ATTENTION UPSTREAM.
SO HOW DO WE GET AT THE
STRUCTURAL RISKS AND
UNDERSTANDING WHAT THOSE ARE?
ONE WAY THAT WE CAN GET AT
UNDERSTANDING STRUCTURAL RISK IS
ACTUALLY TO LISTEN TO THE
COMMUNITIES WHO ARE MOST
AFFECTED.
SO WE HAVE TAKEN A QUALITATIVE
APPROACH TO STRUCTURAL
UNDERSTANDING USING IN DEPTH
NARRATIVE DATA TO BUILD THE
MODEL OF THE HOW AND WHY OF THE
EPIDEMIOLOGIC DATA WE HAVE AND
THE RATES WE SHOW AND THE LINE
GRAPH AND THE MAPS AND ALL THOSE
THINGS, THEY ARE THE WHAT BUT
THEY ARE CAN'T TELL US THE HOW
OR WHY TO ANY GREAT DEGREE AND
SO WE USE A GROUNDED THEORY
APPROACH WHICH ALLOWS US TO
BUILD EVIDENCE FOR THEORIES THAT
EXPLAIN THE PHENOMENON AND CAN
BUILD THE FOUNDATION FOR
HYPOTHESES AND INTERVENTIONS.
WE ARE CAREFUL TO TAKE AN
APPROACH THAT CENTERS
MARGINALIZED COMMUNITY VOICES
AND BUILD OUR QUALITATIVE
APPROACHES IN COLLABORATION AND
PARTNERSHIP WITH COMMUNITY OHS
AND PEOPLE WITH LIVED
EXPERIENCE.
AND THIS REALLY ALLOWS US TO
CREATE A RICH WELL OF POSSIBLE
AVENUES FOR UNDERSTANDING
EPIDEMEPIDEM
Y
EPIDEM
EPIDEMYOLOGIC DATA AND WHAT
CONTRIBUTES TO RISK.
WE'RE IN THE PROJECT CALLED
HEARING THE VOICES OF UTAH
MOTHERS.
FOCUS GROUPS DIVIDED INTO TWO
STUDIES.
AND THE ELIGIBILITY CRITERIA ARE
FOR INDIVIDUALS WHO IDENTIFY AS
NATIVE HAWAIIAN OR PACIFIC AND
GIVEN BIRTH IN UTAH IN THE LAST
FIVE YEARS AND THE SECOND ARE
FOR THOSE WHO IDENTIFY AS NATIVE
AMERICAN OR ALASKAN NATIVE AND
INDIGENOUS AND GIVEN BIRTH AND
WE HAVE LIMITED IT TO ENGLISH
SPEAKING INDIVIDUALS ON THE
ADVICE OF OUR PARTNERS GIVEN THE
AGE RANGE THAT ENGLISH SPEAKING
WOULD NOT BE -- LEAVE THE
POSSIBILITY TO MISTRANSLATE AND
IT'S DEVELOPED WITH LOCAL
COMMUNITY GROUPS AND LOOKING AT
COMMUNITY RESILIENCE FACTS AND
PHYSICAL ENVIRONMENTAL FACTOR
REDUCE OR CREATE BARRIERS TO
SUPPORT DURING PREGNANCY AND
ASKING ABOUT INTERACTION WITH
THE HEALTH CARE PROVIDERS TO
UNDERSTAND THE RELATIONSHIP OF
THEIR STRUCTURAL EXPERIENCES TO
THEIR HEALTH CARE SYSTEM OR
OTHER EXPERIENCES WITH
PROVIDERS.
THIS IS A SCREEN SHOT FROM A
VIRTUAL FOCUS GROUP.
WE CONDUCTED THE FOCUS GROUPS
WITH NATIVE HAWAIIAN AND PACIFIC
ISLANDER MOTHERS DURING COVID.
42 INDIVIDUALS WERE SCREEN AND A
PERCENTAGE AGREED TO PARTICIPATE
AND FIVE FOCUS GROUPS WERE HELD
BETWEEN JUNE AND AUGUST WITH AN
AVERAGE NUMBER OF PARTICIPANTS 6
AND UNDER TWO HOURS.
AMONG THE GROUNDS COMMUNITY THE
FOCUS GROUPS ARE ONGOING AND HAD
SCREENING AND 12 PARTICIPATED IN
THREE GROUPS WITH A FEW OTHER
URBAN NATIVE COMMUNITY PARTNERS.
SO AMONG THE THEMES WE HEARD
FROM OUR PARTICIPANTS, I'M JUST
GOING TO FOCUS ON A FEW THAT I
THINK ARE PARTICULARLY RELEVANT
TO THE EXPERIENCE OF STILLBIRTH
AND PREGNANCY LOSS AMONG NATIVE
HAWAIIAN, PACIFIC ISLANDER
INDIVIDUALS AND THE THEME AMONG
THOSE WHO PARTICIPATED IN THE
GROUP, NATIVE HAWAIIAN AND
PACIFIC ISLANDER REPORTED
FEELINGS OF DISCRIMINATION
BECAUSE OF THEIR GROUND SKIN OR
BIGGER BODIES AND OTHERS
REPORTED MEDICAID OR INSURANCE
OR STATUS RESULTED
DISCRIMINATION AND REPORTED
MEDICAL PROFESSIONALS CAME
ACROSS WITH ACTS OF IMPLICIT
BIAS OR DISCRIMINATION.
WITH SPECIFIC RELATIONSHIP TO
INDIVIDUALS WHO EXPERIENCE
PREGNANCY LOSS OR STILLBIRTH
WITHIN OUR GROUP OF PARTICIPANTS
IT'S IMPORTANT TO HEAR THEIR
WORDS AND SO I'LL READ A COUPLE
OF THESE.
ONE PARTICIPANT SAID I DON'T
REALLY SHARE THIS A LOT BUT I
WAS PREGNANT WITH MY SECOND
CHILD AND WE WERE ON THE FREEWAY
AND I TOLD MY HUSBAND I HAVE TO
GO TO THE HOSPITAL BECAUSE I
COULD FEEL PAIN WE WENT TO THE
E.R. FOR 9 HOURS WITHOUT SEEING
A DOCTOR AND I SAID I HADN'T
SEEN A DOCTOR AND I SAID PLEASE,
I'M PREGNANT AND SOMETHING'S
WRONG AND I SAT IN THE E.R. AND
I LOST MY BABY IT'S IMPORTANT
YOU LISTEN TO US AND OUR BODIES
AND TAKE US SERIOUSLY.
THIS IS FROM ANOTHER PARTICIPANT
WHO SAID WE WERE MOVING AND A
FELL DOWN THE STAIRS AND IT WAS
A SCARY THING BUT THE SAME NIGHT
I WAS EXPERIENCING BAD BACK PAIN
AND SOMETHING DIDN'T FEEL RIGHT
AT ALL.
I ENDED UP GOING TO THE E.R.
WHEN I CAME IN IT WAS A
PREDOMINANTLY WHITE STAFF AND
FELT THEY WERE BEING PLAYFUL AND
BRUSHING IT OFF.
I WAS SO -- IT WAS MAKING MY
BLOOD BOIL I FELT THEY WERE
SAYING THINGS BEHIND MY BACK
BECAUSE I HEARD LAUGHING AND
GIGGLING AND THEY SAID YOUR A
PAIN IS BECAUSE YOU FELL DOWN
THE STAIRS YOU CAN TAKE MEDICINE
AND THEY WEREN'T LISTEN FOR A
HEARTBEAT OR ANYTHING.
I WAITED A LONG TIME FOR
NOTHING.
THERE'S A LOT OF RACISM GOING
EVERYWHERE, WE ALL KNOW THAT AND
UNFORTUNATELY TWO DAYS LATER I
ENDED UP MISS CAR -- MISCARRYI.
SOME REPORTED BIAS WHICH WAS AN
IMPORTANT THEME ARE FOUR FOCUS
GROUP AND INSTANCES OF
STEREOTYPING FROM THE MEDICAL
AND THEIR OWN COMMUNITY.
MANY FELT OTHER PACIFIC ISLANDER
OR POLYNESIAN COMMUNITY WERE
EXPECTED TO SUCK IT UP AND
OTHERS FELT THEY COULDN'T SHARE
THEIR STRUGGLE.
MOST THE DISCRIMINATION AND
STEREOTYPING CAME FROM MEDICAL
PROFESSIONALS WHICH OFTEN
INTERFERED WITH THEIR ABILITY TO
RECEIVE PROPER TREATMENT AND
MEDICAL CARE WHILE PREGNANT AND
IT INCLUDES COMMENTS ABOUT
INFANTS QUOTE UNQUOTE, BEING
HUGE, TAKING AFTER THE POLY SIDE
AND POLYNESIAN WOMEN BEING
QUOTE, BORN TO BREED.
ONE PARTICULAR QUOTE THAT
EXEMPLIFIES THIS ONE PERSON SAID
IN EACH OF MY INTERACTIONS
INITIALLY MEETING A PROVIDER OR
MEETING WITH ANYONE LIKE AN
ULTRASOUND CONDITION I'D REGULAR
HEAR, YOU'LL BE POLYNESIAN, YOUR
BABY WILL BE HUGE.
I DON'T KNOW IF THAT MAKES IT TO
ASSUME I WILL HAVE GESTATIONAL
DIABETES I FELT IT PUT ME INTO A
PRE DETERMINED QUALITY OF CARE
BECAUSE I ALWAYS PAY ATTENTION
AND SAY CAN YOU CHECK THE BABY
WEIGHT AND THIS PARTICIPANT HAD
A OF STILLBIRTHING DURING PRIOR
PREGNANCY.
AND FINALLY, WE'LL TALK A LITTLE
BIT ABOUT CULTURAL HUMILITY AND
MEANING MAKING.
THE NATIVE HAWAIIAN AND AMERICAN
INDIAN PARTICIPANTS REPORT
THERE'S A SENSE OF DISTANCE AND
ISOLATION BETWEEN THEMSELVES AND
PREDOMINANTLY WHITE HEALTH CARE
PROVIDERS AND IT'S ATTRIBUTED TO
A LACK OF CULTURAL CURIOSITY.
OR DISMISSAL AND IT'S IMPORTANT
AROUND MEANING MAKING AROUND
PREGNANCY AND LACK OF CULTURAL
HUMILITY AND BEING CURIOSITY OF
THE CULTURAL ACTIVITIES THAT MAY
HELP WITH MEANING MAKING MAY BE
DISMISSED.
-- DISMISSED.
THERE'S TWO QUOTES I THINK ARE
PARTICULARLY RELEVANT.
ONE PERSON SAID MY DAUGH
DAUGHTER-IN-LAW RECENTLY
EXPERIENCED A LOSS AND THERE'S A
GAP IN UNDERSTANDING.
I TOOK HER UP TO THE SACRED
PLACE BUT I WORRY SHE FEELS
GUILTY ABOUT THE LOSS.
THAT'S ONE FROM THE ELDERS.
A PACIFICER ISLANDER PERSON SAID
WE BURY THE PLACENTA IN THE HOME
AND IT'S SUPPOSED TO KEEP THE
KIDS CLOSE TO YOU SO WE TOLD OUR
DOCTOR AS WELL AS TWO NURSES AND
THEY ENDED UP LOSING THE
PLACENTA.
WHEN WE CAME TO GET IT I FELT
THE NURSES WERE INSENSITIVE AND
MADE JOKES SAYING IT WENT TO
PLACENTA HEAVEN.
THAT HURT ME TOO BECAUSE YOU
GIVE BIRTH AND YOU'RE VERY
EMOTIONAL AND IT WAS IMPORTANT
FOR ME AND MY HUSBAND TO DO AND
NOW WE FEEL CONFLICTED ABOUT
DOING IT WITH OUR OTHER KIDS.
I THINK WHAT I WOULD HOPE FOLKS
WOULD TAKE FROM THIS
PRESENTATION IS THAT THIS DATA
CAN RESULT IN SOMETHING OF A
COMMUNITY TRANSLATIONAL
APPROACH.
I HAVE NOT COME UP WITH A BETTER
WORD FOR IT YET BUT I'M KIND OF
CALLING IT COMMUNITY BENCH TO
BEDSIDE CREATING NEW INSIGHT IN
TERMS OF WHAT STRUCTURAL
BARRIERS INDIVIDUALS ARE FACING.
PEOPLE WITH LIVED EXPERIENCES
AND BE MORE RESPONSIVE TO
COMMUNITY IDENTIFYING NEEDS AND
CENTER THE COMMUNITIES MOST
HARMED BY STRUCTURAL INEQUITIES.
I THINK THERE'S MULTIPLE WAYS TO
INTERPRET THE DATA AND THINKING
ABOUT THE FOLKS WHO ARE IN
HEALTH CARE AND WORKING TO TRY
TO PREVENT INDIVIDUALS WITH HIGH
RISK FROM GOING OVER THE WATER
FALL AND I THINK HEARING FROM
PARTICIPANTS THEY WANT HEALTH
CARE PROVIDERS TO LISTEN AND TO
TAKE THEIR PAIN AND EXPERIENCES
SERIOUSLY IS SOMETHING THAT
PARALLELS OTHER THINGS THAT
WE'VE HEARD FROM BLACK WOMEN WHO
ARE IMPACTED BY MATERNAL
MORBIDITY AND MORTALITY AND I
THINK THERE'S A LOT OF WISDOM WE
CAN TAKE FROM THESE INDIVIDUALS
TO FEEL HEARD.
I THINK WE ALSO HEARD FROM
PARTICIPANTS AND FROM THE
EPIDEMIOLOGIC DATA AND SOME OF
THE NEIGHBORHOOD DATA WE DIDN'T
HAVE A CHANCE TO GET INTO TODAY
BUT THERE ARE STRUCTURAL
INFLUENCES THAT PUT NATIVE
HAWAIIAN AND PACIFIC ISLANDER
WOMEN AND OTHER FOLKS FROM
ETHNICALLY MARGINALIZED WOMEN AT
RISK OF STILLBIRTH AND CAN BE
ADDRESSED WHEN CENTERING THE
STORIES OF PEOPLE WITH LIVED
EXPERIENCE AND BRINGING THOSE
STORIES TO BEAR ON POLICY AND
STRUCTURAL CHANGE AND THEN I
THINK THERE'S LEARNING TO BE
DONE FOR THOSE INDIVIDUALS WHO
FALL OVER THE WATER FALL AND DO
EXPERIENCE A STILLBIRTH OR
PREGNANCY LOSS AND THAT IS THAT
OUR LACK OF LISTENING AND THE
HEALTH CARE SYSTEM OVER ALL LACK
OF CULTURAL HUMILITY IMPEDES
MEANING MAKING AND FOLKS'
ABILITY TO COPE WITH AND MANAGE
THE FEELINGS AROUND PREGNANCY
LOSS AND STILLBIRTH AND BEING
DISMISSIVE OF DIFFERENT
INDIVIDUALS' NEEDS IN TERMS OF
MEANING MAKING AS A PLACE WHERE
WE CAN IMPROVE.
IF YOU'LL SKIP AHEAD TO THE
FINAL SLIDE, I JUST WANT TO GIVE
IMMENSE GRATITUDE TO BOB SILVER
AND THE PLANNING GROUP FOR
INVITING ME TO THE COLLABORATION
TEAM AND DATA CORE AT THE
UNIVERSITY AND COLLABORATORS AND
FUNDERS AND AND ABOVE ALL THE
MOTHER PARTICIPANTS.
I LOOK FORWARD TO CONVERSATION
TO COME.
>>THANK YOU, THIS WAS GREAT IN
UNDERSTANDING MORE HOW TO
IMPLEMENT THE VOICE OF WHAT WE
WANT TO HEAR.
YOU BROUGHT UP A LOT OF THE
VOICE.
THANK YOU SO MUCH.
HOW WE'RE LOOKING TO THE LAST
SPEAKER WHICH IS DR. MENDOLA THE
CHAIR OF THE DEPARTMENT OF
EPIDEMIOLOGY AND ENVIRONMENT AT
THE UNIVERSITY OF BUFFALO.
THANK YOU.
>>I'M THANKFUL TO THE WORKING
GROUP ORGANIZERS FOR INVITING ME
AND THIS WILL BE A LITTLE BIT
DIFFERENT FROM THE TOPICS WE
TALKED ABOUT EARLIER I'M GOING
TO TALK ABOUT THE WORK LOOKING
AT ENVIRONMENTAL FACTORS
ASSOCIATED WITH STILLBIRTH RISK.
MOST OF WHAT I'LL TALK ABOUT IS
THE REPRODUCTIVE HEALTH STUDY
AND LINKED RECORDS TO MODIFIED
AIR POLLUTION AND WEATHER MODELS
AND I'LL TALK ABOUT WORK FROM
THE CONSORTIUM ON SAFE LABOR AND
I WANT TO TAKE THE OPPORTUNITY
TO ACKNOWLEDGE THIS WORK WAS ALL
FUNDED THROUGH THE INTRAMURAL
RESEARCH PROGRAM AT NICHD SO
THAT WAS A GREAT BENEFIT TO US
ALL.
SO IN OUR STUDIES, STILL BIRTHS
ARE DELIVERIES, 23 WEEKS OF
GESTATION OR LATER.
MOST OF THOSE DEATHS OCCURRED,
ANTIPARTUM AND 10% DURING
DELIVERY.
WE DO NOT HAVE CAUSE OF DEATH
INFORMATION.
IN THE CONSORTIUM OF SAFE LABOR
WE HAVE NEARLY 500 IN THE
CONSECUTIVE PREGNANCY STUDY.
THE EXPOSURES I'LL TALK ABOUT
ARE CHRONIC EXPOSURES AND ACUTE
EXPOSURES TRIGGERING EVENTS IN
THE DAYS PRIOR TO DELIVERY AND
WE'LL LOOK AT TEMPERATURE SMALL
INCREASES IN TEMPERATURE BUT
ALSO EXTREMES OF TEMPERATURE AND
WE'LL LOOK AT AIR POLLUTION AND
I'LL ALSO SHARE WITH YOU AN
ANALYSIS WE DID LOOKING AT
RESIDENTIAL SEGREGATION.
SO WHERE THE HOUSING AND SOCIAL
ENVIRONMENT AS WELL AS THE
AMBIENT TEMPERATURE AND AIR
POLLUTION ENVIRONMENT.
THE CONSORTIUM ON SAFE LABOR HAD
A BIG ROLE IN THE AIR QUALITY
AND REPRODUCTIVE HEALTH STUDIES.
IT WAS A NATIONWIDE OBSTETRIC
COHORT.
THERE WERE BIRTHS FROM 2002 TO
2008.
OVER 223,000 SINGLE DELIVERIES
AND THIS DATA SET IS BASED ON
MEDICAL RECORDS, ELECTRONIC
MEDICAL RECORDS FOR THE
INTRAPARTUM MISSION AND HAD
NEONATE CHARTS AND THE
COMPLICATION CODES AND OTHER
THINGS WERE IN THE CHARTS IN THE
ICD 9 CODES AND USED THE
HOSPITAL REFERRAL REGIONS AS THE
UNIT OF GEOGRAPHY TO LOOK AT
TEMPERATURE AND ALSO TO LOOK AT
AIR POLLUTION.
WE LOOKED AT MAIN EFFECTS
RELATED TO CRITERIA AIR
POLLUTANTS AND LOOKING AT THE
INTERQUARTILE RANGE FOR THE
POLLUTION AND AIR WE REGULATE,
PARTICULATE MATTER, 10 MICRONS
AND SULFUR DIOXIDE AND OTHERS
AND THE TEMPERATURE MODELS WE
LOOKED AT CHRONIC EXTREME THE
UPPER AND LOWER PERCENTILE FOR
EACH STUDY SITE AS WELL AS
LINEAR UNITS PER 1 DEGREE
CELSIUS IN CROSSOVER MODELS.
JUST TO GIVE YOU A SCHEMATIC.
THE FIRST ARM YOU SEE GOING DOWN
WE HAD METEOROLOGY.
THIS IS WHERE THE WEATHER PLAYS
AND FORECASTING MODEL BUT ALL
SORTS OF METEOR LOGIC DATA FEEDS
IN THE MODEL.
ON THE OTHER STREAM OF INPUTS WE
HAVE THE NATIONAL EMISSION
INVENTORY FROM THE EPA AND THOSE
ALSO FEED INTO THE MODEL.
WE HAVE EVERY HOUR FROM 10 YEARS
THE METEOROLOGICAL DATA AND
EMISSIONS DATA.
THAT'S THE FIRST STAGE OF THE
MODELS, ONCE WE GET THE
PREDICTED HOURLY LEVELS FOR THE
POLLUTANTS WE CORRECT THE MODEL
FOR REAL TIME MONITORING DATA
FROM THE AIR QUALITY SYSTEM AND
ALSO LOOKING AT THINGS LIKE
PROXIMITY TO MAJOR ROADWAYS AND
DID INPUTS RELATED TO WILDFIRES
AND WE ADJUSTED THE
CONCENTRATIONS IN THE MODEL DATA
FOR THOSE EXPOSURE ESTIMATESES.
-- ESTIMATES.
WHEN YOU'RE THINKING ABOUT WHAT
THOSE IPOLLUTION LEVEL IS TELLIG
YOU THE MEDICAL RECORDS WERE ALL
DE-IDENTIFIED AND WE AVERAGE UP
ALL THE AVERAGE HOURLY LEVELS
OVER THE HOSPITAL REFERRAL
REGION.
SOMETIMES AVERAGED INTO DAYS.
OTHER TIMES AVERAGED INTO
TRIMESTERS OR THE WHOLE
PREGNANCY AVERAGE BASED ON THOSE
HOURLY MEASUREMENTS.
THE CONSORTIUM ON SAFE LABOR WE
SAW 12 SITES AND 19 HOSPITALS
WITH 15 HOSPITAL REFERRAL
REGIONS.
THE CONSECUTIVE PREGNANCY STUDY
WAS IN UTAH MOST OF IT IN THE
UTAH INTERMOUNTAIN HEALTH CARE
SYSTEM AND HAD 20 HOSPITALS
THERE.
ALL OF THE EXPOSURES WERE
WEIGHTED FOR POPULATION FOR
POPULATION DENSITY AND IF THEY
WERE IN THE HOSPITAL REFERRAL
REGION THAT WERE A LAKE OR WATER
OR SOMETHING THAT DIDN'T COUNT.
THEY WERE WEIGHTED.
AREAS WHERE POPULATION WAS MORE
DENSE IT WEIGHTED UP.
WE ALSO DID INVERSE DISTANCE
WEIGHTING ON THE MONITOR DATA
FOR THE CRITERIA AIR POLLUTANTS
AND THE AMBIENT WEATHER CAME
FROM THE RESEARCHING MODEL.
SO I'M GOING SHOW DATA FROM
THREE TIMES OF STUDY DESIGNS.
THE FIRST TWO ARE COHORT OR CASE
CONTROL STUDIES WHERE WE COMPARE
THE PREGNANCIES AND PREGNANT
PEOPLE WITH THE ADVERSE OUTCOMES
TO THOSE OUTTHE ADVERSE OUTCOME.
TO SEE IF THE EXPOSURE IS MORE
COMMON IN THOSE WITH THE
OUTCOME.
SO THIS IS ESSENTIALLY THE MODEL
USED FOR CHRONIC EFFECT AND
ANSWERS THE QUESTION WHY THIS
PERSON, WHY THIS PREGNANCY AND
NOT ANOTHER.
THAT WOULD BE THE FIRST TWO
MODELS.
ONE IS THE WHOLE PREGNANCY
CHRONIC ANALYSIS WHERE WE LOOKED
AT EVERYONE'S PREGNANCY AND IF
THEY WERE IN THE UPPER OR LOWER
10th PERCENTILE OF TEMPERATURE
FOR THEIR CITY, HOSPITAL
REFERRAL REGION, THEN WE CALLED
THAT COLD ORE HOT AND COMPARED
THE PREGNANCIES TO THE 10th OR
90th PERCENTILE OR MODERATE
LEVEL AND SECONDLY DID CASE
CONTROL STUDIES BECAUSE SOME OF
THE STILL BIRTH CASES ACTUALLY
HAVE SHORTER GESTATIONS SO WE
COMPARED THE WHOLE TEMPERATURE
FOR CASE PREGNANCY TO FOUR
CONTROL PREGNANCIES THAT WERE
ONGOING AT THE TIME OF THE STILL
BIRTH SO THEY WERE TRUNCATED
ESSENTIALLY AT THE GESTATIONAL
AGE OF THE CASE.
SO THOSE ARE THE CHRONIC MODELS
THAT WE LOOKED AT.
WE ALSO LOOKED AT A CASE
CROSSOVER ANALYSIS WHICH
COMPARES EXPOSURE DURING THE
HAZARD TIME.
IN THIS CASE THE WEEK PRIOR TO
DELIVERY TO A CONTROLLED TIME
AND IN THIS CASE A PERIOD BEFORE
AND AFTER THAT WEEK PRIOR TO
DELIVERY FOR THE SAME PERSON.
SO WE TRIED TO CONTROL FOR THE
NON-TIME VARYING FACTORS AND
THIS CONTROLS FOR GENETICS,
DIET, DISEASE PREDISPOSITION,
HABITUAL BEHAVIORAL THINGS LIKE
SMOKING AND WE USED THIS MODEL
TO LOOK AT ACUTE EFFECTS DID
SOMETHING IN THE WEEK PRIOR TO
THE EVENT THAT'S ASSOCIATED WITH
RISK.
SO THE QUESTION HERE IS WHY NOW?
IS IT THE EXPOSURE THAT'S
DIFFERENT?
THE EXPOSURE'S THE ONLY THING
THAT VARIES OVER TIME IN THOSE
MODE
MODELS SO THE FIRST DATA WE
ANALYZED WAS FROM THE CONSORTIUM
ON SAFE LABOR.
WHOLE PREGNANCY EXPOSURES AND
LOOKED AT SITE SPECIFIC CHRONIC
TEMPERATURE RANKS AND THIS WAS
IMPORTANT BECAUSE IF YOU RECALL
FROM THE MAP I SHOWED, WE HAD
SITES IN FLORIDA AND CALIFORNIA
AND SITES IN NEW ENGLAND AND
UTAH SO THERE'S PLACES WE WOULD
LIKE TO AVOID COMPARING A SITE
IN NEW ENGLAND AS COLD TO A SITE
IN MIAMI AS HOT.
YOU NEEDED TO DO IT FOR EACH
PARTICULAR SITE ACCOUNT FOR
LOCAL ACCLIMATION TO YOUR
GENERAL CLIMATE AND TO AVOID
COMPARING ACROSS SITES.
HERE WE LOOKED AT EXTREMES AND
THE MODELS WERE ADJUSTED FOR A
SERIES OF CHARACTERISTICS OF THE
PARENTS, MOTHERS AND BABIES AS
WELL AS SITE SEASON OF
CONCEPTION, HUMIDITY, OZONE WAS
PREVIOUSLY SHOWN TO BE
ASSOCIATED WITH STILLBIRTH AND
WE SAW HIGH RISKS ASSOCIATED
WITH BEING BOTH IN THE COLD OR
HOT STRATA.
ODDS RATIOS FROM 3.7 TO 4.75 AND
THE ATTRIBUTABLE RISK, HOW MANY
STILLBIRTHS ANNUALLY IN THE
U.S. COULD BE ASSOCIATED WITH
THOSE TEMPERATURES WERE ABOUT
1,000 CASES IN BOTH THE COLD AND
WARM SEASONS OF EACH YEAR SO A
SUBSTANTIAL NUMBER OF DEATHS
ASSOCIATED POTENTIALLY WITH
EXTREME HEAT AND COLD.
WHEN WE DID THE CASE CROSSOVER
WE'RE WE'RE LOOKING ACUTE
AFFECTS IN THE DAYS PRIOR TO
DELIVERY AND FOR EACH 1 DEGREE
CELSIUS INCREASE IN THE WARM
SEASON WE SAW A 6% INCREASE IN
STILLBIRTH ABOUT FOUR ADDITIONAL
CASES PER 10,000 BIRTHS.
IN THE CONSORTIUM ON SAFE LABOR
WE DID NOT SEE AN ACUTE
ASSOCIATION WITH COLD.
SO WE LOOKED AT THE NICHD
CONSECUTIVE PREGNANCY STUDY.
THIS STUDY DESIGN WAS SIMILAR TO
THE CONSORTIUM ON SAFE LABOR AND
INCLUDES WOMEN WITH MORE THAN
ONE DELIVERY.
AND ALL OF THE SITES WERE IN
UTAH SO HERE'S A PICTURE OF
WHERE THE HOSPITALS WERE AND IF
YOU COULD ADVANCE ONE MORE TIME
AS WELL AS HOSPITALS IN THE SALT
LAKE CITY REGION.
YOU CAN SEE THE SMALLER BOX WITH
THE RED DOTS IS EXPLODED IN THE
UPPER PICTURE.
THEY HAD AT LEAST TWO DELIVERIES
AND LOW-RISK WOMEN.
IN THE CONSORTIUM ON SAFE LABOR
IT WAS A NATIONWIDE COHORT.
THERE WAS A LOT MORE ADVERSE
OUTCOMES IN THE CSL AND AS AN
EXAMPLE THE PRETERM DELIVERY
RATE IN THE CONSECUTIVE
PREGNANCY STUDY WAS LESS THAN
6%.
IT WAS MORE THAN 11% IN THE
CONSORTIUM ON SAFE LABOR.
IT WAS A SET OF LOW-RISK WOMEN.
WE HAD ABOUT 50,000 WOMEN,
114,000 SINGLETONS AGAIN ALMOST
500 STILLBIRTHS.
SAME LINKAGE TO THE AIR
POLLUTION MODELS AND TEMPERATURE
MODELS BY HOSPITAL AND WE DID
THE SAME CHRONIC COHORT CASE
CONTROL MODELS AND ALSO THE
ACUTE CASE CROSSOVER MODELS.
BECAUSE THEY WERE SIMILAR IN
DESIGN AND ONLY DIFFERENT IN
TERMS OF THE POPULATION STUDY,
WE COMPARED THE RESULTS WE GOT
FROM THE CONSORTIUM ON SAFE
LABOR AND HERE YOU'LL SEE THOSE
IN THE GRAY BARS AND WITH THE
LIGHTER COLORED DOTS IN THE
MIDDLE OF THE EFFECT ESTIMATES
TO THE CONSECUTIVE STUDY THE
DARKER COLORED DOTS IN THE WHITE
BARS AND YOU CAN SEE THAT FOR
BOTH THE WHOLE PREGNANCY CHRONIC
ANALYSIS AND FOR THE CASE
CONTROL ANALYSIS THE RESULTS FOR
THE CONSECUTIVE PREGNANCY STUDY
WERE VERY SIMILAR OR SOMETIMES
HIGHER.
SO THE RISKS WERE HIGHER IN THE
LOW-RISK POPULATION THAN WE HAD
OBSERVED IN THE NATIONWIDE
STUDY.
SO THAT AGAIN REALLY SURPRISED
US.
SO WHEN WE LOOKED FOR EXAMPLE WE
WERE SEEING STILL ODDS RATIO IN
THE 4 TO 5 RANGE BUT ALSO IN THE
6 TO 7 RANGE FOR THE CASE
CONTROL ANALYSIS.
THAT WAS IN THE CONSECUTIVE
PREGNANCY STUDY.
SIMILARLY IN THE ACUTE MODEL
WHERE WE LOOK AT THE DAYS PRIOR
TO DELIVERY, FOR THE WARM SEASON
WE SAW SOMETHING FAIRLY SIMILAR
BETWEEN THE CONSECUTIVE
PREGNANCY STUDY AND THE
CONSORTIUM ON SAFE LABOR BUT IN
THE COLD SEASON WHERE WE DIDN'T
OBSERVE A RISK WE DID OBSERVE A
RISK OF 6% INCREASE IN THE
CONSECUTIVE PREGNANCY STUDY.
WHEN WE MOVED TO AIR POLLUTION
AND STILLBIRTH WE LOOKED AT
CHRONIC EXPOSURE AND WERE
INTERESTED IN THE PREGNANCY AND
INTERESTED IN FIRST TRIMESTER
AVERAGES.
FIRST TRIMESTER AIR POLLUTION IS
ASSOCIATED WITH SEVERAL ADVERSE
OUTCOMES LIKE PRE TERM BIRTH AND
THE THOUGHT IS IT'S RELATED TO
POOR PLACENTATION AND WITH THE
MOTION THERE MAY BE TRIGGERING
EVENTS THAT SAY, OKAY, HERE'S
THE ACUTE EXPOSURE ASSOCIATED
WITH A PREGNANCY LOSS.
THE FINAL MODELS WERE ADJUSTED
FOR A LOT OF MATERNAL VARIABLES
INCLUDING STUDY SITE, YEAR OF
BIRTH, HERE WE'RE LOOKING AT AIR
POLLUTION WE ADJUST FOR
TEMPERATURE AS WELL AS SEASON OF
CONCEPTION.
WE FOUND CONSISTENT RISK AND
DIDN'T SEE IT WITH OTHER AIR
POLLUTANTS.
BECAUSE WE HAD DONE ANOTHER
STUDY LOOKING AT EARLIER
PREGNANCY LOSS AND THERE AS WELL
WE SAW RISKED WITH OZONE.
IT'S AN OXIDATIVE STRESS IT'S
IMPORTANT FOR THIS EXPOSURE
OUTCOME RELATIONSHIP AND YOU CAN
SEE WHEN YOU LOOK AT THE
EXPOSURE WINDOWS WE STUDY THAT
THE RISKS WERE NOT ON THE DAY OF
DELIVERY OR THE DAY BEFORE AND
THAT REALLY FITS WITH THE MODEL
THAT WE'RE THINKING ABOUT THESE
RISKS EVEN FOR TRIGGERING OR
ACUTE EVENT SINCE 90% OF THE
STILL BIRTHS WERE ANTE-PARTUM.
IT MAKES SENSE THE RISKED WOULD
BE BACKED OFF AND SAW A 22%
INCREASE IN RISK IN THE WEEK
PRIOR TO DELIVERY AND SAW
SIGNIFICANT INCREASE OF 18% FOR
FIRST TRIMESTER OZONE AND NEARLY
40% INCREASED RISK FOR WHOLE
PREGNANCY EXPOSURE TO OZONE.
AND ABOUT 8,000 STILL BIRTHS PER
YEAR COULD BE ATTRIBUTED TO
OZONE EXPOSURE.
I JUST WANTED TO INTRODUCE A FEW
THINGS THINKING ABOUT WE DON'T
HAVE CAUSE OF DEATH DATA BUT WE
CAN THINK ABOUT MECHANISTICALLY
WHAT MAY BE HAPPENING.
WE KNOW AIR PLUS -- POLLUTANTS
ARE ASSOCIATED WITH ADVERSE
HEALTH AFFECTS AND THE CHRONIC
EXPOSURES LEAD TO A CASCADE OF
POORER OUTCOMES THAT CAN BE
ASSOCIATED WITH STILLBIRTH AT
THEN.
AT THE END.
AND THEN ALSO TEMPERATURE
STRESS.
PREGNANT PEOPLE CAN THERMO
REGULATE.
THERE'S TEMPERATURE STRESS OUGHT
TO BE MANAGEABLE BUT WE DO KNOW
IN EXTREMES OF TEMPERATURES,
PARTICULARLY EXTREME HEAT
THERE'S A LOT OF PROCESSES THAT
CAN HARM THE FETUS OR PREGNANT
PERSON LIKE REDUCTION IN
PLACENTAL BLOOD FLOW AND
INFLAMMATORY RESPONSES,
HYPERCOAGULATABILITY AND
INTERFERING WITH PLACENTAL BLOOD
FLOW AND OTHER STRESSORS IN THE
BODY.
MOVING FROM THE AIR POLLUTION
AND TEMPERATURE TO LOOK AT
RESIDENTIAL SEGREGATION.
THESE DATA ARE ALSO FROM THE
CONSORTIUM ON SAFE LABOR AS WAS
NOTED EARLIER WE SAW STILLBIRTH
RATES IN OUR DATA TWO TO THREE
TIMES HIGHER FOR BLACK MOTHERS,
6.7 DEATHS VERSUS 2.9 DEATHS PER
1,000 DELIVERIES AND WE LOOKED
AT TWO MEASURES OF SEGREGATION.
THE ISOLATION INDEX WHICH IS
INDEX THAT PREDICTS A MEMBER OF
ONE RACIAL GROUP WITH INTERACT
WITH A MEMBER OF THE SAME RACIAL
GROUP AND THEN THE DISSIMILARITY
INDEX A DISTRIBUTION OF BLACK
AND WHITE POPULATIONS IN THE
HOSPITAL REFERRAL REGION.
AND LOOKING AT THE CENSUS FROM
1990 TO 2000 AND THE COMMUNITY
SURVEY AND THE CONSORTIUM ON
SAFE LABOR DATA WAS FROM 2002 TO
2008.
WE FOUND LOWER SEGREGATION HAS
MORE BENEFIT FOR BLACK MOTHERS.
FOR CURRENT SEGREGATION SO
CURRENT AT THE TIME OF THE BIRTH
AND PERSISTENT SEGREGATION,
GOING BACK IN TIME AND LOOKING
AT AREAS THAT WERE PERSISTENTLY
SEGREGATED, BLACK MOTHERS HAD
SIGNIFICANTLY REDUCED AREAS OF
STILLBIRTH RISK IN AREAS OF
SEGREGATION THAT WAS IN A DOSE
RESPONSE PATTERN.
THEY HAD A STRONGER POSITIVE
EFFECT IN THE AREAS THAT HAD THE
LOWEST SEGREGATION.
AND RISK WAS LOWERED AS MUCH AS
80% FOR BLACK WOMEN WHEN THE
DESEGREGATION DECREASED OVER
TIME.
WHITE MOTHERS HAD SOME BENEFIT
OF LIVING IN AREAS OF LOW
SEGREGATION BUT IT WAS NOT
CONSISTENT.
SO WHITE MOTHERS HAD NO
INCREASED RISKS, SOME SPORADIC
BENEFITS BUT NO CONSISTENT
BENEFIT AND WHEN WE DID THE
ATTRIBUTABLE RISK MODEL WE SAW
REDUCING SEGREGATION CAN RESULT
IN 900 FEWER STILL BIRTHS PER
YEAR YOUNG BLACK BUT NO
SIGNIFICANT CHANGE IN STILL
BIRTH DEATHS AMONG WHITES.
SO WHEN WE'RE THINKING ABOUT
THIS AND THIS IS ACTUALLY
SIMILAR TO SOME OF THE IDEAS WE
WERE JUST TALKING ABOUT IN THE
LAST TALK, WE'RE LOOKING AT
LARGE POPULATION-BASED STUDIES
AND SEEING HIGH RISKS FOR
STILLBIRTH THAT ARE ASSOCIATED
WITH ENVIRONMENTAL FACTORS.
INCLUDING AND LOW RISK
POPULATION SO THERE ARE
STRESSORS, PHYSIOLOGICAL AND
PSYCHOLOGICAL THAT IMPACT RISK
AND SOME OF THESE ARE NOT GOING
TO GET BETTER ANY TIME SOON.
SO WE SEE SEGREGATION ACTUALLY
APPEARS TO BE INCREASING IN THE
UNITED STATES.
WE KNOW THAT EXTREMES OF
TEMPERATURE AND RELATED AIR
POLLUTION ARE GOING TO GET WORSE
BECAUSE OF THINGS LIKE CLIMATE
CHANGE.
WE SEE WITH CLIMATE CHANGE ALSO
MORE EXTREME WEATHER EVENTS,
DROUGHTS, HEAT WAVES AND OTHER
STRESSORS THAT WE DIDN'T LOOK AT
HERE LIKE FLOODING, HURRICANES
AS WELL AS WILDFIRES.
SO IT IS IMPORTANT WHEN WE'RE
THINKING ABOUT RISK TO CONSIDER
THE WHOLE ENVIRONMENT OF
PREGNANT PEOPLE INCLUDING THE
SOCIAL CONTEXT, HOUSING QUALITY,
AND AMBIENT ENVIRONMENTS WHERE
INDIVIDUALS OFTEN HAVE LITTLE
CONTROL.
IN THE CARTOON THINKING ABOUT
THE NATURAL ENVIRONMENT AND THE
BUILT AND SOCIAL ENVIRONMENT HOW
THEY BEHAVE AND INHERENT
CHARACTERISTICS ARE ALL THINGS
THAT WORK TOGETHER IN THE
RELATIONSHIP RELATED TO RISK.
I'M HAPPY TO TAKE QUESTIONS AND
MY E-MAIL IS HERE IF PEOPLE WANT
TO REACH ME ABOUT MORE OF THESE
OFFLINE AND I LOOK FORWARD TO
THE DISCUSSION AND THANK YOU
AGAIN TO THE ORGANIZERS FOR
INVITING ME.
>>THANK YOU DR. MENDOLA FOR THE
PRESENTATION AND IT'S CLEAR WE
HAVE ETHNIC AND RACIAL
DISPARITIES AND SOCIAL
DETERMINATES CONTRIBUTING TO THE
STILLBIRTHS AND WE NEED TO FIND
A WAY TO LOOK AT THE DATA AND
DATA EXPERIENCE IN UNDERSTANDING
STILL BIRTHS.
THERE'S A ROLE AND MORE
CLARIFICATION ABOUT SPECIFICALLY
THE BLACK POPULATION.
>>DR. LONGO, WOULD YOU REPEAT
THE QUESTION.
I COULDN'T QUITE UNDERSTAND.
>>THE QUESTION ABOUT IF YOU
COULD SPECULATE A LITTLE BIT
MORE ABOUT THE ROLE OF RACISM IN
THE BLACK COMMUNITY.
>>THE ROLE OF RACISM?
YES.
AND ONE THING WE DISCOVERED IN
THE CASE CONTROL STUDY WAS THAT
STRESSFUL LIFE EVENTS, WHICH HAS
BEEN MEASURED BUT AFFECTS PEOPLE
IN GENERAL AND I THINK
ORIGINALLY DEVELOPED AT CDC, WE
AND WE FOUND THAT INCREASED
NUMBER OF STRESSFUL LIFE EVENTS
WAS ASSOCIATED WITH STILLBIRTH
AT PREGNANCY.
THERE WAS NO STATISTICAL
INTERACTION BETWEEN AFRICAN
AMERICAN, HISPANIC AND WHITE
WOMEN WITH RESPECT TO THE RISK
OF STRESSFUL LIFE EVENTS FOR
STILLBIRTH.
WHAT WAS STRIKING THOUGH WAS
THAT THERE WERE FAR MORE
STRESSFUL LIFE EVENTS IN THE
LIVES OF AFRICAN AMERICAN WOMEN
AND THEIR CHANCE WAS INCREASED
BY THE STRESSFUL LIFE EVENTS
BECAUSE THEY HAD MORE STRESSFUL
LIFE EVENTS.
I THINK THIS IS AN IMPORTANT
DISTINCTION WHICH ALSO I WAS
TRYING TO MAKE WITH RESPECT TO
PRETERM DELIVERY.
IF THE RISK IS THE SAME, AND IF
RACISM IS AFFECTING THE
TRIGGERING OF PRE TERM DELIVERY
THEN THAT IS IN AFFECT THE
REASON, THE CAUSE FOR THE
ASSOCIATION BETWEEN RACISM AND
STILLBIRTH.
ONE RISK IS DEPRESSION.
IN THE SCREEN STUDY WE DID NOT
ASK ABOUT CURRENT DEPRESSION
BECAUSE THE WOMEN OF COURSE AT
THE TIME OF THE DELIVERY WERE
VERY STRESSED OUT AND KNOW
REASON TO STRESS THEM FURTHER
ABOUT THEIR CURRENT SITUATION
WITH DEPRESSION.
SO WE WAITED UNTIL THE FOLLOW-UP
STUDY TO ASK ABOUT HISTORY OF
DEPRESSION AND THERE WAS A RISK
FACTOR FOR STILLBIRTH.
AFRICAN AMERICAN WOMEN ARE AT
GREATER RISK OF BEING DEPRESSED.
ONE REASON IS THE NUMBER OF
STRESSFUL LIFE EVENTS.
ANOTHER HOWEVER, IS GENDERED
RACISM.
I MENTIONED QUICKLY IN PASSING
THE RACISM MEASURE.
IN SEPARATE STUDIES WE
CORRELATED THE ASSOCIATION OF
INCREASED GENDER RACISM IN
DEPRESSION IN PREGNANT WOMEN.
AFRICAN AMERICAN WOMEN ARE UNE
LIKELY EXPOSED TO CERTAIN KINDS
OF STRESSORS AND DEVELOPING
MEASURES OF THE STRESSORS WE
DEVELOPED THIS OVER A PERIOD OF
MORE THAN A DECADE AND STARTED
WITH 68 ITEMS AND NARROWED IT
DOWN TO ITEMS WHICH CAN BE ASKED
OF ANYONE BUT TEND TO SHOW A
MUCH HIRE RACISM INDEX FOR
AFRICAN AMERICAN WOMEN.
THIS IS BEING INCORPORATED IN
SAN FRANCISCO INTO ELECTRONIC
PRENATAL RECORDS SO WOMEN ARE
BEING ASKED IN PREGNANCY ABOUT
THE ITEMS IN THIS SCALE AND IF
ANYONE'S INTERESTED I CAN
PROVIDE INFORMATION ABOUT THAT.
WHAT WE FOUND IS THAT PERCEIVED
STRESS, WHICH IS ANOTHER MEASURE
OFTEN USED IN TRYING TO
DETERMINE RISK FACTORS
PSYCHOSOCIAL RISK FACTORS FOR
PREGNANCY OUTCOME, DOES NOT
REALLY GIVE MUCH ADDITIONAL
INFORMATION OVER AND ABOVE
STRESSFUL LIFE EVENTS AND THIS
MEASURE OF GENDERED RACISM FOR
THE ASSOCIATION OF THOSE THINGS
WITH DEPRESSION AFRICAN AMERICAN
WOMEN.
IF YOU THINK OF THIS IN A LINEAR
BASIS THE RACISM INCREASES THE
RISK OF DEPRESSION AND THEN THE
DEPRESSION INCREASES THE RISK OF
EXTREME PRIMA SURE STILL BIRTH.
>>THANK YOU SO MUCH.
THANK YOU, THIS IS A WONDERFUL
EXPLANATION.
I SEE HANDS UP.
I WANTED TO ASK FOR ADDITIONAL
THINGS TO SAY BEFORE WE MOVE
TOWARDS THE DISCUSSION.
>>MONICA, LETS TAKE
DR. DUDLEY'S QUESTION AND THEN I
HAVE A COUPLE AS WELL.
>>I HEARD YOU HAD A LITTLE BIT
OF SNOW.
MY QUESTION IS ABOUT THE
MECHANISMS OF THE ASSOCIATION
AND I THINK YOU'LL ADMIT TO
SPECULATION IF YOU WERE.
I KNOW OTHER STUDIES HAVE SHOWN
POPULATIONS THAT HAVE A SIMILAR
ASSOCIATION OF STILLBIRTH.
ARE THERE ANIMAL MODELS THAT
TRIED TO LOOK AT THIS IN A MORE
BIO CHEMICAL OR PATHOPHYSIOL
LOGIC WAY?
I DON'T KNOW IF THERE'S ANIMAL
MODELS TO LOOK AT AIR POLLUTION,
FOR EXAMPLE?
>>THINGS LIKE LITTER SIZE AND
IT'S HARD TO LOOK AT STILLBIRTH
AND PREGNANCY LOSS.
AND SOME REPRODUCTIVE THINGS
DON'T TRANSLATE VERY WELL.
THE TEMPERATURE MODELS ARE NOT
VERY MUCH DATA AT ALL AND WE
WERE SHOCKED BY THE LEVEL OF
RISK WE SAW.
>>I'D LOVE TO HEAR OMA'S
COMMENTS AS WELL BUT I'D LIKE TO
CONGRATULATE ALL OUR SPEAKERS
FOR OUTSTANDING TALKS,
DR. HOYERT, DR. HOGUE,
DR. DEBBINK AND DR. MENDOLA AND
IT'S TOUGH TO COVER BUT THE
INFORMATION YOU PROVIDE THE
PANEL IS PRICELESS.
I HAVE A QUESTION FOR
DR. MICHELLE DEBBINK, WHEN YOU
THINK ABOUT THE VOICES YOU HEARD
IN UTAH AND YOU LOOK AT THE
IMPACT OF STRUCTURAL RACISM ON
THE DELIVERY OF HEALTH CARE, DO
PATIENTS AND I'M LOOKING AT IT
FROM THE LENS OF THE MEDICAL
PROVIDER, THERE ARE ASPECTS OF
STRUCTURAL RACISM THAT WILL TAKE
GENERATIONS TO FIX.
THERE ARE THINGS WE CAN DO IN
OUR OWN APPROXIMATE CIRCLES
WHERE GAPS IN DELIVERY CAN BE
REMOVED.
HOW DO WE SEPARATE THE TWO AND
HOW DO BEGIN TO IMPACT THE
THINGS WE CAN DO IMMEDIATELY?
>>THANK YOU FOR THE QUESTION.
IT'S INCREDIBLY IMPORTANT.
I WOULD SAY THERE ARE A HANDFUL
OF DIFFERENT AVENUES WE CAN TAKE
AS HEALTH CARE PROVIDERS AND
FROM OUR OWN EDUCATION AND
TRAINING.
ONE OF WHICH I HAVE THE GREAT
FORTUNE OF WORKING WITH A
COLLEGIATE THE UNIVERSITY OF
UTAH TRANSFORMING SIMULATION
TRAINING INTO A WAY OF BOTH
SIMULATING AND THEN SIMULATING
REPAIR OF CULTURAL RUPTURES AND
IMPLICIT BIAS AND FROM PROVIDERS
WHETHER IT'S FROM PROVIDER OR
IN-PATIENT TRAINING SETTINGS AND
WE'RE PLANNING WORK TOWARDS
SIMULATIONS THAT ARE DESIGN TO
HELP PROVIDERS INTERACT WITH
PATIENTS IN A WAY THAT CENTERS
ANTI-BIAS IN PARTICULAR THIS
UPCOMING SIMULATION WILL BE ON
STIGMA AND BIAS AROUND SUBSTANCE
USE DISORDER BUT THERE ARE A
NUMBER OF GROWING OPPORTUNITIES
FOR PROVIDERS TO PRACTICE.
I THINK THAT IS A KEY PIECE OF
THIS IS TO PRACTICE THE SAME
WE'D PRACTICE ANYTHING ELSE WE
DO, BREAKING BAD NEWS OR
ANYTHING TO PRACTICE HAVING
RESPECTFUL INTERACTIONS WITH
THOSE WHO PRACTICE HUMILITY AND
THE OTHER THING WE CAN DO IS
LOOKING AT HOW HEALTH DELIVERY
SYSTEMS OCCURS AS A HEALTH
SYSTEM AND IN PARTICULAR IN
ACADEMIC HEALTH SYSTEMS CENTER
OUR PATIENTS EXPERIENCES MORE
INTENTIONALLY, MORE OFTEN SO
BRINGING TOGETHER ADVISORY
BOARDS WITH REAL TEETH THAT CAN
INTERACT WITH THE HEALTH CARE
SYSTEM IN TERMS OF THE DELIVERY
OF FINANCIAL SERVICE OR HOW
INSURANCE AND THINGS DO OR HOW
PATIENTS NAVIGATE THE SYSTEM IN
ORDER TO ACHIEVE THE OUTCOMES
THEY DESIRE.
ONE POTENTIAL ORIENTATION THAT
IS BENEFICIAL FOR DISRUPTING
STRUCTURAL AND INTERPERSONAL
RACISM AND USING A COMMUNITY
HEALTH WORKER MODEL FOR CARE
NAVIGATORS YOU INTEGRATE
INDIVIDUALS FROM THE PATIENT'S
HOME COMMUNITIES WITH EDUCATION
AND SYSTEM NAVIGATION STILLS
THAT ALLOW THE PATIENT TO HAVE
AUTONOMY TO NAVIGATE OUR QUITE
OBTUSE SYSTEM THAT LEAVES A LOT
OF PEOPLE FEELING AS THOUGH
THEY'RE NOT SURE WHEN TO TURN
NEXT WHEN THEY'RE NOT SURE ABOUT
THEIR DIAGNOSIS OR HOW TO
NAVIGATE THE SYSTEM AND AS WE
WERE JUST TALKING ABOUT,
STRUCTURAL RACISM REALLY DEFINES
THE DISTRIBUTION OF
OPPORTUNITIES FOR HEALTH AND
DEFINING THE DISTRIBUTION OF
OPPORTUNITIES FOR ACCESS TO
PEOPLE WHO KNOW HOW TO NAVIGATE
THE SYSTEM.
ACCESS TO BEING ABLE TO GIVE
FEEDBACK TO THE SYSTEM.
AND DISRUPT RACISM WITHIN OUR
SYSTEMS.
SEPARATE FROM AND NECESSARY BUT
INSUFFICIENT AS YOU SAY THE
OTHER LARGER COMMUNITY
STRUCTURAL FACTORS WILL TAKE
DECADES TO UNDUE BUT LIKE THE
PARABLE OF THE RIVER IT'S ALSO A
SOLUTION.
>>ALL FOUR TALKS WERE
FANTASTIC.
SO FULL OF INFORMATION AND
EXCELLENT AND THOUGHT PROVOKING.
I'D LIKE TO ASK EACH ONE IN
TERMS OF RESEARCH, WHAT WOULD BE
YOUR NEXT STEP TO REALLY MAKE AN
IMPACT ON STILLBIRTH IN THE
DIFFERENT DOMAINS OF YOUR
RESEARCH.
WHAT WOULD BE THE NEXT RESEARCH
STUDY THAT COULD REALLY HELP
ELEVATE THE ISSUE IN COMING UP
WITH SOLUTIONS.
SO I'LL START WITH DR. HOYERT
SINCE SHE WENT FIRST FOR THE
SESSION.
WE WOULD BE ABLE TO MAKE BETTER
USE OF THE INFORMATION AND
LOOKING AT DATA.
>>SO ADDING ADDITIONAL IN TERMS
OF RESEARCH ADDITIONAL VARIABLE
S I'M TRYING TO THINK BIT AS A
RESEARCH QUESTION.
SUPPORT FOR FILLING OUT THE
INSTRUCTIONS HOW TO FILL OUT THE
FETAL DEATH CERTIFICATE?
>>YEAH.
I THINK I CAN MAYBE EXAMINE
DIFFERENT LOCATIONS AND SEEING
WHAT THEY HAVE TRIED TO DO TO
LOWER THE PERCENT UNSPECIFIED
AND SEE THINGS DIFFERENT PLACES
HAVE TRIED AND WHAT HAS WORKED
FOR ONE NOT ANOTHER AND HOW YOU
CAN GET LESSONS LEARNED.
WE CAN EXPAND ACROSS THE
COUNTRY.
>>IT'S A TERRIFIC IDEA TO MAKE
THE COMPARISONS TO SEE WHAT
WORKS.
DR. HOGUE.
>>YOU'RE ON MUTE.
I WOULD LIKE TO SEE PILOT
STUDIES OF INCREASED MEASURES OF
RACISM IN PRAMS COUPLED WITH
LINKING THE FETAL DEATH
CERTIFICATES INVOLVING
RECRUITING WOMEN IN AREAS THAT
HAVE SPECIAL PROPORTION TO
AFRICAN AMERICAN WOMEN AND
SUBSTANTIAL TO THE REAL TEST OF
THIS METHODOLOGY CAN BE
DETERMINES BECAUSE THERE'S THE
POSSIBILITY OF LOOKING AT
CORRELATIONS BETWEEN EXTREME
PREMATURITY AND STILL BIRTH.
>>THANK YOU.
I THINK FOR MY PART THE RESEARCH
QUESTIONS THAT ARE THE FUTURE
DIRECTIONS FROM A RESEARCH
PERSPECTIVE WHERE I'D LOVE TO
SEE US GO IS DRIVEN BY COMMUNITY
PARTNERS BUT WE HAVE DONE WORK
IN COLLABORATION WITH AND
RELATED TO WHAT DR. HOGUE WAS
SAYING EARLIER THE NATIVE
HAWAIIAN PACIFIC ISLANDER
MOTHERS ASKED FOR IMPLEMENTATION
OF CULTURALLY IMPLEMENTED AS A
WAY OF DIMINISHING ADVERSE
OUTCOMES WRIT BROADLY.
I'D LIKE TO THINK OF A STEP
WEDGE DESIGN OR ROLLOUT STUDY
AND IMPLEMENTATION STUDY OF
HEALTH CARE OFFERINGS FOR THIS
COHORT AND THEIR RISK OF
PREGNANCY OUTCOMES RELATED TO
THAT.
I WAS EXCITED TO SEE
DR. MENDOLA'S DATA BECAUSE WE'RE
STARTING TO EXPLORE
ENVIRONMENTAL JUSTICE QUESTIONS
AND RACIAL SEGREGATION IS
WIDESPREAD ACROSS THE UNITED
STATES, IT'S NOT JUST A
PHENOMENON OF THE RUST BELT OR
SOUTHEAST UNITED STATES AND IN
SALT LAKE IT'S TRUE FOR OUR
PATIENT WHO'S IDENTIFY THIS WAY
OR THOSE WHO IDENTIFY AS LATINA
AND WE HAVE A UNIQUE OPPORTUNITY
TO THINK ABOUT SPIKES IN AIR
POLLUTION.
WE HAVE DAY TO DAY VARIATION
THAT'S NOT COMMON ACROSS THE
COUNTRY.
MANY LOCATIONS HAVE AN AVERAGE
THAT STAYS CON STAND OVER TIME
AND TEMPERATURE FLUCTUATIONS
WITHIN THAT.
WE HAVE QUITE A BIT OF VARIATION
IN THE DATA THAT MAY ALLOW US TO
IDENTIFY WEEK BY WEEK EXPOSURES.
WE'RE LOOKING INTO THAT OND THE
ADVICE OF PARTICIPANTS IN SOME
OF THESE FOCUS GROUPS.
I'M THINKING OF PARTICULAR ONE
PERSON WHO SAID ONE DENE OR
NAVAJO MOM SAID I SPENT EVERY
WEEK IN MY PREGNANCY GOING BACK
TO THE RESERVATION TO GET CLEAN
AIR.
I THINK THAT WAS TELLING.
>>YOU LISTEN TO OUR FAMILIES
AND AN LOOK AT COMMUNITIES FOR
IDEAS FOR WHERE THE RESEARCH
SHOULD GO.
>>THIS IS CHALLENGING BECAUSE
THERE'S MORE IMMEDIATE CLINICAL
QUESTIONS THAT I THINK COULD BE
HELPFUL TO PUT RESEARCH DOLLARS
IN.
WHEN THERE'S RESEARCH DONE AND
IF THERE'S MACRO AND
ENVIRONMENTAL THINGS THAT ARE
IMPORTANT STRESSORS, THIS IS A
HUGE AFFECT.
IT WOULD BE GOOD TO SEE RESULTS
CONFIRMED IN COHORTS AND LOOKING
AT LARGER, POPULATION BASED DATA
AND WE LOOKED AT THE LIFE STUDY
AND SAW OZONE WAS A STRONG
PREDICTOR OF EARLY PREGNANCY
LOSS.
THE AVERAGE BEING AROUND 7
WEEKS.
THERE'S UNAPPRECIATED RISKS.
WHEN WE SET STANDARDS FOR THINGS
LIKE AIR POLLUTION OR CONCERNED
ABOUT THINGS LIKE CLIMATE
CHANGE, WE'RE NOT TALKING ABOUT
PREGNANCY.
I THINK WE SHOULD BE.
WE SHOULD LOOK AT THIS
SYSTEMATICALLY AND TRYING TO
PROVIDE PROTECTION WHERE WE CAN
AS WELL THE SOCIAL ISSUES AROUND
THOSE FACTORS.
PEOPLE CAN'T MITIGATE
TEMPERATURE RISKS WHEN THEY LIVE
IN SUBSTANDARD HOUSING AND THEY
DON'T HAVE PROPER HEATING AND
POOLING AND ALL THOSE FACTORS AS
WELL.
I DON'T FLOW IF THAT'S HELPFUL
FOR YOUR RESEARCH AGENDA BUT
THOSE THE KINDS OF THINGS I SEE.
>>THANK YOU FOR HELPING REMIND
ME OF WHAT YOU SAID, THERE'S
POTENTIAL IN THE NEW ASPECTS OF
MINDFULNESS BASED INTERVENTIONS
THAT USE GROUP TELEHEALTH AND
NOT DIRECTED BY CLINICAL
PSYCHOLOGISTS BUT RATHER TRAINED
FOLKS FOR WHICH HAVE SUSTAINED
CLINICAL APPROACH COULD BE DONE
AFTER THE RESEARCH IF THE
RESEARCH IS SEQUENCEFUL.
-- SUCCESSFUL BUT I'M NOT AWARE
OF AN AFRICAN AMERICAN OR HIGH
RISK COMMUNITIES INVOLVED IN
THOSE STUDIES.
I THINK IF PEOPLE WHO HAVE
CLINICAL POPULATIONS THAT WOULD
BENEFIT IT WOULD BE COMBINED
BECAUSE SOME OF THESE PROCESSES
ARE ACTUALLY TOTALLY REMOTE
TELEHEALTH AND COULD BE COMBINED
ACROSS COMMUNITIES AND ACROSS
STATES.
THAT RESEARCH I WOULD
RECOMMENDATION EXAMINING.
>>AS WE TRY TO LINK THE MORNING
PRESENTATIONS TO THE ONES THIS
AFTERNOON, HOW IMPORTANT IT IS
TO HAVE ACCURATE DATA AND
INFORMATION ABOUT STILLBIRTH BUT
ALSO CRITICAL TO HAVE ACCURATE
ASSESSMENT OF THE CAUSE OF DEATH
IN THE ABSENCE OF THE TWO, WE'RE
BACK TO STRUGGLING, THE STRUGGLE
COMES AGAINST PUBLIC HEALTH
POLICIES AND CONVINCING PEOPLE
TO DO THE RIGHT THING BY MOTHERS
IMPACTED OVER HERE.
I'D LOVE TO HEAR THOUGHTS FROM
ANY OF THE SPEAKERS IN THE
QUESTION TO THE QUESTION ABOUT
FRAMING RESEARCH PRIORITIES IN
THE ENTIRE AREA STARTING WITH
THE RIGHT INFORMATION FOR
EXPANDING OPPORTUNITIES FOR
MINORITIES.
>>WE NEED A GOOD SOLID CASE
DEFINITION THAT'S AN IMPORTANT
STARTING POINT SO WE KNOW WE'RE
ALL TALKING ABOUT THE SAME
OUTCOME.
THE FACT THERE'S DIFFERENT
CAUSES OF STILLBIRTH.
BEING ABLE TO SEPARATE THOSE OUT
ARE IMPORTANT BUT BEING ABLE TO
DO ANALYSES THAT ARE SPECIFIC TO
WHETHER IT IS A CORD INCIDENT
AND IS THERE SOMETHING TO LEARN
ABOUT CORD INCIDENTS?
I THINK THERE IS.
RIGHT NOW IT'S ALL IN ONE GROUP
AND I THINK THERE'S A LOT TO BE
GAINED BY BEING ABLE TO LOOK AT
SUBSETS OF STILLBIRTH AS WELL.
>>CAN I RESPOND TO THAT
EXCELLENT COMMENT.
I THINK THAT'S SO IMPORTANT AND
I THINK THE RESEARCHERS WHO HAVE
BEEN IN THE FIELD AND HAVE BEEN
DOING AS MUCH AS OF WORKUP AS
POSSIBLE INCLUDING MATERNAL
INTERVIEWS.
I THINK THAT'S IMPORTANT AND WE
TALKED ABOUT IT THIS MORNING.
I THINK IF WE CAN GET TOGETHER
AND COLLABORATE AND COMBINE THE
INFORMATION THAT WOULD BE
EXTREMELY HELPFUL BECAUSE WE
HEARD ABOUT WONDERFUL WORK BEING
DONE IN DIFFERENT PARTS OF THE
COUNTRY.
USING THE INFORMATION WE HAVE
FROM THOSE STUDIES UNTIL WE CAN
GET BETTER DATA FROM THE FETAL
DEATH CERTIFICATE.
BUT THE PROTOCOLS THAT WERE
PRESENTED THIS MORNING WERE VERY
SIMILAR.
THEY WERE CHART EXTRACTION,
MATERNAL INTERVIEW.
SOME HAD SPECIMEN COLLECTION.
WOULD IT BE POSSIBLE TO DO
BASICALLY AN INDIVIDUAL
META-ANALYSIS.
GETTING THE INDIVIDUAL
INFORMATION AND I'M SURE PARENTS
WHO PARTICIPATE IN THE STUDIES
WOULD BE WILLING TO PROVIDE MORE
INFORMATION BECAUSE IF YOU LOOK
AT LARGER NUMBER, QUESTIONS WILL
COME UP.
JUST THROWING IT OUT AS A
CHALLENGE FOR ALL THE GROUPS
DOING THIS TYPE OF WORK.
>>AS FAR AS THE RESEARCH AND
DR. DONALD DUDLEY, GO AHEAD.
>>AS FAR AS RESEARCH IS
CONCERNED, I'D LIKE TO SEE SOME
SORT OF IMPLEMENTATION RESEARCH
ON WAYS TO LINK ELECTRONIC
MEDICAL RECORDS TO THE FETAL
DEATH CERTIFICATE SO THAT IT
TAKES ONUS ON THE FRONT END OF
THOSE TRYING TO SUBMIT THESE
BECAUSE IT MAY STANDARDIZE A LOT
OF THE REPORTING AND MAY IMPROVE
THE NUMBERS AS WELL.
SECONDLY TO DEVELOP BEST
PRACTICES FOR CONSENTING
FAMILIES, WOMEN AND FAMILIES FOR
AUTOPSY.
WHAT'S THE BEST WAY TO INFORM
PATIENTS OF OPTIONS IN A
SENSITIVE WAY THAT'S CULTURALLY
APPROPRIATE AS WELL?
>>GIVEN THERE ARE 20,000 STILL
BIRTHS AT LEAST THE ONES THAT
ARE RECORDED IN THE UNITED
STATES, WOULD THERE BE -- IS
THERE AN OPPORTUNITY TO CREATE A
NATIONAL BIO REPOSITORY.
THAT'S THE FIRST QUESTION?
SECOND, IN CASES WHERE THE CAUSE
OF DEATH IS NOT READILY
APPARENT, WOULD THERE BE VALUE
IN GENOME SEQUENCING IN THE
FETUS' DEATHS THAT I IN UTERO.
>>I'LL LET UMA ASK.
AND HIS REQUIRES ENORMOUS AMOUNT
OF SPACE AND YOU HAVE TO SAY
WHAT'S THE PURPOSE OF DOING
THIS.
YOU HAVE TO BE INTENTIONAL AND
THOUGHTFUL IN HOW YOU CREATE
THIS AND U MA YOU WANT TO
ADDRESS THE GENETIC QUESTION.
>>I BELIEVE DECEMBER 9 THERE'LL
BE A SPEAKER BUT BRIEFLY, THE
STILLBIRTH COLLABORATIVE
RESEARCH NETWORK WE LOOKED AT
USING TECHNOLOGY CALLED
MICROARRAY INSTEAD OF STANDARD
KARYOTYPE AND WE WERE ABLE TO
INCREASE THE NUMBER OF GENOMIC
CAUSES.
FAMILIES WANT AN UNDERSTANDING
OF WHAT THE CAUSE IS AND THERE'S
NETWORK SAMPLES LOOKING AT WHOLE
EXOME SEQUENCING.
DIGGING DEEPER DOWN AND BECAUSE
OF THAT RESEARCH THEY FOUND
OTHER GENETIC CHANGES ASSOCIATED
WITH STILLBIRTH.
BASED ON THE STUDIES, 18% OF ALL
STILLBIRTHS HAVE A LIKELY
GENETIC CAUSE WHICH IS IMPORTANT
FOR FAMILIES TO KNOW ABOUT AND
INFLUENCES MANAGEMENT OF THE
NEXT PREGNANCY AND ICHD IS
FUNDING A STUDY WITH WHOLE
GENOMIC SEQUENCING AND WHOLE
SEQUENCING OF THE DNA FOR TRIO.
FOR BOTH PARENTS WHO'VE HAD
STILLBIRTH TO UNDERSTAND GENES
CRITICAL TO DEVELOPMENT AND SO I
THINK IT WILL BE VERY
ILLUMINATING.
>>THANK YOU.
THE COST OF WHOLE GENOME
SEQUENCING NOW BELOW 1,000
DOLLARS PER TEST IING THIS IS
WITHIN REACH.
ONE WOULDN'T HAVE TO DO IT FOR
ALL THE STILLBIRTH BUT EVEN IF
THERE WERE A CONSORTIUM THAT
COULD DIG DEEPER INTO CAUSES OF
STILLBIRTH THAT WOULD BE
ENORMOUSLY BENEFICIAL.
MORE TO COME AND THE NEXT
SESSION ON CAUSES OF
STILLBIRTHS.
>>TO GET THE MOST OUT OF THAT
IS IT IMPORTANT TO HAVE WHOLE
GENOME SEQUENCING FOR VERY PRE
TERM BIRTHS OR SIT SUFFICIENT TO
DO IT FOR STILLBIRTHS FOR
THEMSELVES?
>>THAT'S A GREAT QUESTION,
CAROL.
SO MY UNDERSTANDING OF THIS
GRANT IS THEY'RE COMPARING IT TO
LARGE DATABASES THEY HAVE
ALREADY AVAILABLE F.
SO BASICALLY IT'S A MULTI-SITE
COLLABORATION.
I THINK BRIGHAM AND WOMEN'S,
BROAD INSTITUTE AND HAVE
DATABASES TO COMPARE IT TO.
>>I HAVE ONE MORE QUESTION THAT
CAME THROUGH THE CHAT BEFORE WE
APPROACHING OUR CLOSING AND THIS
IS FOR DR. MENDOLA, SOMEONE IN
CALIFORNIA WAS ASKING FOR
INTERVENTION FOR CLEANER INDOOR
AIR AND DO YOU THINK COULD
IMPROVE PREGNANCY OUTCOME.
BASED ON YOUR ANSWER BEFORE I
HAVE AN IDEA.
PLEASE, IF YOU'D LIKE TO ADDRESS
IT AND IF YOU LOOK AT THE
MEASUREMENT IN IMPROVING THE
PRESENTATION OR OTHER COULD
TRANSLATE TO IMPROVING PREGNANCY
OUTCOME.
>>THE DATA I SHOWED IS ALL
AMBIENT AIR.
IT'S ALL OUTDOOR AREA.
OUTDOOR TEMPERATURE.
NOT THE TEMPERATURE IN THE HOUSE
OR AIR POLLUTION IN THE HOUSE.
I HAVE A COLLEAGUE IS THAT LOOKS
AT IMPROVING PREGNANCY OUTCOMES
WITH IMPROVING AIR FILTRATION
AND IT CERTAINLY DOES SEEM TO
LOWER SOME EXPOSURES IN THE HOME
BUT NONE OF THOSE STUDIES ARE
REALLY BIG ENOUGH TO LOOK --
DR. LEONARD, WONDERFUL.
SO NONE OF THOSE STUDIES ARE
REALLY LARGER ENOUGH TO BE ABLE
TO LOOK AT SOMETHING LIKE
STILLBIRTH FOR EXAMPLE.
SO TO SAY, WELL, YOU'VE GOT A
SHAM FILTER OR WORKING FILTER IN
THE HOME, DOES IT REALLY MAKE A
DIFFERENCE.
IS THAT WOULD BE AN INTERESTING
THING TO LOOK AT.
THANKS FOR THE QUESTION,
STEPHANIE.
IF ANYONE WOULD LIKE TO ADD
ANYTHING?
>>MONICA, ARE YOU ABLE TO LOOK
AT THE QUESTIONS IN THE CHAT BOX
TO MAKE SURE WE HAVE MISSED
ANYTHING?
>>WE HAVE LOOKED.
>>THERE'S ONE MORE MESSAGE.
IT CAME THROUGH IN AN E-MAIL.
AND THIS IS FROM COUNTRIES
WORLDWIDE THE AVERAGE RATE
ADOPTION OF STILLBIRTHS.
WE'RE RANKING LOWER IT LOOKS
LIKE IN OUR CAPABILITY OF
REDUCED RISK OF STILLBIRTH.
THE QUESTION IS CAN ANYONE
ADDRESS WHY UNITED STATES HAS
BEEN BEHIND SOME OTHER COUNTRIES
LIKE ENGLAND, NETHERLANDS OR
OTHERS.
>>IS THE RACIAL DISPARITY.
WE HAVE TO GET TO THE ROOT OF
WHY BLACK WOMEN ARE THREE TIMES
THE RISK OF STILLBIRTH COMPARED
TO WHITE WOMEN AND OTHER
MINORITY GROUPS AND UNDER SERVED
PATIENT POPULATIONS AND SOME OF
THE RESEARCH WE'RE HEARING ABOUT
LISTENING TO THE COMMUNITY AND
ACCESS TO CARE, QUALITY OF CARE,
EMPOWERING OUR PREGNANT
INDIVIDUALS TO ASK QUESTIONS
ABOUT THEIR CARE SO WE HEARD
ABOUT THAT BUT THEN WE ALSO
HEARD ABOUT AUDIT SO THAT'S VERY
IMPORTANT THIS MORNING THAT WE
DO NEED TO UNDERSTAND AN
EVALUATION OF WHY THIS IS
HAPPENING AND WE CANNOT PREVENT
WHAT WE DON'T UNDERSTAND.
THERE'S A LOT THAT NEEDS TO BE
DONE.
WE HEARD A WIDE VARIETY OF AREAS
THAT NEED TO BE ADDRESSED.
I'D LOVE FOR THE REST OF THE
PANEL MEMBERS TO WEIGH IN ON THE
QUESTION.
>>I WOULD ADD YOU HAVE TO MAKE
APPLES AND ORANGES AND COMPARE
THEM AND MANY START COMPARING AT
26 WEEKS AND WE COUNT AT 20
WEEKS.
THERE'S A VERY LARGE PROPORTION
OF STILLBIRTHS THAT OCCUR
BETWEEN 20 AND 24 WEEKS.
SOME DEFINITIONS OF FETAL DEATH
ARE NOT AS STRICT AS OUR
DEFINITIONS.
I'M NOT TRYING TO EXCUSE OUR
HIGHER RATE BUT I DO THINK THERE
ARE SOME REASONS THAT BELOW THE
SURFACE, IF YOU WILL, FOR OUR
RANGING.
RANKING.
>>THERE'S STILL A DISPARITY IT
STILLBIRTHS ABOVE 28 WEEKS.
>>THIS IS SOMETHING WE CAN DIG
DEEPER ON THE QUESTIONS.
DR. JAIN WERE REACHING THE END
OF OUR DISCUSSION.
I WOULD LIKE TO THANK THE PANEL
AND GIVE IT TO DR. JAIN AND
DR. REDDY FOR A FINAL WRAP-UP.
>>THANK YOU, DR. LONGO.
THANK YOU, DR. BIANCHI FOR THIS
OPPORTUNITY.
IT'S ENRICHING TO HEAR THE
EXPERTS.
THE WEIGHT OF THE PROBLEM IS
SINKING IN.
IT'S SOMETHING WE ALL GRAPPLED
WITH BUT WHEN YOU LOOK AT THE
DATA IT'S A DAUNTING TASK TO
DEAL WITH.
OUR NEXT WORKING GROUP MEETING
IS ON DECEMBER 9 FROM 11:00 A.M.
TO 4:00 P.M.
THE REQUEST FOR INFORMATION
INFORMATION IS STILL OUT THERE
AND SOME DISCUSSION LEADS INTO
MORE IN DEPTH DISCUSSION ABOUT
STRATEGIES THAT WILL ULTIMATELY
LEAD TO CLEARER ANSWERS AROUND
STILLBIRTH PREVENTION.
I WANT TO EMPHASIZE A POINT THAT
DR. BIANCHI MADE IN THE MORNING
THAT THERE WILL BE A VIRTUAL
PUBLIC LISTENING SESSION JANUARY
5 EARLY IN THE NEW YEAR FROM
3:00 P.M. TO 5:00 P.M.
MORE DETAILS WILL BE COMING YOUR
WAY BUT I WANT TO MAKE SURE
EVERYONE FEELS THEY'VE HAD AN
OPPORTUNITY TO WEIGH IN AND GIVE
US THEIR FEEDBACK BOTH THROUGH
THE Q&A SESSIONS THAT
ACCOMPANIED THE PRESENTATIONS
AND ALSO IN THE JANUARY FIFTH
SESSION THAT WILL BE OPEN TO
ALL.
IN OUR FINAL SESSION, WE WILL BE
TALKING ABOUT TWO OTHER
IMPORTANT AREAS OF STILL BIRTH
PREVENTION.
THE FIRST ONE PSYCHOLOGICAL
IMPACT AND TREATMENT FOR MOTHERS
FOLLOWING STILLBIRTH AND THIN
SECONDLY DEALING WITH KNOWN RISK
FACTORS FOR STILLBIRTH I HOPE
WILL LEAD TO A PANEL DISCUSSION
AROUND THE UNKNOWN RISK FACTORS
FOR STILLBIRTH AND HOW WE GET TO
THOSE AS WELL.
WITH THAT, DIANE WOULD YOU LIKE
TO SAY FINAL WORDS?
>>THANK YOU, JAIN AND REDDY AND
LONGO FOR MODERATING THE
SESSIONS.
I'D LIKE TO THANK THE SPEAKERS,
INCLUDING THE AFTERNOON SPEAKERS
FOR GIVING HELPFUL AND
INFORMATIVE TALKS.
I WANTED TO MENTION TWO
OPPORTUNITIES FOR RESEARCH.
FOR THOSE WHO ARE ACADEMICS
LISTENING, NICHD IS A
PARTICIPANT IN THE CLIMATE
CHANGE AND HUMAN HEALTH
INITIATIVE THAT IS NIH WIDE.
WE ARE ALREADY CONTRIBUTING
MONEY TO THE ENVIRONMENTAL
HEALTH SCIENCES.
WE'RE HOPING THE PRESIDENT'S
BUDGET WILL BE INCORPORATED INTO
THE CONGRESS'S BUDGET WHICH
WOULD GIVE SPECIFIC FUNDS TO
LOOK AT THE IMPACT PARTICULARLY
OF THE TEMPERATURE ISSUES
DR. MENDOLA TALKED ABOUT.
I'M ON THE EXECUTIVE COMMITTEE
PRIMARILY TO REPRESENT OUR
POPULATIONS INCLUDING PREGNANT
PEOPLE, CHILDREN, PEOPLE WITH S
AND TO REMIND EVERYONE THAT
THERE ARE CONSEQUENCES OF
CLIMATE CHANGE.
THE OTHER THING I WANTED TO
MENTION THE CONSORTIUM ON SAFE
LABOR.
WE HAVE A RESOURCE CALLED DASH,
THE DATA AND SPECIMEN HUB WHICH
INCORPORATES DEIDENTIFIED
CLINICAL DATA FROM MANY NICHD
STUDIES DR. REDDY WAS ALREADY ON
BUT THE CONSORTIUM ON SAFE LABOR
IS THE MOST POPULAR DOWNLOADED
STUDY IN THE DASH DATABASE AND
RESULTS IN MULTIPLE SECONDARY
PUBLICATIONS.
I LIKE TO ALWAYS MENTION DASH AS
A RESOURCE BECAUSE IT'S A GREAT
OPPORTUNITY FOR PEOPLE STARTING
IN RESEARCH WHO CAN DEVELOP A
HYPOTHESIS YOUTH LOAD THE DATA
AND TEST THE HYPOTHESIS AND
THERE'S MANY OTHER PUBLICATIONS
AS WELL.
THE OTHER THING I WANTED TO ASK
DR. LONGO ABOUT ARE THE
QUESTIONS TYPED IN THE LIVE
DISCUSSION SITE HOW WILL THEY BE
ANSWERED?
PERSONALLY OR HOW WILL THEY BE
INCORPORATED IN THE DISCUSSION
TODAY?
>>THE ONES WE WERE NOT ABLE TO
ANSWER WE'LL GO THROUGH A BOX.
>>THEY'RE NOT REALLY LIVE.
PEOPLE CAN TYPE IN THEIR
QUESTIONS OR COMMENTS LIVE BUT
THEY WILL BE ACKNOWLEDGED AND
WILL GET A RESPONSE.
>>YES.
>>OKAY.
THANK YOU SO MUCH AND THANK YOU
TO EVERYONE FOR PARTICIPATING IN
THIS EXTREMELY IMPORTANT
DISCUSSION.
WE LOOK FORWARD TO SEEING YOU ON
DECEMBER 9.
>>THANK YOU, EVERYONE.
IT'S 3:00.
HAVE A WONDERFUL THANKSGIVING.
AND SAFE TRAVELS TO ALL
TRAVELLING.
TAKE CARE.
>>THANK YOU.