GOOD MORNING, GOOD AFTERNOON,
AND GOOD EVENING TO ALL OF YOU
JOINING US FROM AROUND THE
WORLD.
WELCOME TO DAY 2 OF OUR
WORKSHOP ON GLOBAL
IMPLEMENTATION SCIENCES TO
"GLOBAL IMPLEMENTATION SCIENCE
APPROACHES TO IMPROVE MATERNAL
HEART, LUNG, BLOOD, AND SLEEP
HEALTH OUTCOMES- DAY 2"
I'M VERONICA TONWE.
I'M WITH THE CENTER FOR
TRANSLATION RESEARCH AND
IMPLEMENTATION.
IT'S MY PLEASURE TO KICKOFF
TODAY'S SESSION.
YESTERDAY WAS A DAY FULL OF
ENGAGING DISCUSSIONS AND
INSIGHTFUL PRESENTATIONS. WE
COVERED A BROAD RANGE OF TOPICS
FROM CARDIOVASCULAR HEALTH, TO
BLOOD DISORDERS AND DELVED INTO
COMMUNITY IMPLEMENTATION
PROGRAMS MAKING SIGNIFICANT
STRIDES IN MATERNAL HEALTH.
THE PARTICIPATION IN THE
DYNAMIC EXCHANGE OF IDEAS WERE
TRULY INSPIRING.
BUT AS WE MOVE INTO TODAY WE
CONTINUE OUR JOURNEY TO EXPLORE
INNOVATIVE SOLUTIONS AND
IMPLEMENTATION SCIENCE
STRATEGIES THAT CAN ADDRESS
MATERNAL HEALTH CRISIS BOTH IN
THE U.S. AND GLOBALLY.
OUR OBJECTIVES REMAIN FOCUSED
TO EXPLORE THE MATERNAL HEALTH
CRISIS IN THE CONTEXT OF HEALTH
DISPARITIES AND HEART, LUNG,
BLOOD AND SLEEP DISORDERS THAT
AFFECT MATERNAL MORTALITY AND
MORBIDITY.
TO USE INFORMATION TO INFORM
PRACTICES TO DISCUSS CHALLENGES
AND OPPORTUNITIES FOR ADVANCE
AND IMPLEMENTATION RESEARCH,
TRAINING AND CAPACITY BUILDING
AND MATERNAL HEALTH.
TO EMPHASIZE THE IMPORTANCE OF
COMMUNITY ENGAGEMENT IN THE
MATERNAL HEALTH RESEARCH
PROGRAMS AND SHARING OF
INSIGHTS BETWEEN GLOBAL AND
DOMESTIC SETTINGS TO FOSTER
INNOVATIVE SOLUTIONS AND
CO-LEARNING OPPORTUNITIES.
IN ORDER TO MAINTAIN OUR GOAL
OF CUTTING EDGE FINDING AND
BEST PRACTICES, IDENTIFYING
KNOWLEDGE GAPS AND CRITICAL
UNMET NEEDS WHILE UNCOVERING
OPPORTUNITIES FOR IMPROVING
MATERNAL HEART, LUNG, BLOOD AND
SLEEP OUTCOMES USING
IMPLEMENTATION SIGNS BOTH
DOMESTICALLY AND GLOBALLY.
TODAY'S AGENDA PROMISES TO BE
JUST AS ENRICHING.
WE WILL START WITH KEYNOTE
PRESENTATION FROM DR. MARY DIXON
.
THESE ARE TO ENCOURAGE
COLLABORATION ACROSS
DISCIPLINES AND BORDERS. BEFORE
WE DIVE INTO OUR KEYNOTE, I
WOULD LIKE TO REMIND YOU ALL TO
STAY ENGAGED THROUGH THE Q&A
BOX AND COMMENTS IN THE CHAT
SECTION.
OUR MODERATORS WILL BE ACTIVELY
MODERATING THE CHAT AND THE QA
AND WILL BRING YOUR COMMENTS
AND QUESTIONS TO THE LIVE
DISCUSSION.
THANK YOU FOR YOUR CONTINUED
PARTICIPATION TO IMPROVING
MATERNAL HEALTH OUTCOMES.
I WILL TURN IT OVER TO DR. MARY
MASTERSON WHO WILL INTRODUCE
OUR KEYNOTE SPEAKER.
LET'S HAVE ANOTHER PRODUCTIVE
AND INSPIRING DAY.
OVER TO YOU, DR. MASTERSON.
>> DR. MASTERSON: HELLO, IT'S
MY PLEASURE TO INTRODUCE OUR
KEYNOTE SPEAKER FOR DAY TWO.
DR. KAREN WOODS. IN THE
INTEREST OF TIME, I WILL NOT GO
OVER HER BIO, PLEASE GO OVER
THE DOCUMENT PRESENTED
YESTERDAY.
STRATEGIES WE CAN LEVERAGE TO
SUPPORT HEALTHCARE IMPROVEMENT.
WE WILL HOLD AN OPEN DISCUSSION
AND BASED OFF THE ENGAGEMENT WE
SAW YESTERDAY I LOOK FORWARD TO
ADDRESSING YOUR QUESTIONS TO
DR. DIXIT WOODS AND CHARGE US
TO THINK CRITICALLY ABOUT
STRATEGIES TO IMPROVE MATERNAL
HEALTH OUTCOMES.
WITH THAT, TAKE IT AWAY, DR.
DIXIT WOODS.
>> DR. WOODS: THANK YOU, DR.
MASTERSON.
I HOPE SOMEONE CAN SEE MY
SLIDES OKAY.
>> WE ARE STILL SEEING IT NOT
IN PRESENTATION VIEW.
>> GO TO WHERE IT SAYS DISPLAY
SETTINGS AND TOGGLE LEFT.
CLICK ON DISPLAY SETTINGS. AT
THE TOP OF THE POWERPOINT.
TOP MIDDLE.
>> YEP, IT'S NOT THERE.
>> LOOK AT YOUR SECOND MONITOR,
IS IT ON THAT SCREEN?
>> IT'S VERY LIKELY SHE IS
SEEING THE PRESENTATION MODE
AND WE ARE SEEING THE VIEWER.
SO CAN I.T. HELP US WITH THAT.
>>
>> Mary Dixon-Woods: WE HAVE A
PARTICULAR INTEREST IN
MATERNITY CARE.
ONE THING WE ARE TRYING TO DO
IS BUILD A LEARNING HEALTH
SYSTEM.
WE THINK THAT HAS THREE
COMPONENTS OR CAPABILITIES.
FIRST TO CHARACTERIZE AND
UNDERSTAND PROBLEMS.
SECOND THE ABILITY TO DEVELOP A
POSSIBLE SOLUTIONS AND TO
EVALUATE THEM.
SO THOSE THREE CAPABILITIES
WILL GUIDE MUCH OF WHAT I
PRESENT TO YOU TODAY, BECAUSE
THEY ARE ALL HIGHLY RELEVANT TO
IMPLEMENTATION.
I THINK THE BUSINESS OF
UNDERSTANDING THE PROBLEM IS A
KEY STEP.
BUT IT'S ONE THAT IS VERY OFTEN
NEGLECTED AS WE RUSH TO
SOLUTIONS.
ONE OF OUR CHALLENGES IS THAT
PROBLEMS, AS WE IMAGINE THEM,
ARE NOT THE SAME AS PROBLEMS AS
THEY REALLY ARE.
THIS DELIGHTFUL CREATURE IS A
CARVING IN A CHURCH ABOUT 30
MILES FROM MY HOME.
YOU MAY WISH TO PUT IN THE CHAT
WHAT KIND OF ANIMAL YOU THINK
THE MEDIEVAL ARTIST WAS TRYING
TO DEPICT.
WHAT I CAN PROBABLY GUARANTY IT
WILL BE DIFFICULT TO GUESS THE
MANL SHOWN HERE.
ANIMAL SHOWN HERE.
IT IS IN FACT ELEPHANT.
THE ARTIST HAD NEVER SEEN ANEL
HAVEN'T SO WHAT THEY DEPICT, IT
LOOKS VERY UNLIKE WHAT WE KNOW
TO BE REALITY FNLT
WHEN WE DON'T REALLY UNDERSTAND
THE PROBLEM WE IMAGINE
SOMETHING WHAT IS NOT WHAT IT
REALLY IS.
THE REAL PROBLEM IS THE
IMPROVEMENT ATTENTION GETS
MISDIRECTED.
THIS HAPPENS ALL THE TIME.
ONE EXAMPLE IN MATERNITY
CONTEXT IS CONCEPT OF
ELECTRONIC FETAL MONITORING, A
LONG HISTORY SHOWING ITS VERY
DIFFICULT TO GET IT RIDE.
AND FOCUSING EFFORT ON TRAINING
PEOPLE BETTER AND HOW TO
INTERPRET THE TRACINGS. IT
HASN'T REALLY IMPROVED ANYTHING.
WHEN YOU USE SOCIAL SCIENCE
TECHNIQUES AND HUMAN PRAKTORS
ANALYSIS, YOU GET TO A VERY
DIFFERENT UNDERSTANDING OF THE
PROBLEM, AND IT MEANS YOU CAN
GUIDE YOUR IMPROVEMENT EFFORTS
MUCH MORE EFFECTIVELY.
THE GREAT DOCTOR, IT'S REALLY
IMPORTANT TO RECOGNIZE HOW
STRUCTURES AND PROCESSES
CONTRIBUTE TO OUTCOMES.
SOMETIMES WE SEE THE EMPHASIS
GOING IN ONE DIRECTION RATHER
THAN ANOTHER.
IT'S ABSOLUTELY THE CASE
STRUCTURE IS CRITICAL TO
IMPROVING MATERNITY CARE.
AND THAT'S GOING TO ABOUT
THINGS LIKE FACILITIES,
EQUIPMENT, PERSONNEL.
WE ALL KNOW THIS.
BUT THAT STUFF HAS TO BE RIGHT
OR NOTHING IS RIGHT.
BUT EQUALLY, IT IS TRUE THAT
NOT ALL VARIABILITY CAN BE
EXPLAINED BY VARIABILITY AND
STRUCTURE.
IF WE LOOK AT PROCESSES WE CAN
SEE THESE HELP TO EXPLAIN MUCH
OF THE VARIABILITY WE SEE AS
WELL.
THIS HAS BEEN DEMONSTRATED VERY
EFFECTIVELY FOR EXAMPLE IN THE
CONTEXT OF SURGERY.
EVEN WHEN YOU HAVE
ORGANIZATIONS AND UNIT THAT'S
APPEAR TO BE VERY SIMILAR ON
THE BASIS OF RESOURCES,
ENVIRONMENTS AND POPULATIONS
THEY MAY STILL HAVE VERY
DIFFERENT OUTCOMES.
THOSE DIFFERENCES IN OUTCOMES
ARE NOT EXPLAINED BY
DIFFERENCES IN COMPLICATIONS.
RATES OF COMPLICATIONS TEND TO
BE LARGELY SIMILAR BUT BY
ABILITY TO RESCUE PATIENTS FROM
COMPLICATIONS.
SO THAT ABILITY TO RESCUE IS
LINKED VERY SIGNIFICANTLY TO
PROCESSES AND IN PARTICULAR TO
THINGS LIKE TEAMWORK,
COMMUNICATION AND CULTURE.
IF WE ARE GOING TO GET
HEALTHCARE RIGHT WE HAVE TO
UNDERSTAND ORGANIZATIONAL AND
INTERPERSONAL DYNAMICS.
WE HAVE TO UNDERSTAND PROCESSES
AND HOW ALL OF THIS WORKS
TOGETHER JUST AS MUCH AS WE
UNDERSTAND STRUCTURES. I THINK
WE UNDER USE FORMAL MEASURES,
HIGHLY STRUCTURED WAY OF
GETTING TO THE ISSUES. THIS IS
AN UNDER CITED STUDY, STUDYING
WHAT NURSES WERE DOING AND
SHOWED THEY ARE ESSENTIALLY,
THEY LOS ABOUT 12% OF THEIR
TIME TO WHAT ARE CALLED
OPERATIONAL FAILURE AND
INTERRUPTIONS BECAUSE THEY ARE
CONSTANTLY HAVING TO WORK IN
SYSTEM THAT'S ARE NOT OPTIMIZED
FOR WORK THEY ARE TRYING TO DO.
SO THEY SPEND A LOT OF TIME
HUNTING FOR INFORMATION, GOING
TO THE CUPBOARD TO FIND THE
EQUIPMENT ISN'T THERE, OR CLEAN
OR READY.
WHEN WE COMPLETED THAT STUDY IN
THE PRIMARY CARE CONTEXT IN THE
U.K., THEY SPEND TIME DEALING
WITH OPERATIONAL FAILURES AND
INTERRUPTIONS. THESE ARE
SYSTEMS NOT OPTIMIZED FOR THE
WORK WE ARE ASKING PEOPLE TO DO.
MOREOVER, WHAT PEOPLE ARE ASKED
TO DO OFTEN EXCEEDS THE TIME
THEY HAVE AVAILABLE.
IT WOULD TAKE 27 HOURS A DAY
FOR A PHYSICIAN TO DELIVER
FULLY COMPLIANT GUIDELINE CARE.
NO ONE HAS 27 HOURS A DAY.
WE COULD ALL USE METHODS
ADOPTED FROM OTHER INDUSTRIES
TO ANALYZE WORK SYSTEMS.
AND AGAIN, I THINK THIS IS
SOMETHING THAT ISN'T DONE
ENOUGH.
KEN CATCHPOLE HAS DONE THIS
WORK IN NORTH CAROLINA.
HE LOOKS AT STERILE PROCESSING
OF EQUIPMENT FOR SURGERY, THIS
IS FRAUGHT WITH COMPLEXITY, AND
HAS MULTIPLE POINTS OF
VULNERABILITY.
BUT UNLESS YOU UNDERSTAND THIS
AND YOU MAP IT VERY
SYSTEMATICALLY, IT'S VERY EASY
TO MISDIRECT YOUR ATTENTION IN
TERMS OF IMPROVING.
I ALSO THINK WE FOCUS ON
CLINICAL SYSTEMS, BUT TO THE
EXCLUSION OF THE WIDER CONTEXT
IN WHICH CARE IS PROVIDED.
IN PARTICULAR, TEND TO UNDER
VALUE COMPETENT MANAGEMENT,
INCLUDING MANAGEMENT OF PEOPLE
AND MANAGEMENT OF OPERATIONS
AND FACILITIES.
SO UNDERSTANDING THE PROBLEM IS
ABSOLUTELY KEY.
THEN WE HAVE TO GET TO WHAT ARE
THE SOLUTIONS GOING TO BE.
IT'S NOT LIKE THERE'S ANY
SHORTAGE OF RECOMMENDATIONS FOR
IMPROVING MATERNITY CARE.
IN THE U.K. WE ESTIMATE IN ONE
YEAR THERE WERE 1250 DIFFERENT
RECOMMENDATIONS WHAT TO DO TO
IMPROVE MATERNITY CARE.
BUT WHAT WE LOOK IS EVIDENCE
BASED FOR MANY RECOMMENDATIONS.
PRIORITIZATION, COORDINATION,
HIGH QUALITY DESIGN, TESTING
AND EVALUATION AND CAPABILITY
AND CAPACITY.
SO I THINK YOU ARE THE SAME IN
THE U.S. FROM MY VISITS TO SEE
YOU.
WE HAVE A PROBLEM WE CALL
PRIORITY PICKETS, THERE ARE SO
MANY PRIORITIES, INCENTIVES
THAT HAVE TO BE MET THAT IT IS
DIFFICULT FOR ORGANIZATIONS AND
TEAMS TO IDENTIFY REALLY
CLEARLY.
THEIR OWN GOALS COULD BE
DISPLACED BY THESE EXTERNALLY
IMPOSED ONE.
TOO OFTEN THE ANSWER SEEMS TO
BE WE WILL JUST GROW MORE HANDS
AND WE WILL BE OKAY, THAT'S NOT
A GOOD SOLUTION.
IF WE USE CO-DESIGN METHODS FOR
EXAMPLE, CONSENSUS BUILDING
THEN YOU CAN ACTUALLY HELP WITH
THE PRIORITIZATION.
DONE IN THE PAST TO GET THEM TO
RANK WHAT WERE THEIR TOP
PRIORITIES FOR IMPROVEMENT.
ONCE YOU FIGURE OUT WHAT YOU
NEED TO IMPROVE, THIS IS KIND
OF BASIC AGAIN, BUT OFTEN GETS
NEGLECTED, THE SOLUTIONS NEED
TO BE GOOD ONES BUT WHAT WE SEE
IS THEY ARE POOR QUALITY, NOT
BASED IN EVIDENCE AND NOT
INVOLVED PATIENTS OR STAFF, IN
DESIGN, IMPLEMENTATION OR
EVALUATION.
AND THIS IS PARTICULARLY THE
CASE WHEN YOU LOOK AT ROOT
CAUSE ANALYSES AND THE
RECOMMENDATIONS THAT ARISE FOR
THOSE IMPROVEMENT AFTER
INCIDENTS BUT IT'S TRUE FOR
MANY APPARENT SOLUTIONS IN
HEALTHCARE, MATERNITY CARE,
MORE GENERALLY.
WE ACTUALLY END UP WITH A
TRIPLE THREAT IN TERMS OF
SOLUTION GENERATION.
WE END UP WITH PROBLEMS OF
RESEARCH WASTE, DESIGN WASTE
AND IMPLEMENTATION AND
IMPROVEMENT WASTE.
WE DO HAVE THE PROBLEM, THERE'S
JUST TOO MUCH POOR QUALITY
RESEARCH.
IT'S NEVER GOING TO BE
IMPLEMENTED AND IT ACTUALLY
JUST DOESN'T DESERVE TO BE.
SO THIS ARISES IN PART BECAUSE
INTERVENTIONS AS IMAGINED ARE
NOT REALLY INTERVENTIONS, AS
THEY OPERATE IN PRACTICE.
WE HAVE ANOTHER DELIGHTFUL
MEDIEVAL ANIMAL HERE.
AGAIN, YOU CAN PUT YOUR GUESSES
INTO THE CHAT AS TO WHAT YOU
DHI IT IS.
-THINK IT IS.
YOU MAY BE SURPRISED TO LEARN
THIS IS A TIGER.
BUT AGAIN, WHAT WE SEE IS
THERE'S A HUGE GAP THAOEN WHAT
HOW PEOPLE THINK SOMETHING WILL
WORK AND HOW IT DOES IN REALITY.
WE ARE IN HEALTHCARE CURRENTLY
A WASH WITH CLINICAL PREDICTION
MODELS CLAIMING TO DO ALL KINDS
OF THINGS TO IDENTIFY THE
PATIENT WHO IS GOING TO
DETERIORATE OR DEVELOP A
DISEASE AND WE ALSO HAVE
GUIDANCE HOW TO IMPROVE THE
REPORTING OF CLINICAL
PREDICTION MODELS.
BUT MUCH OF THE FIELD IS
DOMINATED BY HYPE OR OVER
OPTIMISM OR CLAIMS HOW WELL
CLINICAL PREDICTION MODELS ARE
GOING TO WORK.
THE REPORT IS OFTEN VERY POOR.
THERE ARE MULTIPLE PROBLEMS
WITH STUDIES INCLUDING VERY
SIGNIFICANT ISSUES WITH BIAS,
WEAK DESIGNS AND STUDY CONDUCT,
VERY HIGH RISK OF SCIENTIFIC
BIAS AS WELL AS BIAS AGAINST
PARTICULAR POPULATION GROUPS.
SOMETHING SIMILAR AS THE UPGAR
SCORE FOR EXAMPLE,
SYSTEMATICALLY BIASED AGAINST
BABIES WITH DARKER SKIN.
WE ARE BECOMING MORE CONSCIOUS
OF THIS, THANKS TO THE GREAT
WORK THAT'S BEEN DONE IN THE
U.S. RECOGNIZING THE EXTENT
THESE AFFECT TECHNOLOGY AND
ASSESSMENTSING.
THEY ALSO AFFECT MODELS OF
CARE, BASED ON THE ASSUMPTION
THAT IT WILL WORK FOR EVERYONE
BUT IT MACIS STEM MATICALLY EX
KLAOUZ OR DISADVANTAGE OR BE
BIASED AGAINST PARTICULAR
POPULATION GROUPS.
WHAT WE DO KNOW IS MANY OF THE
CLINICAL PREDICTION MODELS ARE
UNFIT FOR PURPOSE.
IF WE LOOK AT COVID-19 THERE
WERE OVER 600 PROGNOSTIC
PREDICTION MODELS PUBLISHED IN
THE BMJ BUT IT WAS ILL-INFORMED
AND DISJOINTED.
IF WE LOOK AT PSYCHIATRY WE SEE
EXACTLY THE SAME PROBLEM.
VERY POOR QUALITY TOOLS AND
MOST OF THEM NEVER ACTUALLY
APPEAR IN PRACTICE.
SO VERY, VERY FEW IMPLEMENTING
THESE MODELS RESULT IN ANY
IMPROVEMENTS IN PATIENTS.
WE HAVE AN ISSUE WITH THE
RESEARCH NOT BEING GOOD ENOUGH
ESSENTIALLY FOR IMPLEMENTATION
BUT THEN WE HAVE AN
UNDER-RECOGNIZED AND VERY
IMPORTANT PROBLEM OF DESIGN
WASTE.
WHAT DO YOU NEED TO DO TO TURN
A RESEARCH FINDING OR
RECOMMENDATION INTO SOMETHING
CLINICIANS CAN ACTUALLY WORK
WITH AND THAT PATIENTS CAN
BENEFIT FROM?
I WOULD PUT IT TO YOU, IF WE
DON'T DO THE DESIGN JOB AT
SCALE AND WITH LARGE-SCALE
COORDINATION YOU TEND TO GET A
HUGE AMOUNT OF DESIGN WASTE.
I SOMETIMES SAY THIS IS THE
TOOTHBRUSH PROBLEM.
EVERYONE HAS A TOOTHBRUSH BUT
NO ONE WANTS TO USE ANYONE
ELSES A.
WE GET AN ENORMOUS AMOUNT OF
WASTE WITH THE SPOKE SOLUTIONS
FOR EVERY SINGLE SCENARIO.
I CAN ILLUSTRATE THIS USING THE
HISTORY OF APPROACHES TO
PATIENT DETERIORATION, WHICH IS
A VERY SENSIBLE IDEA, YOU
MONITOR PATIENT'S VITAL SIGNS
AND USE TRACK AND TRIGGER
SYSTEMS TO IDENTIFY THE PATIENT
GETTING INTO DIFFICULTY AND
RESPOND.
IF WE LOOK AT PEDIATRIC EARLY
WARNING SCORES IN THE U.K.,
THERE ARE CURRENTLY DOZENS AND
DOZENS OF THESE.
BUT THIS REVIEW OF JUST SEVEN
FOUND THEY ARE HUGELY VARIABLE
AND USING DIFFERENT VARIABLES,
THRESHOLDS, ESCALATION
ALGORITHMS, THEY CAN'T ALL BE
RIGHT AND COMPLICATE THE
TRANSFER OF PATIENTS AND
THERE'S MULTIPLE RISKS
ASSOCIATED WITH STAFF TRAINING
AND EXPERIENCE.
IF WE GO BACK TO OBSTETRICS,
AGAIN, ATTEMPTS TO DEVELOP
EARLY WARNING SCORES, WE
CURRENTLY HAVE 147 IN A COUNTRY
THAT HAS BEEN 180 MATERNITY
UNITS. DIFFERENT OBSTETRIC
EARLY WARNING SCORES ACROSS
ENGLAND.
HUGE VARIATION IN WHAT IS
CONSIDERED TO BE NORMAL.
THE THRESHOLDS USED AND NATURE
OF THE CLINICAL RESPONSE
CLINICIANS ARE SUPPOSED TO TAKE.
THINGS AS BASIC AS TEMPERATURE
AND RESPIRATORY WEIGHT, HUGELY
VARIABLE DEPENDING ON THE
METHODS YOU LOOK AT.
WHAT WE ARE DOING WHEN WE LEAVE
THIS TYPE OF WORK TO INDIVIDUAL
UNITS WE REINVENT THE WHEEL ALL
THE TIME.
AND WE END UP PRODUCING RISK
AND POSSIBLE HARM.
WHEN WE HAVE A GOOD SOLUTION WE
AREN'T ALWAYS AS GOOD AS WE
SHOULD BE ENSURING THAT IS
IMPLEMENTED AND IMPLEMENTED
EFFECTIVELY.
THIS WAS A SERIES I EDIT FOR
CAMBRIDGE UNIVERSITY PRESS
ALONG WITH MY COLLEAGUES AT
THIS INSTITUTE.
IMPROVING QUALITY AND SAFETY IN
HEALTHCARE.
COMPLETELY OPEN ACCESS.
THE AN OVERVIEW OF MAJOR
APPROACHES TO IMPROVEMENT IN
HEALTHCARE.
WE BEGAN THIS SERIES BECAUSE OF
THE RECOGNITION, A LOT OF WHAT
WE DO IN THE NAME OF TRYING TO
IMPROVE QUALITY AND SAFETY IN
HEALTHCARE, IT E SEPTEMBERLY
DOESN'T WORK.
WE ARE LEFT WITH THE QUESTION,
DOES QUALITY IMPROVEMENT
IMPROVE QUALITY?
THERE ARE MANY REASONS IT'S
DIFFICULT TO ANSWER THIS
QUESTION.
BUT ONE OF THEM IS WE HAVE WAY
TOO MANY POORLY SUPPORTED,
POORLY DESIGNED LARGE-SCALE
IMPROVEMENT DIRECTORS HANDED
DOWN FROM ON HIGH AND DON'T
HAVE A PATH THROUGH TO IMPACT
INDIVIDUAL UNITS.
WE CAN SEE IN ENGLAND WE HAD
OVER 50 LARGE-SCALE IMPROVEMENT
PROGRAMS TARGETING MATERNITY
SINCE 2010, AND VERY FEW OF
THOSE HAVE BEEN EVALUATED.
ONLY 15 THAT WE COULD FIND.
THERE ARE MAJOR PROBLEMS HOW
THE PROGRAMS ARE DESCRIBED.
OF THE 15 EVALUATED ONLY 8
REPORTED AN EVIDENCE-BASE FOR
THEIR INTERVENTIONS. ONLY 7 HAD
PATIENT OR PUBLIC INVOLVEMENT,
ONLY SIX USED THEORY FRAMEWORK.
NOT ONE SET REDUCING INEQUALITY
AS A GOAL, DESPITE OUR REALLY
DISTRESSING INEQUITIES,
PARTICULARLY IN RELATION TO
ETHNICITY AND THE EVALUATIONS
WERE WEAK.
AS MUCH AS WE HAVE LARGE SCALE
POORLY DESIGNED AND IMPLEMENTED
EFFORTS WE HAVE POORLY
SUPPORTED BOTTOM-UP
IMPROVEMENT, IMPLEMENTATION
EFFORTS. THAT'S INCENTIVIZED
THROUGH VARIOUS MEANS BUT COULD
LEAD TO WASTE AND SUB-OPTIMAL
SOLUTIONS AND FAILURE TO LEARN
FROM OTHER AREAS. WE HAVEN'T
GOT THE STRUCTURE FOR
IMPLEMENTATION AND IMPROVEMENT
RIGHT YET.
THIS PIECE FROM MY COLLEAGUE,
LOCAL SURGICAL IMPROVEMENT
TEAMS ARE TRYING TO DO
IMPROVEMENT.
WE HAVE TO GET BETTER FINDING
SOLUTIONS THAT WORK.
WHAT WE DO KNOW AND THIS HAS
BEEN PUBLISHED IN THE CAMBRIDGE
ELEMENT SERIES.
WHEN YOU DO IT AT SCALE AND
INCLUSIVELY AND USING
COLLABORATION-BASED APPROACHES.
WE LEARNED A LOT ABOUT THIS
FROM THE SUCCESSFUL MICHIGAN
COLLABORATIVES FUNDED BY BREW
CROSS, BLUE STHAOELD THAT
DEMONSTRATED QUITE REMARKABLE
IMPROVEMENTS WHILE MANAGING TO
CONTROL COSTS. WE REPORTED ON
THIS JUST A FEW MONTHS AGO,
WHAT WE THINK IS HAPPENING IN
THOSE COLLABORATIVES THEY HAVE
A VERY STRONG EMPHASIS ON
POSITIVE DEVIANTS WHICH IS A
TECHNIQUE, IN FACT FIRST USE IN
DEVELOPMENT STUDIES WHERE IT'S
OFTEN CLEAR THE LOCAL
COMMUNITIES HAVE FOUND A
SOLUTION AND THE CHALLENGES TO
UNDERSTAND WHAT THEY ARE DOING
AND THEN TO SPREAD IT.
OTHER FEATURES OF HIGH QUALITY
COLLABORATIVE IMPROVEMENT ARE
REALLY HIGH QUALITY
COORDINATION, HIGH-QUALITY
MEASUREMENT, COMPARATIVE
PERFORMANCE FEEDBACK.
LEADERSHIP THAT SINGS WITH THE
PEOPLE, SINGS THAT SONG.
CREATING ACCOUNTABILITY FOR
QUALITY WHILE RELIEVING E SITES
FROM THE BURDENS *F PROGRAM
PARTICIPATION.
MOST OF ALL CO-DESIGN MEANS
WORKING WITH THE PEOPLE WHO
WORK IN SERVICES AND USE THEM.
WHEN WE HAVE USED THESE
CO-DESIGN TECHNIQUES AND ARE
HIGHLY INCLUSIVE YOU CAN DO
TREMENDOUS THINGS.
THEORY IS SOMETHING THAT GETS
PEOPLE VERY SPOOKED BUT IT'S
VERY PRACTICAL AND THIS ARTICLE
EXPLAINS JUST HOW PRACTICAL IT
CAN BE.
ESSENTIALLY YOU ARE TRYING TO
IDENTIFY GOALS AND WHAT DO YOU
NEED TO DO TO GET THERE.
I WILL ILLUSTRATE HOW PRACTICAL
IT COULD BE FROM MY OWN HOME
WHERE WE HAVE A MAJOR ISSUE
WITH SQUIRRELS AND THEY ARE
DETERMINED TO USE OUR BIRD
FEEDERS AS THEIR SOURCE OF FOOD.
MY HUSBAND HAS BEEN IN A
BATTLE WITH THE SQUIRRELS TO
DISCOURAGE THEM FROM THIS
PRACTICE, VERY LITTLE HAS
WORKED.
WHEN MY DAUGHTER WAS 5 AND JUST
STARTED SCHOOL AND LEARNING TO
READ AND IMPRESSED WITH RULES
AND REGULATIONS SHE CAME UP
WITH A PROPOSED SOLUTION, WHICH
CONSISTS OF THIS SIGN.
SHE FELT THAT WOULD BE THE
ANSWER TO THE PROBLEMS WE WERE
FACING.
WE HAD A THEORY, A CLEAR GOAL
AND RESOURCES BUT WHEN WE CAME
TO EXAMINE THE ASSUMPTIONS THIS
WAS BASED, FIRST THAT SQUIRRELS
CAN READ, AND IF THEY DO, THEY
WILL COMPLY, WE FOUND THEY WERE
FLAWED.
WE WERE ABLE TO SET ASIDE THAT
THEORY AND MOVE ONTO MY
HUSBAND'S SUGGESTION, MOVING
ONTO A PLASTIC BOTTLE.
WE HAD A CLEAR GOAL, WHICH WAS
GOOD, WE HAD THE SOURCE
REQUIRED, THREADING THE BOTTLE
ON THE POLE SO THE SQUIRREL
WOULD ENCOUNTER AS THEY CLIMB
THE POLE AND THEY WOULD THEN BE
DISCOURAGED OR INHIBITED FROM
PROGRESSING FORWARD.
THAT WAS THE ONE WE PUT INTO
PRACTICE.
THIS WAS IMPORTANT BECAUSE IF
YOU DON'T HAVE A GOOD PROGRAM
THEORY FOR CHOOSING WHAT YOU
WILL GO AHEAD WITH, THEN THE
INTERVENTION MAY BE FLAWED, IT
MAY NOT BE LINKED TO THE
OUTCOMES YOU WANT, IT COULD BE
VERY HARD TO DESCRIBE THE
INTERVENTION ACCURATELY AND
IT'S HARD TO REPLICATE THE
INTERVENTION OR ACCUMULATE
LEARNING.
ALSO IMPORTANT HERE IS BUILDING
ON THE LITERATURE.
MY HUSBAND MADE THE TERRIBLE
MISTAKE TELLING OUR NEIGHBOR
THIS SOLUTION APPEARED TO HAVE
WORKED.
THE NEIGHBOR WAS UNFORTUNATELY
THE EDITOR OF THE NEWSLETTER
AND THIS ARTICLE APPEARED, MUCH
TO MY HUSBAND'S GREAT
EMBARRASSMENT.
BUT UNFORTUNATELY HIS
EMBARRASSMENT WAS NOT
SUFFICIENTLY WELL DISSEMINATED
AND A COLLEAGUE HAD THE SAME
ISSUE WITH BIRDS THAT KEPT
FLYING INTO A WINDOW AND ENDING
UP INJURED AND THEIR SOLUTION
WAS THIS ONE, WHICH WE FELT
REPRODUCED SOME OF THE PROBLEMS
MY DAUGHTER'S HAD.
IF INTERPERSONAL AND
ORGANIZATIONAL DYNAMICKS ARE
KEY, WE DESIGN BAD SOLUTIONS.
IF WE REMEMBER THERE'S
LITERATURE HOW WE MAKE TEAMS
WAORK, HOW WE DEVELOP CULTURES
OF HIGH QUALITY CARE WE DO MUCH
BETTER.
WE KNOW FOR EXAMPLE, THERE'S
GOOD EVIDENCE ON THIS.
IF YOU TRAIN PEOPLE, FOR
EXAMPLE, IN OBSTETRIC
EMERGENCIES YOU CAN MASSIVELY
IMPROVE OUTCOMES.
WE CAN SHOW THE SAME EFFECT.
THIS IS VERY WELL EVIDENCED IN
SURGICAL MORTALITY AND WE KNOW
THE COME -- COMPONENTS HOW
YOU DO THAT.
WE COULD HAVE A THEORY THAT
TEAMWORK IS IMPORTANT TO
MATERNITY OUTCOMES AND WE COULD
SELECT THEN THE SOLUTIONS THAT
ARE MOST LIKELY TO WORK AND WE
CAN DO THAT USING THE
LITERATURE TO GUIDE US.
WE CAN ALSO BUILD ON EXAMPLES
OF POSITIVE DEVIANTS, AND WE
HAVE BEEN ABLE TO DO THAT USING
CO-DESIGN METHODS SO WE CAN
MATURE OUR UNDERSTANDING OF
WHAT YOU NEED TO BE DOING.
ADD TO USE HUMAN FACTORS AND
ERGONOMIC PRINCIPLES WHICH
AGAIN I THINK CONTINUE TO BE
UNDER USE IN HEALTHCARE AND
MATERNITY.
RECOGNIZING FOR EXAMPLE,
EFFECTS OF FATIGUE AND THEY ARE
PHYSICALLY FACILITATING THE
WORK CLINICIANS NEED TO DO.
WE KNOW ANTENATAL CARE IS
FUNDAMENTAL TO GOOD OUTCOME OF
PREGNANCY.
DURING THE PANDEMIC WITH THE
SHIFT TO REMOTE ANTENATAL CARE
THERE WERE MANY ISSUES RAISE BY
THIS.
WE WERE ABLE TO WORK WITH
WOMEN, WITH HEALTHCARE
PROFESSIONALS, WITH MANAGERS
AND GET TO REALLY STRONG
GEOGRAPHIC DIVERSITY SO WE
COULD COME UP WITH A FRAMEWORK
FOR WHAT GOOD WOULD LOOK LIKE
THAT WAS CO-DESIGNED WITH THOSE
PARTICIPANTS.
WE COULD SAY CLEARLY THERE WERE
SEVEN FEATURES, THEY WILL LOOK
CLEAR TO YOU BUT WE CAN ALSO
SAY WHAT THEY LOOK LIKE.
THAT PAPER IS PUBLISHED AND
AGAIN OPEN ACCESS AS WELL.
WE CAN CO-DESIGN PROCESS
IMPROVEMENTS WHICH IS VERY
IMPORTANT.
WE DO THIS USING A PLATFORM
WE'VE DEVELOPED CALLED
DISCOVERY.
ONE EXAMPLE DURING THE PANDEMIC
WAS WHEN THE NEED TO REDESIGN
THE PROCESS FOR HANDLING
POST-PARTEM HEMORRHAGE WHEN THE
WOMAN WAS COVID POSITIVE.
WE DID THIS BY SHOOTING A VERY
SHORT VIDEO.
WE GOT PEOPLE TO RECOMMEND HOW
TO IMPROVE IT.
THERE WERE LOTS OF
RECOMMENDATIONS, WE WERE ABLE
TO DISTILL THOSE, WHAT WE
LOOKED LIKE 22 RECOMMENDATIONS
AND RAN THAT THROUGH A ADELPHI
PROCESS SO PEOPLE WERE RATING
THEM AND BEING INVITED BACK
AGAIN TO RATE IN LIGHT OF
OTHERS.
THAT LED US TO 16 SOLUTIONS,
WHICH WE WERE ABLE TO USE TO
INFORM A NEW PROCESS.
WE RESHOT THE VIDEO AND THIS
HAS BEEN AN INCREDIBLY POPULAR
RESOURCE VIEWED BY OVER 130,000
PEOPLE AND USE OUTSIDE OF
MATERNITY.
IT WAS ENDORSED BY ALL THE
MAJOR PROFESSIONAL BODIES AND
MOST IMPORTANTLY BY PATIENT
SAFETY ADVOCATE.
SO WE WERE ABLE TO DO ALL OF
THAT IN SIX WEEKS.
IT SHOWS YOU CAN BUILD IMPROVED
PROCESSES AND SYSTEMS
COLLABORATIVELY, YOU CAN ENGAGE
DIVERSE AND DISTRIBUTED
EXPERTISE AND DOO IT AT SCALE.
WE PUBLISHED THE METHODOLOGY
FOR THAT.
THEN YOU CAN CO-DESIGN CHANGES
IN DLIN CAL PRACTICE.
THIS GOES BACK TO MY POINT
TRANSLATING RESEARCH FINDINGS
INTO SOMETHING THAT WILL
ACTUALLY BENEFIT PATIENTS.
WE KNOW FAILURE TO DETECT AND
RESPOND TO FETAL DETERIORATION
DURING LABOR IS ONE OF THE MOST
SIGNIFICANT CONTRIBUTORS TO
AVOIDABLE BRAIN INJURY DURING
CHILD BIRTH.
OBVIOUSLY HUGE IMPACT ON
FAMILIES WHICH IS POTENTIALLY
LIFE LONG.
IN U.K. CLINICAL NEGLIGENCE
ACCOUNTS FOR THIS INJURY, A
SIGNIFICANT PROPORTION OF OUR
NHS BUDGET AND HAS CONSEQUENCES
FOR STAFF EXPERIENCES AS WELL.
WHAT WE KNOW FROM BIOMEDICAL
SCIENCE, THERE'S A RANGE OF
CLINICAL RISK FACTORS YOU NEED
TO BE MEASURING AND ALSO THESE
ARE NOT NECESSARILY, THESE RISK
FACTORS ARE NOT EQUITABLY
DISTRIBUTED INCLUDING MACONIUM
WHICH TENDS TO APPEAR EARLIER
IN WOMEN WITH DARKER SKIN.
BUT WE KNOW TRYING TO TRANSLATE
WHAT HAPPENS WHEN YOU'VE GOT A
MULTIPLE DIFFERENT RISK FACTORS
YOU NEED TO BE MONITORING INTO
SOMETHING CLINICIANS CAN USE
TENDS TO BE IMPERILED BY WEAK
WORK SYSTEM DESIGN.
WE WORKED WITH CLINICIANS, WE
WORKED ONLINE, OFFLINE, WE
WORKED WITH WOMEN AND THEIR
BIRTH PARTNERS, BIRTHING
PEOPLE, SO WE COULD MAKE SURE
THAT THESE MET THE NEEDS OF
EVERYONE INVOLVED.
WE WERE ABLE TO SHOW, FOR
EXAMPLE, VERY EARLY ON, THE
CLINICIANS REALLY WANTED THIS.
AND THERE WAS HUGE SUPPORT FOR
STANDARDIZING THE APPROACH AND
FOR HAVING AN APPROACH THAT
MONITORED MULTIPLE RISK
FACTORS, NOT JUST FETAL HEART
RATE AND WITH THE DEFINITIONS
AND NEED FOR MORE CLARITY
BEFORE WE CAN PROCEED TO THE
TOOL.
WE DID THAT BY CONSULTING WITH
CLINICIANS ON WHAT THEY THOUGHT
THE DEFINITIONS SHOULD INVOLVE.
AND THAT MEANT WE GOT TO
CLARITY AND PEOPLE ALSO FELT
THEY HAD OWNERSHIP ON THAT.
WE DEVELOPED TWO DIFFERENT
VERSIONS OF THE CLINICAL TOOLS.
AND WE RAN INTERVIEWS, THINK
LOUD INTERVIEWS AS THEY ARE
CALLED TO ASSESS HOW TO IMPROVE
THEM AND THEN RAN SIMULATION
TESTING TO SEE WHAT WOULD
HAPPEN WHEN YOU PUT THESE INTO
PRACTICE AND WOMEN AND BIRNLING
PEOPLE WERE JUST AS INVOLVED AS
CLINICIANS. WE ENGAGED DEEPLY
WITH WOMEN AND BIRTH PARTNERS
THROUGHOUT SO THEY COULD TELL
US WHAT GOOD WOULD LOOK LIKE
FOR THEM AS THESE TOOLS WERE
DEPLOYED AND SO THERE WAS
CLARITY ABOUT COMMUNICATION.
SO THAT WAS EXTREMELY VALUABLE.
WE HAVE PUBLISHED THAT WORK.
HOW TO CODIFY THE CO-DESIGN
PRINCIPLES YOU WOULD USE.
IN TERMS OF EVALUATION, THE
DRUGS DON'T ALWAYS WORK AND
THERE'S NO REASON
IMPLEMENTATION AND IMPROVEMENT
SHOULD WORK ALL THE TIME AS
WELL.
WE CAN SEE THIS FROM EVALUATION
OF THE COACHING BASED WHO IS
SAFER CHILD BIRTH INTERVENTION
IN INDIA AND EFFORT TO SCALE UP
PREVIOUSLY SUCCESSFUL
SIMULATION TRAINING PROGRAM IN
SCOTLAND.
THESE THINGS DON'T ALWAYS WORK
AND WE HAVE TO EVALUATE THEM IN
ORDER TO UNDERSTAND WHY.
ONE OF THE REASONS IS THE
STRUGGLING UNITS TEND TO HAVE
VERY DISTINCTIVE NEEDS AND THEY
AREN'T ALWAYS ADDRESSED IN
TERMS OF IMPROVEMENT PROGRAM SO
THEY ARE LEFT TO STRUGGLE.
AREAS WHERE THINGS LIKE AS IF
THEY SHOULD WORK BUT DON'T
INCLUDE HOTSPOTTING, WOULD
IDENTIFY PEOPLE WHO APPEAR TO
HAVE RISK FACTORS SO YOU CAN
INTERVENE AND PREVENT THEM FROM
BEING READMITTED.
NEW ENGLAND JOURNAL STUDY
SHOWED THIS DOESN'T LEAD TO
IMPROVEMENTS IN THE NUMBER OF
PEOPLE READMITTED.
WE SEE EXACTLY THE SAME THING
IN U.K. CONTEXT.
USING MEASURES TO PREVENT
PEOPLE AT HIGH RISK OF MERM SY
INPATIENT ADMISSION, DO NOT
REDEUCING HEALTHCARE
UTILIZATION AND DO INCREASE
INPATIENT ADMISSIONS AND
INCREASE PRIMARY CARE WORKLOAD
AND EXACTLY THE SAME THING
HAPPENED IN THE TRIAL OF
PREDICTIVE RISKS,
STRATIFICATION IN PRIMARY CARE.
WHAT HAPPENS MAY NOT BE THE
SAME AS WHAT IS INTENDED.
THE KEY ACTIVITIES MAY INTO THE
HAPPEN OR LOOK THE WAY YOU
EXPECT THEM, MECHANISMS MAY NOT
FUNCTION, THE EXTERNAL MAY
MODIFY WHAT IS POSSIBLE AND
PEOPLE IMPROVISE, INNOVATE AND
ADAPT.
THIS IS MY FINAL EXAMPLE OF AN
ANIMAL.
THAT WOULD BE A GIRAFFE.
FOR EXAMPLE THERE WERE WAY TOO
MANY TARGETS, THERE WAS NOT
ENOUGH SUPPORT PROVIDED AND
PEOPLE WERE NOT ABLE TO DELIVER
THE INTERVENTION AS DESIGNED.
SO, TO CONCLUDE, IF WE ARE
GOING TO IMPROVE MATERNITY CARE
WE NEED BASIC COMPONENTS OF A
LEARNING SYSTEM IN PLACE.
YOU NEED TO CHARACTERIZE AND
UNDERSTAND PROBLEMS, POSSIBLE
SOLUTIONS AND EVALUATE THAT'S
WHERE IMPROVEMENT IN MATERNITY
CARE LIES. THANK YOU VERY MUCH,
I WILL STOP TALKING.
>> VERONICA TONWE: THANK YOU,
DR. DIXON-WOODS. WE ARE SEEING
SOME CLAPS.
FEEL FREE TO ENTER QUESTIONS IN
THE CHAT.
I WILL START WITH ONE QUESTION
AND THEN I'M GOING TO MOVE TO
THE CHAT AND OPEN THE FLOOR.
WITH TOP-DOWN AND BOTTOM UP,
CAN TECHNOLOGY OR DIGITAL TOOLS
BE OPTIMIZED TO BRIDGE THE
EVIDENCE GAPS AND ENHANCE
QUALITY OF MATERNAL CARE.
YOU TALKED ABOUT THE CAMBRIDGE
ELEMENTS.
>> Mary Dixon-Woods: I THINK
YOU NEED MODELS FOR
COORDINATING THE ACTIVITY.
THE DISCOVERY PLATFORM
ESSENTIALLY TRIES TO DO
CO-DESIGN AT SCALEMENT WE THINK
THERE ARE THREE THINGS YOU NEED.
YOU NEED A PLATFORM WHERE YOU
CAN CONVENE AN ONLINE COMMUNITY
AND THAT CAN BE THE COMMUNITY
YOU NEED TO SOLVE THIS PROBLEM
WHICH WILL OFTEN BE CLINICIANS
AND PATIENTS.
YOU NEED HIGH-QUALITY DATA SO
YOU HAVE BASELINES AND YOU CAN
ASSESS THE EFFECTS OF
INTERVENTION AND YOU NEED
CO-DESIGN CAPABILITIES AND
THOSE CO-DESIGN CAPABILITIES
ARE GROUNDED IN HUMAN FACTORS
AND GROUNDED IN LISTENING TO
PEOPLE AND GROUNDED IN LEARNING
FROM THE LITERATURE AND FROM
POSITIVE DEFENCE -- DEVIANTS
TO DESIGN A SOLUTION AT SCALE.
YOU GET TO MUCH MORE SATISFYING
SOLUTIONS PEOPLE ARE MUCH
HAPPIER TO ACCEPT AND IMPLEMENT.
BECAUSE THEY HAD THEIR SAY AND
TOOK ON THE JOURNEY WITH YOU
AND YOU HAVE ALSO TAKEN INTO
ACCOUNT THEIR CONCERNS AND
CONSIDERATIONS.
>> Mary Masterson: THAT'S A
WONDERFUL ANSWER.
I LIKE THE FACT YOU SAID
JOURNEY.
HAVING THEM FROM ALL THE WAY TO
THE END.
MANY STRATEGIES YOU SPOKE
TOWARDS FOCUSING ON THE
CO-DESIGN ELEMENT, HOW ARE WE
GOING TO BE ASSESSING
SUSTAINABILITY.
I KNOW ONE OF THE TOPICS YOU
SPOKE TOWARDS HAPPENED DURING
COVID WHERE THERE WERE MANY
VIDEO MONTAGES BUT HOW DO WE
EVALUATE THOSE PROCESSES, AS
YOU WERE MENTIONING?
>> Mary Dixon-Woods: YEP, A
VERY CHALLENGING IDEA.
WE TALKED ABOUT A JOURNEY, I
THINK MANY OF THESE JOURNEYS
NEVER END.
THERE HAS BEEN A SENSE WHICH
IMPROVEMENT AND IMPLEMENTATION
IS TREATED AS EPISODIC, YOU DO
IT AND GET OUT, THAT'S NOT THE
WAY THINGS WORK.
IF YOU SEE EXAMPLES OF
LONG-TERM SUSTAINED
IMPROVEMENTS IT'S KEEPING THE
COMMUNITY ENGAGED, IT'S
COMMITTING TO CONTINUOUS
IMPROVEMENT.
NEVER STOPPING, ALWAYS THINKING
WE CAN DO BETTER HERE, WE CAN
LEARN MORE, THERE'S ALWAYS
GOING TO BE SOMEBODY WHO HAS AN
IDEA.
AND AGAIN, I THINK THE
INFRASTRUCTURE FOR THAT IS
LACKING.
I DON'T THINK THE WILL TO DO IT
IS LACKING BUT I THINK
UNDERSTANDING HOW WE BRING
PEOPLE TOGETHER AND KEEP THEM
WITH US OVER THE LONG TERM.
BECAUSE WE KNOW, AND YOU WITH
THINGS YOU ARE SPOTTING AND
START TO DEVIATE AND YOU HAVE
WAYS OF INTERVENING.
>> Mary Masterson: I SEE DR.
MENSA HAS A FEW QUESTIONS.
DO YOU WANT TO GO OFF MUTE AND
ASK YOUR QUESTIONS OR I CAN ASK
IT.
JUST LET ME KNOW.
>> PLEASE GO AHEAD.
>> Mary Masterson: OKAY.
>> THAT WAS A REALLY EXCELLENT
PRESENTATION, SO THANK YOU VERY
MUCH.
>> I WILL ASK HIS FIRST
QUESTION.
DR. MENSAH SAID
CONGRATULATIONS. ONE QUESTION
WE ARE FOCUSED ON AS AN ELEMENT
OF THIS WORKSHOP IN A WAY WHAT
ARE OPPORTUNITIES YOU SEE FOR
RESEARCH FUNDING IN AGENCIES
SUCH AS NIH CAN SUPPORT
RESEARCH THAT ACTUALLY IMPROVE
QUALITY CARE DELIVERY AND
DISEASE IN THE HEART, LUNG,
BLOOD AND SLEEP SYSTEMS.
YOU KIND OF TOUCHED ON IT BUT I
WOULD LOVE IF YOU COULD EXPAND
ON IT SOME.
>> Mary Dixon-Woods: THANK YOU.
I MEAN GETTING THIS KIND OF
FUNDING IS ALWAYS A CHALLENGE.
WE HAVE SIMILAR CHALLENGES HERE.
ONE IS BUDDYING UP WITH THE
CLINICAL RESEARCHER AND MAKING
IT CLEAR THE IMPACT OF THEIR
WORK WILL BE MUCH-MORE ENHANCED
IF YOU GET THE CO-DESIGN AND
IMPLEMENTATION STUFF UP FRONT.
MY CONCERN FOR EXAMPLE WITH THE
CLINICAL PREDICTION MODELS I
WAS TALKING ABOUT IS THE DATA
PEOPLE DEVELOPED THEM AND THEN
TURN AROUND AND SAY THAT IS
YOUR PROBLEM TO SORT OUT HOW
IT'S GOING TO BE IMPLEMENTED.
THAT IS THE WRONG WAY TO THINK
ABOUT IMPLEMENTATION.
YOU HAVE TO THINK OF
IMPLEMENTATION FROM THE GET-GO.
IT'S TOO LATE BY THE TIME YOU
HAVE A PRODUCT.
IT'S WAY TOO LATE.
YOU HAVEN'T LISTENED TO PEOPLE
OR THOUGHT ABOUT THE WORK
SYSTEMS.
THAT'S WHY ONLY 3%, DESPITE THE
THOUSANDS PUBLISHED EVERY YEAR
ACTUALLY GO INTO CLINICAL
PRACTICE.
SO THIS IS CRAZY STUFF AND I
THINK THE FUNDING AGENCIES ARE
INCREASINGLY SENSITIVE TO THE
FACT THEY ARE FUNDING STUFF
THAT NEVER MAKES A DIFFERENCE
TO A SINGLE PATIENT.
SO MAKING THOSE PARTNERSHIPS UP
FRONT IS REALLY KEY.
I THINK A SECOND THING THEN IS
PARTNERING WITH PEOPLE WHO ARE
DOING THE HARD WORK ON THE
GROUND OF TRYING TO DO QUALITY
IMPROVEMENT, DO IMPLEMENTATION
AND SO ON.
BUILDING EVALUATION PROGRAMS
AROUND THEM.
GETTING THE CO-DESIGN AND
IMPLEMENTATION WORK IN RIGHT AT
THE BEGINNING, BECAUSE AGAIN
THOSE PEOPLE WILL WASTE AN
AWFUL LOT OF TIME AND ENERGY
AND RESOURCE AND GOODWILL IF
THAT IS NOT DONE REALLY
CAREFULLY FROM THE BEGINNING.
YOU HAVE GOT ARC, THAT'S BEEN A
VERY VALUABLE AGENCY.
AGAIN, LINKING IT TO THEIR
PRIORITIES, PATIENT SAFETY AND
SO ON FEELS LIKE ONE OF THE
WAYS TO GO.
BUT IT IS A CHALLENGING AREA TO
GET FUNDING.
>> Mary Masterson: I LOVE
FOCUSING ON PARTNERSHIPS
BECAUSE YOUR DATA AND OTHERS
HAVE SHOWN WE HAVE AN OVER
ABUNDANCE OF THIS TYPE OF
INFORMATION BEING PUSHED OUT
BUT HOW MUCH IS ACTUALLY BEING
UTILIZED BY THE COMMUNITIES AND
THE PEOPLE WHO NEED IT.
I ESPECIALLY WANT TO FOCUS ON
ANOTHER ASPECT OF YOUR
PRESENTATION, THE IMPORTANCE OF
INTERPERSONAL, TEAMING EFFECTS.
HOW DO WE TAKE THAT INTO
CONSIDER, PARTICULARLY FROM THE
DATA SCIENCE, LOOKING AT ROUGH
NUMBERS WHERE THERE'S PERSONAL
COMPONENTS. I APPRECIATE YOUR
ANSWERS.
DR. MENSAH, DO YOU HAVE
ANYTHING TO ADD?
>> I THINK REQUIRING THE NEED
FOR THE PARTNERSHIPS INSTEAD OF
LEAVING IT AND LETTING OTHERS.
BUT THAT'S HELPFUL.
THANK YOU.
>> Mary Dixon-Woods: THANK YOU.
I'M SUCH A FAN OF YOURS, I'VE
BEEN A BIT AWE-STRUCK TO
FINALLY MEET YOU.
>> THRILLED TO BE HERE.
THANK YOU.
>> Mary Masterson: DR. MENSAH
IS AWESOME.
HIS SECOND QUESTION IS ABOUT
POSITIVE DEVIANTS, ARE THERE
EXAMPLES OF NEGATIVE DEVIANTS
IN MATERNAL HEALTH THAT COULD
IDEALLY SERVE AS A FOCUS FOR
DE-IMPLEMENTATION RESEARCH.
>> Mary Dixon-Woods: OKAY, WOW,
THIS IS A VERY SMART QUESTION,
ONE WE HAVE ACTUALLY BEEN
BATTLING WITH.
WE HAVE HAD A SERIES OF
MATERNITY DISASTERS IN THE U.K.
IN FACT OUR MATERNITY SYSTEM IS
CURRENTLY IN CRISIS BECAUSE WE
HAVE HAD SO MANY SCANDALS
INVOLVING ORGANIZATIONAL
DEGRADATION CAUSING TERRIBLE
HARM TO FAMILIES.
SO THERE'S BEEN AN AWFUL LOT OF
NEGATIVE DEVIANTS, WE HAVE HAD
LOTS OF GOVERNMENT INQUIRIES
REPORTS AND ALL THE REST OF IT,
ACTUALLY CONTINUING TO FOCUS ON
THE NEGATIVE DEVIANTS, NOT
MOVING THE DIAL.
IN FACT I THINK WE HAVE ALL THE
JUICE WE CAN GET FROM WHAT GOES
WRONG.
WHAT WE ARE TRYING TO FOCUS ON
IS WHAT YOU NEED TO DO RIGHT.
WE CO-DESIGNED THAT FRAMEWORK
THAT SAYS HERE IS WHAT GOOD
LOOKS LIKE AND OPERATING AT A
FAIRLY GENERAL LEVEL.
I THINK THE QUESTION OF
DE-IMPLEMENTATION IS ABSOLUTELY
CRITICAL.
IF WE HAVE 147 DIFFERENT
OBSTETRIC EARLY WARNING SCORES
WE HAVE TO DE-IMPLEMENT MOST OF
THOSE AND GET TO ONE THAT IS
EVIDENCE-BASED AND THAT
EVERYBODY ACCEPTS IS GOING TO
WORK.
MOST OF IT HAS GONE ON
LOW-VALUE CARE, THAT'S NOT WHAT
THIS IS, MORE ABOUT TOOLS,
PRACTICES, ET CETERA.
IT'S NOT LOW VALUE, IT'S JUST
THAT IT IS NOT RIGHT.
WE HAVE STUDIED A PROGRAM WHERE
THE GOVERNMENT ESSENTIALLY SAID
ON THIS DAY YOU GOT TO STOP
USING THAT THING AND START
USING THIS ONE.
THAT WAS A VERY, VERY MIXED
SUCCESS.
ANOTHER APPROACH WOULD BE TO
WARM PEOPLE UP TO THE IDEA AND
OVER TIME GIVE THEM STRATEGIES,
AND DESIGN AND ALL THAT THAT
THEY NEED AND CALL IT.
YOU HAVE TO PHASE THIS OUT BY
SUCH AND SUCH A DAY.
I WOULD LIKE TO SEE A LOT MORE
RESEARCH ON DEIMPLEMENTATION
AND THE OTHER SIDE OF THAT IS
IMPLEMENTATION.
WHICH I STILL FEEL JUST DOESN'T
GET THE ATTENTION IT NEEDS.
>> THANK YOU, APPRECIATE IT.
>> Mary Masterson: YEAH, NO, I
THINK THAT'S A PHENOMENAL
ANSWER, THE DE-IMPLEMENTATION
ASPECTS.
BELOW VALUE, THERE'S BEEN A LOT
MORE WORK BUT THIS IS SOMETHING
THAT IS NEW GROUND.
I'M VERY CURIOUS AND LOOK
FORWARD TO YOUR FUTURE WORK,
ESPECIALLY AS IT RELATES TO
THAT TEAMING ASPECT.
DE-IMPLEMENTING ON THAT SCALE
DOES REQUIRE A SIGNIFICANT
LEVEL OF COORDINATION.
I DID WANT TO GO BACK TO THE
CO-DESIGN PROCESS.
SO THERE'S A LOT OF ENGAGEMENT
WITH WOMEN AND THEIR PARTNERS
THROUGH MANY OF YOUR
INTERVENTIONS AND THE STUDIES
THAT YOU HAVE DONE.
COULD YOU TALK A BIT MORE ABOUT
HOW YOU ENGAGE WITH THE
COMMUNITY AND JUST BUILD THIS
RAPPORT AND TRUST?
BECAUSE IT'S A LONG-STANDING
JOURNEY AND RELATIONSHIP YOU
ARE MENTIONING.
I'M CURIOUS TO HEAR A BIT MORE
ABOUT THAT.
>> Mary Dixon-Woods: YEAH, I'M
REALLY HAPPY TO TALK ABOUT
THAT, BECAUSE IT'S ONE OF THE
THINGS WE ARE VERY, VERY HAPPY
TO DO, VERY COMMITTED TO DOING.
WE HAVE TO DO THAT IN MULTIPLE
WAYS.
SOME IS THE LARGE-SCALE
CONSULTATION.
YOU HAVE TO DO THAT BECAUSE
IT'S THE ONLY WAY PEOPLE WILL
EVER BE ABLE TO CONTRIBUTE,
DIGITAL CONTEXT BECAUSE THEY
CAN'T LEAVE THEIR KIDS OR GET
TIME OFF WORK TO BE IN A
MEETING SOMEWHERE.
WE PUT AN EXAMPLE OF SOMETHING,
A LITTLE VIDEO OR ANIMATION
ONLINE.
AND BASICALLY TELL US WHAT THEY
THOUGHT WAS GOOD ABOUT IT, AND
WHAT THEY THOUGHT WAS LESS GOOD
ABOUT IT.
WE WOULD TYPICALLY DO THAT
USING SOMETHING NOT PERFECT TO
ENGINEER SOME PROBLEM.
PEOPLE ARE GREAT SAYING THIS IS
WHAT REALLY NEEDS TO HAPPEN.
SO WE CAN USE THAT.
THEN WE USE REALLY DEEP
ENGAGEMENT WITH PEOPLE IN
PERSON OR IN ONLINE MEETINGS
AND WE SOURCE THOSE VERY
INTENTIONALLY.
WE FIND PEOPLE WHO ARE IN WHO
WOULD OTHERWISE BE UNHEARD.
GOING INTO PLACES THAT ARE
DISADVANTAGED BY USING
NETWORKS. SO WE BRING THEM.
IT'S JUST HARD TO OVER STATE
WHAT A DIFFERENCE THEY MADE IN
THAT PROJECT.
THERE WERE EIGHT DIFFERENT RISK
FACTORS INTO A SINGLE TOOL THAT
THE CLINICIANS WOULD USE DURING
THE LABOR.
AS I SAID, WE TESTED THAT IN
SIMULATIONS. AND WHEN THE WOMEN
AND BIRTHING AND PEOPLE AND
THEIR PARTNERS SAW THIS, THEY
SAID "BUT YOU'RE NOT ASKING US..
WE HAVE NO SAY, THIS TOOL IS
JUST MEASURING CLINICAL
PARAMETERS AND WE ACCEPT THEY
ARE IMPORTANT.
."
THEY INSISTED THERE WAS A
QUESTION ON THE TOOL WHICH WAS
JUST AS MUCH STATUS AS MY
MACONIUM OR BLOOD.
THEY WERE GENUINELY INVOLVED IN
THE DIALOGUE AND CONVERSATION.
YOU HAVE TO CHECK EVERY HOUR ON
THE WOMEN'S PERCEPTION OF THE
SITUATION WHAT THEY WANT DOING.
THAT IS AN EXAMPLE OF REAL
CO-DESIGNMENT WE WOULDN'T HAVE
COME UP WITH ANY OF THIS
WITHOUT REALLY WORKING WITH THE
CLINICIANS, WITH THE
COMMUNITIES, SO WE COULD
ACTUALLY GET TO SOMETHING THAT
WAS GOING TO WORK FOR EVERYONE.
>> Mary Masterson: THAT'S
AMAZING AND I REALLY LOVE THE
EMPHASIS ON THE SELF-EFFICACY
AND THERE'S A NEED TO JUST MAKE
YOUR VOICE HEARD AND I'M HAPPY
TO HEAR IT'S DEFINITELY AN
INTEGRAL COMPONENT OF YOUR
DESIGN.
I DO SEE ANOTHER QUESTION.
SO REGARDING CO-DESIGN, CAN YOU
ELABORATE ON RESOURCES NEEDED
INCLUDING TIMELINE AND IF
SHOULD OR COULD BE A PHASE TO
REFINE THE STRATEGY.
>> Mary Masterson: THAT IS AN
IMPORTANT QUESTION.
WHEN WE WERE DEVELOPING THAT
PRACTICE TOOL THAT WAS A
SIX-MONTH PROJECT, THAT
REQUIRED A LOT OF RESOURCE.
MY CHALLENGE TO ANYONE WHO SAYS
THIS IS EXPENSIVE, IT'S VERY
EXPENSIVE TO PUT THINGS INTO
PRACTICE THAT THEN DON'T WORK.
SO YOU END UP WASTING THE MONEY
LATER DOWN THE LINE OF WHEN
IT'S NOT PRODUCING THE IMPACT
AND BRINGING IT FORWARD SO YOU
DO THE CO-DESIGN WORKUP FRONT
IS THE KEY.
WHETHER WE CAN PERSUADE
FUNDERS, BUT WI NEEDED
COMMUNITY ENGAGEMENT, HUMAN
FACTORS PEOPLE, VISUAL
DESIGNERS, CLINICIANS AND WE
NEEDED A KIND OF INFRASTRUCTURE
FOR FOR ESSENTIALLY
COORDINATING ALL OF THE
ACTIVITIES.
WE STARTED WITH AN ADVISORY
GROUP AND PATIENT GROUPS. WE
MOVED THROUGH DIFFERENT
VERSIONS THE DESIGN, WE USE THE
HUMAN FACTORS PEOPLE TO TELL US
HOW WE WOULD LAY THEM OUT, WE
USE THOSE THINK ALOUD
INTERVIEWS SO WE SENT PEOPLE
CLINICAL SCENARIOS AND VERSION
OF THE TOOL AND SAW HOW THEY
GOT ON TRYING TO USE IT.
WE VIDEOED THE SIMULATIONS SO
WE COULD TEST IT, IT WAS SAFE
SO THE SIMULATIONS INVOLVED
SOME TEAMS BEING GIVEN THE
TOOL, AND SOME TEAMS DOING IT
USING THEIR STANDARD PRACTICE,
SO WE WERE ABLE TO IDENTIFY THE
TEAMS GIVEN THE TOOL WERE ABLE
TO FIND THE BABY ON TIME AND
TAKE SAFE ACTIONS SUBSEQUENTLY.
SO ALL OF THAT I FEEL WAS
RESOURCE INTENSIVE.
BUT IT CAN BE DONE AND YOU DO
GET TO A VERY GOOD PLACE
AFTERWARDS.
>> Mary Masterson: IT SOUNDS
AMAZING AND ALSO THE FACTOR OF
TIME.
HAVING APPROPRIATE OF TIME TO
DO THIS IS SOMETHING THAT YOU
HAVE TO HAVE IN THERE.
I DO HAVE ANOTHER QUESTION FROM
MY COLLEAGUE.
THEY HAD A QUESTION ABOUT
COORDINATION AND PRIORITIZATION.
>> Mary Dixon-Woods: OH YEAH.
>> Mary Masterson: 27 HOURS TO
COMPLETE GUIDELINE CARE.
WE HEARD YESTERDAY HOW BUNDLING
SERVICES AND SCREENING.
HOW CAN WE WORK WITHIN THE
SYSTEMS TO DO THIS COORDINATION
AND PRIORITIZATION EFFECTIVELY,
BASED ON NEEDS FOR STANDARD
CARE WHILE ALSO CONSIDERING
LOCAL CONTEXT?
>> Mary Dixon-Woods: THAT'S A
COMPLEX QUESTION, SO I WILL BE,
I'LL TRY TO BE SUCCINCT.
I THINK SOME OF THIS IS ABOUT
FIGURING OUT WHAT OUR
PRIORITIES ARE FOR IMPROVEMENT
AND WHAT OUR PRIORITIES ARE FOR
CARE.
AND SOME OF THIS GOES BACK TO
NOT DESIGNING A LOT OF THIS
INTERVENTION STUFF UP FRONT, SO
WE THEN END UP WITH SOMETHING
UNIMPLEMENTAL.
WE CREATE RISKS BECAUSE PEOPLE
HAVE TO ESSENTIALLY SKIMP.
THEY CAN'T DO IT IN A
GUIDELINE-COMPLIANT WAY.
THEY ARE USING TECHNIQUES OF
CO-DESIGN TO IDENTIFY
PRIORITIES AND SOME OF THIS IS
WORK SYSTEM DESIGN SO YOU ARE
DOING THIS IN THE MOST
EFFICIENT WAY.
I DON'T HAVE THE ANSWER TO THE
BIGGER PROBLEM HERE WHICH IS
HEALTHCARE STRUCTURES ARE OFTEN
ADVERSE OR HOSTILE TO DESIGNING
THE BEST POSSIBLE HEALTHCARE
PROCESSES.
>> Mary Masterson: NO, WE DON'T
EXPECT YOU TO HAVE ALL THE
ANSWERS.
THERE IS MORE TO THIS SESSION.
IT'S A FRIENDLY LOCATION.
I WILL ASK A QUESTION ABOUT
ETHICS, BECAUSE YOU DID SPEAK A
LOT ABOUT POTENTIAL BIAS THAT'S
COULD BE FACED, INDEPENDENT OF
STRUCTURAL, IT COULD BE
STRUCTURAL.
HOW CAN WE ENSURE QUALITY
IMPROVEMENT AND EVIDENCE-BASED
PRACTICES ARE EQUITABLE AND DO
NOT INADVERTENTLY WIDEN HEALTH
DISPARITIES AND MATERNAL HEALTH
OUTCOMES.
>> Mary Dixon-Woods: THIS IS SO
IMPORTANT.
I THINK QUALITY IMPROVEMENT HAS
NOT GIVEN ENOUGH ATTENTION TO
THIS ISSUE.
AND WE HAVE BEEN RUNNING
MATERNITY IMPROVEMENT PROGRAMS
HERE FOR 13 OR 14 YEARS WITHOUT
INCLUDING INEQUALITY AS A
PRIORITY.
I THINK WE HAVE TO BE
INCREDIBLY PURPOSEFUL,
INTENTIONAL, COMMITTED, AND
GUIDED BY INCLUSION, HIGHLY,
HIGHLY ATTENTIVE TO DIVERSITY
AND THINK ABOUT THIS AS
ABSOLUTELY IN ALL IMPROVEMENT
AND IMPLEMENTATION.
>> Mary Masterson: I CAN SEE WE
ARE AT THE TOP OF TIME.
NICE SEGUE COULD BE FORMALIZED
METHODS YOU ARE STRESSING, JUST
OVERLAYING THAT EQUITY LENS.
>> Mary Dixon-Woods: DEFINITELY.
>> Mary Masterson: I'M SURE
SOMETHING EVERYONE IS WORKING
TOWARDS.
IT'S BEEN A PLEASURE SPEAKING
WITH YOU DR. MARY DIXON-WOODS,
FROM ONE MARY TO ANOTHER.
IT'S BEEN WOND IRFULL SPEAKING
WITH YOU AND THANK YOU AGAIN
FOR PARTICIPATING IN OUR
WORKSHOP.
>> Mary Dixon-Woods: THANK YOU
FOR THAT ABSOLUTELY TERRIFIC
HOSTING AND THANK YOU FOR
HAVING ME.
I HOPE THE REST OF THE WORKSHOP
GOES REALLY WELL.
>> GREAT, EXCELLENT.
THANK YOU.
>> THANK YOU.
I THINK WE ARE MOVING INTO A
SHOOTER BREAK BEFORE WE HAVE
OUR SLEEP PANEL.
SO THANK YOU.
>> SLEEP IS A BIOLOGICAL
IMPERATIVE, ESSENTIAL FOR
MAINTAINING GOOD HEALTH.
DECADES OF RESEARCH SHOW SLEEP
DISRUPTION ELEVATES RISK FOR
OBESITY, DIABETES, STROKE,
HYPERTENSION AND PREGNANCY
COMPLICATIONS.
WHILE STUDIES THAT ELEVATE
STRATEGIES FOR PROMOTING AND
IMPLEMENTING SLEEP HEALTH HAVE
SHOWN GREAT PROMISE.
WE STILL HAVE FAR TO GO BOTH
DOMESTICALLY AND GLOBALLY.
GIVEN THE NASCENT STATE OF
IMPLEMENTATION RESEARCH IN
MATERNAL SLEEP HEALTH.
THIS SESSION WILL EXPLORE THE
INTERSECTIONALIVITY SLEEP
HEALTH AND MATERNAL HEALTH, FOR
EVIDENCE-BASED INTERVENTIONS
FOR IMPROVING MATERNAL HEALTH.
TODAY WE WILL HEAR FROM DR.
GHADA BOURJEILY, WHO WILL SLEEP
ON SLEEP DISORDERS AND SARA
ENGLAND HOW IT AFFECTS MATERNAL
AND FETAL HEALTH AND WE WILL
CLOSE WITH DR. SUZIE BERTISCH.
THEN WE WILL LEAD INTO
DISCUSSION AND Q&A.
SO PLEASE PUT YOUR QUESTIONS IN
THE Q&A BOX.
THANK YOU SO MUCH.
DR. BOURJEILY.
THANK YOU SO MUCH, SHILPY FOR
THE INTRODUCTION AND NHLBI AND
CITRICS FOR THE INVITE.
HERE ARE DISCLOSURES, THEY HAVE
NOTHING TO DO WITH WHAT I WILL
TALK ABOUT TODAY.
NEXT SLIDE.
TODAY I WILL TALK ABOUT
INTRODUCE QUALITY AND SLEEP
DURATION CHANGE PREGNANCY AND
HOW SLEEP DISTURB [APPLAUSE]S
ARE MORE COMMON IN THIS
POPULATION AND WE ARE GOING TO
DISCUSS SOME POTENTIAL
CHALLENGES TO THE
IMPLEMENTATION OF
INTERVENTIONS. OVER THE LAST
COUPLE DAYS WE HEARD WONDERFUL
INTERVENTIONS IN THE PREGNANT
POPULATION BUT UNFORTUNATELY WE
ARE NOT THERE YET IN TERMS OF
SLEEP.
BUT THIS IS AN OPPORTUNITY AS I
WILL PRESENT.
NEXT.
AS YOU CAN SEE AND HEAR THERE
ARE MANY CHANGES THAT HAPPENED
IN PREGNANT POPULATION, FROM
SCHEMES FROM SLEEP ARCHITECTURE
TO SLEEP DISTURBANCES. IN WOMEN
OF REPRODUCTIVE STAGE AFTER
SLEEP ON SET IS HIGHER RED
BLOOD CELLER EM SLEEP DECREASES
SOMETIMES IN LATER PREGNANCY.
TOTAL SLEEP TIME CHANGES AND
NUMBER OF NAPS INCREASES IN
PREGNANCY AND DISRUPTIONS
HAPPEN FOR MANY REASONS.
NEXT.
SO YOU CAN SEE IN THIS TABLE
HOW THERE ARE DISRUPTIONS THAT
HAPPEN IN EARLY PREGNANCY, LIKE
NOCTURIA, MUSCULAR DISCOMFORT
AND FETAL MOVEMENT AND UTERINE
CONTRACTIONS AND HEARTBURN.
SO SLEEP QUALITY AND DURATION
AND EFFICIENCY CHANGE IN
PREGNANCY, COMPARED TO
NON-PREGNANT WOMEN, PREGNANT
INDIVIDUALS ARE 2-3 TIMES MORE
LIKELY TO PRESENT WITH ABNORMAL
SLEEP DURATION, MORE LIKELY TO
HAVE EXCESSIVE DAYTIME
SLEEPINESS AND LOWER SLEEP
EFFICIENCY.
WE WILL HEAR ABOUT THIS LATER
BUT COMPARED TO PRIOR TO
PREGNANCY, SLEEP TIMING CHANGES
IN COURSE OF PREGNANCY AND
CHAINSINGS BACK.
AND POOR SLEEP QUALITY IMPACTS
ABOUT HALF OF ALL PREGNANCIS.
NEXT.
SLEEP DISORDERS ALSO INCREASE
IN PREGNANCY.
NEXT.
INSOMNIA, FOR INSTANCE MIGHT
IMPACT UP TO 50% BY LATE JESS
STATION, RESTLESS LEG SYNDROME.
AND SLEEP DISORDER BREATHING,
THE PREVALENCE IS SOMEWHERE
BETWEEN 4-9% IN LOWER RISK
POPULATIONS BUT WHEN WE START
TO LOOK AT COMPLICATED
PREGNANCIES, SLEEP DISORDER
BREATHING IS A VERY COMMON
DISORDER THAT MIGHT IMPACT
THESE PREGNANCIS. NEXT.
THERE ARE ALSO SOME RACIAL AND
ETHNIC DISPARITIES JUST LIKE
MANY OTHER ASPECTS OF DISORDERS
IN MEDICINE.
SLEEP DURATION AND DISTURBANCES
ARE ALSO IMPACTED DIFFERENTLY
BY DIFFERENT RACES AND
ETHNICITY.
YOU CAN SEE IN THE BLACK BARS
THAT REPRESENT BLACK WOMEN.
BLACK WOMEN SEEM TO REPORT MORE
SHORTER SLEEP.
THEY HAVE MORE TROUBLE FALLING
ASLEEP.
AND THEY HAVE MORE
NON-REFRESHING SLEEP.
THESE ARE DATA FROM THE
NATIONAL DATA HEALTH INTERVIEW
SURVEY THAT SURVEYED MORE THAN
2,000 WOMEN.
NEXT.
SLEEP DISORDERS AND
DISTURBANCES ARE ASSOCIATED
WITH ADVERSE OUTCOMES.
WE JUST HEARD FROM SHILPY
BRIEFLY ABOUT THIS.
NEXT.
MANY SLEEP DISORDERS HAVE BEEN
ASSOCIATED WITH VARIOUS
IMPORTANT PREGNANCY OUTCOMES.
WE AND OTHERS HAVE DEMONSTRATED
AN ASSOCIATION BETWEEN SLEEP
DISORDER BREATHING AND HYPER
TENSIVE DISORDERS OF PREGNANCY.
OTHER SLEEP DISORDERS LIKE
SHORT SLEEP DURATION HAS BEEN
ASSOCIATED WITH HIGHER BLOOD
PRESSURE NUMBERS, SLEEP
DISORDER BREATHING, LATER SLEEP
TIMING, EVEN EXPOSURE TO BLUE
LIGHT HAVE BEEN ASSOCIATED WITH
HIGHER -- WITH MORE IMPACTED
GLUCOSE METABOLISM AND HIGHER
RATES OF GESTATIONAL DIABETES.
SLEEP DISORDER BREATHING AND
INSOMNIA HAVE BEEN ASSOCIATED
WITH SEVERE MATERNAL MORBIDITY.
CARDIOVASCULAR IS ALSO IMPACTED
BY SLEEP DISORDER BREATHING AND
WE HAVE DEMONSTRATED EVEN IN
WOMEN THAT HAVE PREECLAMPSIA,
THEY HAVE HIGHER CARDIOVASCULAR
MORE BIDITY AND HEALTHCARE
UTILIZATION.
MANY HAVE BEEN ASSOCIATED WITH
DEPRESSIVE SYMPTOMS.
SHORT SLEEP DURATION AND SLEEP
DISORDER BREATHING HAVE BEEN
ASSOCIATED WITH HIGHER RATES OF
CAESARIAN DELIVERIES AND SLEEP
DISORDER BREATHING ASSOCIATED
WITH HIGHER RATE ICU ADMISSIONS
IN POPULATION-BASED STUDIES.
NEXT.
SO SLEEP SAY MODIFIABLE RISK
FACTOR, COMPARED TO OTHER RISK
FACTORS FOR DISORDERS SUCH AS
PREECLAMPSIA, FOR EXAMPLE.
WE CAN MODIFY SLEEP TO IMPROVE
PREGNANCY OUTCOMES.
NEXT.
THERE ARE SOME SLEEP
INTERVENTIONS THAT HAVE BEEN
TESTED IN PREGNANCY.
THIS IS A SYSTEMATIC REVIEW
THAT LOOKED AT
NON-PHARMACOLOGICAL
INTERVENTIONS, AIMED AT
IMPROVING SLEEP IN THE COURSE
OF PREGNANCY.
NEXT.
AND IT SHOWED THERE WERE 16
STUDIES, THAT WAS BACK IN 2020,
THERE HAVE BEEN A FEW MORE
SINCE.
SOME HAVE TO DO WITH COGNITIVE
BEHAVIORAL THERAPY AIM AT
INSOMNIA, VERY FEW ABOUT
PHARMACOTHERAPY, UNDERSTANDABLY.
AND THEN OTHER INTERVENTIONS
SUCH AS MINDFULNESS AND YOGA.
INTERVENTIONS AIMED AT
IMPROVING INSOMNIA HAVE SHOWN
IMPROVEMENT SCORES COMPARED TO
CONDROLL AND THEN QUICKER AND
MORE COMMON RESOLUTION OF
INSOMNIA.
FROM IMPLEMENTATION SCIENCE,
EVEN THOUGH WE DON'T HAVE A LOT
OF SCIENCE THERE YET, THERE
HAVE BEEN SOME SCALABLE
INTERVENTIONS THAT HARNESS
TECHNOLOGY, INCLUDING TEXT
MESSAGES OR TELEHEALTH
INTERVENTIONS THAT HAVE
HAPPENED IN CANADA AND IN
AUSTRALIA THAT HAVE SHOWN IN
SIGNIFICANT IMPROVEMENT IN
INSOMNIA SEVERITY AND PROVIDED
GLIMPSE INTO NOVEL WAY DLOEFRZ
SLEEP INTERVENTIONS. THIS IS A
META-ANALYSIS THAT PRESENTED AT
APSS LED BY BILL.
CPAP IS THE MAIN STAY TREATMENT
FOR SLEEP DISORDER BREATHING
AND FIRST LINE THERAPY.
AS LONG AS TWO DECADES AGO,
THERE HAVE BEEN SOME DATA THAT
RANDOMIZED PREGNANT WOMEN WITH
PREECLAMPSIA, FOR THE TREATMENT
OF CPAP THAT WOMEN WITH
PREECLAMPSIA HAD A LOT OF UPPER
AIRWAY OBSTRUCTION DURING SLEEP
AND THAT CPAP WAS GOING TO
IMPROVE THAT.
TWO DECADES LATER WE HAVE A
TRIAL THAT HAS RANDOMIZED ABOUT
170 OR SO PEOPLE WITH SLEEP
DISORDERED BREATHING DURING
PREGNANCY FOR THE DURATION OF
PREGNANCY, NOT JUST ONE NIGHT.
SYSTOLIC BLOOD PRESSURE WAS
ACTUALLY BETTER IN THE GROUP
THAT WAS RANDOMIZED.
THE TWO GROUPS WAS ACTUALLY
LARGER.
NEXT.
SO THIS SPEAKS ABOUT ADHERENCE,
OBVIOUSLY.
THAT'S WHY WE HAVE SUCH A BIG
DIFFERENCE BETWEEN PER PROTOCOL
AND INTENTION TO TREAT ANALYSES.
CPAP ADHERENCE IS A MAJOR ISSUE
IN THIS POPULATION AND THERE
ARE SOME RANDOMIZED STUDIES
THAT REPORTED AN ADHERENCE OF
ONLY 4%.
IN ALL OF THE STUDIES THAT HAVE
BEEN PUBLISHED TO DATE, NOT
THAT MANY, LESS THAN 50% OF
WOMEN ARE ADHERE ANT BASED ON
SE PIXER A BASED, SOME USE FOR
LESS THAN 30 MINUTES TO ABOUT
THREE AND A HALF HOURS.
CBT-I64%, 80% IN PERSON OR
TELEHEALTH AND 64% FOR DIGITAL
INTERVENTIONS. I SEE MINIMAL
SAFETY DATA ON MANY FIRST LINE
DRUGS THAT ARE USED TO TREAT.
THAT'S MAINLY BECAUSE PREGNANT
WOMEN SEEM TO BE SYSTEMATICALLY
EXCLUDED FROM MANY DRUG TRIALS.
THERE ARE ALSO SOME RACIAL
DISPARITIES THAT EXIST IN
TREATMENT UP TAKE OF SLEEP
INTERVENTIONS EVEN WHEN WE
STANDARDIZE ACCESS TO THESE
INTERVENTIONS THROUGH PROTOCOL
AND HAVE INDIVIDUAL
PARTICIPANTS ACCESS IT FOR FREE.
QUESTION STILL SEE IN RACIAL
DISPARITIES IN THIS.
NEXT.
SO FACTORS THAT INFLUENCE
TREATMENT OF SLEEP DISSERBANCES
IN PREGNANCY CAN BE DIFFERENT
LEVELS.
THERE ARE MULTIPLE LEVELS,
COULD BE SYSTEM LEVEL FACTORS
THAT ARE KEY WITH ACCESS TO
CARE AND APPROPRIATE CARE BEING
SIGNIFICANT ISSUES. IF WE THINK
ABOUT SCREENING POPULATIONS
2004 SLEEP DISORDERS AND THEN
OFFERING THEM APPROPRIATE
TESTING FOR SOME DISORDERS AND
THEN STARTING TREATMENT THAT IS
VERY CHALLENGES WHEN A
SIGNIFICANT PERCENTAGE OF
PREGNANT INDIVIDUALS EXPERIENCE
SLEEP DISTURBANCES AND
PREGNANCY IS LIMITED BY THIS
SHORT PERIOD OF TIME COMPARED
TO THE NON-PREGNANT POPULATION.
SO THE FACT DURATION BETWEEN
EXPOSURE TO SLEEP DISORDERS AND
OUTCOME OF PREGNANCY IS SO
CONTRACTED COMPARED TO THE
GENERAL POPULATION PLACES AN
ADDITIONAL BURDEN TO IMPLEMENT
INTERVENTIONS IN A TIMELY
MANNER.
FURTHER IN MANY PLACES IN U.S.
THERE IS A PAUSITY OF SLEEP
CLINICIANS BOTH MEDICAL
CONDITIONS AND BEHAVIORAL
CONDITIONS AND THAT ADDS TO THE
CHALLENGES OF IMPLEMENTING THE
MANAGEMENT OF SLEEP DISORDERS.
WE ALSO NEED TO RETHINK OUR
CARE DELIVERY METHODS AND THINK
MORE INNOVATIVELY ABOUT HOW TO
REACH POPULATIONS THAT ARE MOST
IN NEED AND NOT JUST LIMITING
TO PRENATAL PRACTICES.
AT THE INDIVIDUAL LEVEL WE
HEARD QUITE A BIT YESTERDAY
ABOUT THE IMPORTANCE OF
CONSIDERING SOCIAL DETERMINANTS
OF HEALTH INTO CARE BUT WE ALSO
NEED TO CONSIDER HOW GENDER AND
THE RESPONSIBILITIES THAT
GENDER ENTAILS PLAY A ROLE IN
SLEEP AND SLEEP CHALLENGES, AS
SLEEP MANAGEMENT HAS TO DO WITH
NIGHTTIME CHORES FOR INSTANCE
AND THE GENDER ROLE LEAVES THAT
TO THE PREGNANT OR THE MOTHER,
MOST OF THE TIME.
AND CAN COMPLICATE THINGS.
PREGNANCY ITSELF ALSO PRESENTS
A UNIQUE CHALLENGE, SLEEP
MANAGEMENT ISN'T OFTEN OFFERED
WITHIN PRENATAL CARE AND
OBSTETRIC PRACTICES ARE THE
NORM IN MOST PLACES.
AS PRENATAL CARE REQUIRES
FREQUENT VISIT IT'S CAN PRESENT
A CHALLENGE TO ADD ADDITIONAL
VISITS OUTSIDE OF THESE ROUTINE
PRENATAL ONES BUT IT CAN ALSO
PRESENT AN OPPORTUNITY GIVEN
THE FREQUENT CONTACT WITH A
HEALTHCARE PROVIDER.
SO WE CAN EMBED AND PRIORITIZE
SLEEP MESSAGING AROUND AND
WITHIN PRENATAL CARE AND BEING
CAREFUL ABOUT THE ASSUMING
NORMAL PREGNANCY PHYSIOLOGY IS
THE MAIN DRIVER FOR ALL THE
SLEEP SYMPTOMS THAT PREGNANT
WOMEN REPORT.
THEN FINALLY THERE ARE SOME
BARRIERS SURROUNDING TREATMENT
THAT THE SIMILAR GENERAL
POPULATION EXPERIENCES WHILE
OTHER IT'S SPECIFIC TO
PREGNANCY.
THE DEMANDS AND EXPECTATIONS
AROUND BEING PREGNANT THAT MAY
PLAY A ROLE.
THERE ARE ALSO SOME BARRIERS
THAT ARE COMMON TO PREGNANT AND
NON-PREGNANT INDIVIDUALS BUT
THOSE ARE EXACERBATED BY
PREGNANCY.
NEXT.
I PRESENT HERE DATA FROM A
QUALITATIVE STUDY THAT WE
RECENTLY COMPLETED THAT LOOKED
AT PREGNANT AND NON-PREGNANT
REPRODUCTIVE AGE INDIVIDUALS,
ASKING THEM ABOUT THEIR
EXPERIENCE WITH CPAP DURING
PREGNANCY.
THESE ARE INDIVIDUALS THAT WERE
DIAGNOSED IN THE COURSE OF
PREGNANCY OR DIAGNOSED WITHIN
4-8 WEEKS AND WE IDENTIFIED
SOME BARRIERS AND SOME
FACILITATORS TO TREATMENT.
SOME OF THEM WERE COMMON TO
PREGNANT AND NON-PREGNANT
INDIVIDUALS BUT SOME ARE
OBVIOUSLY SPECIFIC TO PREGNANCY
AND THEY HELP US CUSTOMIZE
TREATMENT INTERVENTIONS TO THIS
POPULATION.
SO, FOR INSTANCE, PREGNANCY AND
FETAL HEALTH WERE POSITIVE
MOTIVATORS FOR THE USE OF CPAP
IN PREGNANCY.
WOMEN THAT WERE PREGNANT
DEMONSTRATED SOME CONCERN FOR
THEIR OWN HEALTH AND THIS COULD
BE IN THE CONTEXT OF THIS
FREQUENT INTERACTION WITH THE
HEALTHCARE SYSTEM AND
HEALTHCARE PROVIDERS THAT MAKES
THEM MORE AWARE AND MORE
COGNIZANT OF THE IMPORTANCE OF
THEIR OWN HEALTH.
PARTNERS HAVE PLAYED A ROLE
BOTH AS FACILITATORS AND AS
BARRIERS IN DIFFERENT CONTEXTS.
THE TRUST IN THE PROVIDER SEEM
TO BE A FACILITATOR TOWARD THE
USE OF CPAP WHERE, WHEN A
PERSON SAID THEY TRUSTED THE
ADVICE THE PROVIDER HAS GIVEN
THEM, THEY WERE SAYING THEY
WERE MORE LIKELY TO USE THEIR
CPAP.
WHEREAS OTHERS THAT HAVE
RECEIVED SOME DIFFERENT
MESSAGES FROM THE HEALTHCARE
SYSTEM IN GENERAL SEEM TO BE
LESS LIKELY TO PRIORITIZE CPAP
USE.
CPAP COMPLEXITY SEEMS TO BE ONE
OF THE ISSUES, ESPECIALLY IN A
BUSY LIFE WHEN THERE ARE SO
MANY DEMANDS, FROM A MEDICAL
STANDPOINT TO FOLLOW-UP FOR
VISITS DURING PREGNANCY AND
PRIORITIZE CARE AS WELL.
COSTS CONCERNS WERE OBVIOUSLY A
BARRIER AS WELL TO THIS.
AND INTIMACY SEEMS TO COME UP
QUITE OFTEN AS WELL.
SO MANY GAPS REMAIN.
UNFORTUNATELY WE DON'T HAVE AS
MANY SOLUTIONS FOR IMPROVING
SLEEP IN THIS POPULATION.
BUT THIS PRESENTS A REALLY BIG
OPPORTUNITY FOR US TO DO SO.
WE NEED TO UNDERSTAND HOW AND
WHETHER SLEEP INTERVENTIONS
COULD AMELIORATE SHORT-TERM AND
LONG-TERM SLEEP MENTAL HEALTH
AND HEALTH OUTCOMES, NOT JUST
FOR THE PREGNANT INDIVIDUAL BUT
FOR THEIR FAMILIES AS WELL AND
THEIR RELATIONSHIP WITH THEIR
OWN CHILDREN.
WE NEED TO DEVELOP SOME
CUSTOMIZED AND CULTURALLY
APPROPRIATE INTERVENTIONS THAT
MEET THE NEEDS OF PARENTS AND
COUPLES AND YOUNG FAMILIES
WHILE REDUCING DISPARITIES AND
INEQUITIES.
SO WE NEED TO MAKE SURE WE ARE
ADDRESSING THE NEEDS OF ALL OF
THESE POPULATIONS AND
DISCUSSIONS AROUND COMMUNITY
ENGAGEMENT AND PARTNERING WITH
PEOPLE THAT ARE CLOSEST TO THE
PAIN AS MENTIONED YESTERDAY
WOULD LIKELY GIVE US THE
BIGGEST BANG FOR OUR BUCK IN
TERMS OF IDENTIFYING SOLUTIONS.
THEN WE ALSO NEED TO FOCUS
INTERVENTIONS IN THE POST
PARTUM PERIOD.
WE DON'T HAVE A LOT OF
INTERVENTIONS DURING THAT
PERIOD OF TIME.
NEXT, I WOULD LIKE TO END THIS
BY THANKING THE TEAM.
YOU WON'T MENTION EVERYONE AND N
HLBI AND NIH IN GENERAL FOR THE
INVITE AND FUNDING OUR RESEARCH.
AND NOW I WILL PASS THIS TO DR.
ENGLAND TO SPEAK ABOUT SLEEP
AND CIRCADIAN RHYTHMS AFFECTING
MATERNAL AND FETAL HEALTH.
>> SARA ENGLAND: THANK YOU.
WORK WE HAVE BEEN DOING THE
LAST 3-4 YEARS LOOKING AT SLEEP
AND CIRCADIAN RHYTHMS AS THEY
AFFECT MATERNAL AND FETAL
HEALTH.
NEXT SLIDE, PLEASE.
THE STUDY ACTUALLY STARTED
BECAUSE WE WERE VERY INTERESTED
IN RISK FACTORS LEADING TOO
PRE-TERM BIRTH, THIS IS REALLY
INTO THREE CATEGORIES, MODERATE
TO LATE PRETERM BIRTH, 32-37
WEEKS.
VERY EARLY IS 28-32 WEEKS AND
EXTREMELY EARLY PRETERM BIRTH,
BEFORE 28 WEEKS, WITH MORE
NIC-U'S BEING ABLE TO KEEP THE
BABIES ALIVE FROM ABOUT 21 TO
22 WEEKS.
AS YOU CAN IMAGINE THIS IS THE
NUMBER ONE CAUSE OF DEATH OF
BABIES IN THE UNITED STATES AND
ASSOCIATED WITH HIGH RATES OF
BOTH SHORT AND LONG-TERM HEALTH
COMPLICATIONS DUE TO THE UNDER
DEVELOPMENT OF THE KIDS.
SO RIGHT NOW THE RATE OF
PRE-TERM BIRTH IN THE UNITED
STATES IS APPROXIMATELY 10% BUT
THIS IS CONTINUING TO ACTUALLY
RISE AS THERE WAS A STAGNATING
TIME FOR A WHILE BUT STARTING
TO RISE.
THERE WAS REALLY A VERY HIGH
DEGREE OF HEALTH DISPARITIES IN
THE RATES OF PRE-TERM BIRTH.
NEXT.
THIS CAN BE HIGHLIGHTED IN AREA
IN WHICH OUR HOSPITAL SYSTEM IS
LOCATED.
SO IF YOU LOOK AT THE RATES OF
PRE-TERM BIRTH BY ZIP CODE IN
ST. LOUIS COUNTY, WHAT YOU CAN
SEE IS IN THE NORTH PART OF THE
COUNTY WITH A LOT OF SOCIAL
DISADVANTAGE, THE RATES ARE
ABOUT 15-25%.
HOWEVER, IF YOU GO ABOUT EIGHT
MILES SOUTH TO WHERE THE
HOSPITALS ARE LOCATED, THESE
RATES ARE MUCH LOWER.
SO BETWEEN JUST IN EIGHT MILES
YOU CAN SEE THE SUBSTANTIAL
DIFFERENCE SUGGESTING THAT THIS
IS POSSIBLY SOMETHING THAT WE
CAN ACTUALLY ADDRESS, IF WE
LOOK A LITTLE BIT DEEPER INTO
WHAT FACTORS ARE DRIVING THE
DISPARITIES BETWEEN THESE TWO
AREAS. NEXT SLIDE.
SO PRE-TERM BIRTH IS INCREDIBLY
COMPLEX.
THERE ARE MULTIPLE PATHWAYS
THAT LEAD TO PRE-TERM BIRTH.
INFLAMMATION AND INFECTION IS
ONE CLEAR PATHWAY AS WELL AS
MATERNAL AND FETAL STRESS,
ABNORMAL UTERINE DISTENTION.
BUT THERE ARE ALSO FACTORS THAT
INTERSECT WITH THESE PATHWAYS
INCLUDING GENETICS, IMMUNE
STATUS, MEDICAL CONDITIONS,
EXTERNAL ENVIRONMENT, PSYCHO
SOCIAL FACTORS BUT ALSO
BEHAVIORAL OUTCOMES WE ARE
INTERESTED IN.
ALSO, THESE OUTCOMES THAT COME
BETWEEN THESE INTERSECTION AND
FACTORS LEADINGING TO PRETERM
BIRTH COULD BE INTRA UTERINE,
GROWTH RESTRICTION, PRE-TERM
LABOR AND THEN DISPARITY WE ARE
SEING IN OUR AREA.
WE THOUGHT ARE THERE POLICIES
AND THINGS WE COULD INTERVENE
ON THAT WOULD IMPROVE THESE
RATES?
AND ARE THERE ANY ORIGIN
REGULATORS WE COULD CONSIDER
FOR INTERVENTION?
NEXT SLIDE.
SO, WE LOOK BACK AT THE
LITERATURE AND LOOKED AT
DELIVERIES.
THIS WAS COLLABORATION BETWEEN
ME AND ERIC HERZOG, FAY AND
EMILY YOUNGHEIM.
THIS WAS A STUDY DONE BY KAISER
AND HALBERG IN 1962 BEFORE
THERE WERE A LOT OF
INTERVENTIONS. LOOKING AT OVER
600,000 DELIVERIES THERE WERE
ACTUALLY A DAILY RHYTHM WHEN
BIRTHS OCCURRED, AROUND 2:00
A.M.-6:00 A.M., AND THIS
DECREASED IN THE P.M. HOURS
FROM 2:00 P.M. TO 6:00 P.M.
SO WE WERE INTERESTED IN THE
KIND OF DAILY RHYTHM WHICH
DELIVERIES OCCURRED.
NEXT SLIDE.
WE WERE INTERESTED IN CIRCADIAN
RHYTHMS WHICH IS A 24-HOUR
PERIOD THAT MOST OF OUR CELLS
UNDER GO.
THEY HELP REGULAR SLEEP/WAKE
CYCLES, HORMONE RELEASE, ET
CETERA.
THERE'S A TIME OF THE DAY OUR
BLOOD PRESSURE IS THE HIGHEST,
WE HAVE THE LOWEST BODY
TEMPERATURE, WHEN CORTISOL IS
RELEASED AND WE WERE REALLY
INTERESTED IN THE INTERSECTION
BETWEEN THESE DAILY RHYTHMS AND
ADVERSE REPRODUCTIVE OUTCOMES.
WE ALL HAVE A CROHN TYPE OR
PREFERENCE WHEN OUR SLEEP/WAKE
ACTIVITY OCCURS.
MANY OF US ARE EARLY BIRDS,
PREFER TO GET UP FROM 5:00-060
A.M. SO OUR SLEEP PRESSURE IS
ACTUALLY PRETTY HIGH IN THE
EARLY PART OF THE NIGHT VERSUS
THOSE NIGHT OWLS WHO LIKE TO GO
TO BED AT 1:00 TO 2:00 A.M. AND
THEN HAVING SLEEP PRESSURE MORE
TOWARDS THE EARLY MORNING HOURS.
THIS IS INFLUENCED BY NUMBER OF
FACTORS INCLUDING GENETICS, AGE
AND SEX.
SO WE WERE INTERESTED IN NOT
JUST WHEN YOU SLEEP BUT HOW YOU
SLEEP.
THERE IS MISALIGNMENT IN OUR
BIOLOGICAL RHYTHM JUST DUE TO
THE FACT MOST OF US HAVE TO GO
TO WORK AND BE SOMEWHERE IN A
CERTAIN TIME.
BUT THERE'S ENVIRONMENTAL
NAKTORS SUCH AS SHIFT WORK AND
CONSTANTLY CHANGING YOUR
SCHEDULE THAT ALSO PLAY INTO
THIS.
SO AS WE HAVE SPOKEN ABOUT
GYAYADA, WE WERE INTERESTED IN
LOOKING AT THIS IN PRE-TERNL
BIRTH.
NEXT SLIDE.
WHEN WE FIRST SET UP OUR STUDY
WE WANTED A PILOT COHORT TO SEE
IF CIRCADIAN RHYTHMS
CHAINSINGED WITH PREGNANCY.
WE LOOKED AT A COHORT OF
PREGNANCY PLANNERS. THEY WERE
NOT GETTING TREATMENT, HOWEVER,
THEY WERE BEING WATCHED.
WE GAVE THEM A HOST OF SLEEP
QUESTIONNAIRES, CROHN TYPE
QUESTIONNAIRES AS WELL AS
LIFESTYLE SURVEYS. WE ALSO HAD
AN ACTIVE WATCH CAMERON TECH
WHICH ALLOWED US TO GET DATA
DUE TO ITS BATTERY LIFE FOR AN
EXTENDED PERIOD OF TIME.
AGAIN, WE HAD THEM WEAR THE
WATCH FOR TWO WEEKS, WHEN THEY
WERE PLANNING THEIR PREGNANCY
BUT WEREN'T PREGNANT.
WE LOOKED AT THEM EACH
TRIMESTER.
AGAIN WE WERE TRYING TO SEE IF
CROHN TYPE CHANGED WITH
PREGNANCY.
NEXT SLIDE.
SO WHAT WE FOUND THIS IS AN
ACTIVITY GRAPH OF ONE OF OUR
PATIENTS.
WHAT YOU CAN SEE AT THE TOP IS
THAT SHE WORE THE WATCH FOR TWO
WEEKS WHEN SHE WAS NOT PREGNANT.
WHEN SHE GOT PREGNANT, SHE CAME
IN, THAT'S THE GAP IN LINE, THE
BREAK.
WE WATCHED HER ACTIVITY DURING
THE FIRST, SECOND AND THIRD
TRIMESTER.
THE BLACK TICKY LINES ARE
ACTUALLY HER ACTIVITY.
THE DARK BLACK LINE IS WHEN SHE
WENT TO BED, THE GREEN LINE IS
HER SLEEP PERIOD START TIME.
CAN SEE THE SLEEP PERIOD START
TIME ADVANCED IN THE FIRST
TRIMESTER WHEN SHE WAS PREGNANT.
WE TRIED TO GET MID SLEEP PHASE
BUT MOST OF OUR POPULATION
ACTUALLY HAD JOBS AND GOT UP AT
THE SAME TIME.
WE USE THIS AS A MEASURE OF
CHRONOTYPE.
START TIME WERE EARLIER IN THE
FIRST AND SECOND TRIMESTER.
MINIMAL CHANGE IN THE SLEEP
TIMES DUE TO THE FACT THAT MOST
OF THEM WERE WORKING.
IN IN THIS STUDY CHARACTERIZED
BY NOT ONLY EARLIER SLEEP
PERIOD START TIMES BUT LONGER
SLEEP DURATION AND POORER SLEEP
QUALITY THAN IN PRE-PREGNANCY.
NEXT SLIDE.
BUT WHEN WE LOOKED AT OUTCOMES
OF THE WOMEN, WHAT WE ALSO
FOUND WAS THAT THOSE THAT HAD
HIGH DEGREE OF VARIABILITY, IT
TOOK THEM LONGER TO GET
PREGNANT.
WHAT YOU CAN SEE HERE IS WE
TOOK THIS PILOT COHORT AND THEN
WE LOOKED AT THEIR DAY-TO-DAY
VARIABILITY AND SLEEP-PERIOD
START TIME.
SO THE FIRST QUARTILE ARE MOST
REGULAR CHANGED THEIR
DAY-TO-DAY BEDTIME.
THE FOURTH LEAST REGULAR AND
MOST OF THEM CHANGED THEIR
DAY-TO-DAY VARIABILITY BY ABOUT
TWO AND A HALF HOURS. LITTLE
OVER 60% OF THEM WERE PREGNANT.
OVER THOSE IN THE FOURTH
QUARTILE HAD A HIGH DEGREE OF
VARIABILITY ONLY ABOUT 10-12%
WERE PREGNANT AFTER SIX MONTHS.
AFTER ADJUSTING FOR AGE, BMI,
RACE, EDUCATION AND INCOME, ALL
THINGS ASSOCIATED WITH TIME TO
PREGNANCY.
NEXT SLIDE.
SO OUR STUDY WAS REALLY
INTERESTED IN PRE-TERM BIRTH.
AGAIN, WE LOOKED AT WHETHER
DISRUPTION OR CHRONO DISRUPTION
WAS ASSOCIATED WITH POOR
PERINATAL OUTCOMES.
WE RECRUITED ANY WOMEN WHO CAME
IN PRIOR TO 20 WEEKS WAS
ENROLLED, COULD BE ENROLLED IN
OUR STUDY.
BUT WE GOT MOST OF THE
PARTICIPANTS IN THE FIRST,
SECOND AND THIRD PRIME.
-- TRIMESTER.
NEXT SLIDE.
SO I JUST WANTED TO SAY THIS
WAS REALLY A VERY COMPREHENSIVE
STUDY BECAUSE NOT ONLY, IT
WASN'T SLEEP STUDY, IT WAS
REALLY STRESS SCALES,
CHRONOTYPE QUESTIONNAIRES.
RUSSELL SLAY KAISER PHYSICAL
ACTIVITY BUT ALSO INVOLVED IN
OTHER PARTS OF THE STUDIES
INCLUDING CERVICAL IMAGING,
UTERINE MRI AND BIOLOGICAL
SAMPLES AND TIME STAMPED FOR US
TO COMPLETE THE STUDY AND I
WANT TO THANK THE DIVISION OF
CLINICAL RESEARCH WHO RECRUITED
ALL OF THESE PARTICIPANTS.
NEXT SLIDE.
SO THE DEMOGRAPHICS OF OUR
STUDY WERE RESEMBLED IN OUR
POPULATION, I'M ONLY SHOWING
THOSE INCLUDED IN THE ANALYSIS
HERE.
OUR AVERAGE AGE WAS ABOUT 30,
MOST OF THEM WERE PRIVATE
INSURANCE BUT WE STILL HAD
ABOUT 25% ON MEDICAID.
ABOUT 50% OF THEM HAVE AN
INCOME OF $50,000 OR LESS AND
ABOUT 60% HAVE A HIGH SCHOOL
EDUCATION OR LESS.
NEXT SLIDE.
SO WHAT WE NOTICED IS WE LOOKED
AT CHRONOTYPE FIRST.
THOSE WHO HAVE A LATE
CHRONOTYPE, THOSE WHO GOT UP
LATER HAVE A SHORTER
GESTATIONAL LINKS. SO IF YOU
LOOK AT INNER DAILY SLEEP
VARIABILITY, OF SLEEP ON
SET/OFFSET MID TIME IN
DURATION, WHAT WE COULD SEE IS
THOSE WHO HAVE A LOW DAILY
VARIABILITY IN THE LATE
CHRONOTYPES WERE ACTUALLY WHO
HAVE A HIGH VARIABILITY IN THE
LATE CHRONOTYPES WERE MORE
SIGNIFICANTLY HAD A SHORTER
GESTATION AS YOU CAN SEE BY THE
RED LINES.
THIS WAS SEEN IN BOTH THE SLEEP
ON SET, SLEEP OFFSET, SLEEP MID
TIME AND SLEEP DURATION.
SO THIS WAS ASSOCIATED WITH
PRE-TERM BIRTH.
WHEN HE BROKE THE QUARTILES TO
THE FIRST VERSUS THE THIRD
QUARTILE, WE COULD SEE THE
RELATIVE RISK WAS A LITTLE OVER
TWO.
WHEN WE ADJUSTED FOR MATERNAL
AGE, INCOME, WE COO SEE THIS
WAS ABOUT 1.5 WITH STRONGER
FINDINGS FOR GESTATIONAL AGE
LESS THAN 34.
NEXT SLIDE.
WE ARE JUST TRYING TO FIGURE
OUT NOW WHAT IS ASSOCIATED WITH
PRE-TERM BIRTH.
WHEN WE LOOKED AT SLEEP
ACTIVITY, SLEEP FREQUENCY, THAT
THE RELATIVE RISK FOR HAVING A
PRE-TERM BIRTH BEFORE 28 WEEKS
WAS DEFINITELY HIGHER IN THOSE
WHO HAD ACTIVITY IN THE SLEEP
CYCLE, AS SHOWN BY THE DARKER
BARS, UNDER 28 WEEKS.
NEXT SLIDE.
WHEN WE LOOKED AT THE SLEEP
PARAMETERS ASSOCIATED WITH
THIS, IT WAS REALLY SLEEP
DURATION THAT THOSE WHO HAD THE
RELATIVE RISK FOR EARLY PRETERM
BIRTH OR EXTREMELY PRE-TERM
BIRTH WAS THOSE WHO HAD VERY
SHORT SLEEP DURATION.
BUT WHERE WE SAW THE BIGGEST
INDICATION -- NEXT SLIDE.
WAS JUST DUE TO THE VARIABILITY.
SO YOU WERE AT A MUCH HIGHER
RISK FOR AN EARLY PRE-TERM
BIRTH IF YOU HAVE A LOT OF
DAILY VARIABILITY IN YOUR SLEEP
SCHEDULES, WHETHER IT BE YOUR
SLEEP/START TIME, YOUR MIDPOINT
OR SLEEP DURATION.
NEXT SLIDE.
I JUST WANTED TO POINT OUT WE
NOTICED THIS ALSO BECAUSE OUR
WATCHES HAD A LIGHT MEET UR.
AND WHEN WE LOOKED AT THE TERM
PATIENTS AND LOOKED AT THE
MOTION COUNTER AND THERE WAS
IRREGULARITY IN THE PATTERN,
WHEN WE LOOK AT PRE-TERM BIRTH
PATTERNS THEY LOOK LIKE THEY
HAVE ABSOLUTELY NO KIND OF
REGULARITY AND THEIR LIGHT
EXPOSURE, WHICH ALSO IS SHOWN
IN THEIR ACTIVITY EXPOSURE.
WE ARE CONTINUING TO LOOK AT
THIS LIGHT DATA TO SEE WHAT
THIS TELLS US ABOUT THE PATIENT
POPULATION AND WHAT THEY ARE
SEEING AND THEIR ENVIRONMENTAL
EXPOSURES AND MAYBE SOME
BEHAVIORAL MODIFICATIONS WE CAN
MAKE.
NEXT SLIDE.
SO THIS IS JUST REPEATING WE
SAW AS THE REGULAR LIGHT
PATTERN.
WHAT WE CAN SEE IS THAT WE SAW
THIS IN ALL, IN MANY OF THE
PATIENTS, IF WE LOOK AT EXAMPLE
TO THE VERY RIGHT, THE REGULAR
PATIENTS ARE AT THE LOWER RED
BOX VERSUS THE IRREGULAR, WE
CAN SEE THE GESTATIONAL WEEKS
IS THOSE THAT ARE BEING BORN
VERY EARLY AND THOSE WHO ARE
ACTUALLY HAVING A PREGNANCY
LOSS HAVE VERY IRREGULAR LIGHT
SCHEDULES OR LIGHT EXPOSURE.
NEXT SLIDE.
WE NEED TO THINK
MECHANISTICALLY TO UNDERSTAND
STUDIES IN PATHWAYS, HOPEFULLY
WE CAN PROMOTE LIFESTYLE
CHANGES TO ALIGN OUR BIOLOGICAL
RHYTHMS TO OUR NORMAL
LIFESTYLES. AND WE HAVE TO
UNDERSTAND BETTER HOW SLEEP
DISPARITIES ARE ASSOCIATED WITH
DISPARITIES IN REPRODUCTIVE
OUTCOMES.
NEXT SLIDE.
THAT JUST HIGHLIGHTS WHAT I
JUST SAID.
AND NEXT SLIDE.
I WANT TO THANK EVERYBODY WHO
HELPED WITH THIS STUDY,
INCLUDING MY LAB AND MY
COLLABORATORS AND THE MARCH OF
DIMES AND NIH WHO HELPED FUND
THE STUDIES AND THE SLEEP
PARTICIPANTS.
THANK YOU VERY MUCH.
AND I THINK I WILL LEAVE IT TO
SUZIE BERTISCH.
>> THANK YOU FOR HAVING ME
SPEAK AT THIS CONFERENCE TODAY.
TODAY I WILL BE SPEAKING,
SORRY, MY SLIDES ARE GOING
AHEAD ON THEMSELVES.
TODAY I WILL BE SPEAKING ON
IMPLEMENTATION SCIENCE AND
APPROACHES AND KEY EXAMPLES IN
THE SLEEP LITERATURE, WRAP UP
WITH KEY POINTS TODAY AND I
THINK WE WILL GO INTO OUR
DISCUSSION.
NEXT SLIDE, PLEASE.
AS WE TALKED ABOUT THIS
CONFERENCE, ON IMPLEMENTATION
SCIENCE.
WE ARE TRYING TO BETTER
UNDERSTAND HOW WE TAKE WHAT WE
KNOW AND THIS HELPS BE SPECIFIC
ABOUT SLEEP TO WHAT WE DO AND
IMPLEMENTATION SCIENCE IS
REALLY THINKING ABOUT GIVING
US THE TOOLS TO DO THIS
RESEARCH.
AS ELUDED TO IN THIS PANEL,
WORK IN THIS AREA BUT IT'S VERY
NASCENT.
THE GOOD NEWS IS WE HAVE
INTERVENTIONS THAT TREAT A LOT
OF THE SLEEP DISRUPTIONS AND
SLEEP DISORDERS WE HEARD ABOUT.
MAYBE NOT ALWAYS SPECIFICALLY
TAILORED FOR THE EXACT
POPULATION BUT REALLY ROBUST
TREATMENTS THAT SEEM TO WORK
ACROSS DIFFERENT SLEEP
DISORDERS OR JUST SLEEP HEALTH
MORE GENERALLY.
I THINK TAKING A VIEW OF A
SNAPSHOT WHERE WE ARE IN SLEEP
IN GENERAL AT THIS TIME IS
HELPFUL, HOPEFULLY, AND TO
GUIDE FUTURE IMPLEMENTATION
SCIENCE, THINKING ABOUT SLEEP
INTERVENTIONS AND HOW WE GET
THEM TO PEOPLE.
THE IRONY IS EVERYBODY SLEEPS
BUT OUR FIELD IS STILL REALLY
NEW.
NASCENT IN LEARNING ABOUT HOW
DO WE ACTUALLY BRING THESE
TOOLS TO PEOPLE A LOT AT THE
CONFERENCE TALKED ABOUT HEALTH
EQUITY.
IT'S IMPORTANT TO STATE HOW
IMPLEMENTATION SCIENCE AND
HEALTH EQUITY AND DISPARITIES
ALIGN.
HEALTH EQUITIES IS DEFINED
EVERYONE HAVING A FAIR AND JUST
OPPORTUNITY TO BE AS HEALTHY AS
POSSIBLE.
THIS IS WHERE THE FIELDS ALIGN,
IN ORDER TO HAVE EVERYONE BE AS
HEALTHY AS THEY CAN BE REQUIRES
MOVING OBSTACLES IN THEIR WAY.
BOTH IMPLEMENTATION SCIENCE
RESEARCH AND DISPARITIES
RESEARCHERS HAVE A COMMON GOAL
MAKING SURE PEOPLE HAVE, NO
MATTER THE BEST OPPORTUNITY TO
RECEIVE THE HIGHEST QUALITY OF
CARE, AS GENERATED BY THE
RESEARCH EVIDENCE.
THIS INCLUDES GETTING
HEALTHCARE ACROSS DIFFERENT
CONTEXTS. CLINICAL SETTINGS,
COMMUNITY, EVEN SCHOOL SETTINGS
HAVE BEEN DONE SOMEWHAT IN THE
FIELD OF SLEEP.
NEXT SLIDE, PLEASE.
SO THIS IS JUST ONE EXAMPLE
FROM THE SLEEP LITERATURE.
IN 2016 THE AMERICAN COLLEGE OF
PHYSICIANS CAME OUT WITH
MANAGEMENT GUIDELINE FOR
CHRONIC INSOMNIA DISORDER IN
ADULTS, THIS IS ALL ADULTS.
THEY RECOMMEND ALL PATIENTS
RECEIVE COGNITIVE BEHAVIORAL
THERAPY FOR INSOMNIA.
THIS IS THE SAME TREATMENT THAT
DR. BOURJEILY TALKED ABOUT IN
HER TALK, EFFECTIVE TREATMENT
FOR INSOMNIA.
THE PROBLEM THERE'S NO GUIDE
BOOK HOW WE GET THIS TO PEOPLE.
MY FRIENDS AND I JOKE, WE HAD
OUR BABIES AND WE WERE WAITING
FOR A GUIDE BOOK HOW TO RAISE
THESE TINY HUMANS AS BEST AS
POSSIBLE.
NINE YEARS LATER I'M STILL
WAITING FOR THAT TOOL BOOK.
IT HASN'T ARRIVED YET.
IT'S VERY HARD TO UNDERSTAND
HOW TO TAKE THESE ELOQUENT
GUIDELINES AND ACTUALLY MAKE
THEM IN PRACTICE.
WE KNOW THAT GUIDELINES OF THE
SAME INTERVENTIONS, THAT
CONTEXT REALLY MATTERS AND
WHERE AND HOW WE DELIVER
COGNITIVE BEHAVIORAL THERAPY
REALLY WORKS.
WE NEED TO STOP THINKING ABOUT
A ONE SIZE FITS ALL APPROACH AND
BETTER UNDERSTAND HOW WE GET
THE CONTEXT IN WHICH WE ARE
DELIVERING IT.
SO HOW DO WE THINK ABOUT
REMOVING BARRIERS, NEXT SLIDE,
FOR GETTING PREGNANT PEOPLE TO
SLEEP BETTER.
WHEN THINKING OF BARRIERS TO
IMPLEMENTATION -- NEXT SLIDE.
WE HAVE TO THINK ABOUT WHAT ARE
THE BARRIERS THAT IMPACT HOW
WELL THESE TREATMENTS WORK IN
THE REAL-WORLD SETTING GETTING
TO THEM.
IN ORDER FOR EFFECTIVE
TREATMENTS TO WORK, HOW THAT
WILL BE USED IN THE REAL WORLD,
WE THINK ABOUT ADOPTION, SO
PEOPLE USING INTERVENTION, HOW
WE WILL TRAIN HEALTHCARE
WORKERS AND SYSTEMS TO DELIVER
THE INTERVENTION, HOW TO
DELIVER IT WITH FIDELITY,
GIVING PEOPLE ACCESS TO
TREATMENTS AND ALSO MAKING THEM
SUSTAINABLE.
NEXT SLIDE, POLARIZE.
-PLEASE.
SPECIFICALLY IF WE THINK ABOUT
COGNITIVE BEHAVIORAL THERAPY
FOR INSOMNIA AND OUR WORK HAS
FOCUSED ON
ECONOMICALLY-MARGINALIZED
ADULTS, THINKING MORE OF THE
INDIVIDUAL LEVEL.
DR. BOURJEILY HAD A NICE SLIDE
LOOKING AT SYSTEMS, INDIVIDUAL
AND OTHER PREGNANCY-RELATED FACT
>>ERS AUTO SOME OF THE
IMPLEMENTATION ISSUES. SHE
MENTIONED WE TALK ABOUT
WORKFORCE SHORTAGES NOT ENOUGH
PEOPLE KNOW HOW TO DELIVER THE
THERAPIES, THE TIME IT TAKES TO
PARTICIPATE IN THE THERAPY,
COGNITIVE BEHAVIORAL THERAPY
INVOLVES SEEING PRACTITIONER
MULTI-IMTIMES FOR EVER THE
COURSE OF AN HOUR FOR 6-8 WEEKS
AND MOST OF CBTI IS NOT COVERED
BY INSURERS, THERE'S LIMITED
ACCESS TO SPECIALISTS WHO CAN
DELIVER IT, THERE'S
TRANSPORTATION BARRIERS, EVEN
THEIR DIGITAL DIVIDES, FACTORS
ASSOCIATED WITH STIGMA,
DISCRIMINATION, ACCESSING
THERAPY AND WE THINK ABOUT
LANGUAGE.
CBTI IS OFTEN ONLY AVAILABLE IN
ENGLISH AND GENERAL HEALTH
LITERACY CHALLENGES AND HOW DO
WE MAKE IT ACTUALLY USABLE FOR
PEOPLE TO NOT ONLY UNDERSTAND
THE INFORMATION BUT "E:60"
ESSENTIALLY MAKE THE BEHAVIORAL
CHANGE NECESSARY TO DO THAT.
NEXT SLIDE.
WHAT ARE SOME EXAMPLES IN
SLEEP, TRYING TO ADDRESS SOME
OF THESE FACTORS. THE NEXT FEW
EXAMPLES WE WILL FOCUS MORON
BEHAVIORAL SLEEP MEDICINE
TECHNIQUES AND THEN LATER IN
THE TALK ABOUT SLEEP APNEA
WHICH IS ALSO HIGHLY RELEVANT
TO THIS PATIENT POPULATION.
BECAUSE WE ARE A NASCENT FIELD
WE HE DON'T HAVE A LOT OF
IMPLEMENTATION STUDIES TO TALK
ABOUT.
BUT HOW WE CAN LEVERAGE
IMPLEMENTATION SCIENCE ACROSS
THE TRANSLATIONAL CONTINUUM.
NEXT SLIDE, PLEASE.
SO IN THINKING ABOUT EACH OF
THE STAGES I'LL PRESENT WE WILL
TALK ABOUT HOW THEY USE
DIFFERENT CORE ELEMENTS OF
IMPLEMENTATION SCIENCE,
DIFFERENT THEORIES, MODELS,
FRAMEWORKS, STAKE HARRIS
FIELDER COLLABORATOR
ENGAGEMENT, INTERVENTION
SELECTION EVALUATION TOOLS AND
IMPLEMENTATION STRATEGIES.
NEXT SLIDE, POLARIZE.
-- PLEASE.
I WOULD LIKE TO USE THE
LANE-FALL ET AL. BMC MEDICAL
RESEARCH.
ARE THERE PATHWAYS, THE FIRST
QUESTION IS DO WE HAVE AN
INTERVENTION THAT IS
EFFICACIOUS.
NEXT SLIDE, PLEASE.
SO HERE IS AN EXAMPLE OF HOW
BEHAVIORAL SLEEP MEDICINE
RESEARCHER ACTUALLY WORKING IN
HEALTHCARE DISPARITIES HAS USE
IMPLEMENTATION SCIENCE TO
IMPROVE SLEEP AGAIN, IT'S NOT
TAILORED FOR PREGNANT PATIENTS
BUT ACTUALLY FOR KIDS IN THE
CLINIC.
BUT I THINK IT'S IMPORTANT WORK
TO LOOK AT HOW WE CAN BE
THINKING ABOUT LONG-TERM
IMPLEMENTATION FACTORS. SO
WILLIAMSON WHEN SHE WAS AT
UNIVERSITY OF PENNSYLVANIA
WANTED TO DEVELOP, FOR THE
PEDIATRIC HEALTH POPULATION, SO
WHEN KIDS WERE BROUGHT INTO
PEDIATRICIANS FOR ROUTINE
CHILDHOOD CARE BEHAVIORAL SLEEP
STRATEGY, SHE THOUGHT ABOUT
WHAT CAN ACTUALLY THESE
PATIENTS IN THESE CONTEXTS DO,
AND HOW DO WE ACTUALLY
IMPLEMENT, HELP THEM NOT ONLY
IMPLEMENT IT PERSONALLY BUT HOW
ZO WE ACTUALLY HELP THE
PRAMEELA CARE PRACTICES WHERE
THEY WERE RECEIVING CARE TO
IMPLEMENT THIS BEHAVIORAL
INTERVENTION.
SHE REALLY USE IMPLEMENTATION
SCIENCE FRAMEWORKS TO HELP HER
KEEP THE FUTURE IMPLEMENTATION
OF IT IN MIND.
THROUGHOUT HER PROCESS ENGAGED
PRIMARY CARE DLINITIONS,
PARENTS, SHE HAD A NAMLY
ADVISORY BEARD TO DEVELOP THE
INTERVENTION AND ITERATIVE
CHANGES OF HER INTERVENTION.
NEXT SLIDE, PLEASE.
SHE IS MOVING DOWN THE PIPELINE
IN TERMS OF EARLY FEASIBILITY,
ADAPTATION STUDIES, RANDOMIZE
CONTROL STUDIES SO WHEN SHE IS
FURTHER DOWN THE TRANSLATIONAL
SPECTRUM THIS INTERVENTION IS
GOING TO BE EASIER TO IMPLEMENT.
NEXT SLIDE.
AS WE THINK OF TRANSLATIONAL
SPECTRUM WE ARE THINKING ABOUT
ETHIC STUDIES.
IMPLEMENTATION RESEARCH IS HOW
DO WE MAKE IT WORK.
THERE'S A FEW EXAMPLES IN SLEEP
LITERATURE ABOUT HYBRID DESIGNS.
NEXT SLIDE, PLEASE.
I WILL TALK BRIEFLY ABOUT
CURRENTLY-FUNDED NHLBI TRIAL,
HYBRID TYPE ONE EFFECTIVENESS
IMPLEMENTATION TRIAL EVALUATING
BEHAVIORAL TREATMENTS FOR
INSOMNIA AMONGST SOCIETIES
DISADVANTAGED ADULTS IN PRIMARY
CARE.
STELLA STUDY.
WE ARE COMPARING EFFECTIVENESS
OF THED NON-INFERIORITY OF
TELEHEALTH, IT'S A SHORTER
PROGRAM THAN CBTI THAT COULD BE
DELIVERED BY A RANGE OF
HEALTHCARE CLINICIANS TO MORE
TRADITIONAL TELEPHONE DELIVERED
CBTI, CHOICES ARE TELEPHONE TOO
IMPROVE ACCESS ON SHORT-TERM
INSOMNIA, TO SOCIO
DISADVANTAGED ADULTS WITH
INSOMNIA SPECIFICALLY IN THE
PRIMARY CARE SETTING.
NEXT SLIDE.
EVALUATE THE BARRIERS, IF WE
FIND BBTI IS NON-INFERIOR HOW
DO WE FIGURE OUT HOW TO
IMPLEMENT IT IN THE PRIMARY
CARE SETTING.
THAT SETTING WAS CHOSEN BECAUSE
THAT'S WHERE SOME OF THE
COMMUNITY HEALTH CENTERS, AND
PRIMARY CARE THERE'S A LOT OF
TRUST WITH OUR PATIENT
POPULATION WITH THEIR
PROVIDERS. WE'RE LEVERAGING
SOME IMPLEMENTATION SCIENCE
FRAMEWORKS USING STAKEHOLDER
AND COLLABORATIVE ENGAGEMENT TO
REALLY CONDUCT INTERVIEWS AND
SURVEYS TO BETTER UNDERSTAND
HOW WE CAN EMBED THESE
TREATMENTS IN CLINICAL SETTING.
NEXT SLIDE, PLEASE.
THIS IS JUST AN EXAMPLE HOW WE
MAPPED OUT THIS IMPLEMENTATION
ASSESSMENT FOR USE IN OUR
FRAMEWORKS. NEXT SLIDE, PLEASE.
HYBRID EFFECTIVENESS STUDY,
CBTI AND BBTI ARE EFFICACIOUS.
MOVING WITH THE SUBWAY MAP OF
IMPLEMENTATION AND GETTING INTO
IMPLEMENTATION RESEARCH WHICH
IS REALLY ULTIMATELY TESTING
IMPLEMENTATION STRATEGIES.
SOME EXAMPLES IN SLEEP, THE
FIRST THING REALLY IS TO
UNDERSTAND THE CONTEXT OF
HEALTHCARE DELIVERY.
NEXT SLIDE, PLEASE.
SO IN FRAMEWORKS PROPOSED MODEL
OF FACTORS LIKELY TO INFLUENCE
THE ADOPTION OF SUSTAINABILITY,
EVIDENCE-BASED PRACTICE, TO
IDENTIFY FACTORS TO HELP SELECT
THE RIGHT STRATEGY OR
STRATEGIES TO USE DURING THE
IMPLEMENTATION PROCESS.
NEXT SLIDE, PLEASE.
THESE STRATEGIES ARE SYSTEMIC
PROCESSES TO ADOPT AND
INTEGRATE EVIDENCE-BASED
INNOVATIONS IN USUAL CARE.
SO PUTTING THAT TOGETHER WE USE
THE FRAMEWORKS TO FIGURE OUT
WHAT -- NEXT SLIDE, PLEASE.
WE USE THE FRAMEWORKS TO
IDENTIFY THE FACTORS THAT WILL
HELP US CHOOSE THESE STRATEGIES
WHICH ARE REALLY HOW, YOU KNOW,
HOW TO GET PEOPLE TO DO THE
THING.
AND THERE'S DIFFERENT WAYS TO
CATEGORIZE AS MOST PROBABLY
KNOW.
PLANNING, EDUCATIONAL,
FINANCIAL, RESTRUCTURING,
QUALITY MANAGEMENT STRATEGIES
AND IDEALLY CHOOSING MORE THAN
ONE STRATEGY TO IDENTIFY THAT.
I THINK A NICE EXAMPLE OF THIS,
NEXT SLIDE, PLEASE.
IS IN THE SLEEP APNEA, WHICH IS
RELEVANT TO THIS POPULATION.
CURRENT GUIDELINES RECOMMEND
DIAGNOSE KNOWING AND TREATING
OSA IN PATIENTS WITH STROKE.
NEXT SLIDE, PLEASE.
LOOKING AT THE V.A. POPULATION,
EVEN WITH THE GUIDELINES THERE
WAS STILL A LOW RATE OF SLEEP
STUDY TESTING WITH PATIENTS
WITH STROKE.
THIS IS SIMILAR TO PATIENTS
WITH PREGNANCY AND THINK ABOUT
THE SHORTENED TIMEFRAME.
NEXT SLIDE, PLEASE.
THEY HAVE BEEN FUNDED TO DO A
STUDY, A RANDOMIZED STUDY,
CLUSTER DESIGN ACROSS VARIOUS
VA MEDICAL CENTERS TO EVALUATE
THE EFFECTIVENESS AND
SUSTAINABILITY OF DIFFERENT
IMPLEMENTATION STRATEGIES TO
IMPROVE DIAGNOSIS AND
MANAGEMENT OF SLEEP APNEA.
NEXT SLIDE, PLEASE.
THEY ARE USING THESE SYSTEMS
REDESIGNS, VIRTUAL
COLLABORATIVE DATA MONITORING
AND HOW TO GET PEOPLE TO DO
THIS THING.
THIS IS THE LIST OF STRATEGIES,
NEXT SLIDE.
THEY ARE LOOKING AT FACILITY
DIAGNOSTIC RATES FOR CURRENT
VASCULAR EVENTS, NEXT SLIDE.
TREATMENT RATES, 90 DAY
MORTALITY.
NEXT SLIDE.
THIS IS OTHER EXAMPLES. AND
JESSICA LEVINSON THAT'S
INTERVENTION DEVELOPMENT.
SHE WORKS IN BOTH SLEEP HEALTH
AND JUVENILE JUSTICE AND THEN
MOVING MUCH LATER DOWN THE
PIPELINE IN LATER STAGE MOST OF
THE WORK IN SLEEP, A LOT OF
FOCUS IN THE VA SETEDING.
NEXT SLIDE.
WHAT ARE FUTURE GAPS?
NEXT SLIDE, PLEASE.
FIGURING OUT HOW TO USE,
LEVERAGE IMPLEMENTATION SCIENCE
CORE PRINCIPLES IN THE WORK TO
ANSWER QUESTIONS.
GO TO THE NEXT SLIDE, PLEASE.
DETERMINE WHERE SLEEP
INTERVENTION STUDIES FALL ALONG
THE CLINICAL TRANSLATIONAL
RESEARCH CONTINUUM AND DESCRIBE
HOW IMPLEMENTATION SCIENCE
FRAMEWORKS CAN ADDRESS CURRENT
RESEARCH TO PRACTICE GAPS, TO
IMPROVE MATERNAL HEALTH.
NEXT SLIDE, PLEASE.
IDENTIFY PRACTICAL STRATEGIES
TO BROADEN PERSPECTIVES AND
THAT INFORM SLEEP INTERVENTION
RESEARCH TO IMPROVE MATERNAL
HEALTH.
NEXT BULLET, PLEASE.
REFLECT HOW SLEEP INTERVENTION
PROTOCOLS AND PROGRAMS, IN THE
POST PARTUM PERIOD, HOW THEY
CAN DETERMINE SOCIAL
DETERMINANTS OF HEALTH AND
STRUCTURAL RACISM BECAUSE
THAT'S RELATED TO EVERYTHING WE
HAVE TALKED ABOUT TODAY.
SOME ADDITIONAL RESOURCES
THAT'S BEEN PUBLISHED.
NEXT SLIDE.
I THINK IT'S IMPORTANT TO KEEP
IN MIND, IF YOU DON'T KNOW
WHERE YOU ARE GOING, GO TO THE
NEXT SLIDE, I MENTIONED THESE
ALREADY.
YOU MIGHT WIND UP SOMEPLACE
ELSE.
THANK YOU.
I THINK IT'S IMPORTANT TO KEEP
IN MIND, EVEN THOUGH IN THIS
IS NASCENT AREA FOR DEVELOPING
SLEEP INTERVENTIONS FOR
MATERNAL HEALTH, IT'S IMPORTANT
TO THINK ABOUT WHERE YOU ARE IN
THE CONTINUUM OF HEALTH, EF A
CA SY STUDIES TO GET IN THE
PIPELINE SOONER HAD YOU NOT
CONSIDERED THE FRAMEWORK AND
TOOLS THAT IMPLEMENTATION
SCIENCE GIVES US.
THANKS SO MUCH.
I LOOK FORWARD TO THE
DISCUSSION.
>> SHILPY DIXIT: THANK YOU SO
MUCH, THAT WAS REALLY VALUABLE
INFORMATION AND I THINK
CONTEXTUALIZATIONS THE ROLE
THAT SLEEP HEALTH AND CIRCADIAN
HEALTH PLAYS, I KNOW I GLIEFPED
OUT THERE, BUT THEN THE ROLE
THAT SLEEP HEALTH AND CIRCADIAN
HEALTH PLAYS A GLOBAL MATERNAL
HEALTH BUT DOMESTICALLY AND
WAYS IN WHICH SLEEP HEALTH,
SLEEP IMPLEMENTATION HEALTH CAN
BE USED TO PROMOTE SLEEP HEALTH
AND MATERNAL HEALTH.
ONE THING I WANT TO TOUCH ON
BEFORE WE GET INTO ANY
QUESTIONS, ALL OF YOU TALKED
ABOUT SLEEP HEALTH DISPARITY OR
HEALTH DISPARITIES WITHIN THE
MATERNAL HEALTH POPULATION,
WITHIN THE SLEEP HEALTH
POPULATIONS OR SLEEP
DISPARITIES OR SLEEP DISORDERS
POPULATION.
I KNOW THAT SLEEP HEALTH
DISPARITIES IS A RESEARCH
PRIORITY ACROSS NONSINGER IH AS
WELL.
SLEEP HEALTH HAS BECOME A
HEALTH EQUITY ISSUE, WOULD LIKE
TO HIGHLIGHT ONE OF THE FINAL
POINTS THAT DR. ENGLAND SPOKE
ABOUT WITH REGARD TO HER DATA,
VARIABILITY IN SLEEP SCHEDULES
AND LIGHT EXPOSURE.
ROUGHLY 30% OF AMERICANS ARE
CONSIDERED SHIFT WORKERS. THOSE
SHIFT WORK IS MORE COMMON IN
RACIAL AND ETHNIC MINORITIES.
AS WE LOOK AT POLICIES AND
PRACTICES AROUND MATERNAL
HEALTH AND PROTECTIONS, IS THIS
SOMETHING THAT SHOULD BE
CONSIDERED AS ANOTHER
PROTECTION AROUND PREGNANCY.
I KNOW THIS IS MAYBE A LITTLE
TOO DEEP OR A LITTLE BEYOND
THE SCOPE OF THIS TALK.
BUT IT DID OCCUR TO ME THAT
DURING THIS CONVERSATION, IS
THIS A RISK?
IS SHIFT WORK BECOMING A RISK
FOR THIS POPULATION?
FOR PREGNANT PEOPLE?
>> SARA H ENGLAND: WE HAVE
TALKED A LOT ABOUT THIS IN OUR
GROUP, IS SHIFT WORK, THE
OUTCOMES ARE GOING TO BE WORSE.
LIKE FIRST, SECOND, THIRD
TRIMESTER.
WE HAVEN'T GOTTEN THERE.
MAYBE SOME OF THE OTHER
SPEAKERS WILL KNOW.
BUT AT LEAST IN OUR DATA, WE
HAVE NOT BEEN ABLE TO PULL THAT
OUT.
HOWEVER, THE ONE THING WE DID
FIND FROM OUR POPULATION WAS
THAT THE SLEEP HEALTH THEY WENT
INTO THEIR PREGNANCY WITH, IS
BASICALLY THEIR SLEEP HEALTH
DURING THEIR PREGNANCY.
FOR THOSE WHERE YOU GET THEM
PRECONCEPTUALLY, THEY DIDN'T
REALLY CHANGE THEIR HABITS, DO
WE NEED TO DO MORE
PRECONCEPTUAL COUNSELING OF
PEOPLE WHO ARE PLANNING THEIR
PREGNANCIES AND NOT JUST FOCUS
WHEN THEY ARE ALREADY PREGNANT.
THAT IS SOMETHING THAT WE HAVE
HAD DISCUSSIONS WITH.
BUT AGAIN, WE HAD A LOT OF
PEOPLE WHO COME IN WHO ARE
ALREADY PREGNANT AND WHAT ARE
YOU, AT THAT POINT, WHAT ARE
THE STRATEGIES THAT WE SHOULD
TAKE.
SO I WOULD LOVE TO HEAR THE
OTHER PANELISTS' OPINIONS ON
THAT.
>> GHADA BOURJEILY: IN OUR
STUDIES WE HAVE SHIFT WORK WHEN
WE ARE LOOKING FOR A SPECIFIC
DISORDER FOR THAT REASON, WE
THINK IT MAY ACTUALLY IMPACT OR
CONFOUND THE FINDINGS. I CAN'T
REMEMBER HOW MANY YEARS AGO BUT
AT LEAST A DECADE AGO I WOULD
SAY FEMALE RESIDENTS BEING
HIGHER RISK FOR COMPLICATIONS,
FEMALE RESIDENTS SO THEY ARE
MEDICAL RESIDENTS OR SURGICAL.
THEIR HOURS ARE CHANGING ALL
THE TIME AND THEY DON'T HAVE
TIME TO ADJUST TO THE SHIFT
WORK AT ALL AND THEY HAVE WORSE
OUTCOMES THAN, YOU KNOW, THE
NON-FEMALE RESIDENTS FOR
INSTANCE.
OR THE WIVES OF THE MALE
RESIDENTS I THINK IS WHAT THE
STUDIES LOOK AT.
BUT I DON'T THINK WE HAVE
SPECIFIC STUDY THAT'S HAVE
LOOKED AT SHIFT WORK,
SPECIFICALLY TO SEE WHAT IT IS.
BUT WE KNOW WHAT THE OUTCOMES
LOOK LIKE OUTSIDE OF PREGNANCY
IN TERMS OF CARDIOVASCULAR
HEALTH AND METABOLIC HEALTH, ET
CETERA, I ASSUME IT WOULD BE
SIMILAR IN THIS POPULATION BUT
WE CERTAINLY NEED TO STUDY THAT.
>> SHILPY DIXIT: I WANT TO
THANK YOU FOR TALKING ABOUT
BARRIERS.
THAT WAS GOING TO BE MY NUMBER
ONE, WHAT ARE THE BARRIERS?
THANK YOU FOR ADDRESSING THOSE.
ONE THING I WANT TO ASK ABOUT
IS CULTIVATING SOME
PARTNERSHIPS. IMPLEMENTATION
SCIENCE AND ESPECIALLY BECAUSE
WE WANT TO FOCUS ON
INTERSECTIONALITY HERE BECAUSE
SLEEP IS NOT ONLY A BEHAVIOR
BUT IT'S ALSO A BIOLOGY.
AND MATERNAL HEALTH IS ALSO
SOMETHING THAT TOUCHES SO MANY
OTHER ASPECTS OF THE MOTHER AND
ALSO THE FETUS, THE BABY, THE
LIFE.
AND SO WHEN TALKING ABOUT THE
BARRIERS AND DR. BOURJEILY WHEN
TALKING ABOUT THE BARRIERS AND
FACILITATORS, RELATIONSHIP WITH
THE CLINICIAN AND HOW IT COULD
BUILD TRUST OR DIMINISH TRUST,
THE RELATIONSHIP WITH THE
PARTNER AND HOW CAN BUILD TRUST
OR DIMINISH TRUST AND HOW THE
PREGNANT PERSON FEELS ABOUT HER
OWN HEALTH AND HER BABY'S
HEALTH.
WHEN YOU ARE THINKING ABOUT, OR
WHEN ANY OF YOU ARE THINKING
ABOUT HOW TO DESIGN AND
IMPLEMENT THESE INTERVENTIONS
HOW DO PARTNERSHIPS PLAY A ROLE
HERE, LIKE ACROSS THE SPECTRUM?
>> GHADA BOURJEILY: I CAN START
WITH THIS.
I THINK THE PARTNERSHIPS IN
THIS CONTEXT OF SLEEP DISORDERS
NEED TO ALSO START BY
INTERDISCIPLINARY TEAMS WORKING
TOGETHER.
SO HAVING A SLEEP PERSON THAT
DOESN'T SEE PREGNANT WOMEN ALL
THAT OFTEN DEVELOP SOMETHING
AND NOT UNDERSTAND HOW THE
PRENATAL CARE WORKS, OR WHAT
THOSE REQUIREMENTS ARE, IT
DOESN'T DO IT ANY JUSTICE OR
HAVING AN OBSTETRIC PERSON
DEVELOP THESE THINGS WITHOUT
KNOWING THE SLEEP WORLD AS
WELL, DOESN'T WORK AS WELL.
SO WE NEED TO WORK WITHIN TEAMS
AND THEN AS I WAS THINKING
ABOUT THIS, I'M SO HAPPY YOU
INVITED ME TO SPEAK HERE.
IT FORCED ME TO SPEAK ABOUT
WHAT THE OPPORTUNITIES ARE.
I THINK THERE ARE PLACES WHERE
THERE ARE INTEGRATED BEHAVIORAL
HEALTH PRACTICES WITHIN
OBSTETRIC CARE.
WHY CAN'T WE USE SOME OF THOSE
TO TRY TO EMBED SOME OF THE
SLEEP INTERVENTIONS WITHIN THE
PRENATAL PRACTICE, FOR INSTANCE.
WE CAN TRAIN SOME OF THE NURSES
ON DOING SLEEP HYGIENE.
I KNOW PRENATAL CARE,
ESPECIALLY IN THE INITIAL
VISITS, IT'S REALLY HEAVY ON
PREVENTION AND ON TESTING AND
SCREENING AND ADDING YET
ANOTHER THING, THIS IS WHAT I
HEAR FROM MY O.B. COLLEAGUES
ALL THE TIME.
THAT ADDING ONE MORE THING FOR
THE TEAM TO HAVE TO DO FOR
EVERY INITIAL O.B. VISIT SEEMS
TO BE A BURDEN.
OUR PARTNERS NEED TO START
THERE WITHIN THE MEDICAL SYSTEM.
BUT THEN THERE ARE MANY PEOPLE
WHO DON'T ACCESS PRENATAL CARE,
11 OR 13 WEEKS.
AND HOW DO WE ACCESS THOSE
PEOPLE?
THIS IS WHERE OUR PARTNERSHIPS
WITH COMMUNITIES NEED TO WORK.
THERE ARE PLENTY OF COMMUNITY
ORGANIZATIONS THAT PARTNER WITH
PATIENT AND ASSIST THEM IN YOU
KNOW, EITHER OBTAINING FOOD,
FOOD STAMPS OR GIVING THEM MORE
ACCESS TO FOOD, OR PROVIDING
EDUCATION ABOUT LACTATION DOWN
THE LINE.
THERE ARE PLENTY OF LOCAL
ORGANIZATIONS THE PROVIDERS
COULD WORK WITH TO BE ABLE TO
REACH PEOPLE WHERE THEY ARE.
ANOTHER THING THAT WE TALKED
ABOUT IS THAT SLEEP IS NOT A
PRIORITY IN PRENATAL CARE YET.
I THINK IT'S IMPORTANT IT
BECOMES THAT.
THAT'S WHERE WE NEED TO ACCESS
IT WITH COMMUNITIES AND TALK
ABOUT WHAT SARAH HAS SHOWN
EARLIER, TALK ABOUT THE
IMPORTANCE OF THIS LACK OF
VARIABILITY IN SLEEP AND GOING
TO BED AT THE SAME TIME AND
WAKING UP AT THE SAME TIME, AS
MUCH AS THEY CAN DO THAT.
THERE ARE SOME INTERVENTIONS I
THINK ARE PRETTY EASY AND WITH
PARTNERING, PRETTY EASY --
DON'T QUOTE ME ON THAT.
[ CHUCKLES ]
IT WILL DEMONSTRATE ITSELF THE
HARDEST THING TO DO, BUT THERE
ARE MANY OPPORTUNITIES WE CAN
JUMP ON THESE INSTANCES BY
PARTNERING WITH THE RIGHT
PEOPLE.
>> SHILPY DIXIT: ABSOLUTELY.
THERE ARE A FEW QUESTIONS FROM
THE AUDIENCE, NUMBER ONE HAVE
ANY OF THESE STUDIES OR
INTERVENTIONS BEEN CONDUCTED IN
LMIC OR LOWER MIDDLE INCOME
COUNTRIES, DO YOU KNOW OF ANY?
>> GHADA BOURJEILY: CPAP
INTERVENTION.
IT'S NOT AN IMPLEMENTATION
THING, BUT IT'S TESTING THE
EFFICACY OF CPAP IN IMPROVING
BLOOD PRESSURE MARKERS, THIS
WAS DONE IN THAILAND.
THAT I SHOWED BEFORE.
THERE WAS ANOTHER LOOKED AT
GLUCOSE METABOLISM DONE IN
THAILAND AS WELL.
NOT MANY OTHERWISE, THE CBTI
INTERVENTIONS THAT SHOWED
COUPLE MINDFULNESS, DONE IN THE
WIFT EARN WORLD, CANADA, U.S.,
AUSTRALIA, EUROPE, ET CETERA.
>> SHILPY DIXIT: WE HAVE ONE
FROM NHLBI.
THANK YOU FOR THE EXCELLENT
MRENTATION, DR. BERTISCH.
MENTIONED BARRIERS TO ADOPTION
AND SUSTAINABILITY FOR
INTERVENTIONS CAN YOU SPEAK A
LITTLE BIT MORE CULTURAL
APPROPRIATENESS OF IPT
CONVENIENT SHUNS AND HOW RISKS
AND PROTECTIVE FACTORS INHERENT
TO EACH UNIQUE COMMUNITY HELP
DETERMINE THE BEST
IMPLEMENTATION STRATEGIES FOR
SLEEP INTERVENTIONS. INDIGENOUS
COMMUNITIES MAY HAVE CULTURAL
VALUES AND BELIEFS.
>> YEAH, THAT'S A GREAT
QUESTION AND THOUGHT ABOUT
DOWNSTREAM FOR MY WORK AND
TALKED TO COLLEAGUES ABOUT IN
THE AREA TOO.
I WILL TAKE A STEP BACK.
I THINK WHAT'S PARTICULARLY
INTERESTING HEARING SOME
REFLECTIONS THAT GHADA HAD,
EVERYBODY SLEEPS. SLEEP IS A
BEHAVIOR BUT ALSO A BIOLOGY.
I THINK ONE ADVANTAGE OUR FIELD
HAS IS THAT CBTI, IN GENERAL,
WILL WORK FOR ANY HUMAN.
THE CATCH IS HOW TO GET PEOPLE
TO DO IT.
OBVIOUSLY IN DIFFERENT DISEASE
STATES THERE MAY BE SOME
TAILORING, WE WOULDN'T LIMIT
THE TIME IN BED AS MUCH.
BUT WE HAVE A VERY ROBUST
INTERVENTION.
I THINK 90% OF OUR PROBLEM NOW
IS THIS CONTEXT.
AND ISSUE OF CULTURE IS SO
EMBEDDED IN THE CONTEXT.
THESE INTERVENTIONS I THINK OF
THEM BOTH AS SYSTEMS CONTEXT
WHERE WE ARE DELIVERING IT.
BUT ALSO MOSTLY EVERYONE IS
BRINGING BEHAVIORAL
INTERVENTION, IRUC PAT IS
ACTUALLY A BEHAVIORAL
INTERVENTION AS MUCH AS
PHYSIOLOGICAL ONE BECAUSE YOU
NEED A CHANGE IN BEHAVIOR IN
ORDER FOR PEOPLE TO DO IT.
IT NEEDS TO ALIGN.
HOW EARLY DO WE NEED TO DO THE
STUDY, VERSUS, WHAT POINT DO WE
NEED TO DO THAT ADAPTATION.
OBVIOUSLY, COLLABORATION WITH
THE TARGET AND USERS ARE
ESSENTIAL THROUGHOUT THE
PROCESS.
BUT YOU KNOW, DO WE NEED TO
REDEVELOP CBTI SPECIFICALLY FOR
EACH CULTURE TO FIGURE OUT WHAT
COMPONENTS DO WE NEED TO ADD OR
SUBTRACT OR DO THAT ADAPTATION
MORE TOWARD ADAPTATION RESEARCH
AND FIGURE OUT WHICH
STRATEGIES, IT'S CONSTANTLY
THIS CHANGE IN FIDELITY AND
PROCESSING AN WHAT WILL BE THE
MOST EFFICIENT PROCESS.
SO THAT'S A QUESTION ACROSS
CULTURES YOU KNOW, SOME CLINICS
WHERE THEY HAVE SIESTAS AND
NAPS. IT'S A HUGE PROBLEM, NOT
A PROBLEM BUT SOMETHING WE NEED
TO LEVERAGE BECAUSE IT WILL
INFLUENCE ULTIMATELY HOW WELL
THE TREATMENTS WILL USE FOR ANY
GIVEN PERSON WITHIN BOTH
CULTURE AND CLINICAL CONTEXT.
I THINK THE STRAIN OUR FIELD
HAS WE ARE A LITTLE BIT WRAPPED
UP IN DOING ADAPTATIONS EARLY,
GREAT, CBTI WORKS FOR THIS, NOW
LET'S DO CBTI FOR THIS
POPULATION AND CHANGE IT FOR
THIS POPULATION.
ULTIMATELY IS STILL A LITTLE
BIT AN INCUBATOR APPROACH, THEY
ARE STILL DOING IT IN CLINICAL
TRIAL CONTEXT.
I THINK IT'S GETTING THE
COLLABORATORS AND STAKEHOLDERS
IN THE COMMUNITIES AND
PARTNERSHIPS ENGAGED EARLY ON.
THAT'S WHY I THINK DR.
WILLIAMSON'S WORK IS A
BEAUTIFUL EXAMPLE FOR ALL US TO
THINK ABOUT.
THAT'S WHAT SHE DID FROM DAY
ONE.
SHE WENT IN THERE AND THOUGHT
SHE WAS GOING TO DO SOMETHING
ELSE.
LIKE THERE ARE BEHAVIORAL SLEEP
INTERVENTIONS BUT WHEN SHE
STARTED TALKING TO THE PARENTS
AND DOCTORS IT WAS LIKE THIS IS
NEVER GOING TO WORK EARLY ON.
I KNOW I'M NOT REALLY ANSWERING
THE SPECIFIC QUESTION.
THAT'S THE WHOLE POINT IS
CONTEXT IS ALMOST EVERYTHING
AND FIGURING OUT THE PIECES TO
GET IT TO WORK IS THE TOOL,
AGAIN.
EVERYBODY SLEEPS. MOST PEOPLE
ACTUALLY HAD INTACT MECHANISMS
SO MOST PEOPLE THEIR CIRCADIAN
CONTROLLERS, YOU KNOW, THERE'S
PLACES THEY CAN HARNESS THE
TOOLS IN OUR OWN BRIN BAU WE
NEED TO CHANGE THE BEHAVIOR.
THERE'S CONSTRAINED SHIFT
WORKERS AS MENTIONED, HAVING
OPPORTUNITY FOR SLEEP IS A
WHOLE OTHER TYPE OF BARRIER.
I THINK IN SLEEP OURSELVES IS
TO START THINKING ABOUT THE
MULTI-LEVEL INTERVENTIONS
BECAUSE MOST OTHER FIELD IT'S
BEEN REALLY ISOLATED TO
INDIVIDUAL LEVEL AND BEING MORE
CREATIVE IN GENERAL THE SCIENCE
HOW TO DO THOSE MULTI-LEVEL
STUDIES.
>> SHILPY DIXIT: I THINK YOU
DID ANSWER THE QUESTION, IT'S A
VALUABLE CONSIDERATION, WHAT
POINT DO WE NEED TO BRING THAT
CONSIDERATION IN, I THINK IT
MIGHT BE DIFFERENT FOR EVERY
INTERVENTION, OR EVERY CRITICAL
QUESTION WE ARE TRYING TO
ANSWER.
SO I THINK WE ARE OUT OF TIME
AND RIGHT UP AGAINST LUNCH HERE.
BUT BEFORE WE CLOSE FOR LUNCH,
BEFORE WE BREAK FOR LUNCH, I DO
WANT TO LEAVE THE GROUP WITH
JUST ONE MORE CONSIDERATION,
AND ONE QUESTION FROM THE
AUDIENCE.
JUST SOMETHING TO THINK ABOUT
WHILE YOU EAT.
WONDERING WHAT THE PRESENTERS'
THOUGHTS ARE ON HOW YOU MIGHT
EVEN GO ABOUT ASSESSING THIS IN
LOW-AND-MIDDLE INCOME COUNTRIES
GIVEN THAT CLINICAL RESOURCES
ARE ALREADY SO LIMITED.
I KNOW WE HAVE A DISCUSSION AT
THE END OF THIS WAORK SHOP
TODAY.
BUT THAT IS DEFINITELY
SOMETHING I HAVE BEEN THINKING
ABOUT YESTERDAY AND TODAY AND
WILL BE THINKING ABOUT MOVING
FORWARD.
SO LOOKING FORWARD TO THE
DISCUSSION AS WE MOVE ON.
ENJOY YOUR LUNCH, EVERYBODY.
AND SPEAKERS, THANK YOU AGAIN,
SO MUCH.
>> GHADA BOURJEILY: THANK YOU
FOR HAVING US.
OUR SECOND SPEAKER IS DR.
FITZPATRICK STEPHANIE,
FEINSTEIN INSTITUTE FOR MEDICAL
RESEARCH, TITLE IS IMPLEMENTING
INTEGRATED CARE APPROACHES TO
REDUCE DISPARITIES IN SEVERE
MATERNAL MORBIDITY.
OUR THIRD IS MEGAN PASSEY.
DAFFODIL CENTER, UNIVERSITY OF
SYDNEY, I WANT TO THANK DR.
PASSEY, IT'S 3:00 A.M. IN
SYDNEY.
EVIDENCE BASED SMOKING
CESSATION CARE IN PREGNANCY.
OUR FOURTH SPEAKER IS DR.
JENNIFER TAYLOR-COUSAR.
THE TITLE OF HER TALK IS
MATERNAL, LESSON FROM CYSTIC
FIBROSIS, AND WITH THAT, I WILL
HAND IT TO SONALI BOSE FOR HER
PRESENTATION.
>> SONALI BOSE: THANK YOU.
I'M REALLY EXCITED TO BE HERE
TO TALK TO YOU ABOUT SOME OF
THE WORK THAT OUR COLLEAGUES
AND OURSELVES HAVE BEEN DOING
IN THIS AREA OF INTEREST.
NEXT SLIDE.
I HAVE A FEW DISCLOSURES WHICH
ARE NOT PARTICULARLY RELEVANT
TO WHAT I'LL BE TALKING ABOUT
TODAY OTHER THAN STUDIES I WILL
BE PRESENTING FUNDED BY NIH AS
WELL AS THE AMERICAN LUNG
ASSOCIATION.
NEXT SLIDE.
SO, I WANT TO START OFF
ACTUALLY BY RELATING AN
EXPERIENCE I HAD IN 2008,
ALMOST 16 YEARS AGO.
AT THE TIME I DIDN'T KNOW IT
WOULD ESSENTIALLY HELP ME BE
WHERE I AM TODAY.
WE OFTEN DON'T KNOW WHAT
JOURNEYS WE ARE HEADING TOWARD
BUT I WAS A FIRST YEAR FELLOW
AT JOHNS HOPKINS AT THE TIME,
MY FIRST YEAR OF FELLOWSHIP IN
THE N ICU TAKING CARE OF
PATIENTS AND MY FELLOW HAD TO
LEAVE FOR HIS OUTPATIENT CLINIC
AND INFORMED ME HE WAS INFORMED
ON A BLACK WOMAN PREGNANT WITH
ASTHMA, AND IF I COULD PLEASE
BABYSIT HER.
WHILE HE HADN'T EVEN MADE IT TO
THE PARKING LOT THERE WAS AN
OVERHEAD QUALIFY FOR AN
EMERGENCY, THIS PATIENT WAS
WHEELED IN THE M ICU, SHE WAS
HYPOXIC DOWN TO THE 40s, I WAS
A FIRST YEAR FELLOW TRYING TO
FIGURE OUT WHAT TO DO, PROBABLY
ONE OF THE MOST DRAMATIC
INCIDENCES OF MY TRAINING, SHE
HAD REFRACTORY HYPOXEMIA,
COULDN'T GET HER SATS UP.
SHE DID AN EMERGENCY C-SECTION
HER BABY DID SURVIVE, FOR YEARS
THERE ON AT HOPKINS THIS LOVELY
WOMAN WAS UNFORTUNATELY IN A
PERSISTENT VEGETATIVE STATE,
KNOWN TO ALL THE FELLOWS AND WE
WATCHED THE CHILD GROW THROUGH
ALL THESE VISITS.
SO IT GOT ME REALLY THINKING IN
TERMS OF ALL OF THE THINGS WE
DIDN'T UNDERSTAND ABOUT THIS
CASE AT THE TIME IT HAPPENED.
AND ALL THE SYSTEMS IN PLACE
THAT HAD LED TO THE SITUATION
THAT SHE FACED AND CULMINATED
IN THE EVENTS THAT WE WITNESSED.
IN THE INTEREST OF TIME I WILL
MOVE ON TO THE NEXT SLIDE.
IT WAS THE FIRST APPRECIATION I
HAD THAT PREGNANCY IS AN
EXQUISITELY VULNERABLE STATE.
EVERYTHING ABOUT PREGNANCY A
SHARED EXPERIENCE BETWEEN
MOTHER AND BABY.
THE MRA TEN IS A IS THE CENTER
OF THE DISEASE UNIVERSE.
ANYTHING THAT MOTHER
EXPERIENCES, BABY IS EQUALLY
EXPERIENCING.
MUCH OF THIS IS UNFORTUNATELY A
RESULT OF NORMAL ADAPTATIONS TO
PREGNANCY.
WHICH MAKE PREGNANT WOMEN
EXQUISITELY VULNERABLE TO MANY
OF THE THINGS THEY COULD NORNL
ALLEY HANDLE IN A NON-PREGNANT
STATE.
NEXT.
THIS IS A NICE SCHEMATIC TO
SHOW HOW THE ENVIRONMENT OF THE
MOTHER WHETHER INHALED
ENVIRONMENT OR ANY OTHER
ENVIRONMENT IS TRANSMITTED
ACROSS THE PLACENTAL/FETAL
BARRIER AND IMPACTING MANY OF
THE MOLECULAR CELLULAR AND
PHYSIOLOGICAL CHANGES OCCURRING
TO CHANGE THE PHENOTYPE OF THE
NEWBORN.
UNFORTUNATELY THE FEATURE IS
VERY VULNERABLE STATE AS WELL,
UNDERGOING RAPID PERIOD OF
GROWTH AND MATURATION AND
BECOMES VERY SENSITIVE TO
INSULTS. NEXT SLIDE.
NEXT SLIDE.
NEXT.
SO THIS LEADS US TO
UNDERSTANDING ONE PARTICULAR
MATERNAL CO MORBIDITY WHICH HAS
A PROFOUND IMPACT ON THE
PROCESS I JUST SHOWED YOU.
I WILL BE SPEAKING ABOUT ASTHMA
AS MOST COMMON RESPIRATORY
CONDITION IN PREGNANCY.
NEXT.
20% OF PREGNANT WOMEN WHO HAVE
ASTHMA HAVE SEVERE DISEASE.
AND OF THESE ALMOST A THIRD CAN
HAVE UNCONTROLLED DISEASE.
NEXT.
THIS LEADS TO A LOSS OF CONTROL
DURING PREGNANCY, WHICH CAN BE
ATTRIBUTED TO A NUMEROUS NUMBER
OF THINGS, INCLUDING
SUSCEPTIBILITY TO INFECTIONS
SUCH AS THE FLU AND OTHER
VIRUSES AND CHANGES IN ADAPTIVE
IMMUNITY THAT ALSO IMPACT THE
WAY THAT MOMS HANDLE THEIR
ASTHMA.
NEXT SLIDE.
AND YOU KNOW, THAT'S THE
BIOLOGY BEHIND IT.
BUT AS MY KIDS WOULD SAY, IRL,
IN REAL LIFE, WHAT'S GOING ON.
WHY ARE ALL THESE PREGNANT
WOMEN LOSING THEIR ASTHMA
CONTROL IN PREGNANCY.
THIS IS BEING SEEN TIME AND
TIME AGAIN IN MY OWN CLINIC
WHERE PROVIDERS AND PATIENTS
HAVE SIGNIFICANT MEDICATION
HESITANCY AND WILL STOP THEIR
MEDICATIONS.
THEY SHOW ALMOST A QUARTER OF
WOMEN WHO ARE PREGNANT WILL
DISCONTINUE THEIR ASTHMA MEDS
FOR CONCERNS OF SAFETY.
NEXT POINT.
THIS UNFORTUNATELY ADDS TO A
LOT OF BURDEN TO PREGNANT WOMEN
WHO DON'T HAVE TIME TO GO TO
SEPARATE PREGNANCY PRENATAL
VISITS AS WELL AS SEE SUB
SPECIALTY.
A LOT OF THIS MANAGEMENT GETS
MISSED.
EXACERBATIONS HAVE BEEN SHOWN
TO INCREASE THE RISK OF
COMPLICATIONS.
I HAVE STATS HERE IN TERMS OF
SPECIFIC APOS WE ARE TALKING
ABOUT.
NEXT SLIDE.
THIS POINT WAS MADE EARLIER BY
SUZIE WHO DESCRIBED THAT YOU
KNEE, OTHER PATIENTS WHO ARE
UNCONTROLLED PRIOR TO PREGNANCY
HAVE THE HARDEST TIME.
THIS IS TRUE FOR ASTHMA AS WELL.
THE REALITY IS THERE'S A LOT OF
INEQUITIES, WE UNDERSTAND
THERE'S HUGE RACIAL AND ETHNIC
DISPARITIES IN PULMONARY
HEALTH, AND THIS IS TRUE IN
ASTHMA AS WELL.
MINE NOR TIESED INDIVIDUALS
HAVE HIGH RISK OF ASTHMA
MORBIDITY.
THEY ARE AT THIS CROSSROADS.
THERE ARE A LACK OF REALLY
PERSPECTIVE STUDIES THAT HAVE
SHOWN INTERVENTION TRIALS THAT
CAN HELP BRIDGE THESE GAPS.
NEXT SLIDE.
SO THAT'S A LOT OF
RETROSPECTIVE DATA THAT HAS
BEEN DONE IN THIS AREA.
OUR GROUP PROCEEDED TO TRY TO
DEMONSTRATE THESE RELATIONSHIPS
IN A PROSPECTIVE WAY.
WE WORKED WITH THE NUMOM2B,
WITH WELL ADJUDICATED CADRE OF
PREGNANCY OUTCOME DATA.
SO I'M JUST SHOWING YOU A
LITTLE ABOUT THE DEMOGRAPHICS
OF THIS BRILLIANT COHORT THAT
IS MULTI-SITE IN THE UNITED
STATES.
A PROFOUND NUMBER OF THESE
WOMEN ACTUALLY HAD SMOKED PRIOR
TO PREGNANCY.
WE WILL GET BACK TO THAT IN A
MINUTE.
NEXT SLIDE.
WHAT WE DID IS LOOKED AT
PATIENTS IN THIS COHORT WHO HAD
A HISTORY OF ASTHMA, THE NEED
FOR ASTHMA MEDICATION.
AND WE USED THAT AS A SURROGATE
FOR HAVING ACTIVE ASTHMA DURING
PREGNANCY.
WE LOOKED AT THESE IN ADJUSTED
MODELS WITH THEIR ASSOCIATIONS
WITH ADVERSE PREGNANCY OUTCOMES.
IN THE PANEL TO OF THE LEFT,
PANEL A, IT COULD SHOW YOU HOW
HAVING AN ASTHMA DIAGNOSIS AT
THE ENROLLMENT TIME PERIOD
INCREASES RISK FOR HYPER
TENSIVE DISORDERS OF PREGNANCY,
INCLUDING PREECLAMPSIA, AND
USING ASTHMA MEDICATION,
FURTHER INCREASES YOUR ODDS OF
HAVING NUMEROUS -- NEXT
SLIDE, PLEASE.
WHAT THIS DOES TO MOM IS
OBVIOUS BUT WHAT IT DOES TO
BABY IS MORE SIGNIFICANT.
IN THE SENSE MATERNAL
INFLAMMATORY RESPONSES COULD
IMPACT PLACENTA FLOW.
ALL THE INTERNAL AND EXTERNAL
ENVIRONMENTS THE MOTHER FACES
WHEN UNDERGOING PREGNANCY AND
HOW THIS IMPACTS THE HEALTH
RISK OF THEIR BABIES.
NEXT SLIDE.
AS A PROOF OF CONCEPT WE
THOUGHT CLOSELY ABOUT THE
INDOOR AIR POLLUTION, IT'S ONE
OF THE KEY FACTORS THAT LEAD TO
WORSE ASTHMA IN ADULTS AND
NON-PREGNANT POPULATIONS AND
HYPOTHESIZE THIS WILL INCREASE
THE ADVERSE PREGNANCY OUTCOMES
AND CHILDHOOD PHENOTYPES I JUST
MENTIONED.
NEXT SLIDE.
WE INCORPORATED A NUMBER OF
LOW-TOUCH STRATEGIES TO ADDRESS
THIS PROBLEM, MONITORING AIR
QUALITY DURING PREGNANCY.
AND WE HAVE DONE THIS THROUGH
REALLY IN-DEPTH IN-HOME
ASSESSMENTS. IN THIS WORK WE
DEMONSTRATED THE INDOOR AIR
QUALITY, PARTICULARLY FINE
PARTICULATE MATTER ARE
INCREASED BEYOND SIGNIFICANT
LEVELS BEYOND EPA LIMITS.
JUST PRELIMINARY DATA THAT
SHOWS YOU ACROSS 20
PARTICIPANTS HOW HIGH THE PM
LEVELS CAN GO, UNFORTUNATELY
THESE ARE NOT THINGS WE CAN
ASSESS, NECESSARILY, AS
AVERAGES.
BUT BECAUSE THE INHALED
EXPOSURES ARE SO DYNAMIC WE
LOOKED AT THIS IN A HIGHLY
TIME-RESOLVED FASHION.
ON LEFT SEE A PARTICIPANT'S
HOME OVER A 24 HOUR PERIOD.
HIGH PEAKS OF EXPOSURE.
AND ON THE RIGHT, 40 WEEKS OF
GESTATION, THERE ARE
SIGNIFICANT TIME PERIODS WITHIN
THESE 40 WEEKS WHERE MOM IS
GETTING EXPOSED TO VERY HIGH
LEVELS OF AIR POLLUTION.
THERE ARE WAYS WE CAN COLLECT
THIS DATA USING LOW-TOUCH
METHODS.
NEXT SLIDE.
SOME OF THE OUTCOMES WE HAVE
SEEN HAVE BEEN REALLY
ASTOUNDING, EVEN IN A SMALL
COHORT WE NOTICED THE INDOOR
P.M. CONCENTRATIONS ARE
ASSOCIATED WITH LOWER ASTHMA
CONTROL AS SEEN IN THE SCORES
IN PANEL A, THEY HAVE BEEN
ASSOCIATED WITH DECREASED
SYMPTOM-FREE DAYS AS SEEN IN
PANEL B, AND DECREASES IN PANEL
C AND D.
THIS IS HAVING A PROFOUND
EFFECT ON MATERNAL RESPIRATORY
HEALTH.
NEXT SLIDE, THERE ARE
SIGNIFICANT BARRIERS ONLY A FEW
I'VE ELUDED TO, THIS RELATES TO
BOTH FETAL AND MATERNAL
MORBIDITY.
NEXT SLIDE.
I SHOWED YOU A SMALL SNIPPET OF
THE INHALED ENVIRONMENT
PREGNANT MOTHERS HAVE TO
EXPERIENCE BUT THERE ARE MANY,
MANY MORE.
EMPHASIS I THINK HAS TO BE ON
INNOVATIVE APPROACHES TO REDUCE
THESE RISKS.
WE'VE SHOWN A FEW OF THEM THAT
NEEDS WIDE-SCALE EXPANSION.
THIS WAS BROUGHT UP IN THE
DISCUSSION PRIOR TO LUNCH WE
NEED MULTI-DISCIPLINARY
PARTNERSHIP, THE MFM'S AND MULL
MONOLOGISTS ARE THINKING VERY
MUCH IN PARALLEL BUT NOT
TALKING TO EACH OTHER.
SO REALLY INTEGRATED CLINICS
AND SPACES WHERE WE CAN
CO-MANAGE PATIENT IS REALLY
CRITICAL.
WHERE DO WE GO FROM HERE?
I THINK THE PANEL UPCOMING WILL
DIVE DEEP INTO THIS.
AS I MENTIONED WE UNDERSTAND
THE EXPOSURES ARE BAD.
WE UNDERSTAND MOM'S MORBIDITY
DURING PREGNANCY IS REALLY
AFFECTING TWO PATIENTS IN ONE
AND REALLY WE NEED TO COME UP
WITH INTERVENTIONS THAT ARE
REALLY DESIGNED TO COME UP WITH
BOTH PATIENTS AND HAVE THE NEXT
GENERATION HAVE OPTIMIZED
RESPIRATORY HEALTH ONGOING.
AND WITH THAT I WILL CLOSE AND
TAKE ANY QUESTIONS IN THE CHAT.
THANK YOU.
>> THANK YOU, SONALI, THE
QUESTIONS WILL BE AT THE END.
FOR THOSE ATTENDING YOU CAN PUT
THE QUESTIONS IN THE QUESTION
AND ANSWER DURING THE
PRESENTATION BUT WE WILL STILL
ANSWER AT THE END.
KNEW WE GO TO STEPHANIE
FITZPATRICK.
>> STEPHANIE FITZPATRICK.
THANK YOU FOR THIS.
I WILL TALK ABOUT INTEGRATED
CARE APPROACHES TO REDUCE
DISPARITIES AND SEVERE MATERNAL
MORBIDITY.
NEXT SLIDE, I WANT TO DISCLOSE
MY CURRENT CARE IS SFUNDED BY
THE NATIONAL INSTITUTE OF
NURSING RESEARCH.
NI. SLIDE.
JUST TO GIVE AN OVERVIEW, TO
DEFINE SEVERE MATERNITY
MORBIDITY I WILL DESCRIBE AS
SMM THROUGH MY TALK.
CONTRIBUTORS TO DISDISPARITIES
AND SMM, AND GIVE AN EXAMPLE
FROM OUR CURRENT TRIAL MOM CARE.
NEXT SLIDE.
THE CDC DEFINES VEER MATERNITY
MORBIDITY OR SMM AS UNEXPECTED
OUTCOMES OF LABOR AND DELIVERY
THAT RESULT IN SIGNIFICANT
SHORT OR LONG TERM CONSEQUENCES
TO A BIRTHING PERSON'S HEALTH.
EXAMPLES OF THAT COULD BE
MYOCARDIAL INFARCTION.
IT COULD SHOW UP DURING
POSTPARTUM ESPECIALLY IN THE
FIRST SIX WEEKS OR SO.
SMM INCREASES THE RISK FOR
RE-HOSPITALIZATION AFTER
DELIVERY AND INCREASES RISK FOR
DISABILITY AND MATERNAL
MORTALITY.
BUT MOST CASES SMM ARE
AVOIDABLE IF TIMELY APPROPRIATE
CARE IS PROVIDED.
NEXT SLIDE.
HERE WE SEE SOME DATA PRESENTED
LOOKING AT DISPARITIES AND
PREVALENCE OF SMM, NON-HISPANIC
BLACK BIRTHING PEOPLE ARE TWO
TIMES MORE LIKELY TO EXAM SMM
THAN ANY NON-HISPANIC WHITE
PATIENTS AND ACTUALLY BLACK
BIRTHING PATIENTS ARE MORE
LIKELY TO EXPERIENCE SMM
THROUGHOUT THE CONTINUUM, MORE
SO THAN ANY OTHER RACIAL ETHNIC
GROUP.
USUALLY DETECTED THROUGH LABOR
AND DELIVERY BUT CAN SHOW UP
DURING POSTPARTUM.
BLACK BIRTHING PEOPLE ARE MORE
LIKELY TO EXPERIENCE.
WILL THES DISPARITIES IN TERMS
OF AGE, EITHER YOUNGER OR OLDER
BIRTHING PEOPLE, MORE LIKELY TO
EXPERIENCE SMM.
CERTAINLY IF FOLKS ARE LIVING
IN LOW-INCOME, LOW-RESOURCE
NEIGHBORHOODS OR DELIVERING IN
PUBLIC HOSPITALS.
NEXT SLIDE.
WHAT'S INTERESTING ABOUT THE
DISPARITIES WE SEE RACIAL
ETHNIC DISPARITIES IN SMM NO
MATTER THE ECONOMIC BACKGROUND
OR MEDICAL COVERAGE OF BLACK
BIRTHING PEOPLE.
AS YOU SEE HERE, IN THIS DATA,
WHETHER BLACK BIRTHING PEOPLE
HAVE MEDICAID OR COMMERCIAL
INSURANCE THEY STILL HAVE
SIGNIFICANTLY HIGHER PREVALENCE
OF SMM, THIS IS DATA ACROSS NEW
YORK CITY HOSPITALS.
NEXT SLIDE.
SO WHAT ARE SOME OF THE
CONTRIBUTORS TO MATERNAL HEALTH
INEQUITIES PARTICULARLY IN TERM
OF SMM DISDISPARITIES.
HYPER TENSIVE DISORDERS ONE OF
THE LEADING CAUSE OF SMM,
PARTICULARLY PREECLAMPSIA.
BLACK BIRTHING PEOPLE ARE THREE
TIMES MORE LIKELY TO EXAM.
ALSO LACK OF SOCIAL SUPPORT,
WORKING PEOPLE WHO EXPERIENCE
SMM TEND TO HAVE SMALLER
SUPPORT NETWORKS AND ALSO LOWER
SATISFACTION WITH THEIR
PERCEIVED SUPPORT.
DURING PREGNANCY AND EVEN
POSTPARTUM.
LACK OF TRANSPORTATION AND
LIMITED OR NO MEDICAL COVERAGE
CAN EITHER DELAY OR INTERRUPT
GETTING TIMELY PRENATAL AND
POSTPARTUM CARE.
FOOD INSECURITY INCREASES RISK
FOR PREGNANCY COMPLICATIONS.
LACK OF ACCESS TO AFFORDABLE
HOUSING INCREASES RISK FOR SMM
ESPECIALLY AMONG THOSE WITH LOW
LEVELS OF EDUCATION.
NEXT SLIDE.
CERTAINLY INTEGRATED CARE
SETTINGS OR COMMUNITY SETTINGS
WE HAVE TO THINK OF THE
HISTORICAL, POLITICAL AND
SOCIAL CONTEXT, IN OUR CASE WE
ARE FOCUSED ON BLACK BIRTHING
PEOPLE WHICH THEY TRY TO MANAGE
HEALTH, I USE THIS FIGURE WHEN
I'M TRAINING RESEARCHERS ON MY
TEAM OR INTERVENTION STAFF TO
REALLY THINK OF THE CONTEXT
WHICH PEOPLE ARE TRYING TO HAVE
A HEALTHY PREGNANCY, BIRTH AND
HAVE A HEALTHY BABY AFTER
DELIVERY.
AND FOR WOMEN OF COLOR, THEY
ARE PARTICULARLY, MORE LIKELY
TO EXPERIENCE A NUMBER OF
DIFFERENT BARRIERS AS YOU CAN
SEE HERE IN THIS FIGURE, THAN
OTHER GROUPS OF PEOPLE.
WE HAVE TO TAKE THAT INTO
ACCOUNT WHEN TRYING TO DEVELOP
AN INTERVENTION AND MEET THEM
WHERE THEY ARE.
NEXT SLIDE.
SO FOR THE MOM AND CARE STUDY
WE THINK ABOUT ALL THE WAYS
THERE COULD BE DELAYS GREATING
THAT TIMELY APPROPRIATE CARE
THAT IS NEEDED TO PREVENT SMM.
WE LOOKED AT THE THREE DELAYS
MODEL FROM PACONELLA AND OTHERS.
THE FIRST DELAY IS THE BIRTHING
PERSON BEING ABLE TO RECOGNIZE
THEY NEED TO SEEK CARE.
CERTAINLY THAT HAS SOMETHING TO
DO WITH LEVEL OF KNOWLEDGE, IN
TERMS OF KNOWING WHEN SOMETHING
IS WRONG, KNOWING THE SIGNS AND
SYMPTOMS.
BUT ALSO, IN TERMS OF BEING
ABLE TO HAVE SUPPORT NETWORK,
WHETHER AT HOME OR IN THEIR
COMMUNITY TO HELP THEM IN TERMS
OF RECOGNIZING IT'S A TIME TO
SEEK CARE.
AND ALSO BEING ABLE TO TRUST
AND FEEL COMFORTABLE REACHING
OUT TO SEEK CARE.
THE SECOND DELAY IS BEING ABLE
TO REACH THE ACTUAL HEALTHCARE
FACILITY AND PROVIDER,
CERTAINLY THAT'S WHERE
HEALTH-RELATED SOCIAL NEEDS
COMES IN.
THE THIRD DELAY IS BEING ABLE
TO RECEIVE THAT TIMELY
APPROPRIATE CARE, ARE PROVIDERS
LISTENING TO THE PATIENTS
NEEDS, ARE THEY DOING THE RIGHT
TESTING AND DOING THE RIGHT
CARAT THE RIGHT TIME.
NEXT SLIDE.
THE MOMS CHAT AND CARE STUDY IS
PRAGMATIC CLINICAL TRIAL THAT
IS ACTIVELY ONGOING RIGHT NOW.
TRYING TO GET AND PREVENT THOSE
THREE DELAYS FROM HAPPENING TO
EVENTUALLY PREVENT SMM.
ONE OF THOSE IS UTILIZING A
CHAT BOT.
AT NORTHWELL WE HAVE THE
PREGNANCY AND PAGE CHAT
DELIVERED VIA A CHAT BOT.
THE BIRTHING PERSON RECEIVES
WEEKLY CHATS THAT CONNECT THEM
TO VARIOUS EDUCATIONAL
RESOURCES AND CONNECTS THEM TO
A 24/7 NURSE-LEAD CALL CENTER
IF THERE ARE QUESTIONS OR
CONCERNS, SYMPTOMS, IF THINGS
DON'T FEEL RIGHT THEY CAN REACH
OUT VIA THAT CHAT TO GET
SUPPORT BUT ALSO UNDERSTANDING
ABOUT WHAT'S GOING ON DURING
THEIR PREGNANCY AND POSTPARTUM
AS WELL.
NEXT.
IN ADDITION TO THE CHAT BOT
AVAILABLE TO PARTICIPANTS
THROUGHOUT THE STUDY FROM
PREGNANCY TO POSTPARTUM, THOSE
WHO ARE IN THE INTERVENTION
WILL ALSO RECEIVE 12 PRENATAL
SELF-MANAGEMENT SUPPORT
SESSIONS, FOCUSED ON NUTRITION,
PHYSICAL ACTIVITY, STRESS
MANAGEMENT, OVERALL DISEASE
PREVENTION AND MANAGEMENT,
ESPECIALLY IF THEY ARE DEALING
WITH PREECLAMPSIA, OR DIABETES.
GESTATIONAL DIABETES.
THEY CONNECT DIRECTLY TO THE
PROVIDER'S O.B. AND
CARDIOLOGIST IF THEY NEED TO BE
BROUGHT IN AND BEHAVIORAL
HEALTH SPECIALIST IF THEY NEED
TO BE BROUGHT IN.
A TRULY INTEGRATED TEAM.
THEN PATIENTS IN THE
INTERVENTION RECEIVE FIVE
POSTPARTUM CHECK-IN VISITS WITH
THE SAME MOMS TEAM AS WELL.
NEXT.
IN ADDITION TO THE CHAT BOT AND
TELEHEALTH VISITS WE ALSO
PROVIDE PATIENTS WITH
SELF-MONITORING TOOLS, TRACKING
THEIR ACTIVITY OVER TIME,
PROVIDE A FIT BIT AND MONITOR
THEIR BLOOD PRESSURE.
WE GIVE THEM A BLOOD PRESSURE
MONITOR.
YOU CAN SEE HERE HOW THEY KIND
OF LINEUP WITH THE THREE
DIFFERENT DELAYS I TALKED ABOUT
BEFORE.
IN TERMS OF MANAGEMENT SUPPORT
WITH TELEHEALTH VISITS THAT
WILL IDEALLY ADDRESS THE FIRST
DELAY, HELPING BIRTHING PEOPLE
RECOGNIZE WHEN THEY NEED TO
SEEK CARE.
AND CHAT BOT AND 24/7 NURSE-LED
CALL CENTER AND WORKING WITH
THE MOMS TEAM IN TERMS OF
PROVIDING CLINICAL, BEHAVIORAL
AND SOCIAL HEALTH CHECK-IN
VISITS AND CALLS AS WELL AS
NAVIGATION TO THE CLINICAL AND
SOCIAL SERVICES AS NEEDED TO
ADDRESS DELAY TWO AND THREE.
NEXT SLIDE.
I WANT TO ACKNOWLEDGE THE STUDY
TEAM.
CERTAINLY OUR FUNDERS NINR, AS
WELL AS OUR COMMUNITY ADVISORY
BOARD.
THIS TYPE OF WORK, ESPECIALLY
IMPLEMENTATION WORK DOESN'T
HAPPEN WITHOUT INVOLVING
COMMUNITY ADVISORS AND HEALTH
SYSTEM AND CLINICAL PROVIDERS
AS WELL.
WE DEPEND ON THEM VERY HEAVILY
IN TERMS OF ONE, UNDERSTANDING
OUR BLIND SPOTS AND ADDRESSING
THOSE BUT ALSO IN TERMS OF
MOVING THIS FROM IMPLEMENTATION
TO SUSTAINABILITY.
I ALSO WANT TO ACKNOWLEDGE NIH
PRAGUE NATICK TRIALS
COLLABORATORY AS WELL AS THE
CO-INVESTIGATORS ON THE MOM
CHAT CARE STUDY.
NEXT SLIDE.
HERE ARE SOME REFERENCES OF THE
WORK I COVERED DURING THE SLIDE
DECKS.
NEXT SLIDE, I HAVE SOME
ADDITIONAL REFERENCES.
THANK YOU.
NEXT SLIDE.
>> MIHAELA STEFAN: THANK YOU,
STEPHANIE.
NOW WE MOVE TO DR. PASSEY.
>> MEGAN PASSEY: THANK YOU FOR
THIS OPPORTUNITY DESPITE IT
BEING 3:00 IN THE MORNING.
NEXT SLIDE, PLEASE.
WHAT I WILL BRIEFLY COVER IS
WHY IT'S IMPORTANT TO OFFER
SMOKING CESSATION SUPPORT,
EVIDENCE FOR EFFECTIVE
INTERVENTIONS AND GUIDELINE
RECOMMENDATIONS AND
DISTURBINGLY LARGE
EVIDENCE-PRACTICE GAP.
THEN I WILL TALK ABOUT
EFFECTIVE IMPLEMENTATION
STRATEGIES TO CHANGE BEHAVIOR
OF CLINICIANS CARING FOR
PREGNANT WOMEN.
HERE I AM FOCUSING ON THE
CLINICIANS PROVIDING CARE, NOT
THE WOMEN THEMSELVES AND THEN I
WILL PRESENT AN EXAMPLE OF A
PROGRAM CALLED MOHM QUIT
PROGRAM.
MIDWIFES AND OBSTETRICIANS
HELPING MOTHERS TO QUIT SMOKING.
NEXT SLIDE, PLEASE.
THIS MAP IS FROM A REVIEW OF
PREVALENCE OF SMOKING DURING
PREGNANCY AROUND THE WORLD BY
SHARON LANGE ET AL..
0.2% IN TANZANIA TO 38% IN
NATIONAL LEVEL.
RECOGNIZING SOME POPULATION
GROUPS THERE ARE ACTUALLY MORE
THAN 50% OF PREGNANT PEOPLE
WILL BE SMOKERS. SO THIS IS
REALLY VERY MUCH AN EQUITY
ISSUE.
IT'S GENERALLY MORE COMMON IN
HIGHER INCOME COUNTRIES BUT USE
OF SMOKELESS TOBACCO IS MORE
COMMON IN SOME LOW AND MIDDLE
INCOME COUNTRIES SO THAT ALSO
CAUSES PROBLEMS.
NEXT SLIDE, PLEASE.
SO WHAT IS THIS MEASURE?
SMOKING DURING PREGNANCY IS THE
MOST IMPORTANT PREVENTABLE
CAUSE OF ADVERSE PREGNANCY
OUTCOMES.
SMOKING DOUBLES AND TRIPLES
RISK OF MULTIPLE COMPLICATIONS
FOR THE BABY.
STILLBIRTH, PRE-TERM BIRTH AND
LOW BIRTH WEIGHT LISTED HERE
AND ALSO INCREASES THE RISK OF
OTHER ADVERSE OUTCOMES I HAVE
LISTED INTEREST FOR THE BABY.
IT ALSO INCREASES HEALTH RISK
TO THE MOTHER, INCREASING
PREGNANCY COMPLICATIONS AS WELL
AS ONGOING HARMS ASSOCIATED
WITH SMOKING GENERALLY.
SO THESE HARMS ARE BOTH
EXTENSIVE AND THEY ARE LIFELONG.
FORTUNATELY, THE RISKS TO
MOTHER AND BABY ARE
SIGNIFICANTLY REDUCED IF WOMEN
STOP SMOKING DURING PREGNANCY.
QUITTING SMOKING AT ANY STAGE
OF PREGNANCY IS BENEFICIAL, BUT
THE EARLIER IN PREGNANCY WOMEN
QUIT SMOKING, THE BETTER.
NEXT SLIDE, PLEASE.
SO THERE'S NOW EXTENSIVE AND
COMPELLING EVIDENCE THAT BRIEF
BEHAVIORAL INTERVENTIONS
DELIVERED BY PRENATAL CARE
PROVIDERS SIGNIFICANTLY
INCREASED QUITTING RATES AND
THEY REDUCE LOW BIRTH WEIGHT
AND NOW THERE IS EVIDENCE THAT
THEY REDUCE ADMISSIONS TO N
ICU'S.
BASED ON EVIDENCE WE HAVE
MULTIPLE GUIDELINES FOR MANY
COUNTRIES AND I'M SHOWING THE
WHO, AUSTRALIAN AND U.S.
GUIDELINES HERE.
ALL OF THIEZ RECOMMEND BRIEF
INTERVENTIONS SHOULD BE
PROVIDED.
MOST GUIDELINES RECOMMEND USE
OF FIVE A'S AND THESE SHOULD BE
PROVIDED CONSISTENTLY AND EVERY
CLINICAL ENCOUNTER.
THE FIVE A'S INVOLVE ASKING AT
THE FIRST ANTENATAL PRENATAL
VISIT.
IN AUSTRALIA WE CALL THAT
ANTENATAL, SO I'M TRYING TO GET
MY LANGUAGE RIGHT.
ASKING EVERY WOMAN WHETHER SHE
SMOKES, FOR EVERY WOMAN WHO
DOES SMOKE, ASSESSING THEIR
DEPENDENCY AND UNDERSTANDING
WHERE THEY LIVE, PROVIDING
ADVICE BEST THING YOU CAN DO
FOR YOUR HEALTH AND HEALTH OF
YOUR BABY IS TO STOP SMOKING
AND PROVIDING BRIEF COUNSELING
ON THE BENEFITS OF QUITTING.
PROVIDE ASSISTANCE WITH BRIEF
BEHAVIORAL COUNSELING, ADDING
NRT IF NEEDED.
THAT COULD BE TELEPHONE SUPPORT
OR FACE-TO-FACE.
NEXT SLIDE, PLEASE.
UNFORTUNATELY, DESPITE THE
STRONG EVIDENCE BASE AND THE
FACT WE HAVE HAD THESE
GUIDELINES FOR SEVERAL DECADES
NOW THERE'S AN INCREDIBLY LARGE
EVIDENCE PRACTICE GAP BASE.
IN OUR OWN RESEARCH IN NEW
SOUTH WALES WE FOUND ONLY 77%
OF MIDWIFES REPORT THEY ALWAYS
ASK WOMEN ABOUT SMOKING AT
THEIR FIRST APPOINTMENT.
LESS THAN 40% CONSISTENTLY
PROVIDE ANY COUNSELING AT THAT
APPOINTMENT AND LESS THAN 25%
ACTUALLY CONTINUE TO ASSESS
SMOKING STATUS AND SUBSEQUENT
APPOINTMENTS AND THEREFORE
PROVIDING CONTINUING CARE.
AUSTRALIA STILL HAS 9% OF WOMEN
SMOKING DURING PREGNANCY AND
SOME MARGINALIZED GROUPS HAVE
RATED OVER 50%.
WHILE MANY MANAGE TO QUIT, MANY
RELAPSE DURING THE PREGNANCY
AND 57% ARE STILL SMOKING IN
THE SECOND HALF.
WE KNOW WOMEN ARE HIGHLY
MOTIVATED TO QUIT SMOKING.
VAST MAJORITY OF WOMEN WANT TO
DO THE VERY BEST THEY CAN FOR
THEIR BABY BUT NOT GIVEN
ADEQUATE HELP TO ACHIEVE THIS.
THIS IS A MASSIVE MISSED
OPPORTUNITY TO IMPROVE THE
HEALTH AND WELL-BEING OF THE
BABY AND THE MOTHER.
NEXT SLIDE, PLEASE.
SO, HOW DO WE IMPROVE
IMPLEMENTATION SUPPORT?
THERE ARE SYSTEMATIC REVIEWS
THAT HAVE LOOKED AT
EFFECTIVENESS OF IMPLEMENTATION
STRATEGIES IN IMPROVING
IMPLEMENTATION OF SMOKING
CESSATION, INCLUDING AUDIT AND
FEEDBACK ENHANCES EFFECTIVENESS
OF OTHER STRATEGIES, IT'S NOT
EFFECTIVE ON ITS OWN.
USING MULTIPLE IMPLEMENTATION
STRATEGIES IS MORE EFFECTIVE
THAN ONE OR TWO, AND USING
THEORETICAL IMPLEMENTATION
SCIENCE FRAMEWORKS AND TOOLS TO
TAILOR INTERVENTIONS TO THE
LOCAL CONTEXT IS MORE E
FEKTDIVE.
THERE'S NO EVIDENCE OF
STRATEGIES THAT ACTUALLY
IMPROVE PROVISION OF FOLLOW-UP
SUPPORT.
BUT WE CONTINUE TO TRY.
NEXT SLIDE, PLEASE.
SO NOW I WILL JUST PRESENT AN
EXAMPLE OF HOW WE USE
IMPLEMENTATION SCIENCE
APPROACHES TO TRY TO IMPROVE
THE IMPLEMENTATION OF SMOKING
CESSATION SUPPORT HERE IN NEW
SOUTH WALES. THIS IS THE MOHM
QUIT PROGRAM STANDING FOR
MIDWIFES AND OBSTETRICIANS
HELPING MOTHERS TO QUIT SMOKING.
NEXT SLIDE.
WE USE THIS BEHAVIORAL CHANGE
WHEEL WHICH IS A METHOD FOR
DEVELOPING BEHAVIOR CHANGE
INTERVENTIONS, WORKING ON THE
TARGET BEHAVIOR TO DESIGN THE
INTERVENTION AND DELIVER THE
INTERVENTION.
THERE ARE MULTIPLE STEPS IN
EACH STAGE.
IN OUR CASE, TARGETING
INTERVENTION WITH CLINICIAN
BEHAVIOR WANTED TO PROVIDE
CESSATION SUPPORT TO WOMEN
CONSISTENT WITH THE GUIDELINES.
IN ORDER TO UNDERSTAND THE
BEHAVIOR, WE UNDERTOOK
QUALITATIVE RESEARCH AND
SURVEYS WITH MIDWIFE AND
OBSTETRICIANS AND MANAGEMENT OF
SERVICES GUIDED BY THEORETICAL
FRAMEWORK, IN ORDER TO
UNDERSTAND THE BARRIERS AND
COME TO A COMPREHENSIVE
UNDERSTANDING WHAT WAS THE
PROBLEM HERE.
AND THEN WE FOLLOWED THE
REMAINING STEPS IN THE SLIDE.
NEXT SLIDE, PLEASE.
I REALIZE THE WRITING IS SMALL,
I WANT TO DEMONSTRATE BRIEFLY
THE PROCESS WE FOLLOWED IN THE
BEHAVIOR CHANGE WHEEL METHOD.
THE BARRIER IS KNOWLEDGE OF THE
GUIDELINES AND 5A'S WAS VERY
POOR.
THAT COMES INTO THE TDF DOMAIN,
THEORETICAL DOMAIN FRAMEWORK
DOMAIN, POTENTIAL INTERVENTION
FUNCTIONS WE SELECT OPTIONS TO
CHANGE THAT, WE SELECTED
EDUCATION, WHICH IS FAIRLY
OBVIOUS.
SOME ARE LESS OBVIOUS AND
BEHAVIOR CHANGE TECHNIQUES WE
MAPPED THIS TO, ED INSTRUCTION
HOW TO PERFORM A BEHAVIOR, HOW
AND WHEN TO PROVIDE THE 5A'S
AND INFORMATION ABOUT OTHERS.
AND INCREDIBLE SOURCE, HIGHLY
RESPECTED SENIOR MIDWIFE WELL
KNOWN A CAOS THE STATE.
SO THAT'S PRETTY OBVIOUS AND
STANDARD PRACTICE, I THINK.
WE NOW LOOK AT THE BOTTOM LINE
IN THIS TABLE.
PRIORITIZING OTHER HEALTH
ISSUES OVER SMOKING WITH NOT
SUCH AN OBVIOUS ONE TO START.
WITH THIS WE SELECTED PER --
PERSUASION, WE WANTED TO
PERSUADE PEOPLE TO PRIORITIZE
SMOKING MORE HIGHLY, NOT
NECESSARILY OVER OTHER THINGS
BUT MORE HIGHLY.
WE HIGHLIGHTED THE HEALTH
CONSEQUENCES OF SMOKING AND
COMPARED TO PREECLAMPSIA.
THEY HAVE SIMILAR HEALTH
OUTCOMES AND PREVALENCE AND
PROBLEMS IN TERMS OF HEALTH
OUTCOMES FOR THE MOTHER AND
BABY.
AND THEN DEMONSTRATE THE CLEAR
DIFFERENCES IN THE RESPONSE AND
EXTREME SIGNIFICANT DIFFERENCES
IN THE WAY THEY ARE MANAGED.
WE HAD FEEDBACK, THIS IS
EXTREMELY POWERFUL AND MANY
PEOPLE DESCRIBE THIS TO US AS
BEING THEIR A-HA MOMENT.
THEY FINALLY UNDERSTOOD WHY
THIS MATTERED.
NEXT SLIDE, PLEASE.
I DON'T HAVE TIME TO GO INTO
THE DETAILS THE PROCESS
FOLLOWING THAT.
THERE'S A LOT MORE TO THE
CO-DESIGN THAN THIS.
IT WAS A CO-DESIGN PROCESS
WORKING WITH MIDWIFES,
OBSTETRICIANS AND MANAGERS
POLICY MAKERS CONTROL PEOPLE.
BUT THIS IS THE FINAL DIAGRAM
OF THE FINAL INTERVENTION.
INNOVATIVE PROGRAM.
IT TAKES A WHOLE SYSTEM
APPROACH AND DESIGNED TO BE
REPLICABLE, SUSTAINABLE AND
SCAPABLE.
IT'S INTENDED TO BE VIRTUAL
VISUAL REPRESENTATION BECAUSE
EACH IS INTERDEPENDENT.
WE CAN'T JUST HAVE ONE WHIRING
AWAY ON ITS OWN AND NOT
ACHIEVING ANY OUTCOMES.
NEXT SLIDE, PLEASE.
THIS IS MY FINAL SLIDE.
TAKE-HOME MESSAGES IT'S
CRITICAL THAT WE PROVIDE GOOD
EVIDENCE-BASED SUPPORT TO WOMEN
AND STOP SMOKING.
DUTY OF CARE THAT WE FACE.
CHANGING BEHAVIOR ISN'T THAT
SIMPLE.
IT REQUIRES TAILORED
INTERVENTIONS. NEW SOUTH WALES
IT'S BEEN THE RESPONSE TO DATE.
WE TRAIN THE MIDWIFES WE DO
NOTHING ELSE.
NOW WE HAVE CHANGED THAT.
THANK YOU.
>> MIHAELA STEFAN: THANK YOU.
NOW WE MOVE TO OUR LAST
SPEAKER, JENNIFER TAYLOR-COUSAR.
>> JENNIFER: THANK YOU FOR
INVITING ME.
I WILL FOCUS ON SOMETHING
THAT'S QUITE RARE COMPARED TO
ASTHMA AND USE CYSTIC FIBROSIS.
I DO RECEIVE FUNDING.
BECAUSE IT AFFECTS 200,000
PEOPLE WORLDWIDE I WANT TO GIVE
A LITTLE CONTEXT FOR THOSE WHO
DON'T THINK OF CYSTIC FIBROSIS
EVERY DAY AND THERE'S
MISCONCEPTION WHO IS AFFECTED.
GENETIC DISORDER CAUSED BY
VARIANCE IN CFTCR GENE, ENCODES
SAME NAME, CFTR PROTEIN
FUNCTIONS ANION CHANNEL.
THE MAJOR MAN FESS STATIONS ARE
CHRONIC BRONCO PULMONO YAIRY
INFECTIONS, PANCREO ATE K
INSUFFICIENCY, BOTH ENDOCRINE
AND EX CIN AND SUBSEQUENT CF
SDIEB AT ABOUT 40% 2050%.
THE MAJORITY OF MALES ARE
INFERTILE BECAUSE OF
CONGENITAL BILATERAL ABSENCES
OF VAS DEFERENS.
BACK IN 1938 WHEN DR. DOROTHY
ANDERSEN DESCRIBES AS A
CLINICAL ENTITY, SHE POINTED
OUT THERE WAS A BLACK CHILD AND
HISPANIC CHILD AND SHE SAID THE
RACIAL AND GEOGRAPHIC
DISTRIBUTION OF CYSTIC FIBROSIS
WAS WIDE.
BUT THIS MESSAGE WAS NOD HEEDED
AND CYSTIC FIBROSIS HAS BEEN
TAUGHT TO BE A DISEASE THAT
OCCURS IN PEOPLE WHO ARE WHITE
TO THE DETRIMENT OF PEOPLE OF
COLOR.
WE ARE ACKNOWLEDGING MORE AND
MORE WHAT DR. ANDERSEN TOLD US
BACK IN 19 38.
CYSTIC FIBROSIS CAN OCCUR WITH
ANY ETHNICITY.
BECAUSE IT IS TAUGHT TO BE ONLY
OCCURRING IN PEOPLE WHO ARE
WHITE.
WE HAVE SEEN LATE AND MISSED
DIAGNOSIS OF PEOPLE WITH CF.
IN FACT, PEOPLE CONTINUE TO BE
TOLD YOU HAVE THE CLASSIC SIGNS
AND SYMPTOMS OF CF, I WOULD
HAVE DIAGNOSED YOU WITH IT IF
YOU WEREN'T SOMEONE OF COLOR.
BECAUSE OF LATE AND MISSED
DIAGNOSIS AND SOCIAL
DETERMINANTS OF HEALTH
INCLUDING RACISM IN MEDICINE,
PEOPLE OF COLOR HAVE MORE
MORBIDITY AND MORTALITY WITH
CYSTIC FIBROSIS.
NEXT SLIDE.
IN 2019, THE APPROVAL OF
GAME-CHANGING ORAL MEDICATIONS
THAT IMPACT THE CFTR PROTEIN
DEFECT IMPROVE CHLORIDE
TRANSPORT AND THEREFORE AFFECT
THE BASIC DEFECT IN CF WERE
APPROVED FOR THE MAJORITY OF
PEOPLE IN HIGH-INCOME COUNTRIES.
HOWEVER BECAUSE OF VARIANTS
OCCUR IN PEOPLE OF COLOR ARE
LESS WELL STUDIED AND MORE
RARE, PEOPLE OF COLOR CONTINUE
TO HAVE SIGNIFICANT HEALTH AND
EQUITY IN CYSTIC FIBROSIS.
WHEN THEY ARE DIAGNOSED.
THEY ARE LESS LIKELY TO BE
PRESCRIBED THESE NEW DRUGS.
NEXT SLIDE.
WHAT WE DO KNOW ABOUT HOW THESE
DRUGS ARE AFFECTING PEOPLE WITH
CYSTIC FIBROSIS, INCLUDING SOME
PEOPLE OF CF WHO QUALIFY FOR
THESE DRUGS IS PREGNANCY RATES
HAVE SKY ROCKETED SINCE THE
APPROVAL OF THESE DRUGS.
ALESCATTIR, IVAKAFTER WERE
APPROVED.
CHANNELS IN THE CERVIX MAKING
IT EASIER FOR PEOPLE TO GET
PREGNANT BUT ALSO THEIR HEALTH,
LUNG FUNCTION, NUTRITION
STATUS, RATE OF MULL MON NAIR
RY EXACERBATIONS ARE ALL
IMPROVED WITH THE USE OF THESE
NEW ORAL DRUGS.
[ TEZ IFA ]
NEXT SLIDE.
WHAT DO WE KNOW ABOUT
DEMOGRAPHICS OF PEOPLE WITH
CYSTIC FIBROSIS AND PEOPLE WHO
ARE PREGNANT.
THE FIRST COLUMN SHOWS GENERAL
CF POPULATION AND SECOND COLUMN
IS PREGNANT CF.
ABOUT 3.5% IDENTIFY AS BLACK.
5% OTHER RACE AND 10% HISPANIC.
NUMERICALLY THE RATES ARE A
LITTLE DISPROPORTIONATE
COMPARED TO PEOPLE IN THE
GENERAL POPULATION OF CF IN
PEOPLE OF COLOR.
I SUSPECT THIS GOES BACK TO THE
SOCIAL DETERMINANTS OF HEALTH
BUT IT'S SOMETHING THAT HAS TO
BE STUDIED.
NEXT SLIDE.
SO WHAT DO WE KNOW ABOUT HEALTH
OUTCOMES IN PREGNANT PEOPLE
WITH THIS RARE LUNG DISEASE?
MOST OF THE DATA WE HAVE AT
THIS POINT IS FROM SINGLE SITE
STUDIES AND RETROSPECTIVE DATA.
THERE'S A REGISTRY ANALYSIS BUT
DONE ALMOST 30 YEARS AGO, WELL
BEFORE THE CURRENT ERA OF
MODULATE
>>ER TREATMENT OF PEOPLE WITH
CF.
PEOPLE WITH CF HAVE CHRONIC
ILLNESS.
THE SAME CHRONIC PROBLEMS THEY
HAD BEFORE THEY GOT PREGNANT
BUT HAVE TO BE MANAGED
INCLUDING WITH DRUGS THAT
AREN'T WELL STUDIED IN
PREGNANCY.
IN THE ERA BEFORE MODULATORS WE
KNOW PEOPLE WITH CF WHO BECAME
PREGNANT HAD HIGHER RATES OF
DIABETESES DURING PREGNANCY.
HIGHER RATES OF INFECTIONS,
HIGHER RATES OF PRE-TERM LABOR
AND PREECLAMPSIA, AND INFANTS
ALSO HAD MORE COMPLICATIONS.
MORE PRE-TERM BIRTH WERE MORE
LIKELY TO BE LOWER IN BIRTH
WEIGHT.
MORE LIKELY TO HAVE HYPER
BILLIRUBIN A NIEMI WRA.
USUALLY FROM SINGLE SITE
CENTERS. NEXT SLIDE.
PFAFF PRAF WHAT WE ARE REALLY
SUFFERING FROM IN RARE LUNG
DISEASE IS A PAUCITY OF SCIENCE.
BECAUSE OF THIS PAUCITY OF
DATA, MYSELF AND SEVERAL OTHERS
SHOWN ON THIS SLIDE WENT TO THE
CYSTIC FIBROSIS FOUNDATION TO
SAY WE THOUGHT WE REALLY NEEDED
THEM TO FUND A RESEARCH WORKING
GROUP.
OUR GOAL WITH THE SEXUAL HEALTH
REPRODUCTION AND GENDER
RESEARCH WORKING GROUP IS
IDENTIFY THE GAPS IN KNOWLEDGE
IN THE AREAS OF SEXUAL
REPRODUCTIVE DYSFUNCTION IN
PEOPLE WITH CF AND DEVELOP THE
INFRASTRUCTURE TO EFFICIENTLY
MOVE THESE RESEARCH PRIORITIES
FORWARD.
WHILE THE FOUNDING GROUP WAS
MADE UP OF MULL MONOLOGISTS WE
HAVE SUBSEQUENTLY ADDED A
MENTAL HEALTH SPECIALIST,
DIETICIAN AND RESEARCH
COORDINATOR AND TWO PEOPLE WITH
CF.
WE BELIEVE CO-PRODUCTION AND
CO-DEVELOPMENT OF THE STUDIES
IS CRITICAL FOR THE SUBSEQUENT
IMPLEMENTATION.
NEXT SLIDE.
ONE OF THE THINGS YOU HEARD OUR
KEYNOTE SPEAKER TALK ABOUT
EARLIER WAS A WEB-BASED
PLATFORM TO GET THE INPUT OF
THE KEY STAKEHOLDERS. SO CF
COMMUNITY VOICE IS SOMETHING
FOUNDED BY THE CF FOUNDATION
WHICH PEOPLE WITH CF AND THEIR
FAMILY MEMBERS OR PARTNERS CAN
SIGN UP AND THEY ARE CONTACTED
BY THE FOUNDATION WHEN THERE
ARE RESEARCH QUESTIONS THAT
NEED TO BE ASKED.
AGAIN WE HAVE CO-PRODUCTION AND
CO-DEVELOPMENT OF THE RESEARCH
PROTOCOLS. THERE'S A AN ADULT
ADVISORY GROUP MADE UP OF
PEOPLE WITH CF WHO GIVES US
THEIR OPINION AND THEY OFTEN
SAY NO WORK ABOUT US WITHOUT US
AND WE TAKE THAT SERIOUSLY.
ONE STUDY TO COME OUT OF
DISCUSSION WITH PEOPLE WITH
CYSTIC FIBROSIS DONE IN
CONJUNCTION WITH PEOPLE WITH
CYSTIC FIBROSIS IN TERMS OF
DESIGN IS MAY FLOWER STUDY.
PROSPECTIVE MULTI-CENTER
OBSERVATIONAL STUDY IN PREGNANT
PEOPLE WITH CF AND THEIR
INFANTS DURING WHICH WE ARE
FOLLOWING THEM THROUGHOUT
PREGNANCY AND TWO YEARS AFTER
PREGNANCY.
THE FIRST PROSPECTIVE STUDY
DONE WITH PEOPLE IN CF BOTH ON
MODULATORS AND OFF MODULATORS
SO WE CAN PROVIDE GUIDANCE
ABOUT USE OF THESE DRUGS DURING
PREGNANCY AND OUTCOMES OF THE
CFTR MODULATOR ERA AND IN THE
MODERN ERA.
SPECIFICALLY ONE THING WE
CHANGED ABOUT OUR DESIGN BASED
ON THE FEEDBACK OF PEOPLE WITH
CF TO ENSURE WE HAD A LOT OF
VISITS ESPECIALLY IN THE
POSTPARTUM PERIOD THAT COULD BE
DONE WITH TELEHEALTH, THEY SAID
WE WILL BE TIRED AND BUSY
TAKING CARE OF OUR CF AND OUR
BABY AND WE NEED TO CONTRIBUTE
OUR DATA BUT NEED TO DO IT FROM
HOME SO IT'S EASIER TO
PARTICIPATE.
AGAIN, THERE'S A PAUCITY OF
EVIDENCE-BASED GUIDANCE.
THERE WAS A TASK FORCE FOR THE
EUROPEAN RESPIRATORY SOCIETY
AND THORACIC SOCIETY OF
AUSTRALIA AND NEW ZEALAND BUT
MOST WAS BASED ON RETROSPECTIVE
DATA AND DATA AT SINGLE SITE
CENTERS WE ARE IN THE PROCESS
OF CREATING A POSITION PAPER
ABOUT SEXUAL AND REPRODUCTIVE
HEALTH THROUGH THE CF
FOUNDATION FACILITATION OF THE
GATHERING OF THE LATEESTED
EVIDENCE AND HOPEFULLY
INCLUDING SOME OF THE MAY
FLOWER'S DATA.
WE ARE INCLUDING PEOPLE WITH CF
ON THIS POSITION PAPER WHO ARE
HELPING US WITH THEIR OPINIONS
IN THE WRITING OF THIS PAPER
BECAUSE CO-PRODUCTION IS
CRITICAL.
NEXT SLIDE.
SO YOU ALSO HEARD OUR KEYNOTE
SPEAKER YESTERDAY TALK ABOUT
THE FACT THAT IT'S IMPORTANT
NOT ONLY TO INCLUDE PEOPLE IN
THE DEVELOPMENT OF THESE
RESEARCH PROTOCOLS
PARTICIPATING IN THE TRIALS BUT
ALSO THE DISSEMINATION OF THE
INFORMATION.
SO RESEARCHCON IS A WEBINAR PUT
ON PEOPLE WITH CYSTIC FIBROSIS,
WE DISSEMINATE THE RESULTS OF
THE STUDY DIRECTLY TO THE C.F.
COMMUNITY.
BREATHECONBY PEOPLE WITH
CYSTIC FIBROSIS.
WITH THAT I WILL STOP AND SAY
THANKS TO THE PEOPLE WITH CF
AND THEIR FAMILIES WHO HAVE
PARTICIPATED IN THE STUDIES TO
DATE.
ALL THE PARTICIPATING CF CARE
AND RESEARCH CENTERS AND AGAIN
THE NIH FOR FUNDING AND HOSTING
THIS IMPORTANT WEBINAR.
THANK YOU.
>> HIHAELA STEFAN: THANK YOU TO
JENNIFER AND THE PRESENTERS. I
WILL START WITH GENERAL WES TO
THE SPEAKERS, ANY OF YOU OR ALL
OF YOU WHO WANT TO COMMENT ON
THIS.
HOW DO YOU PROMOTE
COLLABORATION BETWEEN CLINICAL
SCIENTISTS, RESEARCHERS, HEALTH
CASE SYSTEM, HEALTH POLICY
GOVERNMENT, COMMUNITY
ORGANIZATIONS AND BIRTHING
PEOPLE?
>> MEGAN PASSEY: WOULD YOU LIKE
TO GO FIRST, JENNIFER?
>> JENNIFER TAYLOR-COUSAR: SURE.
WEBINARS LIKE THIS ARE HELPFUL,
IT'S UP TO RESEARCHERS TO REACH
OUT TO COMMUNITY GROUPS TO GET
THEIR INVOLVEMENT BECAUSE WE
CAN'T EXPECT YOU KNOW, THERE
WILL BE SOME WHO COME TO US BUT
WE CAN'T EXPECT THEM TO DO IT
ON THEIR OWN.
THEN ALSO I THINK TO PARTNER
WITH THEM TO RESEARCH, THERE
HAVE BEEN MARCHES ON THE HILL,
WE WILL OFTEN WRITE THIS PAPER
IN CONJUNCTION WITH PEOPLE WITH
CF.
IT TAKES EFFORT BUT ALSO OUR
EFFORT AS RESEARCHERS AND
CLINICIANS TO INVOLVE THE
STAKEHOLDERS THAT NEED TOE BE
INVOLVED.
>> MEGAN PASSEY: I AGREE WITH
JENNIFER.
IT WAS INITIATED BY A SENIOR
MIDWIFE WHO CAME TO US AND SAID
WHO WE WORKED WITH ON ANOTHER
PROJECT.
SAID WE HAVE A PROBLEM, CAN YOU
HELP.
SHE WAS FUNDAMENTAL ENGAGING
OTHER PEOPLE ACROSS THE
HEALTHCARE SYSTEM.
SHE HAD REALLY GOOD EXTENSIVE
NETWORKS WITHIN THE NEW SOUTH
WALES HEALTH SYSTEM WITHIN
MATERNITY CARE.
THE WORK WE HAVE BEEN DOING IS
TOUGH, NOT SO MUCH INVOLVING
COMMUNITY GROUPS AND WOMEN
BECAUSE THE TARGET AUDIENCE FOR
OUR PROGRAM, IT'S THE HEALTH
SYSTEM.
WE ARE ABOUT TO START WORKING
ON POSTPARTUM RHODE ISLAND
LAPSE PREVENTION WORK AND THAT
IS VERY MUCH WORKING WITH
CONSUMERS BECAUSE THERE ISN'T
GOOD EVIDENCE BASE ALREADY
THERE.
JUST REACHING OUT TO ALL THE
LOCAL COMMUNITY GROUPS THAT
WORK WITH YOUNG MUMPS.
-- MUMS.
YOU JUST HAVE TO MAKE THE
EFFORT.
IT IS HARD WORK.
MY EXPERIENCE, PARTICULARLY
WITH THE COMMUNITY GROUPS, THEY
DON'T NECESSARILY SEE THE
RELEVANCE TO THEM.
I MEAN, IT'S OBVIOUSLY
DIFFERENT FOR PEOPLE SUFFERING
FROM CYSTIC FIBROSIS.
BUT WE ARE REACHING OUT TO PLAY
GROUPS AND OTHER GROUPS WORKING
WITH YOUNG MOMS, NOT
NECESSARILY IMMEDIATELY
INTERESTED.
>> I THINK THERE'S SOME
CHALLENGES AS WELL AS
OPPORTUNITIES HERE, BECAUSE
PREGNANCY, UNFORTUNATELY ON ONE
HAND ONLY LASTS 40 WEEKS, MINUS
OR PLUS.
AND SO THERE'S THIS VERY SORT
OF TIME PRESSURE TO TRY TO GET
THE IMPLEMENTATION AND
ENGAGEMENT, YOU KNOW, AND OFTEN
TIMES BECAUSE PATIENTS PRESENT
LATER IN PREGNANCY THIS MIGHT
BE A REALLY CONTRACTED
TIMEFRAME.
ON THE OTHER HAND, YOU KNOW,
PATIENTS GET PREGNANT MULTIPLE
TIMES, RIGHT?
YOU HAVE THE OPPORTUNITY TO
ENGAGE MOTHERS OF EXISTING
CHILDREN AND HELP THEM THINK
ABOUT WHAT THEIR NEXT PREGNANCY
WILL LOOK LIKE.
I SEE IT AS A DISADVANTAGE AND
ADVANTAGE ALL ROLLED INTO ONE.
>> MIHAELA STEFAN: THANK YOU.
JENNIFER, I HAVE A QUESTION FOR
YOU, YOU MENTIONED THE ADVISORY
BEING ON THE SAME IDEA BUT
DIDN'T HAVE TIME TO ELABORATE.
CAN YOU GIVE IDEAS HOW THEY
SHAPE INTERVENTION, IF YOU USE
CO-DESIGN, WE HEARD A LOT ABOUT
CO-DESIGN WHICH SEEMS LIKE
GREAT METHODOLOGY TO INVOLVE
PATIENTS, CLINICIANS AND OTHERS.
IF YOU USE THIS AND CONTINUE TO
USE COMMUNITY ADVISORY.
WHAT WE HAVE SEEN IS MANY TIMES
WE USE IT AT THE BEGINNING TO
GET INPUT BUT NOT AFTER OR
DURING THE STUDY.
THANK YOU.
>> STEPHANIE: THANK YOU,
MIHAELA, WE HAVE ABOUT FOUR
MATERNAL HEALTH JUSTICE
ORGANIZATIONS, IN NEW YORK.
BLACK WOMAN OWNED AND RAN.
WE INCLUDE IN THE GRANT WRITING
ITSELF.
WE MEET WITH OUR COMMUNITY
ADVISORY BOARD ACTUALLY EVERY
THREE MONTHS, IF NOT A LITTLE
SOONER IN BETWEEN, IT DEPENDS
WHAT'S GOING ON.
WE HAVE A MEETING COMING UP
WITH THEM NEXT WEEK.
AS WE DEVELOP RECRUITMENT
MATERIALS AND THOUGHT ABOUT THE
WHOLE DESIGN OF THE STUDY, WE
BROUGHT THEM IN EARLY ONTO HELP
US THINK ABOUT WHAT ARE WE
MISSING, WHAT IS THE BEST WAY
TO LET PATIENTS KNOW ABOUT THIS
PROGRAM AND GET THEM ENGAGED
AND ONCE WE GET FINDINGS WHAT
IS THE BEST WAY TO DISSEMINATE
OUR FINDINGS. THAT'S PROBABLY
WHY WE ARE WORKING WITH THEM
THROUGHOUT THE FIVE YEARS OF
THE RO1.
WE WANT THEM TO REALLY FEEL
THIS IS SOMETHING THEY ARE A
PART OF AND HELP US DISSEMINATE
IF IT IS EFFECTIVE OR FURTHER
REFINE IT FOR THE NEXT PROJECT
AND FOR THE NEXT GRANT.
>> MIHAEL STEFAN: YEAH, IT'S
IMPORTANT BECAUSE WE ARE
TRAINED AT CLINICAL TRIALS WE
HAVE TO KEEP THE INTERVENTION
THE SAME AND NOT CHANGE IT,
THAT'S NOT THE RIGHT WAY TO DO
AN IMPLEMENTATION, BUT THERE'S
STILL A STRUGGLE WHEN YOU WRITE
YOUR APPLICATION HOW WOULD YOU
DESCRIBE THAT.
I KNOW WE KEEP THE CORE
COMPONENT AND WORK ON THE
MARGINS. BUT THAT'S, I THINK,
VERY IMPORTANT.
AND WHAT THEY LEARN IS THAT
CONTINUING TO GET INPUT FROM
THOSE WHO ARE RECIPIENTS OF THE
INTERVENTION.
>> JENNIFER TAYLOR-COUSAR: I
WANT TO BRING THAT UP, THEY
ALREADY DESIGNED THE STUDY AND
NEVER TALKED TO THE
PARTICIPANTS.
>> MIHAELA STEFAN: I WAS A
INVESTIGATOR AND NOW PART OF
THE FUNDER.
HOW DO YOU DO ALL THIS WORK
PRIOR TO GETTING YOU DO ALL
THIS COMMUNITY ADVISORY.
MARY DIXON SAID IT TAKES A LOT
OF WORK AND TIME BUT NEEDS
FUNDING.
I'M WONDERING DO YOU HAVE
IDEAS, MAKE THE INSTITUTION
RESPONSIBLE.
THEY HAVE TO PUT SOME
RESOURCES,MAYBE NOT SPECIFIC
FOR AN INVESTIGATOR BUT FOR IN
GENERAL FOR THE INVESTIGATORS
TO DO THIS WORK PRIOR?
>> JENNIFER: THERE ARE PLANNING
GRANTS AND DURING THE PLANNING
GRANT PERIOD IS WHEN WE HAVE
ASSEMBLED THE COMMUNITY
ADVISORY BOARDS FOR THE STUDIES
SO WE CAN PAY THE PARTICIPANTS
APPROPRIATELY FOR THEIR TIME
AND NOT JUST ASK THEM TO
VOLUNTEER.
BUT IT REQUIRES SOME FUNDING
WHETHER THAT'S AN INTERNAL
GRANT OR PLANNING GRANT.
>> STEPHANIE: I WOULD ASK THAT
BACORE ALSO HAS COMMUNITY
ENGAGEMENT AND GRANTS I THINK
FOR PEOPLE WHO ARE STARTING OUT.
>> MEGAN PASSEY: WE HAVE
SIMILAR PROCESS AT THE DAFFODIL
CENTER AND COMMUNITY ADVISORY
BOARD.
I CAN'T REMEMBER THEIR EXACT
NAME.
THEY WILL REVIEW AND PROVIDE
ADVICE ON INDIVIDUAL PROJECTS
BUT THEY AREN'T ONGOING
INVOLVEMENT WITH THE PROJEKTS
BUT THEY WILL HELP YOU CONNECT
WITH, THEY WILL WORK WELL FOR
THE YOUNG EARLY CAREER
INVESTIGATORS TO START
DEVELOPING THEIR PROJECTS.
>> MIHAELA STEFAN COAL THANK
YOU, THAT'S SO IMPORTANT.
>> MEGAN PASSEY: WE HAVE
FUNDING TO PROVIDE CONSUMERS TO
PROVIDE ADVICE.
>> MIHAELA STEFAN: AT THE
INSTITUTION WE HAVE THE CTA
THAT MAY PROVIDE SOME TYPE OF
SUPPORT BUT SOME YOUNG
INVESTIGATORS DON'T EVEN KNOW
THIS EXISTS AND THEY NEED TO DO
THE WORK AND AFTERTHOUGHTS
ISN'T THE BEST WAY.
I SEE WE DON'T HAVE ANY
QUESTIONS IN THE Q&A.
SO I WILL KEEP ASKING SOME THAT
WE ALREADY HAVE PLANNED.
SO SONALI I HAVE A QUESTION, WE
KNOW THE PRENATAL EXPOSURE TO
ENVIRONMENTAL CONTAMINANTS MAY
AFFECT FETAL HEALTH AND
PREGNANCY ARE CRITICAL
SENSITIVE WINDOWS OF
SUSCEPTIBILITY AS YOU SAID,
WHAT PRENATAL INTERVENTIONS CAN
BE IMPLEMENTED TO MITIGATE THE
EFFECT OF MATERNAL
ENVIRONMENTAL EXPOSURE ON FETAL
AND POST NATAL DEVELOPMENT.
DON'T TALK ABOUT TOBACCO
BECAUSE THAT IS MEGAN'S.
>> SONALI BOSE: MY ANSWER WILL
BE SHORT BECAUSE I THINK
THERE'S A DEARTH.
THERE'S SMALL TRIALS WE BUILT
OUR WORK ONTO REDUCE EXPOSURE
TO ENVIRONMENTAL HAZARDS
REDUCTION OF INDOOR AIR
POLLUTION VIA FREE-STANDING AIR
PURIFIERS THIS HAS BEEN SHOWN
TO REDUCE EXPOSURES IN
NON-PREGNANT POPULATIONS AND WE
ARE TRYING TO DEMONSTRATE IN A
NON-PREGNANT POPULATION THAT
TRANSLATES TO BENEFIT.
THAT WOULD BE ONE POTENTIAL
AREA OF BENEFIT.
THE HARDER PART ARE THE
EXTERNAL EXTERNALISM POSE URS
LIKE AMBIENT POLLUTION.
WE HOPE FOR DIET TO HELP MAKE
THEM RESILIENT.
TO UNDERSTAND THE EXOMEIC,
THESE ARE EXISTING IN MIXTURES
THEY DON'T EXIST INDIVIDUALLY.
IF YOU ARE TRYING TO COMBAT A
PARTICULAR ENVIRONMENTAL
EXPOSURE YOU HAVE TO THINK OF
WAYS OF INCREASING RESILIENCE
OF THE INDIVIDUAL.
SOME COULD HAPPEN THROUGH
DIETARY, STRESS REDUCTION AND
OTHER LIFESTYLE AND WELL-BEING
TARGETED INTERVENTIONS.
THE SHORT ANSWER IS THEY DON'T
EXIST YET.
WE HAVE BEEN TRYING TO PUT IN
GRANTS TO GET THAT WORK STARTED.
BUT I'M SURE WITH BRAINSTORMING
ACROSS EXPERTS WE COULD COME UP
WITH EVEN MORE INTERVENTIONS TO
HELP MATE GATE SOME OF THOSE
ENVIRONMENTAL THREATS.
>> MIHAELA STEFAN: THANK YOU.
THERE'S A GAP IN RESEARCH WHERE
PREGNANT WOMEN ARE NOT INCLUDED.
BECAUSE WE HAVE STUDIS WITH
PURIFIERS BUT PREGNANT WOMEN
ARE NOT SPECIFICALLY TARGETED
OR INCLUDED IN SOME OF THEM.
WE KNOW THEY ARE KIND OF
EXCLUDED FROM THE BEGINNING.
>> SONALI BOSE: EDUCATION IS
IMPORTANT, EVEN MANY ANY
CLINICAL PRACTICE, AN
ASTOUNDING NUMBER OF PATIENTS
AREN'T AWARE, AN THEIR EARS ARE
PRETTY PERKED UP WHEN THEY ARE
PREGNANT.
SEEING BEFORE AND AFTER, THEY
COME IN AND SAY WHAT DO I NEED
TO WATCH OUT FOR NOW THAT I'M
PREGNANT.
IT'S A VERY TEACHABLE MOMENT.
I THINK MASK WEARING HAS BECOME
MORE NORMALIZED ESPECIALLY IN
NEW YORK AFTER COVID.
PATIENTS ARE NOT AWARE WHAT TO
WATCH OUT FOR AS A WHOLE.
>> MIHAELA STEFAN: I GUESS
PATIENTS ARE NOT AWARE,
CLINICIANS OR PHYSICIANS ARE
AWARE, SAME WITH TOBACCO, HOW
MUCH EFFORT WE MAKE TO TELL THE
PATIENT.
MEGAN, I HAVE A QUESTION FOR
YOU.
YOU SHOWED US ABOUT YOUR STUDY
AND HOW YOU WORK TO EDUCATE
CLINICIAN AND GET THEM MORE
INVOLVED.
CAN YOU DISCUSS A BIT MAIN
BARRIERS FOR THE CLINICIAN IN
DOING SMOKING CESSATION,
SPECIFICALLY FOR PREGNANT WOMEN
AND KEY LEARNING STRATEGIES FOR
SUCCESS.
I WAS STRUCK THAT YOU SAID NRT
CAN BE USED BUT I WONDER IF YOU
CAN ALSO COMMENT ON CLINICIANS
AN PATIENT RELUCTANCE TO USE
NRT.
THINKING FOR EXAMPLE WHAT
SONALI TALKED ABOUT WITH
ASTHMA, MIGHT BE A SIDE EFFECT
OF THE N.R.T., IF YOU COULD
COMMENT ON THAT, THANK YOU.
>> MEGAN PASSEY: THANK YOU.
I WILL START WITH THE NRT, I
THINK FOR A LONG TIME THEY HAVE
BEEN AFRAID TO USE IT IN
PREGNANCY BUT THERE'S BEEN
TRIALS, CERTAINLY IN THE U.K.
I'VE BEEN FAMILIAR WITH, TRIALS
OOZING NRT IN PREGNANCY.
THEY DO DEMONSTRATE IMPROVED
OUTCOMES.
IT'S MARGINAL AND THE PROBLEM
IS ADHERENCE TO USE OF NRT AS
MUCH AS ANYTHING ELSE.
CLINICIANS ARE CONCERNED ABOUT
THE SIDE EFFECTS, BUT SO ARE
OUR PATIENTS.
THE WOMEN WHO ARE PREG NAONT
ARE AT LEAST IN MY EXPERIENCE
AFRAID TO USE IT, BUT
SIGNIFICANTLY I THINK THAT IS
COMING OUT THAT, WHILE NICOTINE
IS STILL HARMFUL, ANY FORM OF
NICOTINE IS HARMFUL, IT DOESN'T
MAT IRWHAT FORM IT TAKES, IT IS
ALWAYS HARMFUL.
BUT NRT DOES NOT CONTAIN ALL
THE OTHER HARMFUL COMPONENTS OF
TOBACCO SMOKE AND THEREFORE IT
IS SAFER.
AND THE EVIDENCE IS NOW THAT
THE RATES OF COMPLICATIONS
ASSOCIATED WITH USE OF NRT IS
LOW.
SO WE THINK IT CAN BE
CAUTIOUSLY PRESCRIBED BUT IN
AUSTRALIA THE POLICY IS YOU
ONLY RECOMMEND NRT ONCE, IF
THEY ARE TRYING TO QUIT USING
BEHAVIORAL STRATEGIES AND HAD
SOME COUNSELING AND STILL
HAVEN'T BEEN ABLE TO WE OFFER
NRT.
THAT'S THE STATE WHERE WE ARE
IN AUSTRALIA.
IN THE U.K. THEY RECOMMEND
E-CIGARETTES WHICH I THINK IS
PROBABLY NOT RECOMMENDED IN THE
U.S., CERTAINLY NOT RECOMMENDED
IN AUSTRALIA.
BUT YOU KNOW, WE ALL HAVE
DIFFERENT POLICIES AND THE U.K.
HAS, IS VERY POSITIVE TOWARD
USE OF E-CIGARETTES FOR SMOKING
CESSATION INCLUDING IN
PREGNANCY.
I WORK WITH QUITE A FEW U.K.
COLLEAGUES AND I ALWAYS FIND IT
RATHER DISTRESSING.
XWU ANYWAY THAT'S WHAT IT IS.
GETTING BACK TO YOUR QUESTION
ABOUT THE BARRIERS, IF YOU ASK
CLINICIANS ABOUT THE BARRIERS
THEY FACE THEY WILL TELL YOU
IT'S TIME, THEY DON'T HAVE TIME.
BUT IF YOU GO THROUGH AND
COMPREHENSIVELY MAP IT OUT, THE
THAT IT IS NOT A PRIORITY FOR
CLINICIANS. THEY DON'T HAVE THE
K*FRDS, THEY DON'T HAVE THE
SKILLS, THEY DON'T HAVE
ADEQUATE TRAIN ORGANIZE
RESOURCES TO USE IT.
THERE ARE SYSTEMS BARRIERS
WHICH IS WHY YOU HAVE TO USE A
WHOLE OF SYSTEMS APPROACH.
IN OUR CASE WE FOUND THE
ELECTRONIC HEALTH RECORD REALLY
DIDN'T FACILITATE IN ANY WAY
PROVIDES CESSATION SUPPORT, IT
HAD THE FIRST PRENATAL VISIT,
ONE SPACE TO RECORD THE SMOKING
STATE US, NOTHING TO RECORD
WHAT WAS DONE ABOUT IT, AND
NOTHING TO FLAG THIS PERSON AS
A SMOKER AND NOTHING TO SORT OF
DEMONSTRATE WHAT HAD BEEN DONE
PREVIOUSLY.
SO VERY DIFFICULT TO MANAGE
SMOKING CESSATION SUPPORT.
THAT'S A BIG SYSTEM BARRIER WE
HAVE MANAGED TO ADDRESS.
WE NOW GOT MUCH BETTER
ELECTRONIC HEALTH SYSTEM.
LACK OF LEADERSHIP, IF YOU
DON'T HAVE YOUR CLINIC MANAGER
SAYING THIS IS AN IMPORTANT
THING FOR OUR CLINIC, IT'S NOT
GOING TO BE PRIORITIZED.
IT'S VERY COMPLEX BUT THE
ENTIRE WORKING ENVIRONMENT.
TRAINING OF THE INDIVIDUAL
CLINICIANS ON THEIR OWN IS NOT
ENOUGH BECAUSE IT'S THE BIGGER
ENVIRONMENT THAT IS SO CRITICAL
TO WHETHER OR NOT IT ENABLES
THEM TO DO THIS WORK.
THAT WOULD APPLY
ACROSS-THE-BOARD FOR ALL THESE
CONDITIONS THAT WE ARE TALKING
ABOUT.
TIME IS ALWAYS A BARRIER BUT
IT'S ALSO A QUESTION OF
PRIORITY YOU PUT ON THINSINGS.
-- THINGS.
>> MIHAELA STEFAN: I SEE A
QUESTION IN THE CHAT.
KAREN, DO YOU WANT TO UNMUTE
AND ASK IT, OR WANT US TO READ
IT?
>> KAUREN: SURE I CAN GO AHEAD
AND JUST READ IT.
I THINK WE HAVE HEARD A LOT
OVER THE PAST COUPLE OF DAYS
ABOUT BUNDLING CARE AND TRYING
TO DECREASE BURDEN ON CARE
PROVIDERS AS MUCH AS POSSIBLE.
I'M JUST CURIOUS THE PANEL'S
THOUGHTS HOW TO ENSURE THAT WE
ARE TARGETS THOSE THAT ARE
HIGHEST RISK WHILE ENSURING WE
ARE NOT SUBSTANTIALLY
INCREASING BURDEN ON CARE
PROVIDERS.
>> SONALI BOSE: I WILL OFFER
ONE PIECE OF INFORMATION, THERE
HAVE BEEN SCATTERED STUDIES
SHOWING THAT BUNDING OR HAVING
PROVIDERS IN A SINGLE CLINIC
INTEGRATED CARE FOR CO-MORBID
CONDITIONS DURING PREGNANCY HAS
BEEN FEASIBLE AND SUCCESSFUL.
WE'RE NOLING THE MODEL HERE WE
HAVE A NUMBER OF JOINT CLINICS
BETWEEN MFM AND ARDOLOGY AS
WELL AS MFM AND IN ASTHMA.
TO HAVE A SPECIALIST IN THE MFM
CLINIC TO HELP PROVIDE THAT
JOINT CARE CAN BE CONSIDERED.
I KNOW THIS IS NOT POSSIBLE IN
ALL RESOURCE AREAS. SO IT'S
SOMETHING TO THINK ABOUT, YOU
KNOW, HOW DO WE COLLECTIVELY
MAKE THAT POSSIBLE AND
EQUITABLE.
IT MAY NOT BE POSSIBLE IN AREAS
THAT HAVE LOW ACCESS.
>> WHILE I DO UNDERSTAND THE
QUESTION ABOUT REDUCING THE
BURDEN ON PROVIDERS I DON'T
THINK WE SHOULD PUT THAT BACK
ON INDIVIDUAL WHO IS PREGNANT
AND TRYING TO DEAL WITH THEIR
CO MORBID CONDITION ON TOP OF
BEING PREGNANT.
FOR PATIENTS IN GRAND JUNCTION,
COLORADO, IT'S DIFFICULT TO GET
HERE AND SEE TWO DIFFERENT
PROVIDERS, SO USING TELEHEALTH
THEY HAVE BEEN LIBERAL ABOUT
THE USE OF THAT HERE IN
COLORADO, HAS ACTUALLY HELPED
US CO-MANAGE SOME OF THESE
PATIENTS.
>> STEPHANIE: I WILL ADD TO
THAT IN TERMS OF THINKING ABOUT
OTHER PEOPLE AS PART OF THE
CARE TEAM.
AS I MENTIONED BEFORE, WE HAVE
CARE MANAGEMENT COORDINATORS
WHO ARE TECHNICALLY
NON-CLINICAL BUT THEY STILL CAN
PROVIDE MANAGEMENT SUPPORT AND
NAVIGATE PATIENTS TO PROVIDERS.
THINKING ABOUT APPROPRIATE CARE
COMMUNITY HEALTH WORKER IS
ANOTHER GROUP OF FOLKS WHO CAN
BE REALLY HELPFUL IN TERMS OF
SUPPORTING PATIENTS.
CERTAINLY WHO ARE AT HIGH RISK
AND WE WANT TO PREVENT THEM
FROM HAVING ANY ADDITIONAL
COMPLICATIONS OR EVEN IN THOSE
WHO ARE LOW-TO-MODERATE RISK AS
WELL.
>> MIHAELA STEFAN: JENNIFER I
HAVE A BRIEF STORY, WHEN WAY I
WAS AT ATS THIS YEAR WE HAVE
SYMPOSIUM HOW TO INCREASE THE
RECRUITMENT, IMPROVE THE
RECRUITMENT IN CLINICAL TRIALS
AND OUR SPEAKER WAS A PATIENT
WHOM WAS COLORED WOMAN AND SHE
TOLD US THE STORY OF HAVING HER
CF NOT BEING DIAGNOSED FOR
YEARS AND YEARS.
EXACTLY WHAT YOU DESCRIBED.
AND THEN SHE CAME TO YOUR
CLINIC AND WAS DIAGNOSED AND
SHE WAS TALKING ABOUT HOW
WONDERFUL OF A PHYSICIAN YOU
ARE.
SO IT'S JUST LIKE EVERYTHING
COMING AROUND.
I WANT TO ASK YOU, SAID THERE
ARE NOT REALLY IMPLEMENTABLE
GUIDELINES FOR CYSTIC FIBROSIS
OR RARE LUNG DISEASES FOR
PREGNANT OR LOOKING TO BECOME
PREGNANT.
CAN YOU TALK A LITTLE MORE
ABOUT THE BARRIERS AND WHAT
NEEDS TO BE DONE SO YOU ARE
PLANNING A STUDY AND THAT'S
GREAT.
BUT WHAT ELSE NEEDS TO BE DONE,
IN A WAY CF IS A RARE DISEASE
BUT WHEN YOU PUT IT ALL
TOGETHER, RIGHT?
IT'S CURIOUS THAT WE DON'T HAVE
ANY EVIDENCE-BASED GUIDELINES.
>> I THINK PART OF IT, AS MANY
SPEAKERS ELUDED TO ALREADY, IN
SPITE OF SOME OF THE ATTEMPTED
GOVERNMENT INTERVENTIONS TO
FORCE SPONSORS, FOR EXAMPLE, TO
INCLUDE PREGNANT PEOPLE WITH
CF, OR PREGNANT PEOPLE WITH ANY
DISEASE, IT GETS HARD TO SEE
HOW WE ARE GOING TO CHANGE
THINGS IF THOSE AREN'T ENFORCED
MORE.
YOU KNOW, FOR EXAMPLE, THESE
NEW DRUGS DRAMATICALLY IMPROVE
LUNG FUNCTION BUT IN A SHORT
AMOUNT OF TIME, IN 14
DAY-ACHAUERS YOUR LUNG FUNCTION
MAY GO UP 15% BUT THAT'S A
SHORT ACTING DRUG, MEANING IF
YOU TOP YOUR LUNG FUNCTION IS
GOING TO GO BACK DOWN AND
YOU'RE GOING TO FEEL REALLY
SICK.
WHAT WE DON'T ALLOW PREGNANT
PEOPLE TO THOUGHTFULLY BE
INCLUDED IN STUDIES IT MAKES IT
VERY DIFFICULT TO HAVE GUIDANCE.
THAT DOESN'T JUST GO FOR CF BUT
ASTHMA AND OTHER LUNG DISEASES.
I THINK THAT'S ONE BIG STEP IS
HAVING THE FDA PUSH HARDER ON
SPONSORS. THERE ARE STILL
STUDIES THAT COME THROUGH I
REVIEW, IN PHASE ONE, THEY ARE
EXCLUDING ANYONE WHO BECOME
PREGNANT, IT'S EASIER TO GET
THE STUDY DONE IF THEY DON'T
HAVE TO CONSIDER THAT.
THAT'S NOT ACCEPTABLE AND
SHOULDN'T BE ACCEPTABLE BY THE
FDA.
EXCLUDING PREGNANT AND
LACTATING FOR THOSE WHO HAVE
CHRONIC CONDITIONS.
I THINK THE OTHER BIG ISSUES IS
THAT FUNDING.
SO WE ARE INCREDIBLY LUCKY IN
CYSTIC FIBROSIS TO HAVE THE
FOUNDATION WHO IS WILLING TO
BASICALLY FUND A $9 MILLION
STUDY LOOKING AT PREGNANCY AND
CF.
NOT EVERY DISEASE STATE THAT IS
AN ORPHANED DISEASE HAS THAT
ORGANIZATION BEHIND THEM.
WE NEED OTHER FUNDERS BEHIND
THEM TO RECOGNIZE THE RESPONSER
OF STUDYING RARE DISEASE.
EVEN THE FINDINGS IN RARE
DISEASE WILL APPLY TO THAT
POPULATION BUT LIKELY TO APPLY
TO ANOTHERS, COPD IN COULD BE,
STUDYING AND FUNDING IS STILL
IMPORTANT AND RELEVANT FOR
OTHER DISEASE STATES.
I DON'T KNOW IF ANYBODY ELSE
HAS THOUGHTS.
>> MIHAELA STEFAN: I THINK WHAT
WE HEARD IN OTHER PRESENTATION,
AT LEAST IN U.S., THE LACK OF
HAVING ACCESS TO DATA WHICH IS
ALREADY COLLECTED.
I DON'T KNOW HOW IT IS IN
AUSTRALIA.
BUT HERE, IT'S HARD.
THE H.R. DATA, WE KNOW, OF
COURSE THEY ARE NOT BUILT FOR
RESEARCH AND IT'S HARD TO
NORMALIZE THE DATA BETWEEN
DIFFERENT DATASETS AND BEING
ABLE TO, AT LEAST EVEN GETTING
THE OUTCOME AND CHARACTERISTICS
OF THE PATIENTS FROM WHATEVER
IS ELECTED AND ACCESSING THIS
IN REAL-TIME, RIGHT?
TO BE ABLE TO PUT ALERTS IN THE
SYSTEM AND SO ON.
SO THAT IS SOMETHING ELSE THAT
WE NEED TO HAVE THE ACCESS TO
DATA.
I DON'T KNOW IF YOU HAVE ANY
COMMENTS, JENNIFER, PROBABLY
YOU HAVE MORE DATA BECAUSE OF
THE CYSTIC FIBROSIS IS EASIER
TO ACCESS THAN IN OTHER
CONDITIONS.
EVEN FOR COMMON DISEASE LIKE
ASTHMA, WHAT YOU DESCRIBE
STEPHANIE WITH THE CO
MORBIDITY, IT'S SOMETHING THAT
WE NEED THE FUNDERS OR JUST TO
BE ABLE TO GET THE DATA IN THE
HANDS OF NOT ONLY THE
RESEARCHERS BUT ALSO THE
CLINICIANS.
>> YEAH, AND ONE OF THE THINGS
WE ARE DOING, WE WON'T JUST
MAKE THE DATA ACCESSIBLE BUT
CREATING A BIO BANK WITH
SAMPLES WE ARE GETING FROM
PEOPLE, WE ARE GETTING CONSENT,
OF COURSE, BUT ANYBODY CAN
APPLY WITH A REASONABLE STUDY
AND FUNDING TO USE THOSE
SAMPLES. I THINK THAT'S REALLY
IMPORTANT PARTICULARLY IN RARE
DISEASE BUT JUST IN GENERAL AND
PREGNANCY AS WELL.
>> STEPHANIE: I AGREE, I THINK
THERE'S CERTAINLY SOME WORK TO
BE DONE, IN TERMS OF IMPROVING
ACCESS TO THE DATA AND
PARTICULARLY IMPROVING THE WAY
THE DATA SHOWS UP IN E.H.R. TO
CLINICIANS IN A WAY THAT IS
FUNCTIONAL AND MEANINGFUL FOR
THEM SO THEY KNOW NEXT STEPS
WHAT TO DO WITH THE INFORMATION.
WITH SSM IT'S USUALLY CAPTURED
AT LABOR AND DELIVERY, BUT
THERE ARE SOME SIGNS AND RISK
FACTORS, I THINK, CERTAINLY WE
NEED TO BE COLLECTING THAT.
AT NORTH WE BUILT A DATA MART
WE COLLECT THE CO MORBIDITY
INDEX RISK SCORE TO FIND OF
GIVE US A SENSE WHO MIGHT BE
KIND OF UNFORTUNATELY HEADING
TO SMM, INTERVENE WHETHER
THAT'S LOW DOSE ASPIRIN FOR
PREECLAMPSIA OR OTHER
INTERVENTION TREATMENTS TO GET
THAT DATA TO SHOW UP WITH THE
ACTUAL ENCOUNTER WITH THE
CLINICAL PROVIDER.
>> SONALI: I THINK BACK TO BUY
YO SPECIMENS, I THINK JENNIFER
MENTIONED EARLIER AS WELL, TO
COLLECT PLACENTA AND CORE
BLOOD, THESE AREN'T NECESSARILY
BURDENS ON THE PATIENT BUT HUGE
BURDENS ON THE INSTITUTION AND
RESEARCHERS BECAUSE TRYING TO
GET A TEAM TO BE ON CALL, YOU
KNOW 24 HOURS A DAY EVERY
SINGLE DAY TO BE THERE TO CATCH
PLACENTA IS REALLY, REALLY HARD
AND VERY EXPENSIVE.
IF THERE'S A WAY TO INCLUDE
THAT INFRASTRUCTURE IN
INSTITUTIONS OR SOME KIND OF
CTA OR SOMETHING THAT WOULD BE
REALLY HELPFUL I THINK AT THE
INVESTIGATOR LEVEL.
>> MIHAELA STEFAN: WE ARE
ALMOST AT THE HOUR.
WE HAVE ANOTHER FIVE MINUTES I
WILL ASK A QUESTION THAT ANY OF
YOU IN THE PANEL CAN ANSWER.
YOU PRESENTED SOME
EVIDENCE-BASED INTERVENTIONS.
CAN YOU COMMENT HOW WE CAN
IMPLEMENT, HOW CAN YOU GET TO
THE SUSTAINABLE PHASE, TOTTEN
TO THE ENGAGEMENT OF THE
COMMUNITY.
HOW CAN WE ACHIEVE SUCCESS,
ANYTHING FROM YOUR OWN WORK?
I KNOW THAT MEGAN, YOU DID A
LOOT OF WORK IN SMOKING
CESSATION IF YOU WANT TO TAKE
IT FIRST, STEPHANIE?
>> THANK YOU, APOLOGIES I
DROPPED OUT EARLIER.
I HAVE JUST COME BACK.
SUSTAINABILITY AND SUSTAINMENT
ARE ALSO THINGS YOU HAVE TO
THINK ABOUT FROM THE BEGINNING.
I THINK IT'S IMPORTANT TO BUILD
IN FROM THE BEGINNING AND THINK
ABOUT, OFTEN IMPLEMENTATION
TRIALS OR ANY TRIAL REALLY
INVOLVES THE INVESTIGATORS,
RESEARCH TEAM DOING A HUGE
AMOUNT OF ENGAGEMENT AND
ACTIVITY.
AND THAT IS NOT A SUSTAINABLE
MODEL.
SO YOU HAVE TO BE BUILDING IN
FROM THE BEGINNING, THINKING
WHAT IS THE IMPACT OF THE
ACTUAL RESEARCH FROM THE
PROCESS.
WHEN WE WITHDRAW THE RESEARCH
WHAT'S LEFT AND MAKE SURE
WHAT'S LEFT IS SUSTAINABLE.
I WILL JUST GIVE YOU ONE
EXAMPLE, AS I SAID EARLIER,
AUDIT AND FEEDBACK IS KNOWN TO
WORK.
THERE'S PLENTY OF EVIDENCE THAT
IMPROVES CLINICAL BEHAVIOR.
BUT AUDIT AND FEEDBACK IS
USUALLY DEPENDENT PARTICULARLY
IN A STUDY AND TRIAL USUALLY
DEPENDENT ON THE RESEARCH TEAM
TO DO THE AUDITING AND PROVIDE
THE REPORTS BACK TO PEOPLE.
THAT'S NOT A SUSTAINABLE MODEL.
SO WHAT WE TRIED TO DO, WITH
SOME MIXED SUCCESS, I HAVE TO
SAY, WHAT WE TRIED TO DO IN THE
MOHM QUIT TRIAL WHICH WE ARE
CURRENTLY CONDUCT, WE BUILT A
REPORTING MECHANISM WHERE THEY
CAN EXTRACT DATA AND DO THEIR
OWN AUDIT EFFECTIVELY.
DO THEIR OWN AUDIT.
WE DEVELOPED THAT WITH ONE
VERSION OF THE NEW ELECTRONIC
HEALTH RECORD.
UNFORTUNATELY THEN THE
ELECTRONIC HEALTH RECORD GOT
COMPLETELY REBUILT AND OUR DATA
EXTRACTION NO LONESINGER WORKED.
SO THEN WE HAD TO COME BACK AND
REINVENT ANOTHER WAY WHICH IS
NO LONGER QUITE AS GOOD OR
REALISTIC AS AN EFFECTIVE AUDIT
AND FEEDBACK.
BUT THAT WOULD ALSO RELY ON
THEM USING IT.
SO THAT'S PART OF THE CHALLENGE.
YOU CAN PROVIDE PEOPLE WITH
TOOLS AND MECHANISMS BUT IT'S
NOT ALWAYS SOMETHING THEY WILL
TAKE UP.
I WILL SAY THAT TOO, WE WORKED
REALLY CLOSELY WITH REGULARLY
DO REPORTS AND CHECKS AND
REVIEWING QUALITY OF CARE.
SO THEY HELPED US DESIGN THAT.
IN FACT THEY DESIGNED IT.
WE HAD THE IDEA.
SO IF YOU ARE DESIGNING IT WITH
PEOPLE WHO ARE PART OF THE
SYSTEM IT COULD WORK.
SO THAT'S OUR EXAMPLE.
>> MIHAELA STEFAN: THANK YOU, I
WILL JUST BRING UP A QUESTION
IN THE VIDEOCAST, SO JENNIFER,
I SENT THIS TO YOU.
I THINK YOU RESPONDED BUT I
CANNOT.
I THINK IT'S INTERESTING FROM
THE PERSPECTIVE OF OWNINGERS,
RIGHT.
-- OTHERS, RIGHT.
THIS WILL BE BRIEF, WE ARE
ALMOST AT THE HOUR.
VIDEOCAST IS DNA THAT IS USE TO
TREAT CF DURING PREGNANCY, I'M
NOT A PHYSICIAN BUT THERE'S A
RESEARCHER, I WILL FEED THE
INFORMATION THERE ABOUT SAFETY
OF THIS DRUGGING PREGNANT
PEOPLE AND ANIMAL MODELS.
JUST A BRIEF COMMENT MAYBE
BEFORE WE END?
>> JENNIFER: I THINK IT GOES
BACK TO THE COMMENT I MADE
EARLIER ABOUT THE FDA HELPING
TO PUSH THE USE OF PREGNANT
PEOPLE IN RESEARCH, SAFELY.
BUT TO SPECIFICALLY ANSWER THE
DORNAIS ALPHA QUESTION, MANY
MORE MEDS, NEARLY ALL WE ARE
USING IN PREGNANT PEOPLE.
IT'S REALLY THE MODULATORS WE
ARE USING, WE DON'T HAVE MUCH
DATA, HOPEFULLY WE GET THAT
FROM MAYFLOWERS. BUT WE DO NEED
THE FDA TO HELP US TO USE THE
MEDS IN PREGNANCY.
>> MIHAELA STEFAN: THANK YOU.
I WANT TO THANK ALL OF OUR
SPEAKERS. AND WE HAVE A FIVE
MINUTE BREAK, RIGHT?
>> YES, WE DO.
>> OKAY, WE WILL SEE YOU NEXT.
THANK YOU VERY MUCH FOR YOUR
PARTICIPATION.
>> THANK YOU,
>> THANK YOU.
[ BREAK ]
I HAVE THE HONOR OF MODERATING
THIS PANEL DISCUSSION TODAY.
THIS PANEL IS FOCUSED ON
EXAMINING HOW INNOVATIVE
METHODS FOR CARE DELIVERY CAN
ADDRESS PRESSING NEEDS AND
TRANSFORM MATERNAL CARE AS AN
IMPLEMENTATION STRATEGY.
THE PANELISTS WILL HIGHLIGHT
INNOVATIVE METHOD THAT'S HAVE
BEEN USE BOTH DOMESTICALLY AND
GLOBALLY.
A SEASONED MIDWIFE, TELEHEALTH
SPECIALIST, DRONE DELIVERY
INNOVATOR AND INTERDISCIPLINARY
COLLABORATOR.
IN THE INTEREST OF TIME I WILL
GIVE VERY BRIEF DEDESCRIPTION
SHUN OF OUR ESTEEMED
PANELISTS. WE INVITE YOU TO
LOOK AT THE PROGRAM BOOKLET FOR
BACKGROUND OP OUR SPEAKERS.
INCLUDES JOAN SHEPHERD,
REGISTERED NURSE-MIDWIFE,
RESEARCH, EDUCATOR, ASSOCIATE
LECTURE UR AND HEAD OF THE
DEPARTMENT OF MIDWAY FREE
COLLEGE OF MEDICINE AND ALLIED
HEALTH SERVICES SIERRA LEONE.
SHE SERVED AS PAST PRESIDENT OF
THE ASSOCIATION AND BOARD
MEMBER OF SCIENTIFIC REVIEW AND
NURSING AID MIDWIFES COUNCIL.
WE HAVE DR. NGOZI
IDEMILI-ARONU, DIRECTOR
OPERATIONS, IVAN RESEARCH,
SOCIOLOGY, ANTHROPOLOGY AND
COMMUNITY MEDICINE.
TEAM LEADERSHIP AND PRAO JECT
MANAGEMENT ESPECIALLY IN THE
FIELD OF PRIMARY CARE.
WE ALSO HAVE ZALEHA ABDULLAH
MAHDY.
SHE HAS A INTEREST IN HEALTH
TECHNOLOGY INNOVATION AND HEADS
HEALTH TECHNOLOGY INNOVATION
LAB AT UNIVERSITY OF MALAYSIA
AND MEMBER OF THE NATIONAL
CONFIDENTIAL INQUIRIES INTO
MATERNAL DEATHS COMMITTEE.
FINALLY WE HAVE SARAH CHEN,
CLINICAL PRAO GRAMING McKENZIE
AND HEALTHCARE START UPS,
INTERSECTING CLINICAL
PERSPECTIVE AND PRODUCT
STRATEGY.
THIS PANEL IS SLIGHTLY
DIFFERENT.
WE WILL START WITH THREE
PANELISTS WHO WILL GIVE VERY
SHORT GROUNDING TALKS FOLLOWED
BY MODERATED Q&A SESSION WITH
THE ENTIRE PANEL.
THE GROUNDING TALKS ARE SHORT,
THEY ARE TEN MINUTES. I WILL
CALL ON EACH SPEAKER WITH A
QUICK INTRO TO THEIR TALK
BEFORE THEY BEGIN.
SO WITH THAT, I WILL HAND OFF
TO JOAN SHEPHERD WHO WILL BE
TALKING ABOUT USING GLOBAL
SUCCESSES, ESPECIALLY IN LOW
AND MIDDLE INCOME TO TALK ABOUT
PRACTICES CAN BE CONTEXTUALLY
ADAPTED.
WITH THAT, JOAN SHEPHERD ARE
YOU ABLE TO START?
HI, JOAN, WE CAN'T HEAR YOU
JUST YET.
OKAY, WHILE I.T. HELPS US CAN
WE MOVE ON TO THE NEXT PANELIST
IN THE INTEREST OF TIME?
SO IF THE I.T. CAN QUEUE UP THE
NEXT SET OF SLIDES, PLEASE,
REALLY QUICKLY.
I WOULD LIKE TO CALL ON NGOZI
IDEMILI-ARONU WHO WILL TALK
ABOUT INNOVATIONS IN HEALTH
DELIVERY IN RESOURCE-LIMITED
SETTINGS, EXPERIENCES FROM
NIGERIA.
ARE YOU ABLE TO JOIN US?
>> YES, CAN YOU HEAR ME?
>> YES, LOUD AND CLEAR.
GO AHEAD.
>> NGOZI: OKAY, SO, NEXT SLIDE,
PLEASE.
GOOD EVERYONE, I WILL BE
DISCUSSING THE CRITICAL ISSUES
OF MATERNAL HEALTH IN NIGERIA
AND DIFFERENT INNOVATIVE
APPROACHES TO DEPLOY AT IVAN
RESEARCH INSTITUTE.
TO DELIVER TIMELY INTERVENTIONS
AND OVERCOME SPECIFIC
CHALLENGES. NIGERIA REMAINS ONE
OF THE COUNTRIES WITH THE
HIGHEST MATERNAL MORTALITY RATE
IN THE WORLD.
THIS ALARMING STATISTICS IS
PRIMARILY DUE TO THREE FACTORS.
LIMITED ACCESS TO SKILLED
HEALTHCARE PROVIDERS, POOR
HEALTHCARE INFRASTRUCTURE AND
SIGNIFICANT DELAYS IN ACCESSING
NECESSARY CARE.
SO MOST OF THE RURAL REGIONS IN
NIGERIA SUFFER FROM LACK OF
HEALTHCARE FACILITY, EDUCATED
STAFFING AND COMPOUNDING POOR
ACCESS TO ESSENTIAL MATERNAL
HEALTHCARE SERVICES. ALSO IN
NIGERIA MANY WOMEN LACK
SUFFICIENT EDUCATION ON SOCIAL
HEALTH SERVICES. ADDRESSING
THIS ISSUE IS NOT JUST ABOUT
IMPROVING STA TIFPT ICS.
IT'S ABOUT SAVING LIVES AND
RESPECTING THE DIGNITY OF EVERY
MOTHER AND CHILD.
NEXT SLIDE, PLEASE.
SO, I'M GOING TO SHOW YOU SOME
STATISTICS HERE.
IN NIGERIA WE HAVE 1.7 MILLION
WOMEN LIVING WITH H.I.V. AND
ALMOST 400,000.
11.5% DIAGNOSED WITH HEPATITIS
AND 14% OF CHILDREN, MAKING
LIVER CANCER THE MOST COMMON
CAUSE OF CANCER-RELATED DEATHS
IN NIGERIA.
NEXT SLIDE, PLEASE.
SO INTERESTING TO NOTE 25% OF
INDIVIDUALS IN NIGERIA CARRY
THE SICKLE CELL TRAIT AND
150,000 CHILDREN BORN YEARLY
AND 50% OF THOSE BORN DIE
BEFORE THE AGE OF 5.
NEXT, PLEASE.
SO HYPERTENSION IN NIGERIA IS A
COMMON DISORDER, ESPECIALLY
THESE DAYS, PEOPLE ARE JUST
DROPPING DEAD FROM HEART
DISEASE AND 25% OF WOMEN ARE
DIAGNOSED WITH HYPERTENSION
EVERY YEAR.
NEXT SLIDE, PLEASE.
ONE OF THE FEW THINGS WE DID
EARLIER ON WHEN WE STARTED
INTERVENTIONS WAS THE BABY
SHOWER INITIATIVE.
SO THIS IS A PERSON OR
PEOPLE-CENTERED APPROACH TO
MATERNAL AND INFANT HEALTH.
THIS PROGRAM EMBODIES OUR
COMMITMENT TO EARLY ENGAGEMENT,
CONTINUOUS CARE AND THESE ARE
VERY IMPORTANT IMPROVING
MATERNAL AND CHILD HEALTH
OUTCOMES.
WE KNOW IN NIGERIA IT'S A
FAITH-BASED NATION.
THERE MIGHT BE NO HEALTHCARE
CENTERS IN SOME RURAL
COMMUNITIES BUT, I TELL YOU
THAT IN EVERY COMMUNITY, EVERY
RURAL COMMUNITY, THERE IS
EITHER A CHURCH OR MOSQUE THAT
IS IN WALKING DISTANCE IN THESE
COMMUNITIES.
SO WHEN WE STARTED OUR
INTERVENTIONED IN UNDERSERVED
COMMUNITIES, WE STARTED WITH
OUR COMMUNITY ENTRY.
WE APPROACHED COMMUNITY
LEADERS, RELIGIOUS LEADERS, WE
SENSITIZE THEM ON THE PROJECT
OR INTERVENTION THAT WE WERE
COMING TO DO.
SO WITH SUPPORT WE WERE ABLE TO
LAUNCH THE BABY SHOWER
INITIATIVE IN THIS COMMUNITIES.
THIS INITIATIVE STARTS WITH THE
PRAYER SECTION.
IN NIGERIA EVERYBODY PRAYS. SO
AFTER THE PRAYERS, CALL THIS
WOMAN OUT AND PRAY THE RELIGION
LEADER PRAYS FOR THEM.
THEN WE INTRODUCE THE PROGRAM,
WE SECURE A GENERAL CONSENT,
AFTER THAT CONSENT IS SECURED
WE GIVE THEM INFORMED CONSENT
SHEET TO TAKE HOME AND DISCUSS
WITH THEIR SIGNIFICANT ORDER
AND GIVE A MORE INFORMED
CONSENT.
THEN WE WILL REGISTER
PARTICIPANTS FOR THE UPCOMING
BABY SHOWER.
NEXT WE WILL MOVE TO THE BABY
SHOWER ITSELF.
THIS IS THE WESTERN CONCEPT.
THE BABY SHOWER, IS NOT ANI
JEERIAN THEME, AFRICA, BUT FOR
US IT WASN'T JUST A CELEBRATION
, IT WAS A CRITICAL PART OF OUR
INTERVENTION.
WE WILL MOVE AHEAD TO CONDUCT
OUR IMPORTANT HEALTH CHECK ON
EDUCATION.
AT THIS POINT, WE DRAW SPECIMEN
AND BECAUSE WE ARE PRIMARILY IN
THIS COMMUNITY TO DO HIV
SCREENING.
AS WE ALL KNOW HIV HAS STIGMA
ATTACHED TO IT.
SO RATHER THAN JUST GOING TO
THE COMMUNITIES AND SAY WE ARE
SCREENING FOR HIV, WE SAID WE
ARE DOING A GENERAL HEALTH
CHECK.
WE WILL SCREEN FOR HEPATITIS,
HYPERTENSION, MALARIA, GENOTYPE
AND ALSO SCREEN FOR HIV AT THAT
POINT.
SO AFTER SOME TIME WE WILL MOVE
OVER TO THE BABY RECEPTION.
THIS IS IN NIGERIAN CONCEPT,
AFTER THE BABY IS BORN THERE IS
ALWAYS A BIG PARTY.
WE COME BACK TO THE COMMUNITY
TO DO A BABY RECEPTION.
AT THIS POINT IT'S LIKE A
FOLLOW-UP FACE FOR US.
WE DO EARLY INFANT DIAGNOSIS.
WE EVALUATE THE BABIES FOR
SICKLE CELL OR EVEN HIV OR
OTHER.
NEXT SLIDE, PLEASE.
THESE ARE PICTURES FROM THE
COMMUNITIES.
DURING THE BABY SHOWER WE GIVE
GIFTS WHEN THEY ARE PREGNANT
AND WHEN THE BABY IS BORN WE
ALSO HAVE A PARTY AND GIVE THEM
GIFTS WHEN THE BABY IS BORN.
NEXT SLIDE, PLEASE.
SO WE DID THIS ACROSS THE
COUNTRY.
ALMOST IN ALL THE SIX REGIONS
OF THE COUNTRY WHEN WE WERE
DOING OUR INTERVENTION.
SO NEXT SLIDE, PLEASE.
SO AS WE IMPLEMENTED THE BABY
SHOWER INITIATIVE, WE
ENCOUNTERED SEVERAL CHALLENGES.
WE ARE GENERATING LOTS OF DATA
FROM THESE COMMUNITIES.
HOW DO WE STORE PATIENT DATA.
HOW DO WE MANAGE THE IDENTITY
OF PATIENTS SCREENED.
HOW DO WE TRANSMIT INFORMATION
TO HEALTHCARE PROVIDERS? HOW
DO WE EFFICIENTLY FOLLOW-UP
WITH PATIENTS?
THE SOURCES OF BABY SHOWER
INITIATIVE HINGES NOT ONLY ON
MEDICAL AND EDUCATIONAL
INTERVENTIONS WE ARE GIVING IN
THESE COMMUNITIES.
IT WAS ALSO HOW EFFECTIVELY
WOULD WE MANAGE THAT DATA.
HOW DO WE MAINTAIN THE PRIVACY
OF THESE WOMEN AND ENSURE
COMMUNICATION AND CONDUCT
FOLLOW-UP?
NEXT SLIDE, PLEASE.
SO THERE COMES OUR MHEALTH
APPROACH.
WE WENT WITH mHealth APPROACH.
IT WAS AN INNOVATIVE IDEA TO
USE TO BE ABLE TO TAKE CARE OF
MOST OF THESE CHALLENGES WE
HAVE TO SOLVE THESE PROBLEMS
THAT WAS COMING UP WITH THE
BABY SHOWER.
NEXT SLIDE, PLEASE.
NEXT, PLEASE.
SO, THE mHEALTH CARD, BACK TO
THE LAST SLIDE, SO THE MY
HEALTH CARD WAS AN INNOVATIVE
APPROACH TO ADDRESS SOME OF
THESE CHALLENGES. THE MY HEALTH
CARD WAS DESIGNED TO MAKE
PATIENTS ACTIVE PARTICIPANTS IN
THEIR OWN HEALTHCARE.
SO EACH PARTICIPANT RECEIVED
THIS HEALTH CARD.
IT'S SET LIKE A DIGITAL HEALTH
PASSPORT, CONTAINING THEIR
HEALTH RECORDS, TREATMENT PLANS
AND FOLLOW-UP SCHEDULES AND
THIS EMPOWERED PATIENTS TO HAVE
DIRECT ACCESS TO THEIR HEALTH
INFORMATION AND ENCOURAGING
THEM TO BE INVOLVED AND ACTIVE
IN THEIR CARE DECISIONS.
MY HEADth CARD ALSO ENSURED THE
PATIENTS DATA WAS SECURED AND
WAS EASILY ACCESSIBLE.
AND IN OUR REFERRAL SYSTEM.
SO SINCE THE IMPLEMENTATION OF
MY HEALTH CARD WE HAVE SEEN
REMARKABLE IMPROVEMENTS IN
PATIENT ENGAGEMENT AND
HEALTHCARE DONATIONS. THE
PATIENTS REPORTS FEELING MORE
INFORMED AND INVOLVED IN THEIR
HEALTHCARE MANAGEMENT.
SO THIS MY HEADth CARD WILL
ALSO BE IMPLEMENTED IN OTHER
STUDIES.
ACCESS IS FUNDED BY NCI, WHERE
WE ARE SCREENING WOMEN ACROSS
THE PBR AND ACROSS THE COUNTRY
FOR CERVICAL CANCER.
WE ARE SCREENING COMMUNITY
MEMBERS FOR HYPERTENSION.
SO THIS OTHER INNOVATIVE
APPROACHES WERE ALSO INTEGRATED
WITH THE MY HEALTH CARD IS
TELEMENTAL HEALTH PROGRAM, HOW
mHEALTH PROGRAM CAN BE USED TO
BRIDGE HEALTHCARE GAPS.
IN THIS PROGRAM WE SCREEN WOMEN
FOR DEPRESSION AND ANXIETY AND
LINK THEM DIRECTLY TO MENTAL
HEALTH SERVICES THROUGH
TELEHEALTH PLATFORMS. THIS
OFFERS THEM IMMEDIATE AND
REMOTE ACCESS TO YOU KNOW, THIS
APPROACH.
NOT ONLY REDUCE BARRIER OF
ACCESS, BUT PROVIDES TIMELY
SERVICE FOR THOSE WHO NEED IT.
THE INTEGRATION OF MY HEALTH
CARD INTO THIS MODEL ENSURES
CARE WAS PROVIDED EFFECTIVELY
AND DOCUMENTED AND INFORMATION
REGARDING THE MENTAL HEALTH
ASSESSMENT AND TREATMENT PLANS
WAS ALSO UPLOADED TO THEIR
PERSONAL MY HEALTH CARD.
THIS COMBINED INNOVATIVE
APPROACH OF THE BABY SHOWER
INITIATIVE WHICH IS A
PERSON-CENTERED INNOVATIVE
APPROACH HAS TRANSFORMED OUR
HEALTHCARE DELIVERY IN SEVERAL
KEY UNDERSERVED AREAS. NEXT
SLIDE, PLEASE.
SO IT HAS INCREASED ACCESS TO
CARE, IT HAS REDUCED ATTRITION
AND FOLLOW-UP.
IT HAS HELPED IN IDENTITY AND
MANAGEMENT BY LINKING PATIENTS
TO THE HEALTH INFORMATION ON
THE CARD.
IT HAS ALSO HELPED IN
INFORMATION MANAGEMENT IN OUR
HEALTHCARE SYSTEM.
AND IT HAS DRASTICALLY REDUCED
WORKLOAD FOR HEALTHCARE
PROVIDERS.
SO IN CONCLUSION, OUR
INNOVATIVE APPROACH TO
HEALTHCARE, TELEHEALTH,
PERSON-CENTER APPROACHES
TRANSFORMING HEALTHCARE
DELIVERY IN UNDERSERVED
COMMUNITIES.
SO BY INTEGRATING THIS
INNOVATIVE TOOLS WE ARE NOT A
DIRECTION CRITICAL GAPS BUT
ALSO EMPOWER WOMEN TO CONTROL,
TAKE CONTROL OF THEIR OWN
HEALTH SO THIS DECENTRALIZED
PATIENT CENTER SLICINGS ALSO
OFFERS SCALABLE MODENS FOR
IMPROVING.
>> MALIHA ILIAS: THANK YOU,
NGOZI.
WHAT A GREAT EXAMPLE OF
MEANINGFUL ENGAGING COMMUNITY
PARTNERS LIKE FAITH BASED
ORGANIZATIONS, USING INNOVATIVE
DIGITAL TECHNOLOGIESES AND
HEALTH APPROACHES, TO GET
COMMUNITY INVOLVED IN THEIR
HEALTHCARE.
I SEE WE HAVE JOAN.
>> JOAN: GOOD EVENING, EVERYONE.
IT'S ACTUALLY EVENING NOW.
I WILL BE TAKING YOU THROUGH
GLOBAL SUCCESSES TO DETERMINE
HOW EVIDENCE THIS PRACTICE CAN
BE CONTEXTUALLY ADOPTED TO
IMPROVE MATERNAL HEALTH IN
VULNERABLE LOCATIONS.
NEXT SLIDE, PLEASE.
THE PRESENTATION POINTS I HAVE,
I WILL BRIEFLY LOOK AT THE
BACKGROUND IN MATERNAL AND
CHILDHOOD IN SIERRA LEONE
CONTEXT, AND GLOBAL STRATEGIES
AND INTERVENTIONS TOWARD
IMPROVING CHILD AND MATERNAL
AND WHAT HAS BEEN DONE AND
LESSONS LEARNED.
NEXT SLIDE, PLEASE.
THE REASON I DECIDED TO TALK
ABOUT REVIEW OF SOME CONTEXT
SIMILAR ALSO IN TERMS OF
PROGRESS AND DIFFERENCES IN
TERMS OF PACE MADE BY SOME
COUNTRIES.
JUST SOME BACKGROUND.
SIGH ERA LEONE IS A COUNTRY
WITH UNACCEPTABLE MORTALITY
RATES, HOWEVER, QUITE A LOT OF
PROGRESS HAS BID MADE.
FROM 857, 717 AND NOW
443/100,000 LIVE BIRTHS,
31/1000 NEONATAL MR.
WE ARE NOT EXCITED BECAUSE MOST
WOMEN ARE DYING FROM EVENTABLE
CAUSES.
THESE ARE -- WE ARE AIMING TO
REACH THE GLOBAL TARGET.
AND REGIONAL RECOMMENDATIONS
AND GLOBAL RECOMMENDATIONS ARE
BEING IMPLEMENTED IN SIERRA
LEONE, WHICH IS A LOW-MIDDLE
INCOME COUNTRY.
THE CAUSES ITSELF FOR DEATH IS
SIMILAR TO WEST AFRICA OR
AFRICAN REGION.
NEXT SLIDE, PLEASE.
SO THIS, WE HAVE EXPERIENCED
CIVIL WAR, EBOLA OUTBREAK,
FLOODS AND MUDSLIDES. ALL CAUSE
SERIOUS IMPACT ON OUR HEALTH
INDICATE
>>ERS COMPARED TO MANY SUB
SAHARAN AFRICAN COUNTRIES.
WE HAVE SEEN IMPROVEMENT IN
TERMS OF WOMEN SEEKING
INSTITUTIONAL DELIVERIES IN
HEALTH FACILITY.
SO BY AND LARGE WE HAVE
NATIONAL EFFORT TO IMPROVE
STATISTICS AN UTILIZING
TECHNOLOGY ADVANCEMENTS GEARED
TOWARDS REDUCING HIGH MORTALITY
RATES.
WE HAVE SUB-OPTIMAL QUALITY OF
ANTENATAL CARE.
WE HAVE FRAGILE ECONOMIES AND
LOW LITERACY LEVELS ESPECIALLY
AMONG WOMEN.
BUT NOT LIMITED TO SIERRA LEONE.
IT CONTRIBUTES TO THE GLOWS
BALL HEALTH AGENDA AND
SUSTAINABLE DEVELOPMENT GOAL.
NEXT SLIDE, PLEASE.
GLOBAL STANDARDS IMPLEMENTATION
SUCCESS WE HAVE PACKAGES FOR
SPECIFIC LIFE-SAVING
INTERVENTIONS WHEN IMPLEMENTED
IN COUNTRIES ARE ACCREDITED TO
LOMA TERNAL MORTALITY RATES,
LOW INFANT MORTALITY RATES.
GOOD OUTCOMES FOR MOTHER AND
THE BABY.
WE ARE WORKING ON THIS
GENERALLY AND FOCUS ON PRENATAL
CARE, WE HAVE REVERTED TO THE
OLD SYSTEM WHERE WOMEN ATTEND
VISITS ON A MONTHLY, TWO WEEKLY
AND THEN WEEKLY BASIS.
WE ARE NOW UTILIZING THE
INTEGRATED CARE GUIDELINES.
ALSO THE WHO LABOR AND CARE GUY
REPLACE THE CARE GUIDE THAT WAS
IN PLACE.
NEXT SLIDE, PLEASE.
IF WE ARE GOING TO IMPLEMENT
SOME EVIDENCE-BASED STRATEGIES
IMPLEMENTATION SUCCESSFULLY WE
NEED TO ADDRESS SOME OF THESE
ISSUES. SO WE HAVE ADDITIONAL
BELIEFS AND PRACTICES THAT'S A
TEKTING WOMEN'S UTILIZATION OF
SERVICES. THERE'S STAKEHOLDER
ENGAGEMENT.
TRADITIONAL AND LEGISLATION
LEADERS HAVE BEEN ENGAGED.
THERE'S BEEN TWO FACE-TO-FACE
MEETINGS.
ADVOCACY AND EMPOWERMENT WHERE
WE EDUCATE THE GIRL CHILD AND
THERE'S ALSO FREE EDUCATION IN
SIERRA LEONE.
AND SEXUALITY EDUCATION HAS
BEEN ADVOCATED FOR.
WE ALSO ABOLITIONED ADOLESCENT
FRIENDLY CLINICS AND PROGRAM.
IN TERMS OF ADDRESSING
INADEQUATE NUMBER OF SKILLED WE
DO NOT HAVE ENOUGH NURSES, WE
DO NOT HAVE ENOUGH DOCTORS AND
ANESTHETICKS. WE HAVE DOCTORS
AND CHO'S ALSO CONDUCTING SEE
SYRIAN SEKSZ.
GO TO THE COMMUNITY TO JUST ADD
ELEMENTS.
NEXT SLIDE, PLEASE.
IT'S SEEN AS A PRIORITY.
IT'S ON ON THE AGENDA THE
GOVERNMENT AS AWE PRIORITY.
THIS IS THE FLAGSHIP PROJECT
OWNED BY THE GOVERNMENT OF
SIERRA LEONE.
WE ESTABLISH AID DIRECT RAT OF
PRODUCTIVE AND CHILD HEALTH
WITH QUALITY IMPROVEMENT UNIT.
WE HAVE IN PLACE MDSR REVIEW
MEETINGS. THE COMMUNITY
STAKEHOLDERS ARE ACTIVELY
ENGAGED IN SUCH MEETINGS. IN
TERMS OF ADDRESSING THE
SHORTAGE OF MIDWIFES WE ALSO
ESTABLISHED MORE TRAINING OF
MIDWIFES IN SCHOOL, AND THROUGH
THE SUPPORT OF UNFPA.
WE USE TO HAVE THE OLD BRITISH
SYSTEM WHERE YOU NEED TO --
BEFORE YOU CAN BECOME A MIDWIFE.
SO NOW WE HAVE CHANGED THAT.
WE ARE NOW OFFERING DIRECT MEET
WITH ME ENTER PROGRAM.
NEXT SLIDE.
WE HAVE ISSUES OF ACCESS.
WE HAVE AMBULANCE SERVICE IN
PLACE TO TAKE CARE OF WOMEN WHO
ARE HAVE MULTIPLE CHALLENGES
AND RESEARCH IN THE AREA OF
MATERNAL AND CHILDHOOD HEALTH
BY THE PROJECT.
WE ARE USING MOBILE TRACKING
APPS. WE HAVE A ESTABLISHMENT
OF DISTRICTS, THAT HAVE
VULNERABLE POPULATIONS, IN
TERMS OF SKILLS, WOULD HE HAVE
HIGH FIDELITY AND LOW FIDELITY
MANNEQUINS AND ANATOMICAL
MODELS DONATED TO THE SCHOOL.
ALSO RECEIVING TECHNICAL
SUPPORT FOR TWO MIDWIFERY
SCHOOLS, THROUGH SEED SGLOE
BALL HEALTH.
THEY GIVE 30% OF THEIR TIME IN
THE CLASSROOM AND 70% OF THEIR
TIME IN THE CLINICAL SETTING.
NEXT SLIDE, PLEASE.
SO IN TERMS OF THE INNOVATIVE
APPROACHES TOWARDS IMPROVING
MATERNAL AND CHILD HEALTH WE
HAVE DONE A LOT.
I MENTIONED EARLIER, SKILLED
BIRTH ATTENDANTS HAVE BEEN
RETAINED.
AND INFRASTRUCTURAL DEVELOPMENT.
AND FACILITIES HAVE BEEN
ASSESSED TO MAKE SURE THEY ARE
READY FOR SERVICES AND REVISED
POLICY GUIDELINES AND OPERATING
PROCEDURES. AND ALSO SOME
FACILITIES LACK WATER AND
ELECTRICITY.
SO THERE IS INSTALLATION OF
SOLAR PANELS IN SOME OF THE
FACILITIES.
NEXT SLIDE, PLEASE.
A LOT OF PROGRESS HAS BEEN MADE.
DEVELOPMENT OF NEW CURE LICK RA
FOR MIDWIFES. DEVELOPMENT OF
COME PEN SY-BASED TRAINING,
HELPING MOTHERS SURVIVE
BLEEDING, HELPING BABIES
BREATHE.
HIGH FREQUENCY AND LOW DOSE
TRAINING FOR COME PEN SY BASED
TRAININGS. AND CARE AND SCOPE
OF PRACTICE HAS BEEN REVISED.
NEXT SLIDE, PLEASE.
SO NOW WE ARE EMBARKING ON OUR
STUDENTS ON ACTIVE PRACTICE.
BEFORE THEY GRADUATE
MIDWIFE-LED COMMUNITY PROJECTS
WHERE THEY GIVE HEALTH TALKS TO
PREGNANT WOMEN AND ALSO CARRY
OUT ASSESSMENT OF PREGNANT
WOMEN AND THESE ARE RECORDED
AND WE GRADE THE STIENTDS. WE
HAVE COME A LONG WAY IN TERMS
OF SUCCESS STORY, THIS IS
SIMILAR TO OTHER COUNTRIES.
OUR FACILITIES ARE NOW
COMPLICATION READINESS
EMERGENCY PREPAREDNESS.
REGIONAL CARE, RENOVATED.
NEXT SLIDE, PLEASE.
AND THIS GOES, WE HAVE LAUNCHED
THE FREE HEALTHCARE INITIATIVE
BY THE PRESIDENT IN 2012 AND
ALSO USING -- TO MEASURE THE
BLOOD PRESSURE FOR DETECTION OF
PREECLAMPSIA.
THIS IS ALSO SEEN IN OTHER
COUNTRIES THAT ARE UTILIZING
SUCH.
WE HAVE FEELING NO COMMUNITY
SHOULD BE OUT OF REACH.
SO WE ARE SCALING UP
LIFE-SAIFPING INTERVENTION IN
ALL DISTRICT.
NEXT SLIDE, PLEASE.
THE ROLE OF PARTNERS.
WE HAVE VARIOUS PARTNERS THAT
ARE SUPPORTING US THROUGH THEIR
SYSTEMS STRENGTHENING PROJECT
AND SUPPORTING US IN TERMS OF
INFRASTRUCTURE AND CAPACITY
BUILDING.
NEXT SLIDE, PLEASE.
IT'S CLEAR COMMUNITIES NEED TO
BE INVOLVED IN HEALTHCARE NEEDS
AND CLEAR WE NEED TO ESTABLISH
RESPONSIVE RESILIENT STRUCTURES
AND POLICIES THAT WILL
WITHSTAND THE TEST OF TIME.
NEXT SLIDE, PLEASE.
IN CONCLUSION, LOW AND MIDDLE
INCOME COUNTRIES ARE
CHALLENGED WITH ISSUES OF LOW
LEVELS OF EDUCATION, POVERTY,
REMOTE UNREACHABLE SETTINGS
WITH POOR KNEW TRACING, BAD
TERRAIN AMONG OTHERS.
CRITICAL TO SUCCESS IS THE NEED
TO EMPOWER WOMEN AND GIRLS AND
COMMUNITIES THROUGH EDUCATION
TO BE BETTER ABLE TO MAKE SAFE
DECISION REGARDING THEIR HEALTH
AND WELL-BEING, AND COMMUNITY
ENGAGEMENT.
NEXT SLIDE, PLEASE.
THESE ARE SOME POINTS FOR
REFLECTIONS. ALL AROUND
DISPARITIES THAT NEEDS TO BE
ADDRESSED.
IT HAS TO DO WITH DISCREPANCIES
THAT ARE INIMICAL TO THE HEALTH
OF WOMEN.
NEXT SLIDE, PLEASE.
WE BELIEVE THE BURDEN WITH BE
REDUCED IF ALL COUNTRIES
CONTRIBUTE.
WE HAVE MISSED OUT ON THE MGDS
THAT WE ARE NOW AIMING FOR THE
SDGS. NEXT SLIDE, PLEASE.
NEXT SLIDE, PLEASE.
IN CONCLUSION, MOVING INTO THE
FUTURE AS WE TALK ABOUT ALL OF
THESE, IT'S IMPORTANT.
THE CLOCK IS TICKING, WOMEN AND
YOUNG GIRLS ARE CONTINUING TO
DIE.
SO WE NEED TO HAVE MORE
SUSTAINED EFFORT TO MAKE SURE
MATERNAL AND CHILDHOOD
INDICATORS FOR SIERRA LEONE.
>> THANK YOU, JOANN, WHAT A
GREAT PRESENTATION ON USING THE
LESSONS LEARNED GLOBALLY TO
INFORM HOW EVIDENCE-BASED
PRACTICES CAN BE CONTEXTUALLY
ADAPTED TO ANY COMMUNITY BY
CENTERING AND EMPOWERING
COMMUNITIES.
SO WITH THAT, I WANT TO MOVE
FORWARD TO ZALIHA ABDULLAHATI,
MAHDY, WHO IS OUR NEXT SPEAKER.
>> THANK YOU.
NEXT SLIDE, PLEASE.
DRONES IN BLOOD TRANSPORTATION.
AS YOU CAN SEE, RATIO HAS
DESIGNED TREMENDOUSLY WITH
PROVISION OF TRAINED BIRTH
ATTENDANCE.
ALMOST 100% OF CHILD BIRTHS
BEING CONDUCTED IN HOSPITALS.
AND SUBSEQUENTLY, CHECK BELOW
THE 30% PER 100,000.
A MOONING THE NON CLINICAL
FACTORS WAS INADEQUATE HANDLING
OF EMERGENCY CASES AND
INACCESSIBILITY OR REMOTENESS.
IF YOU LOOK AT DISTRIBUTION OF
PRIMARY POSTPARTUM HEMORRHAGE
IN MALAYSIA YOU WILL FIND
SAMBA, THE TERRAIN IS QUITE
CHALLENGING AND TRANSPORT
SYSTEM IS NOT WELL DEVELOPED.
WE VISITED EXPLORED PROBLEMS
WITH BLOOD TRANSPORTATION, WE
FOUND THREE MAIN THEMES WHICH
ARE EFFICIENCY, SAFETY AND
HUMAN RESOURCE.
NEXT SLIDE, PLEASE.
THESE ARE THE MODES OF
TRANSPORTATION AVAILABLE FOR
TRANSPORT OF BLOOD PRODUCTS. AS
WE KNOW MAINTAINING THE CODE
CHAIN IS IMPORTANT IN BLOOD
PRODUCT TRANSPORTATION.
NEXT SLIDE, PLEASE.
THERE ARE VARIOUS BARRIERS TO
MEDICAL TRANSPORTATION THAT ARE
CURRENTLY AVAILABLE MODES, FOR
EXAMPLE, DELAY IN
TRANSPORTATION TIME, HIGH RATE
OF ACCIDENTS, GEOGRAPHICAL
BARRIERS AND INACCESSIBILITY
DUE TO MOUNTAINOUS TERRAINS,
RIVERS WITHOUT BRIDGES AND
THICK TROPICAL RAIN FORESTS.
ISSUES THAT NEED TO BE
CONSIDERED ARE URGENCY OF BLOOD
REQUIREMENTS AND RISK OF BLOOD
PRODUCTS WITH BLOOD BANKING
SYSTEM.
NEXT SLIDE, PLEASE.
ONE OF THE POTENTIAL
APPLICATIONS OF DRONE USE IS
FOR DELIVERY OF BLOOD SAMPLES
AND PRODUCTS WITH POSSIBLE
BENEFITS OF REDUCED TRAVEL
TIME, BETTER ACCESSIBILITY,
REDUCED CARBON EMISSION AND
PERHAPS ENHANCED COST
EFFECTIVENESS.
THERE ARE OF COURSE SEVERAL
CHALLENGES NOT LEAST OF WHICH
IS THE LOCAL AIR TRAFFIC
LEGISLATION AND REGULATIONS.
NEXT SLIDE, PLEASE.
THE ZIP LINE DRONE DELIVERY
SYSTEM IN RWANDA INSPIRED US TO
LOOK INTO A SIMILAR SYSTEM TO
OVERCOME THE PROBLEM IN SUB
SAHARAN AND OTHER PARTS OF
MALAYSIA WHERE ROAD AND
TRANSPORTATION PROBLEMS EXIST
IN DELIVERING MEDICAL SERVICE.
THE DRONE SEEMED TO BE AN
ATTRACTIVE ALTERNATIVE,
NONETHELESS IT NEEDS TO BE
TESTED AGAINST THE DIFFERENT
CLIMATE AND TERRAIN HERE IN
MALAYSIA WITH MUCH WARMER AM
BEE ENT TEMPERATURE AND HARSHER
WEATHER.
ALSO ZIP LINE USED A FIXED WING
DRONE THAT IS SUITABLE FOR
GEOGRAPHICAL TERRAIN IN RWANDA,
WHEREAS NOT SUITABLE IN
MALAYSIA.
VERTICAL TAKE OFF AND LANDING
IS PROBABLY MORE SUITABLE.
HOME GROWN DRONE SERVICE
PROVIDER ACTUALLY THIRD IN
WORLD RANKING IN 2019, DRONE
OPERATOR COMPANY CALLED
AERODYNE.
BEGIN FOOD, MEDICINE AND BLOOD
DELIVERY IN PAPUA NEW GUINEA
TOGETHER WITH UNICEF.
NEXT SLIDE, PLEASE.
DESPITE THE HYPE ABOUT DRONE,
WE FOUND ONLY THREE
PEER-REVIEWED PUBLICATIONS AS A
MODE OF TRANSPORTATION FOR
BLOOD SAMPLES AND PRODUCTS FOR
MATERNAL HEALTHCARE.
THIS SPURRED US TO PURSUE OUR
RESEARCH FURTHER PUBLISH OUR
FINDINGS. NEXT SLIDE, PLEASE.
WE PROCEEDED TO LOOK AT COST
EFFECTIVENESS OF DRONES IN
MEDICAL DELIVERY COMPARED TO
THE COMMONEST CONVENTIONAL MODE
OF TRANSPORT USED HERE IN
MALAYSIA WHICH IS AMBULANCE.
WE FOUND DRONE TRANSPORTATION
OF BLOOD PRODUCTS CAUSED MORE
PER MINUTE COMPARED TO THE
AMBULANCE, THE SIGNIFICANT
SHORTER TRANSPORT TIME OF THE
DRONE OFFSET WHEREAS AMBULANCE
TOOK 34 MINUTE.
THE DRONE TOOK ONLY 18 MINUTES
TO COVER THE SAME DISTANCE,
NEXT SLIDE, PLEASE.
WE LOOKED AT INFLUENCE OF DRONE
CARRIAGE MATERIAL ON
MAINTENANCE OF STORAGE
TEMPERATURE AND QUALITY OF
BLOOD SAMPLES DURING
TRANSPORTATION.
BEARING IN MIND IT IS TAKING
PLACE IN A HOT EQUATORIAL
CLIMATE, NEXT SLIDE, WE USED
THREE TYPES OF CARRIAGE
MATERIAL, ALUMINUM IN FIGURE
THREE, BOX C, POLY PROPYLENE
PLASTIC IN BOX B, EXPANDED
POLYSTYRENE OR EPS FORM AS
SEENS IN BOX A, WHICH IS THE
COMMONEST MATERIAL USED TO
MAINTAIN THE BLOOD CODE CHAIN
HERE IN MALAYSIA.
SECOND PHASE PRESERVATION OF
QUALITY OF THE BLOOD SAMPLES.
WE DPOUND BOTH PARAMETERS ARE
BEST MAINTAINED USING THE EPS
FOAM BOX AS THE DRONE CARRIAGE
MATERIAL.
NEXT SLIDE, PLEASE.
LAST BUT NOT LEAST WE LOOKED AT
COMMUNITY ACCEPTANCE OF DRONES
AS A MEANS OF DELIVERING
MEDICAL SERVICE.
IT WAS REASSURING TO FIND A
GOOD ACCEPTANCE RATE OF 82.9%
OUT OF 557 RESPONDENTS WHO
COMPLETED OUR SURVEY.
THE RATE WAS CORRELATED WITH
KNOWLEDGE, AT TAOUT AND
PERCEPTION SCORES BUT NOT
SOCIAL DEMOGRAPHIC FACTORS.
THIS INDICATED RAISING
AWARENESS AND EDUCATING THE
COMMUNITY IS KEY TO GAINING
ACCEPTANCE OF THIS INNOVATION.
NEXT SLIDE, PLEASE.
SO IN CONCLUSION I WISH TO
HIGHLIGHT THE DRONE TECHNOLOGY
IS ADVANCING RAPIDLY.
IN ORDER FOR COMMUNITY TO
EMBRACE THE CHANGE THEY MUST BE
INFORMED.
DRONE TRANSPORTATION IS COST
EFFECTIVE AND CAPABLE OF
TEMPERATURE AND BLOOD QUALITY
PRESERVATION EVEN IN A TROPICAL
CLIMATE I BELIEVE THIS
EXPERIMENT OF OURS HAS BEEN
DUPLICATED ELSEWHERE WITH THE
SAME OUTCOMES.
NEVERTHELESS CHALLENGES REMAIN
IN TERMS OF CAPITAL COSTS OF
DRONES, LOCAL LAW AND
REGULATIONS, FLYING BEYOND THE
VISUAL LINE OF SIGHT VERSUS
LOCAL INTERNET CONNECTIVITY.
DRONE POWER SOURCE, BATTERY
SOURCE VERSUS FLIGHT RANGE ,Z
NAVIGATION ACCURACY AND FLYING
IN HARSH WEATHER CONDITIONS.
NEXT SLIDE, PLEASE.
FINALLY I THANK YOU FOR THE
OPPORTUNITY TO SHARE OUR WORK
FROM THE DRONE TEAM.
THANK YOU.
>> THANK YOU, ZALEHA, THIS WAS
SUCH A FASCINATING STORY OF USE
OF INNOVATIVE METHODOLOGY TO
REALLY ADDRESS SOME OF THE
COMMUNITY'S SPECIFIC AND
CONTEXTUAL BARRIERS TO
EVIDENCE-BASED INTERVENTIONS
REACHING THE COMMUNITIES THAT
THIS ARE MEANT TO SERVE.
THANK YOU TO ALL OF OUR GREAT
SPEAKERS, I WOULD LIKE TO BRING
FORTH ALL OF OUR PANELISTS
INCLUDING SARAH CHEN TO COME
TO THE DISCUSSION TABLE, SO TO
SPEAK.
YOU ENCOURAGE AUDIENCE TO PASTE
QUESTIONS IN THE Q&A BOX SO
MYSELF AND THE ORGANIZERS CAN
KEEP STRACHOVA OF THEM.
I SEE SOME QUESTIONS ALREADY,
THIS STARTS WITH NGOZI, KUDOS
FOR HER PRESENTATION.
GREAT WORK, I WOULD LIKE TO
HEAR MORE ABOUT METHODS TO KEEP
WOMEN ENGAGED IN THE STUDY
FOLLOWING DELIVER YU.
OUR ADDITIONAL HOME BASED OR
COMMUNITY-BASED VISITS
CONDUCKED THROUGH 12 MONTHS
POSTPARTUM, WHAT OTHER METHODS
HAVE YOU UTILIZED TO IMPROVE
FOLLOW-UP?
>> I WILL JUST SAY MAYBE ONE
WORD [ INDISCERNIBLE ] DM OUR
COMMUNITY WE HAVE COMMUNITY
RESEARCH ENGAGEMENT OFFICERS,
WE RECRUIT FROM THE COMMUNITY
AND THEY ARE PART AND PARCEL,
THEY KNOW THESE WOMEN, THEY DO
THE BABY SHOWER, THEY GO TO THE
SAME CHURCH AND GO TO THE SAME
MARKET.
SO THEY ARE VERY FAMILIAR.
OFTEN TIMES BECAUSE THEY HAVE
BEEN ENGAGING THEM FROM THE
BEGINNING, TO THE PROCESS OF
BABY SHOWER, THE SCREENING AND
DIFFERENT TYPES OF SCREENING
AND HELP DESK, THESE WOMEN
TRUST THEM.
SO THEY ALSO REMIND THEM ABOUT
THEIR FOLLOW-UPS. MY HEALTH
CARD HAS AN POTENTIAL TO REMIND.
BUT ALSO COMES TO YOUR DOOR,
LOOKS LIKE YOUR DAUGHTER, YOUR
CHILD, SAY HI TO YOU, TALK TO
YOU ABOUT HIGH PRICES OF STUFF.
-- HAVE BEEN WONDERFUL.
THEY FOLLOW-UP WITH THESE WOMEN.
THEY WILL BEFRIEND THE WOMEN
AND THEIR CHILDREN, THEY WILL
BABYSIT AT TIMES TO TELL YOU
THE TRUTH.
SO WE HAVE PBR IN ALL THE SIX
REGIONS ENGAGE THESE WOMEN
CONTINUOUSLY.
THAT'S OUR MAGIC WORD.
>> WHAT A GREAT RESPONSE, NG OO
ZI.
I THINK IT ALSO REALLY CENTERS
THE IMPORTANCE OF REALLY
EMPOWERING THE COMMUNITY.
I THINK, YOU KNOW, ONE OF OUR
INVESTIGATORS FOR THE COMMUNITY
ENGAGEMENT ALLIANCE TEAMS IN
ALABAMA, LIKES TO SAY IF THE
PROBLEM IS IN THE COMMUNITY
THEN THE SOLUTION IS IN THE
COMMUNITY AND YOUR ONE-WORD
EXAMPLE CAPTURES THAT.
SO THANK YOU.
I HAVE ANOTHER QUESTION FOR DR.
MAHDY.
INCREDIBLE WORK AND USE OF
TECHNOLOGY.
I WONDER WHAT CHALLENGES YOU
ENCOUNTERED OR HAD TO DEAL WITH
PROACTIVELY IN TERMS OF
ENSURING DRONE SECURITY.
>> RIGHT, THANK YOU FOR THE
QUESTION.
VERY RELEVANT INDEED.
IT IS INDEED CHALLENGING.
IT'S NOT EASY.
IT'S NOT LOW-HANGING FRUIT, I
WOULD SAY IN TERMS OF
TECHNOLOGY INNOVATION TO BE
USING A DRONE TO REACH PEOPLE
IN REMOTE AREAS. THERE'S A LOT
OF CHALLENGES, NOT LEAST OF
WHICH IS THE LEGISLATION, THE
REGULATIONS THAT GOVERN FLYING
DRONES IN THESE AREAS AS WELL
AS INTERNET CONNECTIVITY.
THOSE ARE THINGS WE NEED TO
OVERCOME.
TO REACH HARD TO REACH AREAS.
>> THANK YOU.
I WANT TO DIRECT A QUESTION TO
SARAH CHEN AROUND DECENTRALIZED
APPROACHES.
HOW CAN INNOVATIVE CARE
DELIVERY METHODS SUCH AS
TELEHEALTH, DOULA AND MIDWIFE
CARE BETTER REACH UNDERSERVED
AREAS AND MOVE TOWARDS
DECREASED DISPARITIES?
>> SURE, I KNOW I SPEAK MORE
FROM U.S. AND HIGH INCOME
COUNTRY SETTING, BUT INSTEAD OF
TRYING TO DO EVERYTHING IN AN
IN-PERSON VISIT, WHICH IS THE
TRADITIONAL MODEL, WE FORCE THE
PATIENT TO SEE THE DOCTOR AND
EVERYTHING HAS TO BE DONE
THERE, BUT THE INNOVATIVE PART,
WHICH MAYBE NOT BE SO
INNOVATIVE IF WE THINK ABOUT
IT, BREAKING APART THE CARE AND
DLERING IT DIFFERENTLY BASED ON
WHAT EXACTLY YOU ARE DOING.
WE CAN PROVIDE TELEHEALTH FOR
INITIAL RISK ASSESSMENT AND
CONSULTATIONS AND CHECKING IN
ON THE PATIENT.
BUT WITH MONITORING, FOR
EXAMPLE, BLOOD PRESSURE, THINGS
LIKE THAT, WE HAVE THE
TECHNOLOGY FOR REMOTE PATIENT
MONITORING BUT IT'S ACTUALLY
NOT USED THAT MUCH.
A LOT OF OUR PHYSICIAN CLINICS
DON'TED USE REMOTE PATIENT MON
OR TOING, THEY STILL FORCE THE
PATIENT TO COME TO THE CLINIC
TO GET THEIR BLOOD PRESSURE
MONITOREDMENT THERE'S ALSO
THINGS WE CAN SEND THROUGH THE
MAIL.
OR DR. ZALEHA, DRONE TECHNOLOGY.
VANS THAT ACTUALLY TRAVEL TO
OUR PATIENTS.
IT'S JUST REALLY BREAKING IT
APART AND BEING SPECIFIC ABOUT
WHAT WE ARE TRYING TO DO
INSTEAD OF BEING WEDDED TO THIS
OLD MODEL WHERE YOU FORCE THE
PATIENT TO GO TO ONE PLACE TO
GET EVERYTHING DONE.
IN THE U.S. WE ARE VERY MUCH
PHYSICIAN-DRIVEN CULTURE BUT WE
ALSO NEED TO THINK BROADER
ABOUT THAT, RIGHT?
WE DON'T HAVE TO HAVE A
PHYSICIAN DELIVERING CARE, WE
SHOULD BE INVESTING AND
TRAINING IN DOULAS AND MIDWIFES
IN THESE COMMUNITIES.
THIS IS WHAT WE ARE SEEING
GLOBALLY, RIGHT?
TO YOUR POINT, IF THE PROBLEM
IS IN THE COMMUNITY, THE
SOLUTION IS ALSO THERE, THERE
ARE WOMEN WHO HAVE GIVEN BIRTH
BEFORE IN THE COMMUNITY, WHY
AREN'T WE LEVERAGING THEM.
OR A COMMENT LIKE OLDER WOMAN,
OLDER GENERATIONS OF WOMEN.
WE NEED TO STOP PUSHING THIS
IDEAL TRADITIONAL MODEL IN
ORDER TO REALLY INNOVATE.
>> THAT'S A GREAT RESPONSE AND
I THINK THAT A LOT OF OUR
SPEAKERS TODAY TOUCHED ON SOME
OF THOSE INNOVATIVE METHODS.
EMPOWERING THE COMMUNITIES LIKE
YOU WERE SAYING, SARAH.
BECAUSE A LOT OF THOSE
SOLUTIONS ARE THERE AND THE
COMMUNITY PARTNERS WITH THEIR
LIVED EXPERIENCE CAN PROVIDE
THAT CONFE. THAT IS SOMETIMES
MISSING WHEN WE ARE REALLY JUST
FOLLOWING THAT TRADITIONAL
NON-CREATIVE WAY OF DOING
THINGS.
SO THANKS FOR THAT RESPONSE.
I WOULD LIKE TO MAKE SURE IF
ANYBODY ELSE WOULD LIKE TO ADD
INTO SARAH'S THOUGHTS, PLEASE
GO AHEAD.
OTHERWISE I CAN KEEP GOING DOWN
THE LIST.
QUESTIONS ARE COMING UP.
I WILL KEEP GOING, IN NIGERIA
SIERRA LEONE HAVE THEY THOUGHT
OF OLDER WOMEN PAST THEIR
CHILDBEARING YEARS IN THEIR
INTERVENTIONS. OFTEN MOTHERS
AND GRANDMOTHERS ARE ACTIVE
PROVIDERS OF CHILD CARE.
THIS IS A LITTLE IN LINE WITH
WHAT YOU WERE SAYING, SARAH.
DO YOU WANT TO CONTINUE THAT
THOUGHT?
IT'S PRETTY MUCH AN OPEN
QUESTION, IF YOU WANT TO
RESPOND.
>> I WILL LET NGOZI RESPOND TO
WHAT HAPPENS.
>> CAN I ADD MY VOICE TO THAT?
WE HAVE TOLDER WOMEN WHO LIVE
IN THE COMMUNITY.
IN AN EVENT THEY GO TO THE
MIDDLE OF THE NIGHT THEY TAKE
CARE OF THE WOMEN AND ALSO IN
LABOR.
SO WHAT WE HAVE DONE, WE HAVE
DEVOLVED THE RULES OF
ATTENDANCE, THESE ARE OLDER
WOMEN WHO IN THE COMMUNITY NOW
THEY ARE IN COLLEGE, NOT AT
HOME BUT GIVE ADVICE, WE CANNOT
DISMISS THEM BECAUSE THE BABIES
DO COME SOMETIMES IN THE MIDDLE
OF THE NIGHT AND IN TERMS OF
ISSUE OF ACCESS, WE HAVE WOMEN
IN THE MOST REMOTE RURAL AREAS
SO SOME OF THESE TRADITIONAL
ATTENDANCE ARE OLDER WOMEN
WITHIN THEIR COMMUNITIES BUT WE
ARE TRYING TO AVOID HOME
DELIVERIES BECAUSE OF THE
COMPLICATIONS AND RISKS
INVOLVED.
WE ARE ENCOURAGING THEM IN
TERMS OF BABY CARE WE ARE
ENCOURAGING THEM TO BE FOR
WOMEN TO THE HOSPITAL INSTEAD
OF DELIVERING THEM AT HOME.
SO THAT IS MY TAKE ON THAT.
>> THANK YOU VERY MUCH.
GO AHEAD, NGOZI.
>> WHEN A WOMAN DELIVERS HER
WOMAN COMES AND STAYS WITH HER
IN THE POSTPARTUM PERIOD, LIKE
SIX WEEKS.
SO YOU SEE MOTHERS COME IN FOR
POSTPARTUM CHECKUP, FOR
CIRCUMCISION OF THE BOY, ALL
THAT.
OLDER WOMEN ARE INTEGRAL PART.
THEY ALSO PROVIDE MENTAL HEALTH
SUPPORT.
A LOT OF YOUNGER WOMEN WHEN
THEY HAVE CHILDREN, THEY ARE
STRESSED AND OVERWHELMED.
SO THE MOTHERS, OLDER WOMEN,
BACKBONE, SOME WOMEN WILL BREAK
IF THEIR MOTHERS ARE NOT THERE
IN PROVIDING POSTPARTUM CARE.
MOST TIMES WHEN YOU ARE IN THE
HOSPITAL AND PERSON LABORING,
THE PERSON THEY ARE CRYING FOR
ISN'T THE HUB, HUSBAND, THEY
JUST WANT THE MOTHER THERE.
WE USUALLY ENGAGE MOTHER WHEN
IT COMES TO HEALTHCARE
INTERVENTION.
WE TELL THE WOMEN TAKE INFORMED
CONSENT HOME AND TALK TO YOUR
SIGNIFICANT OTHER, THEY ALSO
NEED THEY NEED TO TALK TO THEIR
MOTHERS. MOTHERS NEVER LIE THEY
TELL YOU THE TRUTH AND HAVE A
LOT OF EXPERIENCE AND JUST WANT
THE BEST FOR THEIR KIDS.
WE ALWAYS INTEGRATE THEM IN OUR
COMMUNITY ENGAGEMENT AND FOCUS
GROUP DISCUSSIONS.
OLDER WOMEN IN THE SOCIETY IS
VERY IMPORTANT FABRIC FOR
SOCIETY.
>> ABSOLUTELY.
VERY WELL SAID.
THE COMMENTS RESONATED WITH A
LOT OF OUR AUDIENCES. I SEE
THERE'S A COMMENT IN THE CHAT
YOUR NOVEL APPROACHES COULD BE
USEFUL HERE IN THE U.S. WHERE
ESPECIALLY RURAL COMMUNITIES
HAVE LIMITED ACCESS TO
HEALTHCARE AND INTERNET
CONNECTIVITY.
ISSUES SUCH AS LMIC.
LEVERAGE THE EXISTING STRENGTHS
WITHIN THE COMMUNITY, WHETHER
THAT BE THROUGH COMMUNITY
HEALTH WORKERS OR OLDER WOMEN,
INCLUDING THEM IN COMMUNITY
ENGAGEMENT AND IMPLEMENTATION
STRATEGY BUT JUST LARGELY THE
WAY YOU ARE INNOVATIVELY USING
YOUR INTERVENTIONS TO
ESSENTIALLY TARGET SOME
BARRIERS ACROSS-THE-BOARD, NOT
JUST IN LMIC'S.
SARAH, DID YOU WANT TO SPEAK TO
THAT?
>> I THINK WHAT I LOVE HEARING
IS REGARDLESS WHERE WE ARE IN
THE WORLD THERE'S MORE WE CAN
DO FOR WOMEN BEFORE AND AFTER
THEIR CARE.
I KNOW SO MUCH IS FOCUSED ON
THE ACTUAL DELIVERY, THAT'S A
VERY INTENSE MOMENT AND A LOT
OF THINGS CAN GO WRONG.
BUT SO MUCH OF MATERNAL CARE IS
ACTUALLY THE MANY MONTHS
BEFOREHAND AND EVEN A COUPLE
MONTHS AFTER.
BECAUSE YOU COULD HAVE
PREECLAMPSIA AFTERWARDS, RIGHT?
I THINK THAT IS WHAT IS SO
AMAZING, THERE IS A LOT OF
INNOVATION, I THINK, THAT WE
CAN BRING FORWARD.
THROUGH ALL THE DIFFERENT
PRESENTATIONS, REGARDLESS OF
YOUR LOCATION.
I'M COMING FROM A FOR-PROFIT
COMPANY THAT SELLS DIGITAL
HEALTH TO A CERTAIN KIND OF
PATIENT.
EVEN THEN WHAT WE ARE TRYING TO
DO IS GIVE WOMEN SUPPORT BEFORE
THE DELIVERY AND OPTIMIZE TO
MAKE SURE THEY ARE THE
HEALTHIEST THEY CAN BE FOR THE
DELIVERY.
I THINK THAT IS SOMETHING THAT
IS JUST APPLICABLE EVERYWHERE
ACROSS THE WORLD.
>> COMPLETELY AGREE.
THANK YOU SO MUCH, SARAH.
I WANT TO BRING A QUESTION
FORWARD FOR ZALEHA.
ESSENTIALLY, HOW CAN HEALTHCARE
PROVIDERS AND ORGANIZATIONS BE
BETTER INTEGRATED WHEN
APPROPRIATE TO SUPPORT ADOPTION
OF INNOVATIVE MATERNAL
HEALTHCARE DELIVERY METHODS, I
MEAN YOU TOUCHED UPON IT A
LITTLE BIT WITH YOUR
PUBLICATION ON ACCEPTABILITY BY
THE HEALTHCARE PROVIDERS AND
PARTICULAR AUDIENCE MEMBER?
>> ALL RIGHT, THANK YOU, MALIHA.
IT'S ACTUALLY QUITE CHALLENGING
TO ENGAGE THE COMMUNITY WITH
TECHNOLOGICAL INNOVATION
BECAUSE IT'S SOMETHING NEW AND
THERE'S AULTZ THIS RESISTANCE
TO CHANGE.
THIS MULTI--PRONGED APPROACH
YOU HAVE TO TAKE, RIGHT FROM
THE TOP ENGAGING THE HIGHEST
AUTHORITIES IN THE MINISTRY,
FOR EX E., RIGHT DOWN TO THE
MASSES, LIKE THE KNOWLEDGE,
ATTITUDE AND PERCEPTIONS, THE
WAY THAT WE DID TO ASSESS THE
THOUGHTS AND FEELINGS OF PEOPLE
AT THE BOTTOM, WHAT THEY
THOUGHT ABOUT A CERTAIN
TECHNOLOGICAL INNOVATION.
FOR EXAMPLE, IF I COULD GIVE
YOU ANOTHER EXAMPLE OF AN
INNOVATION THAT WE DID.
SOMETHING LIKE WHAT NGOZI DID IN
NIGERIA, MALAYSIAN OBSTETRIC
MONITORING SYSTEM OR MY MOMS.
WE CONDUCTED A PUBLIC WEBINAR
AS WELL.
I BELIEVE THE VISIBILITY THE
EXISTENCE OF THE INNOVATION IS
VERY IMPORTANT.
MY MOMS IS THE DIGITAL VERSION
OF OUR PATIENT HEALTH AND CARE
RECORDS WITH DUAL USER
INTERFACE, PATIENT USER
INTERVASE, VIA SMARTPHONE LIKE
WHAT NGOZI PRESENTED.
AND PARTNERED WITH LOCAL I.T.
INDUSTRY IN DEVELOPING THE
SYSTEM.
MOST RECENTLY MY MONS HAS BEEN
APPROVED FOR CLINICAL USE BY
THE MANAGEMENT TEAM OF ACADEMIC
MEDICAL CENTER WHICH IS
SIGNIFICANT BREAK THROUGH FOR
US.
SYSTEM CAN , EVENTUALLY TURN
BIG DATA BEGINNING OF DIGITAL
COHORT FOR OUR POPULATION.
I WOULD SAY THAT'S THE
BEGINNING TO GET THE COMMUNITY
ACCEPT YOUR TECHNOLOGICAL
INNOVATION BY KEEP, WORKING AT
MAKING PEOPLE AWARE THAT THE
PRODUCT IS AVAILABLE FOR THEM
TO USE.
INDUSTRY COLLABORATION I WOULD
SAY IS VITAL AND VERY USEFUL.
THERE IS LESS BUREAUCRACY AND
YOU WILL BE ABLE TO PROGRESS
FASTER, INDUSTRY COLLABORATION
PROVIDES STRONG SUPPORT SYSTEM
ESPECIALLY IF THERE IS GENERAL
ENCOURAGEMENT FROM THE
GOVERNMENT FOR PUBLIC PRIVATE
PARTNERSHIP.
THANK YOU.
>> THANK YOU SO MUCH, ZALEHA,
MANY ARE JOINING FROM DIFFERENT
TIME ZONES AND THROUGHOUT THE
WORKSHOP MODERATORS AND
SPEAKERS HAVE BEEN FABULOUS.
BUT ZALEHA AS WE ARE CHATTING I
KNOW IT'S 3:00 IN THE MORNING
FOR YOU.
THANK YOU FOR BEING HERE AND
SHARING SO MUCH MAZING
INFORMATION, AND SO MUCH OF THE
WORK YOU ARE DOING.
I WILL KEEP THE QUESTIONS
GOING, UNLESS ANYONE ELSE, AND
PANEL IF THERE'S A QUESTION YOU
WANT TO ADD, GO AHEAD, WE DON'T
HAVE TO KEEP IT STRUCTURED WE
CAN KEEP IT VERY ORGANIC.
BUT I WAS GOING TO DIRECT MY
NEXT QUESTION TO SARAH, WHAT
ARE THE COMMON CHALLENGES AND
BARRIERS TO ADOPTION THAT YOU
HAVE ENCOUNTERED WHEN TRYING TO
INTRODUCE INNOVATIVE CARE
DELIVERY METHODS IN MATERNAL
HEALTH AND HOW DO YOU THINK
IMPLEMENTATION SCIENCE COULD
HELP ADDRESS THE I CHALLENGE.
>> SO YOU KNOW, WE ARE DIGITAL
HEALTH, TELEHEALTH DIGITAL
HEALTH STRENGTH IS THE GREATEST
STRENGTH AND CHALLENGE.
IF YOU HAVE SMARTPHONE, WI-FI,
BUT IT'S ALSO MUCH EASIER TO
MISS A CALL, THAN TO MISS AN
IN-PERSON APPOINTMENT THAT YOU
HAVE TO TAKE A HALF DAY OFF OF
WORK FOR.
SO IN THE BRICK AND MORTAR
SYSTEM, EXPERIENCE IS OFTEN
SECONDARY, WE EXPECT PATIENTS
TO COME AND WE DON'T REALLY
WORRY WHAT THE OFFICE LOOKS
LIKE OR SOMEBODY IS LIKE,
BEFORE DIGITAL HEALTH AND
TELEHEALTH, EXPERIENCE IS HOW
WE GET ACCESS TO THE PATIENT.
BECAUSE IF YOU DON'T ENGAGE
THEM THEY DON'T HAVE TO TURN
THE PHONE ON OR OPEN THE APP OR
ANSWER YOUR CALL, RIGHT?
I THINK ONE OF THE THINGS WE
SEE, FOR PROVIDERS IN THIS KIND
OF CARE DELIVERY SPACE, WE HAVE
TO MAKE THE EXPERIENCE ENGAGING
AND WE CAN'T JUST BLAME THE
PATIENT FOR NOT ENGAGING.
SOMETIMES THE CONVERSATION IS
THE PATIENT IS NOT ENGAGING,
THEY ARE NOT ADHERENT.
WE PUT THAT BURDEN ON THEM.
BUT OUR JOB, WHERE
IMPLEMENTATION SCIENCE COMES
IN, THERE'S NO ONE SIZE FITS
ALL.
EVERY COMMUNITY IS DIFFERENT.
EVERY TYPE OF PATIENT ENGAGES
DIFFERENTLY.
SOME PEOPLE LOVE APPOINTMENTS
WITH THEIR PROVIDERS. OTHERS
DON'T WANT TO MEET WITH A PRAO
VIEDER, THEY WANT TO LEARN
EVERYTHING THEMSELVES, WHAT WE
CALL ASYNCHRONOUS LEARNERS, SO
WE HAVE TO USE IMPLEMENTATION
SCIENCE FRAME WONGERS TO
UNDERSTAND AND BREAK DOWN WHERE
THE GAPS ARE FOR UNIQUE MENTOR
SEGMENTS BUT ANOTHER WORD IS
COMMUNITIES JUST DIFFERENT
TYPESES OF MEMBERS OR PATIENTS.
MAYBE MORE OF A TECH FIELD WORD
BUT AB TESTING.
YOU TRY SOMETHING, YOU MEASURE
IT, YOU PILOT IT, FIGURE OUT
WHAT DIDN'T WORK.
YOU TRY IT AGAIN, MEASURE IT
AND USE DATA.
I THINK THAT IS REALLY WHERE
IMPLEMENTATION SCIENCE COMES IN.
>> COMPLETELY AGREE.
I WONDER HOW YOU WERE TALKING
ABOUT ASYNCHRONOUS LEARNING,
VERSUS BEING IN THE PROVIDER'S
OFFICE.
I'M GUESSING THERE'S PROBABLY
AN AGE DIFFERENCE OR
DEMOGRAPHIC DIFFERENCE YOU
PROBABLY SEE IN TERMS
DEMOGRAPHIC YOU SEE.
>> YEAH, IT'S INTERESTING, WE
ARE FOCUSED ON MATERNAL HEALTH
HERE BUT WE ALSO PROVIDE
MENOPAUSE SUPPORTMENT WE SEE
DIGITAL LITERACY IS DIFFERENT
BETWEEN MENOPAUSE MEMBERS, ALSO
DPER TILT.
SOMETIMES WHEN YOU GO YOUNGER,
THE WAY THEY USE TECHNOLOGY IS
DIFFERENT.
THAT IS SOMETHING YOU HAVE TO
ACCOUNT FOR.
>> ABSOLUTELY.
THANK YOU, SARAH.
IF WE ARE OKAY, I WILL KEEP
MOVING FORWARD.
THANK YOU TO OUR PANELISTS FOR
ANSWERING THESE QUESTIONS AND
HELPING US MOVE THE DISCUSSION
ALONG.
MY NEXT QUESTION WAS FOR NGOZI.
HOW CAN IMPLEMENTATION SCIENCE
PRINCIPLES BE APPLIED TONE SURE
INNOVATIVE MATERNAL HEALTHCARE
DELIVERY METHODS ARE
SUSTAINABLE AND SCAPABLE IN THE
LONG TERM?
>> OKAY, SO LIKE SARAH SAID,
YOU KNOW, YOU NEED TO APPLY
THIS IMPLEMENTATION FRAMEWORKS
TO YOUR INTERVENTION,
DELIVERING YOUR INTERVENTION,
FOR INSTANCE WE HAVE -- WHEN
YOU ARE DOING THE EXPLORATION,
THERE'S A LOT OF COMMUNITY
ENGAGEMENT GOING ON.
YOU ARE USING THOSE FRAMEWORKS.
YOU ALSO ARE LOOKING AT WHEN
YOU ARE LOOKING AT THE PLANNING
STAGE, THERE'S ALSO A LOT OF
COMMUNITY ENGAGEMENT AND YOU
ARE ALSO ACCESSING THE BARRIERS
TO THE PARTICULAR INTERVENTION
YOU ARE GOING TO BE
IMPLEMENTING IN THESE
COMMUNITIES.
YOU DON'T GO INTO THE
COMMUNITIES BLINDED, IT GUIDES
YOU ON THINGS YOU ARE GOING TO
APPROACH THE COMMUNITIES
BECAUSE A LOT OF OUR WORKERS
ARE IN THE COMMUNITY, IN
NIGERIA YOU KNOW WE HAVE MORE
THAN 200 ETHNIC GROUPS AND MORE
THAN 200 HLAING WANLS WITH SIX
REGIONS. WE WORK ACROSS ALL THE
REGIONS. SO WHAT WORKS FOR ONE
REGION, DOESN'T USUALLY WORK
FOR ANOTHER REGION.
SO WE HAVE A LOT OF
CO-CREATIVE, WE HAVE A LOT OF
STAKEHOLDER ENGAGEMENTS, A LOT
OF DISCUSSIONS BACK AND FORTH.
FOR INSTANCE, LIKE THE BABY
SHOWER WE FOUND THAT WAS
POSSIBLE THROUGH PHASE OF ONE
OUR STUDIES BUT THE BABY SHOWER
WAS BASICALLY DESIGNED FOR THE
CHURCH, THE CHRISTIAN
COMMUNITIES.
WE FOUND OUT WE COULD ADAPT IT
FOR THE MUSLIM COMMUNITIES.
WE BROUGHT TOGETHER COMMUNITY
LEADERS AND RELIGION LEADERS,
AND WE ADAPTED BABY SHOWER FOR
THE MUSLIM COMMUNITY AND WAS
ABLE TO USE IT.
FOR FOR IMPLEMENTATION
PRINCIPLES, LOT OF CO-CREATION
STRATEGIES, PLANNING, IF YOU
FOLLOW THE STAGES OF THOSE
PHASES, YOU SEE IT KIND OF
GUIDES YOUR INTERVENTION, IT
HELPS YOU PAY ATTENTION TO THE
NITTY-GRITTY DETAILS THAT
NORMALLY YOU MIGHT OVERLOOK,
FOR INSTANCE, TO CREATE A
COMMUNITY ADVICE REPORT, IF YOU
DO NOT DO THE EXPLORATION PHASE
YOU WILL NOT KNOW IN SOME
COMMUNITIES YOU NEED TO CREATE
A CBA.
BECAUSE WHAT IS ACCEPTED IN ONE
COMMUNITY IS USUALLY NOT
ACCEPTED IN THAT COMMUNITY.
SOME COMMUNITIES THAT HAVE
CBA'S CREATED FROM TRADITIONAL
LEADER, RELIGION LEADER, THE
COMMUNITY LEADER, THE KING, THE
HEALTH WORKER.
WHY IN SOME OTHER COMMUNITIES
JUST GOING INTO THE COMMUNITY
IS FINE.
EVERYBODY LISTENS TO THE
COMMUNITY LEADER.
THEY DON'T WANT ANY OTHER
PERSON INTERFERING WITH THAT.
IMPLEMENTATION FRAMEWORK
ACTUALLY HELPED US IN OUR
INTERVENTION TO ACTUALLY TAILOR
OUR INTERVENTIONS WITH CONTEXT
SPECIFIC.
WE MAY BE ONE COUNTRY, ONE
ETHNIC GROUP WITH DIFFERENT
ETHNICITY, DIFFERENT LANGUAGES
AND DIFFERENT BELIEF SYSTEM AND
CULTURAL PRACTICES.
>> ABSOLUTELY, NGOZI, I THINK
YOU HIT THE NAIL ON THE HEAD.
AS YOU SAID, FRAMEWORKS DEFINE
HOW WE CONDUCT THE RESEARCH.
BUT IT'S A BIT OF A RESEARCH
GAP WHERE CENTERING THE
COMMUNITIES IN THOSE FRAMEWORKS
HASN'T BEEN DONE AS INTENSELY
AS SOME PROJECTS SO REALLY
CENTERING THOSE COMMUNITIES AND
THE IMPLEMENTATION FRAMEWORKS
AROUND HEALTH EQUITY IS WHAT'S
REALLY NEEDED TO HAPPEN.
YOU ARE WORKING TOWARDS A GOAL
THAT WILL ACTUALLY BENEFIT THE
COMMUNITY AND NOT JUST RESULT
IN PAPERS SO THAT OUR RESEARCH
REALLY GOES FROM THE BENCH TO
THE BOOKSHELF BUT RESULTS IN
IMPACT TO THE COMMUNITIES.
WE HAVE ANOTHER QUESTION IN THE
CHAT.
I THINK IT'S ADDRESSED LARGELY
TO THE PANELISTS SO ANYONE IS
FREE TO RESPOND.
HOW COULD REGULATORY BODIES
ENSURE ETHICAL CONCERNS ARE
ADDRESSED WHILE PROMOTING
INNOVATION AND PATIENT DATA
MANAGEMENT.
EXCELLENT QUESTION.
ANYONE CAN JUMP IN.
>> THE QUESTION IS, HELLO, YOU
ARE LOOKING AT REGULATING
BODIES.
>> CORRECT.
>> YOU HAVE A LOT OF RESEARCH
GOING ON IN COMMUNITIES.
IT'S IMPORTANT SOCIETIES ARE
AWARE WE HAVE HUMAN RIGHTS
ISSUES. IN ORDER FOR YOU TO
ACCESS, THE VULNERABLE
POPULATIONS ARE OFTEN MISUSED
AND OVER RESEARCHED.
SO IN TERMS OF ETHICAL, IT'S
IMPORTANT THAT AN ETHICAL
APPROVALS ARE GRANTED FOR
RESEARCH STUDIES.
AND ALSO IN TERMS OF, LET'S SAY
YOU HAVE NEW INNOVATIONS YOU
WANT DO HAVE TESTED, I THINK
THE PHARMACY, THE
PHARMACEUTICAL AND BOARD SHOULD
COME ON BOARD TO ENSURE THEY
ARE SAFE AND THEY ARE OF GOOD
QUALITY.
THEN I THINK WE NEED TO HAVE
RESEARCH STUDIES CONDUCTED, SO
WE KNOW WHERE WE ARE AND HOW
SAFE THINGS ARE.
I THINK IT'S WRONG TO START OFF
A NEW PRODUCT WITHOUT INFORMING
SOCIETY ABOUT IT.
WE HAVE INSTITUTION AND RHODE
ISLAND VIEW BOARDS AND ALSO
ETHICAL REVIEW BODIES SO ISSUES
LIKE THINGS LIKE MATERIAL AND
TRANSFER AGREEMENT.
ALL OF THESE ARE BUILT INTO
MOST OF THE RESEARCH
APPLICATIONS NOWADAYS SO PEOPLE
AREN'T TAKING ADVANTAGE.
SO IT'S VERY IMPORTANT.
ESPECIALLY FOR LOW-MIDDLE
INCOME COUNTRIES WE HAVE LOW
LEVELS OF EDUCATION, SO WOMEN
AND CHILDREN THEY ARE NOT AWARE
OF SOME OF THEIR RIGHTS SO IT'S
IMPORTANT THEY ARE PROTECT AT
SOME POINT.
SO I THINK THE ETHICAL AND
COMMUNITIES THEY HAVE ROLES TO
PLAY IN TERMS OF INNOVATING.
PEOPLE TRUST THEIR SYSTEM.
PEOPLE TRUST THE SERVICE
PROVIDERS. SO AS HEALTHCARE
PROVIDERS I THINK WE ARE IN A
POSITION TO ENSURE THAT
WHATEVER, YOU KNOW, IS TESTED
OUT THERE IS BASED ON EVIDENCE
AND PROVEN TO BE SAFE, OF GOOD
QUALITY AND DOES NOT ENDANGER
THE LIFE OF THE MOTHER AND THE
BABY.
I THINK THAT'S MY TAKE ON THAT.
>> THANKS SO MUCH.
I SEE YOUR HAND IS UP, ZALEHA.
WOULD YOU LIKE TO JOIN IN?
>> I AGREE WITH JOAN.
IF WE START THE IMPLEMENTATION
OF THE INNOVATION, AS A
RESEARCH PROJECT, YOU ARE VERY
MUCH, YOU KNOW, WITHIN THE
BOUNDARIES OF GOOD ETHICS
BECAUSE IT WILL HAVE TO BE
SUBJECT TO THE ETHICS OF THE
INSTITUTION WHERE YOU CONDUCT
THE RESEARCH.
FOR THE DRONE PROJECT WE WERE
SUBJECTED TO RIGOROUS REVIEW BY
THE INSTITUTIONAL REVIEW BOARD
OF THE MINISTRY OF HEALTH.
AND THEY WENT TO THE EXTENT OF
ASKING US WHETHER THERE WAS
INSURANCE COVERAGE, FOR
EXAMPLE, IF THE DRONE WERE TO
FALL ON SOMEBODY'S HEAD, FOR
EXAMPLE.
WE WERE FORTUNATE THAT WE WERE
WORKING WITH ROBUST, VERY GOOD
INDUSTRY WITH A LOT OF
EXPERIENCE AS DRONE OPERATOR
AND THEY ACTUALLY HAD INSURANCE
COVERAGE ALREADY TAKEN FOR SUCH
EVENTUALITIES SO WE WERE QUITE
SAFE THERE.
>> THANK YOU, ZALEHA, THAT WAS
A WONDERFUL RESPONSE.
AND NGOZI, I THOUGHT YOU MIGHT
HAVE SOMETHING.
YOU WANT TO WEIGH IN?
>> YES, YOU KNOW IN NIGERIA, WE
HAD SOME ETHICAL MISHAPS IN THE
PAST.
BECAUSE THAT, OUR ETHICAL
REVIEW BOARDS IN THE COUNTRY
NOW PAY MORE ATTENTION TO THE
ETHICS OF OF RESEARCH GOING ON
THERE.
BUT ONE CRITICAL PART IS EQUITY.
ONE WAY TO ENSURE EQUITY IN
PROCESS OF RESEARCH IS ALSO
CONCEPT.
SO WHAT WE NOTICED IN MOST OF
OUR COMMUNITIES, YOU KNOW,
PEOPLE, YOU CAN TRANSLATE, YOU
KNOW, THE INFORMED CONSENT.
IN THAT PERSON'S LANGUAGE.
OR YOU GIVE THE PERSON
TRANSLATING THE PAPER AND SAY
OKAY YOU CAN READ THIS.
SOME PEOPLE CAN SPEAK THE
LANGUAGE BUT CANNOT READ THE
LANGUAGE.
WHAT DO WE DO IN INTERVENTION
TO ENSURE THE WOMAN OR PERSON
WE ARE RECRUITING TO OUR
STUDIES ARE FULLY AWARE OF
EVERY ASPECT WHAT THEY ARE
SIGNING UP FOR.
NOT ONLY DO WE GET A GENERAL
CONSENT, WE DO THE INFORMED
CONSENT, TAKE IT, TRANSLATE IT,
TAKE IT HOME AND READ OR GIVE
IT TO SOMEONE TO READ.
WE ALSO SHOW A VIDEO IN YOUR
LANGUAGE OF THE CONSENT PROCESS.
SOME PEOPLE DON'T KNOW HOW TO
READ, THEY WILL NOT TELL YOU,
MOST PEOPLE ARE VISUAL IN
NATURE, THEY UNDERSTAND THE
ANIMATION, THE LANGUAGE AND
PROCESS AND CAN PLAY IT OVER
AND OVER AGAIN.
MOST TIMES WE EVEN DO WHAT THEY
CALL A ROLE PLAY.
DO YOU UNDERSTAND, YES, OKAY.
TELL ME WHAT IS SAID.
SO THE WOMEN WILL TELL YOU,
EXACTLY WHAT THEY THINK.
SO IF THERE'S ANY
MISINFORMATION WE CORRECT IT AT
THAT POINT.
SO WE MAKE SURE THAT EVERYBODY
IS EDUCATED, NOT JUST THINK
THEY CAN READ OR THOSE DO NOT
UNDERSTAND WHAT AN INFORMED
CONSENT IS.
IT'S IMPORTANT PEOPLE
UNDERSTAND WHAT THEY ARE
GETTING INTO, NOT JUST BY PEER
PRESSURE, THEY NEED TO
UNDERSTAND, EVEN THE GOOD AND
BAD.
WE TELL THEM BOTH WAYS.
THIS IS THE DOWN SIDE GETTING
INVOLVED IN THIS STUDY AND THIS
IS ALSO THE BENEFITS.
SO THEY ARE REALLY, REALLY
AWARE.
WE MAKE THE INFORMED CONSENT
VERY EQUITABLE.
SO THEY CAN UNDERSTAND WHAT
THEY ARE GETTING INTO AND GIVE
FULL CONSENT.
>> INNOVATIVE WAY TO
COMMUNICATE THE ASPECTS
INFORMED CONSENT THROUGH
VIDEOS. I THINK THE CULTURAL
APPROPRIATENESS HOW WE GET
CONSENT IS ALSO SOMETIMES
OVERLOOKED AND THAT LEADS TO
ETHICAL AND OTHER CONCERNS
COMING UP.
I THINK WE SHOULD START TO WRAP
UP.
I WILL WRAP UP BY MY LAST
QUESTION AND I WANT EACH OF THE
PANELISTS TO WEIGH IN ON THIS.
EACH OF YOU HAVE A CHANCE TO
WEIGH IN ON THIS LAST QUESTION
BEFORE I HAND IT OVER TO THE
CO-LEADS TO WRAP UP AND PROVIDE
A SUMMARY.
LOOKING FORWARD, WHAT ARE YOUR
HOPES AND EXPECTATIONS FOR THE
FUTURE OF MATERNAL HEALTHCARE
DELIVERY AND HOW CAN INNOVATION
AND IMPLEMENTATION SCIENCE
CONTRIBUTE TO ACHIEVING THESE
GOALS.
IT'S A LARGE QUESTION.
GIVE US YOUR SHORT IMMEDIATE
THOUGHTS THAT COME TO MIND.
I WILL START WITH ZALEHA.
>> THANK YOU, MALIHA.
MORE THAN TECHNOLOGICAL
INNOVATION, I THINK
TRANSPARENCY AND AUDIT ARE MOST
IMPORTANT IN TERMS OF
SAFEGUARDING MATERNAL HEALTH.
I'M A MEMBER OF THE MALAYSIAN
CONFEDERATION INQUIRY INTO
MATERNAL DEATHS.
ALONG WITH OTHER EFFECTIVE
MEASURES SUCH AS ENSURING
NEARLY 100% PROFESSIONAL CHILD
BIRTH ATTENDANCE AND ADEQUATE
PRENATAL CARE, I THINK CMD WAS
VERY EFFECTIVE TOOL.
I THINK BEING ABLE TO SINGLE
OUT FACTORS FROM EACH AND EVERY
CASE THAT WAS AUDITED HELPS TO
CLEARLY HIGHLIGHT.
MANY ESSENTIAL IMPROVEMENTS
HAVE BEEN MAIDEN HANSING
HEALTHCARE EQUITY AND
ACCESSIBILITY, THOSE ARE THE
TWO KEYWORDS. CONFIDENTIAL
INQUIRIES HAVE A REQUIREMENT OF
COMMITMENT FROM THE BODIES
INVOLVED, THE STAKEHOLDERS
INVOLVED IN HIGH-LEVEL PLANNING
AND POLICY.
SO CONFIDENTIAL INQUIRIES HAVE
A POTENTIAL TO MAKE GREATEST
IMPACT ON MATERNAL DUE TO
LINKAGE TO POLICY MAKING AS
WELL AS PERCEIVED PRESTIGE AND
REPRESENTATIVES. INNOVATION
WHETHER TECHNOLOGICAL OR
OTHERWISE IS IMPORTANT TO
ADDRESS PROBLEMS DIFFERENTLY.
IT PROVIDES A USEFUL TOOL THAT
CAN BE APPLIED THE DIFFERENCE
BETWEEN KNOWING AND DOING.
>> THANK YOU, ZALEHA.
SARAH, CAN WE GO TO YOU NEXT.
>> SURE ONE OF THE REASON UZ I
ACTUALLY JOINED, -- THAT'S
THE POSITIVE.
TO YOUR QUESTION ABOUT
INNOVATION AND IMPLEMENTATION
SCIENCE, MAYBE I WILL TAKE,
MAYBE NOT AS POSITIVE, BUT IT'S
A CAUTIONARY TALE.
WE CANNOT BE TOO ACADEMIC,
RIGHT?
WE TALK A LOT ABOUT RESEARCH.
OFTEN TIMES RESEARCH DOESN'T
TRANSLATE, RIGHT?
I THINK IT'S THAT WE NEED TO
CONSIDER AND FOCUS N THE
BUSINESS CASE AND COST
EFFECTIVENESS OF INNOVATIVE
IDEAS. I THINK IMPLEMENTATION
SCIENCE, THERE'S A LOT OF WORK
THAT HAS TO GO INTO THE
FEASIBILITY AND SUSTAINABILITY
OF SOMETHING.
SOMETIMES THE REASON IT'S NOT
SUSTAINABLE, IT'S NOT
IMPLEMENTATION SCIENCE, IT'S
MORE REGULATORY.
I THINK ZALEHA MENTIONED THIS,
YOU HAVE A REGULATORY PROBLEM
OR CAN'T FIND FUNDING.
ALMOST AS MUCH EFFORT NEEDS.
SOMEBODY WHO CARES ABOUT THE
PROBLEM WILLING TO PAY FOR IT
BECAUSE EVERYTHING TAKES MONEY.
I THINK THAT IS SOMETIMES, IN A
GENERAL SENSE, IF WE GET TOO
ACADEMIC, WE ARE ABLE TO GET
FUNDING FOR THE ONE STUDY BUT
IT'S NOT SUSTAINABLE BECAUSE
THE BUSINESS CASE OR THE ROI
WAS THERE NOT AT THE VERY
BEGINNING.
SO I THINK IMPLEMENTATION
SCIENCE, ALSO PRACTICAL WORLD
WE CAN GET PEOPLE TOO REALLY
SUPPORT CARE ABOUT ISSUES IN
MATERNAL HEALTH.
>> ABSOLUTELY.
JOAN, WOULD YOU LIKE TO GO NEXT?
>> YES, PERSPECTIVE OF A
MIDWIFE AND MIDWIFE EDUCATOR, I
BELIEVE WE SHOULD TRY AT ALL
COST TO REMOVE GEOGRAPHICAL
BARRIERS.
NO WOMAN SHOULD BE OUT OF REACH.
IT DOESN'T MEAN THAT IF SHE IS
FAR AWAY SHE SHOULD RECEIVE
POOR QUALITY CARE.
WE NEED TO GET OUT AND REMOTE
RURAL AREAS. ONE OF OUR
COLLEAGUES TALKED ABOUT THE
DRONE.
TO GET BLOOD TRANSFUSION OR TO
COLLEAGUES ON THE OTHER SIDE.
SOME COUNTRIES HAVE MADE
MATERNAL FLAGSHIP.
IT'S IMPORTANT WE INVEST IN
MORE, MOST AREN'T GIVE
ESPECIALLY, IT'S HIGHLY
IMPORTANT WE TRY TO HAVE
RESOURCE MOBILIZATION DRIVE-IN
TERN ALLEY AS NATURAL LEVEL TO
BE ABLE TO SUPPORT SOME WOMEN,
ISSUES OF SUSTAINABILITY NEEDS
TO BE ADDRESSED.
WHEN YOU ENGAGE COMMUNITIES
INTO THEIR OWN PROBLEMS, WHEN
YOU MAKE THEM TO FEEL THEY ARE
EQUALLY IMPORTANT, THEY GIVE
THEIR BEST.
COMMUNITIES ARE NOT IN
ISOLATION, WE ARE PART
COMMUNITIES.
COMMUNITIES HAVE GREAT
POTENTIAL GUESSING SOME OF THE
QUESTIONS THEY, I THINK WE NEED
TO ADOPT MORE DISCIPLINARY
PERSPECTIVE.
ENGINEERS, THOSE WHO TAKE CARE
OF THE RULES.
NOT ONLY THE MEDICAL APPROACH.
TO BRING ONBOARD OTHER
COLLEAGUES.
I BELIEVE THAT LOW AND MIDDLE
INCOME COUNTRIES SHOULD NOT
SUFFER THE BRUNT.
WE NEED TO ENSURE THAT WOMEN
HAVE EQUAL ACCESS TO SOME OF
THE SERVICES THAT ARE VERY MUCH
NEEDED.
WE NEED TO ALSO INVEST IN
INTERVENTIONS THAT TARGET NOT
ONLY THE MOTHER BUT ALSO THE
UNBORN CHILD AND ALSO THE
NEWBORN BABY.
I THINK WE ALSO NEED TO EXPLORE
COST-EFFECTIVE METHODS, EXAMPLE
FOR PREECLAMPSIA, DOCTOR WAS
UTILIZING.
THE DOCTOR WAS ASKING THE
WOMEN, SO THERE ARE HOME GROWN
SOLUTIONS TO SOME PROBLEMS.
WE NEED TO MEET EACH OTHER, THE
LOW MIDDLE INCOME, AT SOME
POINT, I THINK BY AT LARGE,
MATERNAL AND CHILDISH SHOE,
WHAT ARE THE PROBLEMS?
ISSUES OF POVERTY NEEDS TO BE
ADDRESSED.
GENDER EQUALITY ISSUES NEEDS TO
ALSO BE ADDRESSED.
WE NEED TO LOOK AT 23R5R, AND
THE PERSONNEL THEMSELVES AND
LOOK AT OUR POLICIES.
OUR S.O.P.'S, OUR PROTOCOL AND
STANDARDS WE ARE USING.
THERE WE NEED TO EVALUATE THE
SERVICES GIVEN EVALUATE THE
PERSONNEL WORKING WITHIN SUCH
PROGRAMS AND GO BACK TO THE
WOMEN THEMSELVES.
WOMEN NEED TO KNOW THEY ARE
INVOLVED IN PREGNANCY, WE NEED
TO EMPOWER WOMEN THROUGH
CULTURE, EDUCATION AND NEED TO
ALSO EMPOWER WOMEN TO KNOW THEY
SHOULD SEEK EARLY IN HOSPITAL.
I THINK THAT'S MY TAKE ON THAT.
>> THANK YOU, JOAN, THAT WAS
VERY COMPREHENSIVE, APPRECIATE
YOUR THOUGHTS. NGOZI, WOULD YOU
LIKE TO CLOSE OUT WITH SOME
STATEMENTS AND YOUR THOUGHTS?
>> YES, FROM OUR EXPERIENCE IN
CARRYING OUT INTERVENTIONS IN
COMMUNITIES, ESPECIALLY IN THE
LMIC'S, WE LACK INFRASTRUCTURE.
SO A LOT OF MONEY GOES INTO
BUILDING.
THAT'S THE FOUNDATION OF
THEY'VINGER.
-EVERYTHING.
IF WE DEPLOY TECHNOLOGY IN THE
RURAL AREA, WE NEED TO BUILD
INFRASTRUCTURE IN RURAL AREAS.
FOR EXAMPLE, WITH NEED TO
PROVIDE TABLETS FOR DOCTORS AND
TAR LET'S FOR THE COMMUNITY
RESEARCHERS TO BE ABLE TO LINK
THAT.
KNOW AND WE NEED -- WE HAVE A
LOT TO LEARN FROM THE HIGH
INCOME AND MIDDLE INCOME
COMMUNITIES.
I LOOK AT WHAT SARAH SAID ABOUT
COST EFFECTIVENESS AND
SUSTAINABILITY.
WE HAVE INTERVENTIONS NOT COST
EFFECTIVE FOR THE LMIC.
JUST IMPORTING INNOVATIONS
AFTER THAT, WHAT NEXT?
THAT'S ONE OF THE REASONS,
DOING A LOT OF RESEARCH,
COLLECTING THAT.
I WAS ASKING MYSELF, WHAT NEXT,
WHERE ARE YOU COLLECTING THIS,
AND PEOPLE IN THE XHUPITY ARE
ASKING YOU, WHAT IS NEXTER.
IT NEEDS TO BE SUSTAINABLE.
WE NEED TO LOOK AT
CONTENT-SPECIFIC SUSTAINABLE
INNOVATIONS FOR MATERNAL-CHILD
HEALTH OUTCOMES.
WE CANNOT JUST SAY KEEP DOING
THIS, THIS WORKS HERE AND THERE.
HAVE WE TRIED IT HERE.
IT'S NOT WHETHER IT WORKS IS IT
SUSTAINABILITY THIEFRJ YOU.
>> VERY WELL SAID.
I THINK IT'S A CROSS-CUTTING
THEME WE HAVE BEEN HEARING
ABOUT LOTS OF PANELS CONTEXT
MATTERS. THANK YOU, NGOZI WITH
THAT NOTE AND I WANT TO THANK
ALL OF OUR ESTEEMED PANELISTS
FOR JOINING US TODAY.
WAND THAT I WILL HAND IT OVER
TO THE CO-LEADS OF THIS
WORKSHOP.
KAREN AND I THINK VERONICA WILL
BE CLOSING US ALL OUT WITH A
SUMMARY.
GO AHEAD, V.
>> THANK YOU, DR. ILIAS.
THANK YOU EVERYONE FOR YOUR
THOUGHTFUL AND IMPACTFUL
ENGAGING PRESENTATIONS AND
DISCUSSIONS.
AS WE CONCLUDE OUR TWO-DAY
WORKSHOP ON THE GLOBAL
IMPLEMENTATION SCIENCE
APPROACHES ON IMPROVE MATERNAL
HEALTH, HEART, LUNG BLOOD AND
SLEEP HEALTH OUTCOMES, WE WANT
TO GO TO VALUABLE INSIGHTS
SHARED ON BOTH DAYS.
>> THANK YOU, THIS WORKSHOP
DEDICATED SPECIFIC PANELS TO
MAJOR HEALTH DOMAINS,
CARDIOVASCULAR HEALTH,
HEMATOLOGY, BLOOD TRANSFUSIONS,
SLEEP AND LUNG HEALTH.
THIS ALLOWED US TO DIVE DEEP
AND ADDRESS UNIQUE CHALLENGES
AND INNOVATIVE APPROACHES.
WE WILL START WITH SOME KEY
PANEL HIGHLIGHTS AND CONCLUDE
WITH CROSS-CUTTING THEMES THAT
CAME FROM THE DISCUSSIONS.
I WILL START WITH KEY
TAKE-AWAYS FROM DAY ONE.
THERE WERE MANY FANTASTIC
POIBTS THAT WERE BROUGHT UP AND
WE ATTEMPTED TO SYNTHESIZE TO
CONCLUDE THE WORKSHOP.
I WILL TRY TO DO DAY ONE'S
FULLY DISCUSSION, NEXT SLIDE,
PLEASE.
WE WILL START WITH
CARDIOVASCULAR TAKE AWAYS,
WHERE THE SURVEILLANCE SYSTEMS
EXIST THEY SHOULD BE OPTIMIZED
IN PAY WAY THAT ALLOW FOR
MAXIMUM LEVERAGING, SUCH AS
ELECTRONIC HEALTH RECORDS.
WE ALSO NEED TO REIMAGINE
MATERNAL CARDIOVASCULAR HEALTH
FROM A BROADER WOMEN'S HEALTH
PERSPECTIVE AND EXAMPLES
BROUGHT UP EARLY DETECTION OF
HEART DISEASE, ENSURING
CONTINUITY OF PRIMARY CARE,
POSTPARTUM AND BEYOND.
ADDITIONALLY THERE WAS A HUGE
OPPORTUNITY TO LEAPFROG
PROGRESS USING NEW TECHNOLOGIES.
EXAMPLES INCLUDE POINT OF CARE
TESTING AND HEALTH INNOVATIONS
AND STRATEGIC USE OF A.I.,
ESPECIALLY IN LMICKS. GLAOEL
COLLABORATION AND CONSORTIA FOR
IMPLEMENTATION SCIENCE
RESEARCH, ALLOW FOR
BIDIRECTIONAL LEARNING.
NEXT SLIDE, PLEASE.
FOR THE PANEL 2, HEMATOLOGY AND
BLOOD PANEL, DISCUSSIONS
INCLUDED:
[READING SLIDE]
>> THANK YOU.
FROM THE LUNG PANEL WE LEARNED
THERE ARE EXPOSURES THAT RISK
IMPAIRED LUNG HEALTH THROUGH
LIFE INNOVATIVE COMMUNITY TO
PROTECT HIGH-RISK POPULATIONS
AND OPTIMIZE COMMUNITY
STRATEGIES TO PROTECT HIGH-RISK
POPULATION PRENATAL RESPIRATORY
HEALTH.
WE ALSO SAW EMPHASIS OF
PREGNANT PEOPLE WITH CYSTIC
FIBROSIS, NEED FOR MORE
LARGE-SCALE STUDIES TO DEVELOP
EVIDENCE-BASED GUIDELINES FOR
MANAGING PREGNANCY WITH CF AND
RARE LUNG DISEASES. NEXT SLIDE,
PLEASE.
IN THE SLEEP PANEL WE SAW:
ANOTHER WAS KEY QUESTIONS
REMAINING ABOUT THE IMPACT OF
SLEEP HEALTH DISPARITY AND
INTERVENTIONS OF PRENATAL,
PERINATAL AND POSTPARTUM
OUTCOMES.
WE ALSO SAW THE IMPLEMENTATION
SCIENCE FRAMEWORKS CAN HELP
IDENTIFY GAPS BETWEEN RESEARCH
AND PRACTICE OFFERING
OPPORTUNITIES TO ENHANCE
MATERNAL HEALTH THROUGH
IMPROVED SLEEP INTERVENTIONS.
NEXT SLIDE, PLEASE.
FROM THE INNOVATIVE CARE
DELIVERY PANELS, WE HIGHLIGHTED
SIGNIFICANT REDUCTIONS IN
MATERNAL AND INFANT MORTALITIES
IN LMIC'S LIKE SIERRA LEONE
THROUGH TARGETED INTERVENTIONS
LIKE ANTENATAL CARE, EMERGENCY
OBSTETRIC CARE AND
ESTABLISHMENT OF MATERNAL DEATH
SURVEILLANCE AND RESPONSE
COMMITTEES. WE SAW TRAINING OF
MIDWIFES, DOCTORS AND COMMUNITY
HEALTH OFFICERS AND COMMUNITY
HEALTH WORKERS IS IMPORTANT FOR
PROGRAMS.
ACCEPTANCE OF HEALTHCARE
TECHNOLOGIES LIKE DRONES ARE
ESSENTIALLY WITH NAVIGATING
REGULATIONS AND ENSURING BLOOD
QUALITY IN VARYING CLIMATES.
NEXT SLIDE, PLEASE.
TO HIGHLIGHT SOME COMMON
OBSERVATIONS AND KEY POINTS
FROM BOTH DAYS WE LEARNED
FACTORS LIKE AGE, RACE,
ETHNICITY AND ECONOMIC STATUS
CAN INCREASE RISK FOR PREGNANT
INDIVIDUALS.
WE SAW THERE'S A LACK OF SOCIAL
SUPPORT, TRANSPORTATION,
MEDICAL COVERAGE, FOOD
INSECURITY AND POOR ACCESS TO
AFFORDABLE HOUSING ARE MAJOR
CONTRIBUTORS TO MATERNAL HEALTH
INEQUITIES AND DISCUSSED
IMPORTANCE OF INTEGRATED CARE
APPROACHES.
THESE INCLUDE SELF-MANAGEMENT
SUPPORT, REGULAR CLINICAL,
BEHAVIORAL AND SOCIAL
CHECK-INNS ASSISTANCE WITH
NAVIGATING CLINICAL AND SOCIAL
SERVICES. SUCH APPROACHES CAN
SIGNIFICANTLY REDUCE RISKS AND
IMPROVE OUTCOMES.
IT'S IMPORTANT TO INCLUDE
PREGNANT INDIVIDUALS IN
RESEARCH STUDIES TO ENSURE THE
FINDINGS ARE RELEVANT AND
APPLICABLE.
IN SCALING UP THESE
EVIDENCE-BASED INTERVENTIONS
THROUGH IMPLEMENTATION RESEARCH
IS ESSENTIAL FOR ACHIEVING A
BROADER IMPACT AND ENHANCING
MATERNAL HEALTH ON A LARGER
SCALE.
NEXT SLIDE, PLEASE.
SO TO ROUND US OUT, THE PAST
TWO DAYS WE SAW MANY
CROSS-CUTTING THEMES THAT HAVE
EMERGED FROM OUR SESSION, MOST
OF WHICH HAVE BEEN DISCUSSED
THROUGHOUT THE PANELS,
ESPECIALLY THE LAST PANEL.
THE FIRST WAS EQUITY AND
INCLUSION IN MATERNAL HEALTH
THAT HAVE BEEN AT THE FOREFRONT.
EMPHASIS WAS PLACED ON
ADDRESSING BIRTH EQUITY SYSTEMIC
DISPARITIES ENSURING INCLUSIVE
HEALTHCARE PRACTICES AND
SESSIONS THAT INCLUDED WI
DISCUSSED BIRTH EQUITY,
CRITICAL NEED TO CONFRONT AND
ADDRESS SYSTEMIC INE QUAILTS TO
IMPROVE MATERNAL HEALTH
OUTCOMES.
DISCUSSIONS ALSO HIGHLIGHTED
IMPORTANCE OF
INTERDISCIPLINARY,
MULTI-DISCIPLINARY AND
MULTI-SECTOR COLLABORATIONS
WITH EXPERTS FROM FIELDS SUCH
AS OBSTETRICS, GYNECOLOGY,
EPIDEMIOLOGY, PUBLIC HEALTH
CAME TOGETHER TO STRESS THE
NEED FOR INTEGRATED APPROACHES.
PANELS LIKE MATERNAL HEALTH
XHUPITY IMPLEMENTATION PROGRAM
AND OTHERS SHOWCASE HOW DIVERSE
EXPERTISE AND MULTI-SECTOR
ENGAGEMENT ARE CRUCIAL FOR
OVERCOMING IMPLEMENTATION
CHALLENGES AND MULTI-SECTOR
ENGAGEMENT ARE CRUCIAL,
ENGAGEMENT AND EMPOWERMENT WAS
ANOTHER RECURRENT THEME, THE
ROLE OF COMMUNITY INVOLVEMENT
AND ENHANCING MATERNAL HEALTH
OUTCOMES ACROSS THE CONTINUUM
WAS EMPHASIZED AND REINFORCING
EFFECTIVE SOLUTIONS OFTEN
REQUIRE ACTIVE COMMUNITY
PARTICIPATION AND INPUT.
IN TERMS OF INNOVATIVE
SOLUTIONS, SEVERAL SESSIONS
HIGHLIGHTED ADVANCEMENTS THEY
MADE IN MATERNAL HEALTHCARE
DELIVERY.
MOST RECEPTLY THE FINAL PANEL
ON THE INNOVATIVE METHODS SUCH
AS TELEHEALTH, DRONE DELIVERY,
ILLUSTRATING HOW TECHNOLOGY CAN
SIGNIFICANTLY TRANSFORM AND
ENHANCE MATERNAL HEALTH
SERVICES. OUR DISCUSSION ALSO
HIGHLIGHTED THE BALANCE OF
GLOBAL AND LOCAL AND
IMPLEMENTATION SCIENCE
APPROACHES IN ADDRESSING HLBS
ISSUES. THESE PRESENTATIONS
INCLUDING THOSE ON GLOBAL
SUCCESSES TO ADOPT
EVIDENCE-BASED PRACTICES AND
ADDRESSING MATERNAL MORTALITY
IN LMIC'S EMPHASIZE THE VALUE
OF ADAPTING SUCCESSES TO LOCAL
CONTEXT.
ENSURING EVIDENCE-BASED
PRACTICES ARE EFFECTIVELY
TAILORED TO MEET THEIR LOCAL
NEEDS.
RECIPROCAL LEARNING AND
CAPACITY BUILDING IS ANOTHER
EMERGING THEME.
BY FOSTERING BIDIRECTIONAL
KNOWLEDGE EXCHANGE WE EMPOWER
COMMUNITIES AND HEALTH
PROFESSIONALS WORLDWIDE.
ENHANCING CAPABILITIES AND
STRENGTHENING HEALTHCARE
SYSTEMS, THIS APPROACH AIMS TO
IMPROVE MATERNAL HEALTH
OUTCOMES IN AREAS LIKE HEART,
LUNG, BLOOD AND SLEEP HEALTH
OUTCOMES AND CREATE A MORE
EQUITABLE AND EFFECTIVE GLOBAL
HEALTHCARE LANDSCAPE.
THE IMPORTANCE OF REACH WAS
EMPHASIZED ENSURING MATERNAL
HEALTH INTERVENTIONS HAVE BROAD
EQUITABLE REACH AND LONG-TERM
SUSTAINABILITY IS VITAL FOR
MAKING A LASTING IMPACT ON
MATERNAL HEALTH OUTCOMES
GLOBALLY.
IN CONCLUSION PARTNERSHIPS WERE
HIGHLIGHTED.
BY COMBINING DIVERSE EXPERTISES
RESOURCES AND PERSPECTIVES,
PARTNERSHIPS CREATE INNOVATIVE,
EFFECTIVE AND SUSTAINABLE
SOLUTIONS THAT REACH BORDER
POPULATIONS AND TACKLE SYSTEMIC
DISPARITIES.
SO AS WE MOVE FORWARD, LET US
CARRY THESE INSIGHTS AND
COMMITMENTS WITH US.
TOGETHER WE CAN MAKE
SIGNIFICANT STRIDES AND IMPROVE
MATERNAL, HEART, LUNG, BLOOD
AND SLEEP HEALTH OUTCOMES BOTH
DOMESTICALLY AND GLOBALLY.
NEXT SLIDE.
WE WANT TO TAKE THIS
OPPORTUNITY TO EXTEND MY
DEEPEST GRAT TAOUT TO ALL OUR
KEYNOTE SPEAKERSS, PANELISTS,
MODERATORS AND ATTEND
EES, THE BREADTH AND DEPTH HAVE
TRULY ENRICHED OUR
UNDERSTANDING OF MATERNAL
HEALTH CRISIS AND POTENTIAL
SOLUTIONS WE CAN EXPLORE
THROUGH IMPLEMENTATION SCIENCE.
THE SPECIAL THANK YOU GOES OUT
TO MY CO-CHAIR DR. KAREN AND
NHLBI PLANNING TEAM LISTED HERE
FOR THEIR EXCEPTIONAL
COLLABORATION DEDICATION AND
ORGANIZING THIS WORKSHOP WITH
ME.
GRATITUDE TO THE AV TEAM,
BRITTNEY, ENTIRE WORKSHOP
SUPPORT TEAM FOR YOUR BEHIND
THE SCENES WORK FOR EXECUTION
OF THIS WORKSHOP AND SCIENCE
WRITER FOR CAPTURING THE
DISCUSSIONS AND INSIGHTS OVER
THE PAST TWO DAYS.
LAST BUT NOT LEAST I WOULD LIKE
TO THANK OUR LEADERSHIP AND
THANK YOU ONCE AGAIN FOR YOUR
PARTICIPATION AND ENGAGEMENT
FOR THIS VITAL CAUSE, I WISH
EVERYONE A WONDERFUL EVENING
AND EARLY MORNING AND I LOOK
FORWARD TO STAYING CONNECTED AS
WE CONTINUE TO STRIVE FOR
IMPROVED GLOBAL MATERNAL HEALTH.
AND WITH THAT, I OFFICIALLY
CLOSE THE WORKSHOP.
THANK YOU.
AND GOODBYE.