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EXTENDING SHARED DECISION
MAKING TO MATERNITY CARE:
    OPPORTUNITIES AND CHALLENGES




                                         Carol Sakala
                                Director of Programs
                               Childbirth Connection
                                        July 30, 2012
OPPORTUNITY:
         GREAT POTENTIAL REACH

• Maternity care impacts
 • everyone at the beginning of life
 • 85% of women who give birth once or, mostly,
   multiple times




                                            2
OPPORTUNITY:
  FOCUSED ATTENTION & PREPARATION

• Well-defined episode of care, with 9 months
  to
 • make prenatal decisions
 • prepare for birth, postpartum, and infant care




                                               3
OPPORTUNITY:
     HIGHLY MOTIVATED POPULATION

• Pregnant and birthing women have
  exceptional
 • interest in supporting the well-being of their
   fetus/newborn
 • commitment to improving their own health




                                                4
OPPORTUNITY: NEW COMMUNICATION
     CHANNELS & FUNCTIONALITY

• Communication options via Internet,
  intranets: computers, mobile devices, apps,
  EHRs, PHRs
• Potential to
 • extend reach to more people and places
 • incorporate interactivity, personalization
• Listening to Mothers III will identify practices,
  options, and preferences
                                                5
OPPORTUNITY: A NEW GENERATION THAT
    EMBRACES AND EXPECTS SDM?

• Following childbearing experiences, women
  may demand SDM processes for
 • their own care through the life course
 • care of family members, over time and across
   generations




                                             6
OPPORTUNITY:
  RELATIVELY MATURE EVIDENCE BASE

• Iain Chalmers & colleagues’ major 1989
  pregnancy & childbirth systematic review
  publications
 • inspired establishment of Cochrane Collaboration
 • fostered 1000s of Cochrane and journal- and
   agency-based pregnancy and childbirth SRs




                                             7
OPPORTUNITY: SDM AS RESOURCE FOR
      EVIDENCE-PRACTICE GAPS

• Decision aids can address
 • equipoise
 • clinical uncertainty
 • evidence-practice gaps, as documented in
   Evidence-Based Maternity Care (2008)




                                              8
OPPORTUNITY: POTENTIAL FOR RAPID
  GAINS IN QUALITY, OUTCOMES & VALUE

• Short- and long-term gains from high-quality
  maternity care
• Wellness focus can prevent or delay chronic
  disease
• Contrasts with challenges of chronic diseases




                                         9
OPPORTUNITY: UNPRECEDENTED COMMITMENT TO
      HIGH-PERFORMING HEALTH SYSTEM

• Synergy through
  • decision aids to engage women in obtaining high-
    quality maternity care
  • complementary improvement via payment and
    delivery innovations, performance measurement,
    quality collaboratives, harnessing health IT, etc.




                                               10
CHALLENGE: TWO INDIVIDUALS
    RECEIVING CARE SIMULTANEOUSLY
• Differential effects of decisions on women and
  fetuses/newborns
• Benefit/harm trade-offs often more complex

Solution:
• Use effective visual displays
• User test
• Provide good support for identifying and
  weighing preferences
                                             11
CHALLENGE: TECHNOLOGY-INTENSIVE
  PRACTICE STYLE, DOZENS OF DECISIONS

• Childbearing women face many decisions,
  especially during relatively brief intrapartum period
• Challenge for development, updating

Solution:
• Strategically identify priority decisions
• Include decision support resources until other DAs
  are available
• Limit to maternity care decisions
                                              12
CHALLENGE: HOW TO REACH WOMEN FOR
   TWO CONSEQUENTIAL DECISIONS?
• Major implications of
 • choice of maternity care provider
 • choice of birth setting
• Unlikely to make shared decision with provider
Solution:
• Access Smart Decision Guide via, e.g., search
  engines, social media, advocates, employers
• Change if initial decisions are not good fit

                                            13
CHALLENGE: HOW TO BRING BENEFITS OF
SDM TO WOMEN AROUND THE TIME OF BIRTH?

 • Steady stream of decisions
 • Rapid decision making often required
 • Considerable physical & emotional demands
 • Labor benefits from undisturbed limbic system

 Solution:
 • Anticipatory guidance, mobile app, engage
   support team members (PCORI application)

                                           14
CHALLENGE:
MAKING DECISION IS JUST THE BEGINNING
• Well documented gaps between maternity care
  preferences and care actually received
• Preferred care may be difficult or impossible to
  find: e.g., VBAC, vaginal breech or twins

Solution:
• Smart Decision Guides have back-end support to
  help women achieve their preferred care
• Prevention: e.g., focus on external version rather
  than vaginal breech

                                             15
CHALLENGE: CHILDBIRTH AT
FOREFRONT OF DEMOGRAPHIC TRANSITION

• Culturally and linguistically diverse population

Solution:
• Optimize mix of backgrounds in focus groups
• Optimize mix of backgrounds in videos

*More targeted adaptations (e.g., Spanish) out
 of reach at present

                                           16
CHALLENGE:
       EXTENSIVE MEDICAID COVERAGE
• 2009 maternal hospitals stays
 • private insurance: 47%
 • Medicaid: 45%
• Medicaid programs have educational material
  reading level requirements: typically, 6th grade
Solution:
• Seeking funding to pilot low-health-literacy
  adaptations of 3 initial Smart Decision Guides
                                           17
CHALLENGE: SDM LARGELY NEW TO
       U.S. MATERNITY CARE PROVIDERS
• SDM increasingly integrated into health care reform
  and quality improvement
• Most existing maternity care decision aids
  developed for use in other countries
Solution:
• Continuously raise awareness among clinicians,
  policymakers, women, and other stakeholders
• Begin with high-demand topics
• Feature and pilot with early adopters

                                             18

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Extending Shared Decision Making to Maternity Care: Opportunities and Challenges

  • 1. EXTENDING SHARED DECISION MAKING TO MATERNITY CARE: OPPORTUNITIES AND CHALLENGES Carol Sakala Director of Programs Childbirth Connection July 30, 2012
  • 2. OPPORTUNITY: GREAT POTENTIAL REACH • Maternity care impacts • everyone at the beginning of life • 85% of women who give birth once or, mostly, multiple times 2
  • 3. OPPORTUNITY: FOCUSED ATTENTION & PREPARATION • Well-defined episode of care, with 9 months to • make prenatal decisions • prepare for birth, postpartum, and infant care 3
  • 4. OPPORTUNITY: HIGHLY MOTIVATED POPULATION • Pregnant and birthing women have exceptional • interest in supporting the well-being of their fetus/newborn • commitment to improving their own health 4
  • 5. OPPORTUNITY: NEW COMMUNICATION CHANNELS & FUNCTIONALITY • Communication options via Internet, intranets: computers, mobile devices, apps, EHRs, PHRs • Potential to • extend reach to more people and places • incorporate interactivity, personalization • Listening to Mothers III will identify practices, options, and preferences 5
  • 6. OPPORTUNITY: A NEW GENERATION THAT EMBRACES AND EXPECTS SDM? • Following childbearing experiences, women may demand SDM processes for • their own care through the life course • care of family members, over time and across generations 6
  • 7. OPPORTUNITY: RELATIVELY MATURE EVIDENCE BASE • Iain Chalmers & colleagues’ major 1989 pregnancy & childbirth systematic review publications • inspired establishment of Cochrane Collaboration • fostered 1000s of Cochrane and journal- and agency-based pregnancy and childbirth SRs 7
  • 8. OPPORTUNITY: SDM AS RESOURCE FOR EVIDENCE-PRACTICE GAPS • Decision aids can address • equipoise • clinical uncertainty • evidence-practice gaps, as documented in Evidence-Based Maternity Care (2008) 8
  • 9. OPPORTUNITY: POTENTIAL FOR RAPID GAINS IN QUALITY, OUTCOMES & VALUE • Short- and long-term gains from high-quality maternity care • Wellness focus can prevent or delay chronic disease • Contrasts with challenges of chronic diseases 9
  • 10. OPPORTUNITY: UNPRECEDENTED COMMITMENT TO HIGH-PERFORMING HEALTH SYSTEM • Synergy through • decision aids to engage women in obtaining high- quality maternity care • complementary improvement via payment and delivery innovations, performance measurement, quality collaboratives, harnessing health IT, etc. 10
  • 11. CHALLENGE: TWO INDIVIDUALS RECEIVING CARE SIMULTANEOUSLY • Differential effects of decisions on women and fetuses/newborns • Benefit/harm trade-offs often more complex Solution: • Use effective visual displays • User test • Provide good support for identifying and weighing preferences 11
  • 12. CHALLENGE: TECHNOLOGY-INTENSIVE PRACTICE STYLE, DOZENS OF DECISIONS • Childbearing women face many decisions, especially during relatively brief intrapartum period • Challenge for development, updating Solution: • Strategically identify priority decisions • Include decision support resources until other DAs are available • Limit to maternity care decisions 12
  • 13. CHALLENGE: HOW TO REACH WOMEN FOR TWO CONSEQUENTIAL DECISIONS? • Major implications of • choice of maternity care provider • choice of birth setting • Unlikely to make shared decision with provider Solution: • Access Smart Decision Guide via, e.g., search engines, social media, advocates, employers • Change if initial decisions are not good fit 13
  • 14. CHALLENGE: HOW TO BRING BENEFITS OF SDM TO WOMEN AROUND THE TIME OF BIRTH? • Steady stream of decisions • Rapid decision making often required • Considerable physical & emotional demands • Labor benefits from undisturbed limbic system Solution: • Anticipatory guidance, mobile app, engage support team members (PCORI application) 14
  • 15. CHALLENGE: MAKING DECISION IS JUST THE BEGINNING • Well documented gaps between maternity care preferences and care actually received • Preferred care may be difficult or impossible to find: e.g., VBAC, vaginal breech or twins Solution: • Smart Decision Guides have back-end support to help women achieve their preferred care • Prevention: e.g., focus on external version rather than vaginal breech 15
  • 16. CHALLENGE: CHILDBIRTH AT FOREFRONT OF DEMOGRAPHIC TRANSITION • Culturally and linguistically diverse population Solution: • Optimize mix of backgrounds in focus groups • Optimize mix of backgrounds in videos *More targeted adaptations (e.g., Spanish) out of reach at present 16
  • 17. CHALLENGE: EXTENSIVE MEDICAID COVERAGE • 2009 maternal hospitals stays • private insurance: 47% • Medicaid: 45% • Medicaid programs have educational material reading level requirements: typically, 6th grade Solution: • Seeking funding to pilot low-health-literacy adaptations of 3 initial Smart Decision Guides 17
  • 18. CHALLENGE: SDM LARGELY NEW TO U.S. MATERNITY CARE PROVIDERS • SDM increasingly integrated into health care reform and quality improvement • Most existing maternity care decision aids developed for use in other countries Solution: • Continuously raise awareness among clinicians, policymakers, women, and other stakeholders • Begin with high-demand topics • Feature and pilot with early adopters 18