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CER 2016 Jacoby stakeholder engagement
1. Stakeholder Engagement for
Patient-Centered Outcomes Research
Vanessa Jacoby, MD, MAS
Associate Professor
Obstetrics, Gynecology, and Reproductive Sciences
University of California, San Francisco
2. Change in Research Model
Design
the Study
Conduct
the Study
Disseminate and
Implement
Results
ResearchersStakeholders
3. Who are the Key Stakeholders?
Researchers
Patients and their families
Health care providers
Drug and device companies
Health Insurers
Government agencies
Disease Advocates/Foundations
Others?
4. Why include stakeholders in research?
Design
the Study
Conduct
the Study
Disseminate
and Implement
Results
Support Funding
Help Enrollment
Diverse opinions
strengthen design
Broaden impact of results
Deliver message effectively
5. Why include stakeholders in research?
Required by
Patient Centered Outcomes Research Institute
Authorized by Congress in 2010 as part of the Affordable Care Act
PCORI supports “research that addresses the questions and concerns most
relevant to patients, and we involve patients, caregivers, clinicians, and other
healthcare stakeholders, along with researchers, throughout the process”.
6. Stakeholder Engagement
No standard approach
Include stakeholders in all phases of research
Example of common stakeholder engagement strategy
7. COMPARING OPTIONS FOR MANAGEMENT:
PATIENT-CENTERED RESULTS FOR UTERINE FIBROIDS
Nationwide prospective cohort study
10,000 women undergoing treatment for uterine fibroids
Compare symptoms and fertility/ pregnancy outcomes among fibroid treatments
Funded by PCORI and AHRQ (Agency for Healthcare Research and Quality)
8. Stakeholder Engagement
Patients representatives involved in grant development
One patient is voting member of Steering Committee
Stakeholder Advisory Group is key study committee (20 members)
9. Stakeholder Advisory Group
Health Insurers
Ob/Gyns
Fibroid Device and Drug
Manufacturers
Health Systems
Government and Nonprofit Agencies
(e.g. ACOG)
Women with Fibroids
10. Stakeholders and Study Design
What are the most important outcomes of fibroid treatment?
STAKEHOLDER
Heavy
Bleeding
Pregnancy
and fertility
Treatment
failure
Women with
fibroids x x x
Ob/Gyns x
x x
Device
manufacturers x x
Health
insurers x
11. Stakeholders and Study Design
What are the most important outcomes of fibroid treatment?
STAKEHOLDER
Heavy
Bleeding
Pregnancy
and fertility
Treatment
failure
Sexual
Function
and Mental
health
Women with
fibroids x x x x
Ob/Gyns x
x x
Device
manufacturers x x
Health
insurers x
12. Stakeholders and Study Design
What are the most important outcomes of fibroid treatment?
STAKEHOLDER
Heavy
Bleeding
Pregnancy
and fertility
Treatment
failure
Sexual
Function and
Mental
Health
Cost
effectiveness
Women with
fibroids x x x x
Ob/Gyns x
x x
Device
manufacturers x x
Health insurers
x x
13. Stakeholders and Recruitment
How do we successfully enroll participants?
STAKEHOLDER
Clinical
encounters
Advertising Social media
Women with
fibroids
x
Ob/Gyns x
Device
manufacturers
x
Health insurers x
14. Challenges with Stakeholder Representatives
• Do stakeholders, especially patients, accurately represent their
community?
High health literacy
Get along with researchers
Able to attend meetings
Thousands of women
with fibroids
Input from
1 patient on
Steering Committee
15. New approach to Stakeholder Engagement
Crowdsource participation in research
Thousands of women
with fibroids
Input from
Thousands of women
with fibroids
Create online platform for stakeholder collaboration
17. Crowdsourcing Research to Diverse Stakeholders
• Welcome all perspectives: “Research is stronger
when all voices are heard and valued”
18. Build trust
Respect privacy
Support open discussions
MOSAIC
◦ Website open to public
◦ Registration required to post
comments
◦ Select identity settings
19. PCORI funded Community Engaged Network for All
Patient Powered Research Network (PPRN)
Joubert Syndrome and Related Disorders Foundation
(JSRDF) plan for research protocol
23. Disseminate and Implement Results
Medical journals have limited audience
Stakeholders engaged in their community
Stakeholders can support implementation of results
---AMA changes guidelines
---Blue Cross changes coverage decisions
24. Challenges with Mosaic
Need to connect to broader audience (e.g. text messaging)
Need core study team with enthusiastic partners
Women who Access
Mosaic
Input from
Thousands of women
with fibroids
25. Stakeholder Engagement
Improves and strengthens clinical research
Involve stakeholders from the start of research
Many approaches to engagement…more innovations soon!