Stakeholder Engagement in Patient-Centered Outcomes Research
Stakeholder engagement is crucial in patient-centered outcomes research to involve key stakeholders like researchers, patients, healthcare providers, and others throughout the research process. Including stakeholders helps in designing and conducting studies, broadening the impact of results, and delivering messages effectively.
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Presentation Transcript
Stakeholder Engagement for Patient-Centered Outcomes Research Vanessa Jacoby, MD, MAS Associate Professor Obstetrics, Gynecology, and Reproductive Sciences University of California, San Francisco
Change in Research Model Change in Research Model Design the Study Conduct the Study Researchers Stakeholders Disseminate and Implement Results
Who are the Key Stakeholders? Who are the Key Stakeholders? Researchers Patients and their families Health care providers Drug and device companies Health Insurers Disease Advocates/Foundations Government agencies Others?
Why include stakeholders in research? Why include stakeholders in research? Help Enrollment Design the Study Conduct the Study Diverse opinions strengthen design Support Funding Disseminate and Implement Results Broaden impact of results Deliver message effectively
Why include stakeholders in research? 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 .
Stakeholder Engagement Stakeholder Engagement No standard approach Include stakeholders in all phases of research Example of common stakeholder engagement strategy
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)
Stakeholder Engagement 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)
Stakeholder Advisory Group Stakeholder Advisory Group Ob/Gyns Women with Fibroids Government and Nonprofit Agencies (e.g. ACOG) Health Insurers Fibroid Device and Drug Manufacturers Health Systems
Stakeholders and Study Design Stakeholders and Study Design What are the most important outcomes of fibroid treatment? Heavy Bleeding and fertility failure Pregnancy Treatment STAKEHOLDER Women with fibroids x x x Ob/Gyns x x x Device manufacturers x x Health insurers x
Stakeholders and Study Design Stakeholders and Study Design What are the most important outcomes of fibroid treatment? Heavy Bleeding and fertility failure Pregnancy Treatment Sexual Function and Mental health x STAKEHOLDER Women with fibroids x x x Ob/Gyns x x x Device manufacturers x x Health insurers x
Stakeholders and Study Design Stakeholders and Study Design What are the most important outcomes of fibroid treatment? Heavy Bleeding and fertility failure Pregnancy Treatment Sexual Function and Mental Health x Cost effectiveness STAKEHOLDER Women with fibroids x x x Ob/Gyns x x x Device manufacturers x x Health insurers x x
Stakeholders and Recruitment Stakeholders and Recruitment How do we successfully enroll participants? Clinical encounters Advertising Social media STAKEHOLDER Women with fibroids x Ob/Gyns x Device manufacturers x Health insurers x
Challenges with Stakeholder Representatives Challenges with Stakeholder Representatives 1 patient on Steering Committee Thousands of women with fibroids Input from Do stakeholders, especially patients, accurately represent their community? High health literacy Get along with researchers Able to attend meetings
New approach to Stakeholder Engagement New approach to Stakeholder Engagement Thousands of women with fibroids Thousands of women with fibroids Input from Crowdsource participation in research Create online platform for stakeholder collaboration
Proposals developed, discussed, and revised online Academic medical center faculty and staff only
Crowdsourcing Research to Diverse Stakeholders Welcome all perspectives: Research is stronger when all voices are heard and valued
Build trust Respect privacy Support open discussions MOSAIC Website open to public Registration required to post comments Select identity settings
PCORI funded Community Engaged Network for All Patient Powered Research Network (PPRN) Joubert Syndrome and Related Disorders Foundation (JSRDF) plan for research protocol
Brainstorming Research Ideas Brainstorming Research Ideas
Discussing the Study Protocol Discussing the Study Protocol
Maintaining Engagement Maintaining Engagement Opportunity to follow the research Real time email/text message updates as research is conducted
Disseminate and Implement Results 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
Challenges with Mosaic Challenges with Mosaic Women who Access Mosaic Thousands of women with fibroids Input from Need to connect to broader audience (e.g. text messaging) Need core study team with enthusiastic partners
Stakeholder Engagement Stakeholder Engagement Improves and strengthens clinical research Involve stakeholders from the start of research Many approaches to engagement more innovations soon!
