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October 25th, 2016 12:00-1:00 PM EST
PCORI Engagement Webinar: Leveraging Patient and Stakeholder Engagement to Facilitate Study and Research Network Recruitment: Stories of Impact from PCORI Funded Projects
Jaye Bea Smalley, MPAEngagement Officer, PCORI
Sunbo Igho-Osagie, MHSA, PMP, CSSGBProgram Associate, PCORI
• PCORI overview: mission and strategic goals, approach for patient and stakeholder engagement in research
• Introductions and presentations from featured PCORI projects• Q&A, additional PCORI resources
• Lines muted during presentation• During Q&A portion, operator will open phone lines • Submit questions via the Q&A function at anytime during the
webinar• Please respond to follow up survey!
Agenda/Ground Rules
Our Mission and Strategic Goals
PCORI helps people make informed healthcare decisions, and improves healthcare delivery and outcomes, by producing and promoting high-integrity, evidence-based information that comes from research guided by patients, caregivers, and the broader healthcare community.
Our Strategic Goals:
Increase quantity, quality, and timeliness of useful, trustworthy research information available to support health decisions
Speed the implementation and use of patient-centered outcomes research evidence
Influence research funded by others to be more patient-centered
We Fund Research That…
• Patients are partners in research, not just “subjects”
• Active and meaningful engagement between scientists, patients, and other stakeholders
• Community, patient, and caregiver involvement already in existence or a well-thought-out plan
“Patient and stakeholder engagement”
What we mean by…
• The project aims to answer questions or examine outcomes that matter to patients within the context of patient preferences
• Research questions and outcomes should reflect what is important to patients and caregivers
“Patient-centeredness”
The PCORI Approach to Engagement-Our Engagement Rubric
At the conclusion of this webinar, participants will be able to:
• Discuss various examples of how patients and stakeholders may help inform successful recruitment strategies and tactics to address barriers.
• Recognize the assets that patient and stakeholder partners may bring to research teams for developing recruitment strategies.
• Explain the value patients and stakeholders bring to studies and research networks to address recruitment barriers.
• Identify barriers and challenges that may arise when recruiting minority populations and how they may be addressed through patient and stakeholder research partners.
Learning Objectives for Today’s Webinar
A Patient-Centered Strategy for Improving Diabetes Prevention in Urban American IndiansRandall Stafford, MD, MS, PhDProfessor of MedicineDirector, Program on Prevention Outcomes and PracticesPrincipal Investigator
Lisa Goldman Rosas, PhD, MPHAssistant ScientistPalo Alto Medical Foundation Research Institute & Consulting Assistant Professor, Department of Medicine Standford University
Jan J. Vasquez, MPH, CHESResearch DirectorPathways to American Indian & Alaska Native Wellness
The Multiple Sclerosis Patient-Powered Research Network, iConquerMS™
Sara LoudChief Operating OfficerAccelerated Cure Project
Laura Kolaczkowski, BACo-PI MS-PPRN and Lead Patient Representative
Jan Vasquez, MPH CHESLisa Goldman Rosas, PhD MPH
Randall Stafford, MD PhD
Community Engagement & Study RecruitmentPathways to American Indian &
Alaska Native Wellness
10
Pathway1. Background
2. Partnership development
3. Successful engagement strategies for recruitment
4. Unsuccessful strategies
5. Lessons learned
Pathways to American Indian/Alaska Native Wellness (PAAW) Trial Background
5.2 million American Indians/Alaska Natives (AIAN)
Rural
Urban
AIAN adults are twice as likely to be diagnosed with diabetes compared to non-Hispanic whites
Historical trauma identified by the community as leading to diabetes and hindering prevention efforts
12
PAAW Partnership Development
13
1. Background and history2. Developing community advisory board3. Creating partnership agreements4. Co-learning for establishing trust5. Building capacity in research and cultural
competence
PAAW & the American Indian Community Action Board
14
PAAW Engagement Structure
15
PAAW Study Design
Enhanced DPP• 16 week behavioral lifestyle
intervention + enhancements:– Talking circles– Photovoice– Digital storytelling– Mental health support– -Cultural retreat
204 adults:• Self-identified indigenous to
the Americas• BMI 30+• +1 non-weight related
criteria of metabolic syndrome
Standard DPP
Enhanced DPP
• Follow-up of 12 months
• Dual outcomes: BMI, quality of life (SF-12)
Rosas LG, Vasquez JJ, Naderi R, Jeffery N, Hedlin H, Qin F, LaFromboise T, Megginson N, Pasqua C, Flores O, McClinton-Brown R, Evans J, Stafford RS. Contemporary Clinical Trials. 2016
16
PAAW trial recruitment
17
PAAW trial progressCharacteristic Overall Group 1 Group 2
N=207 N=102 N=105
Age, years (mean, SD) 52.1± 13.3 51.9 ±12.8 52.3± 13.8
Female 79 78 79
Race/ethnicity (%)
Indigenous from US 44 39 48
Multi-race 24 26 22
Latino 54 53 54
Education (%)
< high school 13 11 16
High school 21 22 19
Some college 44 43 45
College 13 14 12
> College 9 10 9
BMI (mean, SD) 37.3 ±6.2 36.9± 5.6 37.7± 6.718
Engagement to support successful recruitment
1. Staffing2. Goal alignment3. Diverse outreach 4. Weekly + tracking and monitoring5. Incentives6. Fun & ceremony
19
Successful Engagement Strategies: Staffing
• Strategies to hire the best staff• Knowledge of health disparities / personal experience• Commitment to the rigor needed for clinical trial• Offer training and experience as major benefit• Hire AICAB members• Hire to build community capacity
• Approaches to retaining staff• Use model of “training to build skills”• Flexible scheduling and work in community• Rehiring former employees who left in good standing• Including staff in design decisions and problem solving
20
Successful Engagement Strategies: Goal Alignment
• Acknowledge researcher & community goals overlap and differ
• Commitment from researchers and community members to work towards each other’s goals
• Emphasize common goals• Return to partnership agreements to realign• Be flexible/adaptable when possible
21
Successful Engagement Strategies:Diverse outreach
• Pragmatic and adaptive• Diverse locations:
– Community-based organizations that serve AIAN, AIAN events, other local events, local faith based organizations, community health centers, local businesses
• “Pounding the pavement”– Try many different locations– Count even small yields as successful
• Utilize relevant media outlets:– Social media– Print media– AIAN TV shows
22
Successful Engagement Strategies: Tracking and monitoring
• Weekly reports to track recruitment goals• Daily monitoring of staff time devoted to
recruitment• Weekly problem solving of barriers
encountered
23
Successful Engagement Strategies: Incentives
• Chosen by AICAB• Relevant to community needs, examples:
– Gym (with pool) membership– Walking shoes, pedometers, gym bags, water
bottles– Healthy meal at each class– Support person (friend or family member)
24
Successful Engagement Strategies: Fun & Ceremony
• Natives on the Move• Community Dinners
25
Unsuccessful Strategies
26
• Expecting AICAB members to recruit without paying them for their time– Despite incentives for successful recruits
• Recruitment incentives in general– Lack of careful screening: Many ineligible referrals
• Community health centers– Less interest in DM prevention vs. treatment
• Recruiting from clinical sites– Interest mostly by patients with diabetes (ineligible)– Eligible patients with multiple co-morbidities
Keys to Success: Community engagement
• Genuine shared leadership• Frequent discussion of budget to support
engagement• Transparency related to project goals & budget• Frequent monitoring of goals• Attention to staffing• Have fun!
27
Leveraging Patient and Stakeholder Engagement to Facilitate Study and Research Network Recruitment:
Stories of Impact from PCORI Funded Projects
Presenters:Sara Loud, COO, Accelerated Cure ProjectProject Manager, iConquerMS™
Laura Kolaczkowski, Lead Patient Co-Principal Investigator, iConquerMS™
iConquerMS™ is the MS PPRN = Multiple Sclerosis Patient Powered Research Network
The iConquerMS™ Engagement Pathway
The Accelerated Cure Project for Multiple Sclerosis was founded by a person with MS, giving it a patient centric view from its beginning.
Engaging people with MS in all phases of the development of iConquerMS™ was a natural continuation of ACP’s patient centric model
What does it mean to engage people with multiple sclerosis?
Initially that engagement involved the organizational needs of getting iConquerMS funded and structural design, including:
Engagement in writing the funding proposal
Engagement in designing the portal and initiative
Engagement at all levels of governance
Then the focus turned to understanding the larger question-
What are the opportunities to recruit other people with MS
to enroll and participate in iConquerMS?
Through discussions and much reflection and analysis, the recruitment pathway was designed to give a visual representation of the process of how people learn about iConquerMS, and ultimately decide to join
Awareness Curiosity Consideration Conversion Engagement
Ignore
Leadership
iConquerMS Recruitment Pathway
Awareness Curiosity Consideration Conversion Engagement
• Blogs
• Facebook page and ads
• YouTube
• Direct email
• Ambassadors
• MS events/self-help groups
• Conferences
• Webinars
• Friends
• Advocacy Orgs (NMSS, MSAA, MSF, CanDoMS)
• Health care providers
• Pharma Co. Patient Support
• Search engines
Join
Ignore
Leadership
iConquerMS Recruitment Pathway
Awareness Curiosity Consideration Conversion Engagement
• Blogs
• Facebook page and ads
• YouTube
• Direct email
• Ambassadors
• MS events/self-help groups
• Conferences
• Webinars
• Friends
• Advocacy Orgs (NMSS, MSAA, MSF, CanDoMS)
• Health care providers
• Pharma Co. Patient Support
• Search engines
• View mobile microsite
• Read more at portal
• Ask trusted sources
• Email iConquerMS™ with questions
• Sign up for email updates
Join
Ignore
Leadership
iConquerMS Recruitment Pathway
Awareness Curiosity Consideration Conversion Engagement
• Blogs
• Facebook page and ads
• YouTube
• Direct email
• Ambassadors
• MS events/self-help groups
• Conferences
• Webinars
• Friends
• Advocacy Orgs (NMSS, MSAA, MSF, CanDoMS)
• Health care providers
• Pharma Co. Patient Support
• Search engines
• View mobile microsite
• Read more at portal
• Ask trusted sources
• Email iConquerMS™ with questions
• Sign up for email updates
• Read newsletter
• Read ACP / iConquerMS™ emails
• Like/share Facebook page/Twitter
• Ask trusted sources
Join
Ignore
Leadership
iConquerMS Recruitment Pathway
Awareness Curiosity Consideration Conversion Engagement
• Blogs
• Facebook page and ads
• YouTube
• Direct email
• Ambassadors
• MS events/self-help groups
• Conferences
• Webinars
• Friends
• Advocacy Orgs (NMSS, MSAA, MSF, CanDoMS)
• Health care providers
• Pharma Co. Patient Support
• Search engines
• View mobile microsite
• Read more at portal
• Ask trusted sources
• Email iConquerMS™ with questions
• Sign up for email updates
• Read newsletter
• Read ACP / iConquerMS™ emails
• Like/share Facebook page/Twitter
• Ask trusted sources
• Consent and register
Join
Ignore
Leadership
iConquerMS Recruitment Pathway
Awareness Curiosity Consideration Conversion Engagement
• Blogs
• Facebook page and ads
• YouTube
• Direct email
• Ambassadors
• MS events/self-help groups
• Conferences
• Webinars
• Friends
• Advocacy Orgs (NMSS, MSAA, MSF, CanDoMS)
• Health care providers
• Pharma Co. Patient Support
• Search engines
• View mobile microsite
• Read more at portal
• Ask trusted sources
• Email iConquerMS™ with questions
• Sign up for email updates
• Read newsletter
• Read ACP / iConquerMS™ emails
• Like/share Facebook page/Twitter
• Ask trusted sources
• Consent and register
• Fill in health data surveys for longitudinal study REAL MS
• Propose research topics
• Provide feedback on research topics and protocols
• Participate in specific studies
• Serve as Ambassador (events, 1-on-1, self-help groups, etc.)
• Blog or post about initiative
• Participate in discussion forums
Join
Ignore
Leadership
iConquerMS Recruitment Pathway
Awareness Curiosity Consideration
Conversion Engagement
• Blogs
• Facebook page and ads
• YouTube
• Direct email
• Ambassadors
• MS events/self-help groups
• Conferences
• Webinars
• Friends
• Advocacy Orgs (NMSS, MSAA, MSF, CanDoMS)
• Health care providers
• Pharma Co. Patient Support
• Search engines
• View mobile microsite
• Read more at portal
• Ask trusted sources
• Email iConquerMS™ with questions
• Sign up for email updates
• Read newsletter
• Read ACP / iConquerMS™ emails
• Like/share Facebook page/Twitter
• Ask trusted sources
• Consent and register
• Fill in health data surveys for longitudinal study REAL MS
• Propose research topics
• Provide feedback on research topics and protocols
• Participate in specific studies
• Serve as Ambassador (events, 1-on-1, self-help groups, etc.)
• Blog or post about initiative
• Participate in discussion forums
Join
Ignore
Leadership
• Participate in Task Forces
• Be appointed to Governance
iConquerMS Recruitment Pathway
For more information about iConquerMS-
Sara LoudAccelerated Cure [email protected]
Conclusion:
Engagement does not guarantee conversion to join
Recruitment is a complex process and results may occur at any point
Understanding the opportunities to reach potential members strengthens our efforts
Q&A
• PCORI’s Methodology Standards PC-1 to PC-4
• PCORI has developed other resources to help guide your engagement activities, housed on the “What We Mean by Engagement” page on the PCORI website
• Engagement Resources include:– Framework for Financial Compensation of Patient, Caregiver
and Patient Organization Stakeholders– Engagement Rubric– Sample Engagement Plans– PCORI Stakeholder Groups– Short Videos on Engagement in Research
Additional Resources
Thank you!