PCORI Engagement Webinar: Leveraging Patient and Stakeholder Engagement to Facilitate Study and Research Network Recruitment: Stories of Impact from PCORI Funded Projects October 25 th , 2016 12:00-1:00 PM EST
Jaye Bea Smalley, MPA Sunbo Igho-Osagie, MHSA, PMP, CSSGB Engagement Officer, PCORI Program Associate, PCORI
Agenda/Ground Rules • 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!
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… What we mean by… “Patient-centeredness” • 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 and stakeholder engagement” • 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
The PCORI Approach to Engagement-Our Engagement Rubric
Learning Objectives for Today’s Webinar 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.
A Patient-Centered Strategy for Improving Diabetes Prevention in Urban American Indians Randall Stafford, MD, MS, PhD Professor of Medicine Director, Program on Prevention Outcomes and Practices Principal Investigator Lisa Goldman Rosas, PhD, MPH Assistant Scientist Palo Alto Medical Foundation Research Institute & Consulting Assistant Professor, Department of Medicine Standford University Jan J. Vasquez, MPH, CHES Research Director Pathways to American Indian & Alaska Native Wellness
The Multiple Sclerosis Patient-Powered Research Network, iConquerMS™ Sara Loud Chief Operating Officer Accelerated Cure Project Laura Kolaczkowski, BA Co-PI MS-PPRN and Lead Patient Representative
Community Engagement & Study Recruitment Pathways to American Indian & Alaska Native Wellness Jan Vasquez, MPH CHES Lisa Goldman Rosas, PhD MPH Randall Stafford, MD PhD 10
Pathway 1. 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 AIAN adults are twice as likely to be Natives (AIAN) diagnosed with diabetes compared to non-Hispanic whites Historical trauma identified by the community as leading to diabetes Rural and hindering prevention efforts Urban 12
PAAW Partnership Development 1. Background and history 2. Developing community advisory board 3. Creating partnership agreements 4. Co-learning for establishing trust 5. Building capacity in research and cultural competence 13
PAAW & the American Indian Community Action Board 14
PAAW Engagement Structure 15
PAAW Study Design Standard DPP 204 adults: Follow-up of 12 • • Self-identified indigenous to months the Americas Dual outcomes: BMI, • • BMI 30+ quality of life (SF-12) • +1 non-weight related criteria of metabolic Enhanced DPP syndrome Enhanced DPP 16 week behavioral lifestyle • intervention + enhancements: – Talking circles – Photovoice – Digital storytelling – Mental health support – -Cultural retreat 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 16 RS. Contemporary Clinical Trials. 2016
PAAW trial recruitment 17
PAAW trial progress Characteristic 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± 6.7 18
Engagement to support successful recruitment 1. Staffing 2. Goal alignment 3. Diverse outreach 4. Weekly + tracking and monitoring 5. Incentives 6. 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 • 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 26
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 P Patient an and St Stak akeholder E Engagement t to Fac acilitate St Study and R and Research N Network R Recruitment: Stories es o of Impact pact from P PCORI RI F Fund nded P ed Project ects Presenters: Sara Loud, COO, Accelerated Cure Project Project Manager, iConquerMS™ Laura Kolaczkowski, Lead Patient Co-Principal Investigator, iConquerMS™
iConquerMS™ is the MS PPRN = Multiple Sclerosis Patient Powered Research Network
The he iConqu quer erMS™ E Eng ngagem emen ent P 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
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