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October 25 th , 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

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Page 1: PCORI Engagement Webinar: Leveraging Patient and Stakeholder Engagement … · 2016-12-01 · patient and stakeholder engagement in research • Introductions and presentations from

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

Page 2: PCORI Engagement Webinar: Leveraging Patient and Stakeholder Engagement … · 2016-12-01 · patient and stakeholder engagement in research • Introductions and presentations from

Jaye Bea Smalley, MPAEngagement Officer, PCORI

Sunbo Igho-Osagie, MHSA, PMP, CSSGBProgram Associate, PCORI

Page 3: PCORI Engagement Webinar: Leveraging Patient and Stakeholder Engagement … · 2016-12-01 · patient and stakeholder engagement in research • Introductions and presentations from

• 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

Page 4: PCORI Engagement Webinar: Leveraging Patient and Stakeholder Engagement … · 2016-12-01 · patient and stakeholder engagement in research • Introductions and presentations from

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

Page 5: PCORI Engagement Webinar: Leveraging Patient and Stakeholder Engagement … · 2016-12-01 · patient and stakeholder engagement in research • Introductions and presentations from

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”

Page 6: PCORI Engagement Webinar: Leveraging Patient and Stakeholder Engagement … · 2016-12-01 · patient and stakeholder engagement in research • Introductions and presentations from

The PCORI Approach to Engagement-Our Engagement Rubric

Page 7: PCORI Engagement Webinar: Leveraging Patient and Stakeholder Engagement … · 2016-12-01 · patient and stakeholder engagement in research • Introductions and presentations from

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

Page 8: PCORI Engagement Webinar: Leveraging Patient and Stakeholder Engagement … · 2016-12-01 · patient and stakeholder engagement in research • Introductions and presentations from

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

Page 9: PCORI Engagement Webinar: Leveraging Patient and Stakeholder Engagement … · 2016-12-01 · patient and stakeholder engagement in research • Introductions and presentations from

The Multiple Sclerosis Patient-Powered Research Network, iConquerMS™

Sara LoudChief Operating OfficerAccelerated Cure Project

Laura Kolaczkowski, BACo-PI MS-PPRN and Lead Patient Representative

Page 10: PCORI Engagement Webinar: Leveraging Patient and Stakeholder Engagement … · 2016-12-01 · patient and stakeholder engagement in research • Introductions and presentations from

Jan Vasquez, MPH CHESLisa Goldman Rosas, PhD MPH

Randall Stafford, MD PhD

Community Engagement & Study RecruitmentPathways to American Indian &

Alaska Native Wellness

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Page 11: PCORI Engagement Webinar: Leveraging Patient and Stakeholder Engagement … · 2016-12-01 · patient and stakeholder engagement in research • Introductions and presentations from

Pathway1. Background

2. Partnership development

3. Successful engagement strategies for recruitment

4. Unsuccessful strategies

5. Lessons learned

Page 12: PCORI Engagement Webinar: Leveraging Patient and Stakeholder Engagement … · 2016-12-01 · patient and stakeholder engagement in research • Introductions and presentations from

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

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Page 13: PCORI Engagement Webinar: Leveraging Patient and Stakeholder Engagement … · 2016-12-01 · patient and stakeholder engagement in research • Introductions and presentations from

PAAW Partnership Development

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1. Background and history2. Developing community advisory board3. Creating partnership agreements4. Co-learning for establishing trust5. Building capacity in research and cultural

competence

Page 14: PCORI Engagement Webinar: Leveraging Patient and Stakeholder Engagement … · 2016-12-01 · patient and stakeholder engagement in research • Introductions and presentations from

PAAW & the American Indian Community Action Board

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Page 15: PCORI Engagement Webinar: Leveraging Patient and Stakeholder Engagement … · 2016-12-01 · patient and stakeholder engagement in research • Introductions and presentations from

PAAW Engagement Structure

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Page 16: PCORI Engagement Webinar: Leveraging Patient and Stakeholder Engagement … · 2016-12-01 · patient and stakeholder engagement in research • Introductions and presentations from

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

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Page 17: PCORI Engagement Webinar: Leveraging Patient and Stakeholder Engagement … · 2016-12-01 · patient and stakeholder engagement in research • Introductions and presentations from

PAAW trial recruitment

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Page 18: PCORI Engagement Webinar: Leveraging Patient and Stakeholder Engagement … · 2016-12-01 · patient and stakeholder engagement in research • Introductions and presentations from

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

Page 19: PCORI Engagement Webinar: Leveraging Patient and Stakeholder Engagement … · 2016-12-01 · patient and stakeholder engagement in research • Introductions and presentations from

Engagement to support successful recruitment

1. Staffing2. Goal alignment3. Diverse outreach 4. Weekly + tracking and monitoring5. Incentives6. Fun & ceremony

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Page 20: PCORI Engagement Webinar: Leveraging Patient and Stakeholder Engagement … · 2016-12-01 · patient and stakeholder engagement in research • Introductions and presentations from

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

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Page 21: PCORI Engagement Webinar: Leveraging Patient and Stakeholder Engagement … · 2016-12-01 · patient and stakeholder engagement in research • Introductions and presentations from

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

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Page 22: PCORI Engagement Webinar: Leveraging Patient and Stakeholder Engagement … · 2016-12-01 · patient and stakeholder engagement in research • Introductions and presentations from

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

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Page 23: PCORI Engagement Webinar: Leveraging Patient and Stakeholder Engagement … · 2016-12-01 · patient and stakeholder engagement in research • Introductions and presentations from

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

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Page 24: PCORI Engagement Webinar: Leveraging Patient and Stakeholder Engagement … · 2016-12-01 · patient and stakeholder engagement in research • Introductions and presentations from

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)

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Page 25: PCORI Engagement Webinar: Leveraging Patient and Stakeholder Engagement … · 2016-12-01 · patient and stakeholder engagement in research • Introductions and presentations from

Successful Engagement Strategies: Fun & Ceremony

• Natives on the Move• Community Dinners

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Page 26: PCORI Engagement Webinar: Leveraging Patient and Stakeholder Engagement … · 2016-12-01 · patient and stakeholder engagement in research • Introductions and presentations from

Unsuccessful Strategies

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• 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

Page 27: PCORI Engagement Webinar: Leveraging Patient and Stakeholder Engagement … · 2016-12-01 · patient and stakeholder engagement in research • Introductions and presentations from

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!

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Page 28: PCORI Engagement Webinar: Leveraging Patient and Stakeholder Engagement … · 2016-12-01 · patient and stakeholder engagement in research • Introductions and presentations from

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™

Page 29: PCORI Engagement Webinar: Leveraging Patient and Stakeholder Engagement … · 2016-12-01 · patient and stakeholder engagement in research • Introductions and presentations from

iConquerMS™ is the MS PPRN = Multiple Sclerosis Patient Powered Research Network

Page 30: PCORI Engagement Webinar: Leveraging Patient and Stakeholder Engagement … · 2016-12-01 · patient and stakeholder engagement in research • Introductions and presentations from

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

Page 31: PCORI Engagement Webinar: Leveraging Patient and Stakeholder Engagement … · 2016-12-01 · patient and stakeholder engagement in research • Introductions and presentations from

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

Page 32: PCORI Engagement Webinar: Leveraging Patient and Stakeholder Engagement … · 2016-12-01 · patient and stakeholder engagement in research • Introductions and presentations from

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?

Page 33: PCORI Engagement Webinar: Leveraging Patient and Stakeholder Engagement … · 2016-12-01 · patient and stakeholder engagement in research • Introductions and presentations from

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

Page 34: PCORI Engagement Webinar: Leveraging Patient and Stakeholder Engagement … · 2016-12-01 · patient and stakeholder engagement in research • Introductions and presentations from

Awareness Curiosity Consideration Conversion Engagement

Ignore

Leadership

iConquerMS Recruitment Pathway

Page 35: PCORI Engagement Webinar: Leveraging Patient and Stakeholder Engagement … · 2016-12-01 · patient and stakeholder engagement in research • Introductions and presentations from

Awareness Curiosity Consideration Conversion Engagement

• Blogs

• Facebook page and ads

• Twitter

• 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

Page 36: PCORI Engagement Webinar: Leveraging Patient and Stakeholder Engagement … · 2016-12-01 · patient and stakeholder engagement in research • Introductions and presentations from

Awareness Curiosity Consideration Conversion Engagement

• Blogs

• Facebook page and ads

• Twitter

• 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

Page 37: PCORI Engagement Webinar: Leveraging Patient and Stakeholder Engagement … · 2016-12-01 · patient and stakeholder engagement in research • Introductions and presentations from

Awareness Curiosity Consideration Conversion Engagement

• Blogs

• Facebook page and ads

• Twitter

• 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

Page 38: PCORI Engagement Webinar: Leveraging Patient and Stakeholder Engagement … · 2016-12-01 · patient and stakeholder engagement in research • Introductions and presentations from

Awareness Curiosity Consideration Conversion Engagement

• Blogs

• Facebook page and ads

• Twitter

• 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

Page 39: PCORI Engagement Webinar: Leveraging Patient and Stakeholder Engagement … · 2016-12-01 · patient and stakeholder engagement in research • Introductions and presentations from

Awareness Curiosity Consideration Conversion Engagement

• Blogs

• Facebook page and ads

• Twitter

• 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

Page 40: PCORI Engagement Webinar: Leveraging Patient and Stakeholder Engagement … · 2016-12-01 · patient and stakeholder engagement in research • Introductions and presentations from

Awareness Curiosity Consideration

Conversion Engagement

• Blogs

• Facebook page and ads

• Twitter

• 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

Page 41: PCORI Engagement Webinar: Leveraging Patient and Stakeholder Engagement … · 2016-12-01 · patient and stakeholder engagement in research • Introductions and presentations from

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

Page 42: PCORI Engagement Webinar: Leveraging Patient and Stakeholder Engagement … · 2016-12-01 · patient and stakeholder engagement in research • Introductions and presentations from

Q&A

Page 43: PCORI Engagement Webinar: Leveraging Patient and Stakeholder Engagement … · 2016-12-01 · patient and stakeholder engagement in research • Introductions and presentations from
Page 44: PCORI Engagement Webinar: Leveraging Patient and Stakeholder Engagement … · 2016-12-01 · patient and stakeholder engagement in research • Introductions and presentations from

• 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

Page 45: PCORI Engagement Webinar: Leveraging Patient and Stakeholder Engagement … · 2016-12-01 · patient and stakeholder engagement in research • Introductions and presentations from

Thank you!

[email protected]