PCORI Engagement Webinar: Leveraging Patient and Stakeholder - - PowerPoint PPT Presentation

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, MPA Engagement Officer, PCORI Sunbo Igho-Osagie, MHSA, PMP, CSSGB Program 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
• utcomes 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 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

Jan Vasquez, MPH CHES Lisa Goldman Rosas, PhD MPH Randall Stafford, MD PhD Community Engagement & Study Recruitment Pathways to American Indian & Alaska Native Wellness

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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 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 history
• 2. Developing community advisory board
• 3. Creating partnership agreements
• 4. Co-learning for establishing trust
• 5. 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 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
• verlap and differ
• Commitment from researchers and

community members to work towards each

• ther’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!

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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

• f 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

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

• 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

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

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

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

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

Awareness Curiosity Consideratio n 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

For more information about iConquerMS- Sara Loud Accelerated Cure Project sloud@acceleratedcure.org

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!

www.pcori.org info@pcori.org