Sharing Opinions and Advice about Research (SOAR) in the Deep South

Rebecca S. Allen, Ph.D., ABPP, Pamela Payne-Foster, MD, and the Project SOAR TeamThe University of Alabama

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Mechanism

Eugene Washington PCORI Engagement Awards Training and Development Awards. These capacity-building

projects will build a community of patients, caregivers, and other stakeholders equipped to engage in Patient Centered Outcomes Research (PCOR). Training Awards are intended for projects that will equip these individuals, teams, and organizations with the skills necessary to meaningfully participate as partners throughout the research process. Development Awards are intended for projects seeking to develop meaningful patient and other stakeholder relationships, as well as promote new partnerships. They can also stimulate new, innovative, and replicable activities meant to encourage previously unlikely collaborations.

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Project Goal

To develop, train, and maintain Project Advisory Councils for Research in one under-resourced rural (Sumter County in the Alabama Black Belt) and one under-resourced urban community (Holt). Recruit “regular folk” invested in each community and train

them in how to provide useful and directive feedback on research recruitment flyers, surveys/questionnaires, and interventions.

Develop true partnerships with PAC members such that they begin to advise on research questions pertinent in their community.

Train the PAC members in how to maintain revenue for their services and advice.

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The Model: WINRS and CARDS

Barbara Bowers, Ph.D., University of Wisconsin and (at the time) CMHA. Wisconsin Network for Research Support (WINRS). Aka

Betty Kaiser and Gay Thomas. Community Advisors on Research Design

and Strategies (CARDS) since 2010 “Language is biggest thing that separates people. It’s people

like us who read the information and don’t understand what’s being explained. For folks to use us to help communicate is beautiful; it’s the strength of the CARDS.”

“Being in the CARDS makes me feel wanted, like I’m part of something, feel appreciated”

“The topics often affect us or people we know; most of us have been affected with the health issues involved or have family members who have been affected.”

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Progress in Year 1

WINRS trained the Trainers

Creating Partnerships Hill Hospital in York, AL (Sumter Co) 2nd Baptist Church and Community

members in Holt

Recruiting PAC members 7 in Sumter Co 8 in Holt

Training PAC members (6 hours) Sumter May and June Holt August and September

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Hill Hospital Meeting Space inSumter County

SOAR Research and Community Team Members

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Progress in Year 1 (cont.)

2 Regular, 90-min PAC meetings held in Sumter Co to date; next one scheduled for Wed 9-23. Feedback on Training Materials Preparation for Future Care Survey Feedback Dr. Felecia Wood and Diabetes 101 app (9/23)

First 90-min PAC meeting in Holt Tues 10-13 (open!!!) Dr. Ellen Spears scheduled for 11/10

Get Opinions and Advice aboutYour Research!

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Original Material Before PACFeedback

What do you do on the project?

“I’m in a group of community advisors for the project. We meet with researchers to talk about their research plans and materials. We look at things like survey questions or materials for health education programs and help researchers make them better.”

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Examples of PAC Feedback

What do you do on the project?

“I’m in a group of advisors for the project that helps coordinate and network with researchers for our community.

We meet with researchers to talk about their research and then take it back out there to the community.

We look at things like health and transportation needs.

We look at survey questions or materials for health education to tailor these materials and better serve the needs of the Sumter Co. community.

Each year, our PAC receives money from UA (Capstone) to do this. ”

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Our Original Recruitment Flyer

Sumter County (rural site): 73% African American; 25% Non-Hispanic White 14.5% unemployment

Holt (unincorporated urban site): 55% African American; 36% Non-Hispanic White 7% unemployment

What is Project SOAR? We will identify about 8-12 community advisors in each site to form a

Project Advisory Council. We will train these community partners in how to advise academic researchers on the selection of relevant research questions and the development of culturally appropriate measures and interventions. The goal is for these groups to be financially self-sustaining and the hope is to form more groups in Western Alabama.

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What is Project SOAR? Getting advice and opinions about research from people in the

community. “Talking with people like me to see what is important about health in

Western Alabama.” – Sumter PAC member

What is a Project Advisory Counsel (PAC)? The PAC gives members of our community a voice in how research is done in

our part of AL. An advisory and networking body that acts as a resource and asset to

their community, bringing community and research partners together. Each year, the PAC receives partnership funding ($1500) from the UA

(Capstone) to support health and wellness in Sumter County. Each Sumter Co PAC member receives $60 per meeting. Meetings occur

every 6 weeks and last for approximately 90 minutes.

Sumter County Revised Recruitment Flyer

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Original Survey Items BeforePAC Feedback

  Please circle how true each statement is of you.

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Not at all true of me

 2

Not really true of me

 3

Neither true nor untrue

 4

Some-whatTrue of me

 5

Com-pletely true of me

 AW1. I pay close attention to how my physical and mental capabilities are changing to assess whether I may soon need help or care.

 AW2. I pay attention to information in the media on the risks of needing help or care in old age.

 AW3. Talking to other people has made me think about whether I might need help or care in the future.

 AV4. I try not to think about things like future loss of independence.

 AV5. I don’t like to think about the risk of needing help or care in the future.

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Revised Survey Items bySumter County PAC

I pay close attention to how my physical health needs are changing to decide whether I may soon need help or care. Yes Sometimes No

I pay close attention to how my mental health needs are changing to decide whether I may soon need help or care. Yes Sometimes No

I pay close attention to how my spiritual health needs are changing to decide whether I may soon need help or care. Yes Sometimes No

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Revised Survey Items bySumter County PAC

I pay attention to information in the news (like from the newspaper, T.V., radio, facebook, twitter) on the importance of needing help or care as I get older. Yes Sometimes No

Talking to other people has made me think about needing help or care in the future. Yes Sometimes No

I try not to think about things like not being able to take care of myself (like living in a nursing home). Yes Sometimes No

I avoid thinking and talking about things like being taken care of by other family members or living in a nursing home). Yes Sometimes No

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SOAR in Action: Sumter Co PAC

PAC member feedback on training materials and reactions to training: IMG0059.mov (“What works in New York may not work in

York”) IMG0061.mov (“The most boring part about the whole

thing was…”)

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Interactive Examples of PAC Training

Weight Loss Flyer Reactions

Communication Checklist and Self-Evaluation Step up Step back

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Interactive Examples of PAC Training

Research What is it? What is the difference between personal research and

academic research? Research Ethics Timeline

Remember…

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It always seems impossible…Until it is done.

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Thank you!…now pay it forward…