I MPROVING THE P ERSON -C ENTEREDNESS OF R ESEARCH : S TAKEHOLDER E - - PowerPoint PPT Presentation

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I MPROVING THE P ERSON -C ENTEREDNESS OF R ESEARCH : S TAKEHOLDER E - - PowerPoint PPT Presentation

I MPROVING THE P ERSON -C ENTEREDNESS OF R ESEARCH : S TAKEHOLDER E NGAGEMENT IN A PCORI M ETHODS A WARD Consuelo H. Wilkins, MD, MSCI @DrCHWilkins Alan Richmond, MSW @CCPH_News IMPROVING PATIENT ENGAGEMENT AND UNDERSTANDING ITS IMPACT ON RESEARCH


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IMPROVING THE PERSON-CENTEREDNESS OF RESEARCH: STAKEHOLDER ENGAGEMENT IN A PCORI METHODS AWARD

Consuelo H. Wilkins, MD, MSCI @DrCHWilkins Alan Richmond, MSW @CCPH_News

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Study Question: Is the Community Engagement Studio (CES) model an effective method of

  • btaining patient-centered input and does the input result in research that is more patient-

centered?

1)

Assess the effectiveness of the CES in obtaining patient-centered input

2)

Develop a taxonomy of changes to research that could be attributed to engagement

3)

Develop and validate a quantitative instrument to assess patient-centeredness

T eam: Consuelo H. Wilkins (PI), Yvonne Joosten, Tiffany Israel, Yolanda Vaughn, Al Richmond, Margaret Hargreaves, Velma Murry, Laurie Novak, Chris Simpson, Leslie Boone, Ken Wallston, Mckenzie Houston, Sarah Stallings, Alaina Boyer

IMPROVING PATIENT ENGAGEMENT AND UNDERSTANDING ITS IMPACT ON RESEARCH

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PROJECT TEAM INCLUDED 167 STAKEHOLDERS

167 Stakeholders engaged in study

  • 2 Stakeholder team members
  • 153 Community Engagement Studio

Experts

  • 6 Interviewees/evaluators
  • 12 Abstracts raters
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STAKEHOLDER INVESTIGATORS: INTEGRAL TEAM MEMBERS

Two Stakeholder Investigators: Al Richmond and Yolanda Vaughn

 Involved in all stages of project: design, planning, implementation and dissemination  Participated in team meetings, voice had equal weight as researchers  Interviewed researchers in creating of assessment tool  Qualitative Analysis: coding of transcripts

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COMMUNITY ENGAGEMENT STUDIOS AND STAKEHOLDER EXPERTS

Community Engagement Studios

 Consultative model of engagement  Stakeholders are experts not research participants  Expert panel selected based on project  Researcher prep prior to meeting  Focus 2 to 3 main questions

In this study, 153 stakeholders provided feedback via CE Studios for 20 different research projects

 Stakeholders included African Americans with kidney

disease, ICU survivors and caregivers, middle-aged people with Parkinson’s disease, Latinos/Hispanics at risk of diabetes, people with chronic pain

Joosten, Israel, Williams, Boone, Schlundt, Mouton, Dittus, Bernard, Wilkins. (2015). Community Engagement Studios: A Structured Approach to Obtaining Meaningful Input from Stakeholders to Inform Research. Academic Medicine. 2015 Dec; 90(12): 1646–1650.

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STAKEHOLDER ENGAGEMENT IN QUALITATIVE ANALYSIS

T wo Stakeholder Investigators: Trained in qualitative analysis; coded select transcripts Six Stakeholders: Reviewed taxonomy and codebook; provided input to improve

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ENGAGEMENT IN DEVELOPMENT OF PERSON-CENTEREDNESS OF RESEARCH SCALE

Steps in quantitative instrument development: 1) content and item generation, 2) evaluation of item candidates, 3) testing of initial scale, 4) revision of scale, and 5) testing of revised scale.

12 abstract reviewers from community and academia

Trained to use scale

Rated initial and revised scale

Each reviewer scored 20 abstracts

Abstracts were from PCORI- funded or a translational science conference

Abstracts were blindly assigned

Person Centeredness of Research Scale

  • 1. There is evidence that beliefs relevant to the population of interest are included
  • r addressed in the research.
  • 2. There is evidence that attitudes relevant to the population of interest or to

patients/community members in general are included or addressed in the research.

  • 3. There is evidence that concerns relevant to the population of interest or to

patients/community members in general are included or addressed in the research.

  • 4. Person/community-centered goals and/or outcomes are included or addressed in

the research.

  • 5. Research priorities of interest to the patient/community are included or

addressed in the research.

  • 6. The needs and preferences of the patient/ community are included or addressed

in the research.

  • 7. Individuals representing patients and/or communities are engaged in the

research as stakeholders, advisors, consultants, or team members (beyond serving as research volunteers).

5-point scale: Strongly Disagree, Somewhat Disagree, Neither, Somewhat Agree, Strongly Agree Wilkins, Wallston et al 2017.

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IMPACT OF STAKEHOLDER ENGAGEMENT ON PROJECT

 Stakeholder Investigators: Invaluable direction on engaging full range of stakeholders, helped

disseminate research findings to stakeholders nationally and locally

 Community Engagement Studio Experts: Generated content for analysis, provided project-

specific advice to 20 different researchers

 Qualitative Taxonomy and Analysis: Added two new areas to taxonomy: process

improvement and engagement; brought stakeholder perspectives to coding and interpretation

 Quantitative Scale Development: Produced scale that can be used by non-researchers; No

difference in scoring when comparing stakeholder ratings to academic.

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Stakeholder Partners

Alan Richmond

Yolanda Vaughn

Meharry-Vanderbilt Alliance

Consuelo H. Wilkins

Sarah Stallings

Mckenzie Houston

Victoria Villalta-Gil

Alaina Boyer

Meharry Medical College

Margaret Hargreaves

Vanderbilt University

Yvonne Joosten

Ken Wallston

Laurie Novak

Chris Simpson

Tiffany Israel

Leslie Boone

Velma Murry

ACKNOWLEDGEMENTS:

Funding

Patient Centered Outcomes Research: ME 1306- 03342.

Vanderbilt Institute for Clinical and Translational Research: UL1-TR000445

MeharryTranslational Research Center: U54- MD007593