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 Study Question: Is the Community Engagement Studio (CES) model an effective method of obtaining patient-centered input and does the input result in research that is more patient- centered? Assess the effectiveness of the CES in obtaining patient-centered input 1) Develop a taxonomy of changes to research that could be attributed to engagement 2) Develop and validate a quantitative instrument to assess patient-centeredness 3) 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
P ROJECT T EAM INCLUDED 167 S TAKEHOLDERS 167 Stakeholders engaged in study • 2 Stakeholder team members 153 Community Engagement Studio • Experts • 6 Interviewees/evaluators • 12 Abstracts raters
S TAKEHOLDER I NVESTIGATORS : I NTEGRAL T EAM M EMBERS 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
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.
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
ENGAGEMENT IN DEVELOPMENT OF PERSON-CENTEREDNESS OF RESEARCH SCALE Person Centeredness of Research Scale Steps in quantitative instrument development: 1. There is evidence that beliefs relevant to the population of interest are included 1) content and item generation, 2) evaluation of or addressed in the research. item candidates, 3) testing of initial scale, 4) 2. There is evidence that attitudes relevant to the population of interest or to revision of scale, and 5) testing of revised scale. 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 12 abstract reviewers from community and patients/community members in general are included or addressed in the research. academia 4. Person/community-centered goals and/or outcomes are included or addressed in Trained to use scale the research. 5. Research priorities of interest to the patient/community are included or Rated initial and revised scale addressed in the research. Each reviewer scored 20 abstracts 6. The needs and preferences of the patient/ community are included or addressed in the research. Abstracts were from PCORI- funded or a translational science conference 7. Individuals representing patients and/or communities are engaged in the research as stakeholders , advisors, consultants, or team members (beyond serving Abstracts were blindly assigned as research volunteers). 5-point scale: Strongly Disagree, Somewhat Disagree, Neither, Somewhat Agree, Strongly Agree Wilkins, Wallston et al 2017.
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.
ACKNOWLEDGEMENTS: Stakeholder Partners Vanderbilt University Funding Alan Richmond Yvonne Joosten Patient Centered Outcomes Research: ME 1306- Yolanda Vaughn Ken Wallston 03342. Vanderbilt Institute for Clinical and Meharry-Vanderbilt Laurie Novak Translational Research: UL1-TR000445 Alliance Chris Simpson MeharryTranslational Research Center: U54- Consuelo H. Wilkins Tiffany Israel MD007593 Sarah Stallings Leslie Boone Mckenzie Houston Velma Murry Victoria Villalta-Gil Alaina Boyer Meharry Medical College Margaret Hargreaves
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