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 - - 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
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
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
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
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
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.
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.
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