Better Together: Evolution of patient stakeholder engagement in healthy lifestyle research after acquired brain injury

Research Objectives: To describe the process of partnering with stakeholders in a six-year systematic line of research to modify an evidence-based weight-loss program called the Diabetes Prevention Program Group Lifestyle Balance (DPP-GLB) for individuals with individuals with TBI and stroke. Commentary from two patient stakeholders will be included.

Design: Narrative Review

Setting: Community

Participants: Stakeholders (former patients, care partners, physiatrists, researchers, therapists, neuropsychologists, exercise specialists, dietitians, community partners, and DPP-GLB coaches).

Interventions: Not applicable

Main Outcome Measures: Not applicable

Results: The DPP-GLB modification process involved three phases: (1) engaging stakeholders to identify appropriate adaptations to the DPP-GLB, (2) making relevant modifications to create the GLB-CVA and GLB-TBI, and (3) obtaining approval from the stakeholders that modifications accurately reflect their recommendations. Engagement was sustained through (1) piloting research surveys, (2) providing guidance on eligibility criteria and outcome assessments, (3) testing mobile applications, (4) reviewing factsheets for usability, (5) attending quarterly meetings, and (6) informing future grant applications.

Conclusions: Stakeholder perspectives have been critically important to ensuring study goals and project activities are meaningful and patient-centered. Our stakeholders helped create a more health literate (e.g., factsheets, modified curriculum), patient-centered (e.g., including peer mentors and care partners), and meaningful program for people with TBI and stroke, which would not have been possible with our research team alone.

Author(s) Disclosures: he contents of this abstract were developed under two grants from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR grant numbers 90DPTB0013 and 90IFRE0021). NIDILRR is a center within the Administration for Community Living (ACL), Department of Health and Human Services (HHS). The contents of this abstract do not necessarily represent the policy of NIDILRR, ACL, HHS, and you should not assume endorsement by the Federal Government.