PROGRAMS AND IMPROVE CARE Academy Health Annual Meeting June 2018 - PowerPoint PPT Presentation

THE PROMISE OF PATIENT AND COMMUNITY ENGAGED RESEARCH TO EVALUATE PROGRAMS AND IMPROVE CARE Academy Health Annual Meeting – June 2018 Gala True, PhD South Central Mental Illness Research, Education, and Clinical Center, Southeast Louisiana Veterans Health Care System Tulane University School of Medicine

What is patient-engaged research (PER)/community-engaged research (CEnR)? • not a single methodology • term coined to capture continuum of possible range of community involvement in research • research responsive to and rooted in real-world conditions

PER/CEnR in health services research: why now? Global efforts to reduce health disparities Translational research Implementation science Recognition that problems and solutions exist within context of individual lives and communities

Engaged research models Advisory Partner model model Employment model Advisory model – - community members play advisory role on steering/advisory committee May consult/assist on recruitment, data collection tools or methods, dissemination • Employment model – community members hired as paid members of research team Includes peer-driven recruitment, peer mentors in research • Partner model – community members are partners or leaders in all aspect of the research Community-academic partnerships, community based participatory research, action • research

IMPACT FLOW for ENGAGED RESEARCH: How does engaging patients and communities change outcomes? * * From Dillon EC, Tuzzio L, Madrid S, Olden H, Greenlee RT. Measuring the impact of patient-engaged research: how a methods workshop identified Critical Outcomes of Research Engagement. J Patient Cent Red Rev. 2017;4:237-46.

10 Years of Participatory Action Research with post-9/11 Veterans, Families & Communities 2010-2011 Photovoice 2016- present 2008 project with Photovoice project post 9/11 Life Story study with Post 9/11 Veterans Veterans post-9/11 Veterans with TBI and their with PTSD caregivers 2009- present 2011- present collaboration with From War to Warrior Writers and Home traveling other community exhibit & organizations development of new study

Current Collaborators Sarah Ono (Co-Investigator and Steering Committee — Site PI) Jeremy Brewer (Veteran) Laurie Cancienne (caregiver) Other Co-Is and partners Lawrence Davidson (Veteran) Helene Moriarty Alex Glover (Veteran) Laraine Winter Belle Landau (caregiver) Laura Lorenz Courtney Lyndrup (caregiver) Meg Kabat (Director, VA Caregiver Support Program) Team — Lisa Perla (Director, National Polytrauma Coordinator) Ray Facundo Nina Sayer (Research Director, John Marmion VA Polytrauma and Blast- Traci Abraham Related Injuries QUERI) Ryan Bernard Our other caregiver and Veteran collaborators

Photovoice: Participatory Action Research • Use of camera allows participants to record, discuss, and communicate their realities • Photograph and description of photograph provide immediate data, foundation for participatory sharing of knowledge • Diverges from more traditional research methods in focus on participants as collaborators, shared ownership of findings, and forms of dissemination

Photovoice Journey A DAPTED FROM P HOTO V OICE P ATH BY L.S. L ORENZ , P H D

Strengths of methods and approach Facilitates sense-making across team members Long-term, sustained engagement of partners Evaluation of current services and identify ways to improve care Partners inform dissemination of findings and development of new interventions and research (www.va.gov/FromWartoHome)

Practical and ethical challenges • How to achieve representativeness and diversity • How to appropriately scale methods/approach to research questions and resources • Control of images and stories – data security, issues of technology • Hidden costs (and benefits) of partnered research

Outputs and impacts

Questions? Jennifer.True2@va.gov Photo by Jennifer V.

Funding & Disclaimer • This work was supported in part by the South Central MIRECC and VA HSR&D IIR 14-399 • The view expressed here are those of the presenters and do not necessarily represent the views of the Department of Veterans Affairs