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

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Nov 08, 2023 233 likes •388 views

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

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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

SLIDE 2

What is patient-engaged research (PER)/community-engaged research (CEnR)?

not a single methodology
term coined to capture continuum of possible range
f community involvement in research
research responsive to and rooted in real-world

conditions

SLIDE 3

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

SLIDE 4

Engaged research models

Advisory model Employment model Partner 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

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IMPACT FLOW for ENGAGED RESEARCH: How does engaging patients and communities change

utcomes? *

* 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.

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10 Years of Participatory Action Research with post-9/11 Veterans, Families & Communities

2008 Life Story study with post-9/11 Veterans with PTSD 2009- present collaboration with Warrior Writers and

ther community
rganizations

2016- present Photovoice project Post 9/11 Veterans with TBI and their caregivers 2010-2011 Photovoice project with post 9/11 Veterans 2011- present From War to Home traveling exhibit & development

f new study

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Current Collaborators

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

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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

f knowledge
Diverges from more

traditional research methods in focus on participants as collaborators, shared

wnership of findings,

and forms of dissemination

SLIDE 9

Photovoice Journey

ADAPTED FROM PHOTOVOICE PATH BY L.S. LORENZ, PHD

SLIDE 10

Strengths of methods and approach

(www.va.gov/FromWartoHome)

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

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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

SLIDE 12

Outputs and impacts

SLIDE 13

Questions?

Jennifer.True2@va.gov

Photo by Jennifer V.

SLIDE 14

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