Background: Traumatic brain injury (TBI) is an invisible wound of war and a signature injury of military troops. About 30 percent of those who served in recent conflicts have suffered a TBI. This can often lead to intellectual disabilities (ID), sometimes called cognitive disabilities, that can profoundly affect veterans’ health and healthcare decisions, thus contributing to unmet healthcare needs. TBI research efforts are often hampered by a dearth of veterans functioning as partners in the research process. This creates an urgent need to bolster patient-centered outcomes research (PCOR) and comparative clinical effectiveness research (CER) in order to identify treatment options for TBI that are effective, acceptable, and meaningful to the veteran population.
Proposed Solution to the Problem: The impact of a TBI on a person and their family can be devastating. Sound treatment options and healthcare decision making requires veterans with TBI and their caregivers to have accurate, up-to-date, understandable information and the decision-making capacity to process that information. Mind Over Matter (MOM) creates a platform that gives veterans with a TBI and their caregivers an active voice in developing a clear pathway for increasing relevance of TBI PCOR/CER and outcomes that are important to them so they can live their healthiest lives.
- Engage veterans with TBI, caregivers, and other stakeholders in PCOR/CER who have a connection to, expertise in, or lived experience related to TBI
- Build competencies and skills of veterans with a TBI to become meaningful partners with researchers in future PCOR/CER from idea to dissemination of results
- Uncover ways veterans with a TBI want to receive healthcare information, how they want research results communicated, and in what mediums in the context of COVID-19
- Develop a MOM Roadmap for Research on TBI
- Evaluate engagement strategies
- Mobilize MOM Units for Think Tank Meetings (TTM) in four states (Ohio, Florida, South Carolina, and Texas) led by a veteran/caregiver and a university-based collaborative academic research member (CARM)
- Adopt PCORI-published Operation PCOR Veteran Training Module
- Develop field note templates for TTM based on the four TBI symptom areas: thinking/remembering, physical, emotional/mood, and sleep, and generate TTM newsletters
- Build relationships with veteran-driven TBI community agencies
- Engage in robust TBI-related PCOR ideas and create CER questions
- Evaluate the project through ongoing formative evaluations
- Produce the MOM Roadmap to Research on TBI with knowledge generated from the project activities and create MOM newsletters for widespread dissemination to the PCOR community
- Prepare a national cadre of veterans/stakeholders as full partners in TBI-related PCOR/CER
Patient and Stakeholder Engagement Plan: MOM members include veterans, caregivers, researchers, clinicians, TBI community advocacy organizations, and other key stakeholders who have a connection to, expertise in, or lived experience related to TBI.
MOM members are engaged in all aspects of the project via virtual or in-person* meetings.
Project Collaborators: MOM team members are affiliated with the University of Texas at Austin; Augusta University; Ohio State University; and the University of South Florida. In addition to veteran TBI consultants (patient partners), clinicians, and researchers, TBI advocacy organizations include the Brain Injury Association of America and Concussion Alliance, in conjunction with the project lead’s health research initiative for veterans, Canines Providing Assistance to Wounded Warriors (C-P.A.W.W.): www.nursing.fau.edu/c-paww. The team’s collaborators create a strong infrastructure, ensuring the connection to PCOR and CER, and builds capacity to join forces with like-minded TBI stakeholders across the country.
*Contingent upon state/federal COVID-19 safety guidelines
More to Explore...
Project Resource: Mind Over Matter Newsletter, Volume 1
Cheryl A. Krause-Parello, BSN,MSN,PHD,RN
Elisa V. Borah, PhD, MSW
Florida Atlantic University
Last updated: September 26, 2023