Patient Centered Research on TBI Psychiatric Problems

The overarching goal of our project funded by the Patient-Centered Outcomes Research Institute (PCORI) was to establish a diverse group of TBI stakeholders and engage them in focus group discussions to:

(1) determine catalysts and challenges in the management of neuropsychiatric symptoms after TBI,

(2) identify various strategies for engaging TBI stakeholders in future research projects and creating a PCOR network

(3) list important TBI neuropsychiatry research topics, and

​(4) determine important policy changes related to neuropsychiatric symptoms after TBI.
In 2018, researchers from Johns Hopkins University in collaboration with the Brain Injury Association of Maryland brought together a diverse group of TBI (Traumatic Brain Injury) stakeholders. They included people with TBI, caregivers involved in the care of people with TBI, non-physician clinicians (such as occupational therapists, physical therapists, speech language therapists, mental health therapists), program coordinators and mental health administrators to discuss TBI mental health research.  The project was funded by Patient-Centered Outcomes Research Institute (PCORI) JUU #7136

Let's Talk About TBI

​The purpose of the discussions was to help shape patient-centered research and policies to better meet the mental health needs of individuals with TBI and their families. The discussion was guided by four main questions.

Maintaining a TBI
​PCOR Network

The TBI PCOR Network would focus on neuropsychiatric treatment outcomes, research and policy changes  that matter most to  persons with TBI. Network members would also include other stakeholders such as caregivers, clinicians, researchers, clinic coordinators, administrators and payers.
 
What are the strategies that can keep a TBI stakeholder group active and invested in TBI mental health care so that patient centered research can continue?

Needed Policy Changes

What are the important and needed policy changes that can be done
to improve TBI mental health care in the US? 

What Brain Injury and Neuropsychiatric Issues should be studied next? 

What are the important and needed brain injury and neuropsychiatry issues that need to be researched
to improve TBI mental health care in the US? 

Associations work with PCORI Researchers

The Brain Injury Associations of America's member magazine, The Challenge!, published a two page spread on the work done by the Brain Injury Association of Maryland and Johns Hopkins researchers on the TBI PCOR Network.
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You'll find the article on Pages 24-25.