Applying participatory action research in traumatic brain injury studies to prevent post-traumatic epilepsy

For the EpiBioS4Rx Public Engagement Core

Research output: Contribution to journalArticle

Abstract

The increased focus on stakeholder engagement in determining the aims, design, conduct of research and dissemination of results is substantially changing the biomedical research paradigm. In this era of patient-centered care, incorporating participatory action research methodology into large-scale multi-center studies is essential. The adoption of community engagement facilitates meaningful contribution to the design and implementation of clinical studies. Consequently, encouraging citizen participation and involving key organizations may guide the effective development of future clinical research protocols. Here, we discuss our experience in engaging individuals, their caregivers, as well as scientific and consumer organizations in public outreach and knowledge transfer to assist in the development of effective strategies for recruitment and retention in a future post-traumatic epilepsy prevention randomized controlled trial within the National Institute of Neurologic Disorders and Stroke Center Without Walls, Epilepsy Bioinformatics Study for Antiepileptogenic Therapy (EpiBioS4Rx). The study includes a Public Engagement Core with a diverse consortium of stakeholder partners. Based on the Core's ongoing experience, it is recommended that multicenter studies integrate a participatory action research based approach to harness the benefits of a collective inquiry. The blueprint created by the EpiBioS4Rx Public Engagement Core is a resource that could be applied in other areas of biomedical research.

Original languageEnglish (US)
JournalNeurobiology of Disease
DOIs
StateAccepted/In press - Jan 1 2018

Fingerprint

Post-Traumatic Epilepsy
Health Services Research
Biomedical Research
Consumer Organizations
Research Design
Patient-Centered Care
Clinical Protocols
Nervous System Diseases
Computational Biology
Caregivers
Multicenter Studies
Epilepsy
Randomized Controlled Trials
Stroke
Organizations
Traumatic Brain Injury
Therapeutics

Keywords

  • Clinical trials
  • Community engagement
  • Epilepsy
  • Participatory action research
  • Patient reported outcomes
  • Patient-centered outcomes
  • Post-traumatic epilepsy
  • Traumatic brain injury

ASJC Scopus subject areas

  • Neurology

Cite this

Applying participatory action research in traumatic brain injury studies to prevent post-traumatic epilepsy. / For the EpiBioS4Rx Public Engagement Core.

In: Neurobiology of Disease, 01.01.2018.

Research output: Contribution to journalArticle

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