TY - JOUR
T1 - Applying participatory action research in traumatic brain injury studies to prevent post-traumatic epilepsy
AU - For the EpiBioS4Rx Public Engagement Core
AU - Correa, Daniel J.
AU - Kwon, Churl Su
AU - Connors, Susan
AU - Fureman, Brandy
AU - Whittemore, Vicky
AU - Jetté, Nathalie
AU - Mathern, Gary W.
AU - Moshé, Solomon L.
N1 - Publisher Copyright:
© 2018 Elsevier Inc.
PY - 2019/3
Y1 - 2019/3
N2 - 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.
AB - 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.
KW - Clinical trials
KW - Community engagement
KW - Epilepsy
KW - Participatory action research
KW - Patient reported outcomes
KW - Patient-centered outcomes
KW - Post-traumatic epilepsy
KW - Traumatic brain injury
UR - http://www.scopus.com/inward/record.url?scp=85050273919&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85050273919&partnerID=8YFLogxK
U2 - 10.1016/j.nbd.2018.07.007
DO - 10.1016/j.nbd.2018.07.007
M3 - Review article
C2 - 30031158
AN - SCOPUS:85050273919
SN - 0969-9961
VL - 123
SP - 137
EP - 144
JO - Neurobiology of Disease
JF - Neurobiology of Disease
ER -