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

NEUROBIOLOGY OF DISEASE

卷:123

Review

Correa, Daniel J.^1,2  Kwon, Churl-Su³  Connors, Susan⁴  Fureman, Brandy⁵  Whittemore, Vicky⁶  Jette, Nathalie³  Mathern, Gary W.^7,8  Moshe, Solomon L.^2,9,10 

[1] Albert Einstein Coll Med, Saul R Korey Dept Neurol, 1410 Pelham Pkwy South,K-312, Bronx, NY 10461 USA

[2] Montefiore Med Ctr, 1410 Pelham Pkwy South,K-312, Bronx, NY 10461 USA

[3] Icahn Sch Med Mt Sinai, Dept Neurol, One Gustave L Levy Pl,Box 1137, New York, NY 10029 USA

[4] Brain Injury Assoc Amer, 1608 Spring Hill Rd 110, Vienna, VA 22182 USA

[5] Epilepsy Fdn, 8301 Profess Pl East,Suite 200, Landover, MD 20785 USA

[6] NINDS, NIH, Bldg 36,Rm 4D04, Bethesda, MD 20892 USA

[7] Univ Calif Los Angeles, David Geffen Sch Med, Dept Neurosurg, Los Angeles, CA 90095 USA

[8] Univ Calif Los Angeles, David Geffen Sch Med, Dept Psychiat & Biobehav Sci, Los Angeles, CA 90095 USA

[9] Albert Einstein Coll Med, Dominick P Purpura Dept Neurosci, Saul R Korey Dept Neurol, 1410 Pelham Pkwy South,K-312, Bronx, NY 10461 USA

[10] Albert Einstein Coll Med, Dept Pediat, 1410 Pelham Pkwy South,K-312, Bronx, NY 10461 USA

关键词: Community engagement;    Participatory action research;    Patient-centered outcomes;    Patient reported outcomes;    Clinical trials;    Traumatic brain injury;    Epilepsy;    Post-traumatic epilepsy;   

DOI  :  10.1016/j.nbd.2018.07.007

来源: Elsevier

【 摘 要 】

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.

【 授权许可】

Free