Applying participatory action research in traumatic brain injury studies to prevent post-traumatic epilepsy
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 m...
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| Format: | Article |
| Language: | English |
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Elsevier
2019-03-01
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| Series: | Neurobiology of Disease |
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| Online Access: | http://www.sciencedirect.com/science/article/pii/S0969996118302122 |
| _version_ | 1818623782533726208 |
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| author | Daniel J. Correa Churl-Su Kwon Susan Connors Brandy Fureman Vicky Whittemore Nathalie Jetté Gary W. Mathern Solomon L. Moshé |
| author_facet | Daniel J. Correa Churl-Su Kwon Susan Connors Brandy Fureman Vicky Whittemore Nathalie Jetté Gary W. Mathern Solomon L. Moshé |
| author_sort | Daniel J. Correa |
| collection | DOAJ |
| description | 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. |
| first_indexed | 2024-12-16T18:46:32Z |
| format | Article |
| id | doaj.art-bb3ca4749c8e4db7a56242d833fed485 |
| institution | Directory Open Access Journal |
| issn | 1095-953X |
| language | English |
| last_indexed | 2024-12-16T18:46:32Z |
| publishDate | 2019-03-01 |
| publisher | Elsevier |
| record_format | Article |
| series | Neurobiology of Disease |
| spelling | doaj.art-bb3ca4749c8e4db7a56242d833fed4852022-12-21T22:20:49ZengElsevierNeurobiology of Disease1095-953X2019-03-01123137144Applying participatory action research in traumatic brain injury studies to prevent post-traumatic epilepsyDaniel J. Correa0Churl-Su Kwon1Susan Connors2Brandy Fureman3Vicky Whittemore4Nathalie Jetté5Gary W. Mathern6Solomon L. Moshé7Saul R. Korey Department of Neurology, Albert Einstein College of Medicine and Montefiore Medical Center, 1410 Pelham Parkway South, K-312, Bronx, NY 10461, USA; Corresponding author.Department of Neurology, Icahn School of Medicine at Mount Sinai, One Gustave L. Levy Place, Box 1137, New York, NY 10029, USABrain Injury Association of America, 1608 Spring Hill Rd # 110, Vienna, VA 22182, USAEpilepsy Foundation, 8301 Professional Place East Suite 200, Landover, MD 20785, USANational Institute of Neurological Disorders and Stroke, National Institutes of Health, Bethesda, MD, USADepartment of Neurology, Icahn School of Medicine at Mount Sinai, One Gustave L. Levy Place, Box 1137, New York, NY 10029, USADepartments of Neurosurgery and Psychiatry & BioBehavioral Sciences; David Geffen School of Medicine; University of California, Los Angeles, CA, USASaul R. Korey Department of Neurology, Dominick P. Purpura Department of Neuroscience and Department of Pediatrics, Albert Einstein College of Medicine and Montefiore Medical Center, 1410 Pelham Parkway South, K-312, Bronx, NY 10461, USAThe 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.http://www.sciencedirect.com/science/article/pii/S0969996118302122Community engagementParticipatory action researchPatient-centered outcomesPatient reported outcomesClinical trialsTraumatic brain injury |
| spellingShingle | Daniel J. Correa Churl-Su Kwon Susan Connors Brandy Fureman Vicky Whittemore Nathalie Jetté Gary W. Mathern Solomon L. Moshé Applying participatory action research in traumatic brain injury studies to prevent post-traumatic epilepsy Neurobiology of Disease Community engagement Participatory action research Patient-centered outcomes Patient reported outcomes Clinical trials Traumatic brain injury |
| title | Applying participatory action research in traumatic brain injury studies to prevent post-traumatic epilepsy |
| title_full | Applying participatory action research in traumatic brain injury studies to prevent post-traumatic epilepsy |
| title_fullStr | Applying participatory action research in traumatic brain injury studies to prevent post-traumatic epilepsy |
| title_full_unstemmed | Applying participatory action research in traumatic brain injury studies to prevent post-traumatic epilepsy |
| title_short | Applying participatory action research in traumatic brain injury studies to prevent post-traumatic epilepsy |
| title_sort | applying participatory action research in traumatic brain injury studies to prevent post traumatic epilepsy |
| topic | Community engagement Participatory action research Patient-centered outcomes Patient reported outcomes Clinical trials Traumatic brain injury |
| url | http://www.sciencedirect.com/science/article/pii/S0969996118302122 |
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