TY - JOUR
T1 - Development and implementation of a community-based research network
AU - Minor, Brittany C.
AU - Dashner, Jessica
AU - Espín Tello, Sandra M.
AU - Bollinger, Rebecca
AU - Keglovits, Marian
AU - Stowe, James
AU - Campbell, Margaret
AU - Stark, Susan L.
N1 - Funding Information:
Acknowledgements. Funding for this research was supported by a grant from the National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR grant number 90DPCP0001) (SS, BM, MK, MD, MC, JD, SET). NIDILRR is a Center within the Administration for Community Living (ACL), Department of Health and Human Services (HHS). The contents of this manuscript do not necessarily represent the policy of NIDILRR, ACL, or HHS, and endorsement by the federal government should not be assumed. Research reported in this publication was also supported by the Washington University Institute of Clinical and Translational Sciences (grant UL1TR002345) (SS, BM) from the National Center for Advancing Translational Sciences (NCATS) of the National Institutes of Health (NIH). The content is solely the responsibility of the authors and does not necessarily represent the official view of the NIH. The authors do not have any conflicts of interest to disclose.
Publisher Copyright:
© 2020 Cambridge University Press. All rights reserved.
PY - 2020
Y1 - 2020
N2 - Abstract Introduction: People aging with long-Term physical disabilities (PAwLTPD), meaning individuals with onset of disability from birth through midlife, often require long-Term support services (LTSS) to remain independence. The LTSS system is fragmented into aging and disability organizations with little communication between them. In addition, there are currently no evidence-based LTSS-Type programs listed on the Administration for Community Living website that have been demonstrated to be effective for PAwLTPD. Because of these gaps, we have developed a community-based research network (CBRN), drawing on the practice-based research network model (PBRN), to bring together aging and disability organizations to address the lack of evidence-based programs for PAwLTPD. Materials and Methods: Community-based organizations serving PAwLTPD across the state of Missouri were recruited to join the CBRN. A formative process evaluation of the network was conducted after a year to evaluate the effectiveness of the network. Results: Nine community-based organizations across the state of Missouri joined the CBRN. CBRN members include three centers for independent living (CILs), three area agencies on aging (AAAs), one CIL/AAA hybrid, one non-CIL disability organization, and one non-AAA aging organization. To date, we have held seven meetings, provided educational opportunities for CBRN members, and launched an inaugural research study within the CBRN. Formative evaluation data indicate that CBRN members feel that participation in the CBRN is beneficial. Conclusion: The PBRN model appears to be a feasible framework for use with community-based organizations to facilitate communication between agencies and to support research aimed at addressing the needs of PAwLTPD.
AB - Abstract Introduction: People aging with long-Term physical disabilities (PAwLTPD), meaning individuals with onset of disability from birth through midlife, often require long-Term support services (LTSS) to remain independence. The LTSS system is fragmented into aging and disability organizations with little communication between them. In addition, there are currently no evidence-based LTSS-Type programs listed on the Administration for Community Living website that have been demonstrated to be effective for PAwLTPD. Because of these gaps, we have developed a community-based research network (CBRN), drawing on the practice-based research network model (PBRN), to bring together aging and disability organizations to address the lack of evidence-based programs for PAwLTPD. Materials and Methods: Community-based organizations serving PAwLTPD across the state of Missouri were recruited to join the CBRN. A formative process evaluation of the network was conducted after a year to evaluate the effectiveness of the network. Results: Nine community-based organizations across the state of Missouri joined the CBRN. CBRN members include three centers for independent living (CILs), three area agencies on aging (AAAs), one CIL/AAA hybrid, one non-CIL disability organization, and one non-AAA aging organization. To date, we have held seven meetings, provided educational opportunities for CBRN members, and launched an inaugural research study within the CBRN. Formative evaluation data indicate that CBRN members feel that participation in the CBRN is beneficial. Conclusion: The PBRN model appears to be a feasible framework for use with community-based organizations to facilitate communication between agencies and to support research aimed at addressing the needs of PAwLTPD.
KW - aging
KW - Community partnerships
KW - community-based
KW - disability
KW - PBRN
UR - http://www.scopus.com/inward/record.url?scp=85106948768&partnerID=8YFLogxK
U2 - 10.1017/cts.2020.45
DO - 10.1017/cts.2020.45
M3 - Article
C2 - 33948227
AN - SCOPUS:85106948768
SN - 2059-8661
VL - 4
SP - 508
EP - 514
JO - Journal of Clinical and Translational Science
JF - Journal of Clinical and Translational Science
IS - 6
ER -