A case study of using community-based consensus methods to facilitate shared decision-making among a spinal cord injury network
Spinal cord injury (SCI) research and policy decisions are rarely made in partnership with people with SCI, making them less relevant, applicable, and used by those whom the decisions are intended to support. Across disciplines, consensus methods have been promoted as a viable solution for supportin...
| Main Authors: | , , , |
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| Format: | Article |
| Language: | English |
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Frontiers Media S.A.
2024-02-01
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| Series: | Frontiers in Rehabilitation Sciences |
| Subjects: | |
| Online Access: | https://www.frontiersin.org/articles/10.3389/fresc.2024.1335467/full |
| _version_ | 1797305195357536256 |
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| author | Emily E. Giroux Emily E. Giroux Peter Athanasopoulos Shane N. Sweet Heather L. Gainforth Heather L. Gainforth |
| author_facet | Emily E. Giroux Emily E. Giroux Peter Athanasopoulos Shane N. Sweet Heather L. Gainforth Heather L. Gainforth |
| author_sort | Emily E. Giroux |
| collection | DOAJ |
| description | Spinal cord injury (SCI) research and policy decisions are rarely made in partnership with people with SCI, making them less relevant, applicable, and used by those whom the decisions are intended to support. Across disciplines, consensus methods have been promoted as a viable solution for supporting shared research and policy-based decision-making. In this paper, we describe a partnered approach between academic researchers and the Ontario SCI Alliance, a non-profit, SCI community mobilization network to co-develop and co-disseminate a community-based consensus exercise. The community-based consensus exercise included two modified Delphi surveys and one in-person retreat. The partnership's goal with this exercise was to facilitate shared decision-making for the development of their upcoming strategic plan. We then interviewed partners and participants from the Delphi and in-person retreat to discuss successes, challenges, and lessons learned from the exercise. Survey 1 was disseminated to over 2,500 members of the Ontario SCI community and received 374 responses (276 coming from people with SCI). Survey 2 had 118 responses, with 87 coming from people with SCI. The retreat had 73 attendees, including people with SCI, family/friends of people with SCI, clinicians, researchers, and SCI community and research organization staff/volunteers. The retreat included a presentation of the survey results, a clinician/researcher panel, and externally-facilitated working groups. All survey responses and retreat materials were synthesized. Using the synthesized feedback, the Ontario SCI Alliance was able to implement several changes for the Ontario SCI community, including higher-quality primary care experiences (reduced wait times, more accessible examining rooms), the development of a wound care strategy with the Ontario government, and an advocacy campaign for public coverage for catheters and urinary care supplies. From the five interviews conducted, five themes were co-constructed regarding the successes, challenges, and lessons learned from the exercise: (1) Inclusion, Diversity, Equity, and Accessibility; (2) Partnership; (3) Design Considerations; (4) Transparency and Clarity in Communication; and (5) Sustainability. Findings from this community case study demonstrate the feasibility of conducting a community-level consensus exercise among an equity-deserving group while providing detailed guidance for how to ensure future research and policy-based decision-making is shared across diverse knowledge users. |
| first_indexed | 2024-03-08T00:22:03Z |
| format | Article |
| id | doaj.art-7fc583de7e2d421595b3c844484a2e02 |
| institution | Directory Open Access Journal |
| issn | 2673-6861 |
| language | English |
| last_indexed | 2024-03-08T00:22:03Z |
| publishDate | 2024-02-01 |
| publisher | Frontiers Media S.A. |
| record_format | Article |
| series | Frontiers in Rehabilitation Sciences |
| spelling | doaj.art-7fc583de7e2d421595b3c844484a2e022024-02-16T05:00:28ZengFrontiers Media S.A.Frontiers in Rehabilitation Sciences2673-68612024-02-01510.3389/fresc.2024.13354671335467A case study of using community-based consensus methods to facilitate shared decision-making among a spinal cord injury networkEmily E. Giroux0Emily E. Giroux1Peter Athanasopoulos2Shane N. Sweet3Heather L. Gainforth4Heather L. Gainforth5Centre for Health Behaviour Change, School of Health and Exercise Sciences, University of British Columbia Okanagan, Kelowna, BC, CanadaInternational Collaboration on Repair Discoveries (ICORD), University of British Columbia, Vancouver, BC, CanadaDepartment of Public Policy and Government Relations, Spinal Cord Injury Ontario, Toronto, ON, CanadaDepartment of Kinesiology & Physical Education, McGill University, Montreal, QC, CanadaCentre for Health Behaviour Change, School of Health and Exercise Sciences, University of British Columbia Okanagan, Kelowna, BC, CanadaInternational Collaboration on Repair Discoveries (ICORD), University of British Columbia, Vancouver, BC, CanadaSpinal cord injury (SCI) research and policy decisions are rarely made in partnership with people with SCI, making them less relevant, applicable, and used by those whom the decisions are intended to support. Across disciplines, consensus methods have been promoted as a viable solution for supporting shared research and policy-based decision-making. In this paper, we describe a partnered approach between academic researchers and the Ontario SCI Alliance, a non-profit, SCI community mobilization network to co-develop and co-disseminate a community-based consensus exercise. The community-based consensus exercise included two modified Delphi surveys and one in-person retreat. The partnership's goal with this exercise was to facilitate shared decision-making for the development of their upcoming strategic plan. We then interviewed partners and participants from the Delphi and in-person retreat to discuss successes, challenges, and lessons learned from the exercise. Survey 1 was disseminated to over 2,500 members of the Ontario SCI community and received 374 responses (276 coming from people with SCI). Survey 2 had 118 responses, with 87 coming from people with SCI. The retreat had 73 attendees, including people with SCI, family/friends of people with SCI, clinicians, researchers, and SCI community and research organization staff/volunteers. The retreat included a presentation of the survey results, a clinician/researcher panel, and externally-facilitated working groups. All survey responses and retreat materials were synthesized. Using the synthesized feedback, the Ontario SCI Alliance was able to implement several changes for the Ontario SCI community, including higher-quality primary care experiences (reduced wait times, more accessible examining rooms), the development of a wound care strategy with the Ontario government, and an advocacy campaign for public coverage for catheters and urinary care supplies. From the five interviews conducted, five themes were co-constructed regarding the successes, challenges, and lessons learned from the exercise: (1) Inclusion, Diversity, Equity, and Accessibility; (2) Partnership; (3) Design Considerations; (4) Transparency and Clarity in Communication; and (5) Sustainability. Findings from this community case study demonstrate the feasibility of conducting a community-level consensus exercise among an equity-deserving group while providing detailed guidance for how to ensure future research and policy-based decision-making is shared across diverse knowledge users.https://www.frontiersin.org/articles/10.3389/fresc.2024.1335467/fullspinal cord injury (SCI)consensus methodsshared decision-makingresearch partnershipDelphi methodologyinclusive research |
| spellingShingle | Emily E. Giroux Emily E. Giroux Peter Athanasopoulos Shane N. Sweet Heather L. Gainforth Heather L. Gainforth A case study of using community-based consensus methods to facilitate shared decision-making among a spinal cord injury network Frontiers in Rehabilitation Sciences spinal cord injury (SCI) consensus methods shared decision-making research partnership Delphi methodology inclusive research |
| title | A case study of using community-based consensus methods to facilitate shared decision-making among a spinal cord injury network |
| title_full | A case study of using community-based consensus methods to facilitate shared decision-making among a spinal cord injury network |
| title_fullStr | A case study of using community-based consensus methods to facilitate shared decision-making among a spinal cord injury network |
| title_full_unstemmed | A case study of using community-based consensus methods to facilitate shared decision-making among a spinal cord injury network |
| title_short | A case study of using community-based consensus methods to facilitate shared decision-making among a spinal cord injury network |
| title_sort | case study of using community based consensus methods to facilitate shared decision making among a spinal cord injury network |
| topic | spinal cord injury (SCI) consensus methods shared decision-making research partnership Delphi methodology inclusive research |
| url | https://www.frontiersin.org/articles/10.3389/fresc.2024.1335467/full |
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