An evaluation of stakeholder engagement in comparative effectiveness research: lessons learned from SWOG S1415CD

Author:

Bell-Brown Ari1ORCID,Watabayashi Kate1,Kreizenbeck Karma1,Ramsey Scott D1,Bansal Aasthaa12,Barlow William E13,Lyman Gary H14,Hershman Dawn L5,Mercurio Anne Marie6ORCID,Segarra-Vazquez Barbara7,Kurttila Florence6,Myers Jamie S8,Golenski John D9,Johnson Judy6,Erwin Robert L10,Walia Guneet11,Crawford Jeffrey12,Sullivan Sean D2

Affiliation:

1. Hutchinson Institute for Cancer Outcomes Research, Fred Hutchinson Cancer Center, Seattle, WA 98109, USA

2. CHOICE Institute, School of Pharmacy, University of Washington, Seattle, WA 98195, USA

3. SWOG Statistics & Data Management Center, Seattle, WA 98109, USA

4. School of Medicine, University of Washington, Seattle, WA 98195, USA

5. Hebert Irving Comprehensive Cancer Center, Columbia University Medical Center, NY 10032, USA

6. SWOG Patient Advocate Committee, Portland, OR 97201, USA

7. School of Health Professions, University of Puerto Rico, San Juan, PR 00921, USA

8. University of Kansas School of Nursing, KS 66160, USA

9. Kairoi Health Strategies, Boston, MA 02118, USA

10. Marti Nelson Cancer Foundation, Davis, CA 95616, USA

11. Genentech, San Francisco, CA 94080, USA

12. Duke Cancer Institute, Duke University Medical Center, Durham, NC 27710, USA

Abstract

Aim: Stakeholder engagement is central to comparative effectiveness research yet there are gaps in definitions of success. We used a framework developed by Lavallee  et al. defining effective engagement criteria to evaluate stakeholder engagement during a pragmatic cluster-randomized trial. Methods: Semi-structured interviews were developed from the framework and completed to learn about members' experiences. Interviews were analyzed in a deductive approach for themes related to the effective engagement criteria. Results: Thirteen members participated and described: respect for ideas, time to achieve consensus, access to information and continuous feedback as areas of effective engagement. The primary criticism was lack of diversity. Discussion: Feedback was positive, particularly among themes of respect, trust and competence, and led to development of a list of best practices for engagement. The framework was successful for evaluating engagement. Conclusion: Standardized frameworks allow studies to formally evaluate their stakeholder engagement approach and develop best practices for future research.

Funder

National Cancer Institute

Patient-Centered Outcomes Research Institute

Publisher

Becaris Publishing Limited

Subject

Health Policy

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