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. 2018 Oct 24;2(1):47.
doi: 10.1186/s41687-018-0074-1.

Patient centered research to improve community involvement (PaRTICIpate) in diabetes self-management: a conference series for developing collaborations between researchers, stakeholders, and patients

Ashley S Crumby  1 , Erin R Holmes  2 , Meagen Rosenthal  3
Affiliations

Patient centered research to improve community involvement (PaRTICIpate) in diabetes self-management: a conference series for developing collaborations between researchers, stakeholders, and patients

Ashley S Crumby et al. J Patient Rep Outcomes. .

Abstract

Background: A patient-centered approach to research development is important to the creation of research evidence that is meaningful and beneficial to patients. Collaboration between patients, stakeholders, and researchers, where patients serve an integral role in all aspects of the research development process, is integral to achieving these twin objectives.

Results: This paper presents a unique approach to engaging patients and stakeholders in research by describing a conference series focused on meaningfully integrating patients in each phase of the project. Through three meeting phases, patients were not only introduced to patient-centered research (PCR) concepts, but they also led discussions about diabetes self-management and developed PCR questions. A total of 17 questions were developed represented by four main themes: communication, patient knowledge and perceptions, diabetes prevention, and diabetes management. Through patient feedback, three research questions were each identified as immediate priorities for development into research project proposals.

Conclusion: To our knowledge, the use of a conference series designed to teach patients about research, encourage collaboration across stakeholder groups, and write research questions has not been described in the literature. Moreover, this approach has proven successful in recruiting and retaining patient participation through the life of the project. This project has also identified a number of issues for consideration by future researchers looking to meaningfully engage patients in the development of research proposals.

Keywords: Community based participatory research; Diabetes; Patient engagement; Patient-centered research.

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Conflict of interest statement

Ethics approval and consent to participate

This project received a waiver of IRB approval. The Eugene Washington PCORI Engage Awards: Conference Support funding opportunity is specifically designed to support research, rather than conduct research (https://www.pcori.org/funding-opportunities/announcement/engagement-award-conference-support). More specifically this opportunity is intended to encourage the active integration of patients, caregivers, clinicians, and other healthcare stakeholders in the development of PCOR and CER research projects (same reference as above). In line with this mission, and the objective of this proposed project, we were not conducting research, rather we partnered with our patient team members to develop research questions for future research projects. As such, traditional routing through an IRB office was not necessary.

Consent for publication

Not applicable.

Competing interests

Ashley Crumby, Erin Holmes, and Meagen Rosenthal have no conflicts relevant to the contents of this article.

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Figures

Fig. 1
Fig. 1
Conference series flow diagram
See this image and copyright information in PMC

References

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