The Pathways to Health for All report recommends community engagement as one way to improve the health equity and health disparities research programs at the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). The report recommends that researchers build and sustain partnerships with community members and community organizations. It also recommends developing resources to help community-based organizations meaningfully engage in research.
The report was developed with patients, caregivers, and others living with or at risk for diabetes, digestive, or kidney diseases. These individuals were equal members of the Working Group, and their perspectives and priorities are included in the final recommendations.
Stage(s) of Research Process:
- Study Planning: The report provides recommendations for talking with patients and community members to identify their top concerns and develop research ideas.
- Study Conduct: The report provides suggestions for ways to educate community members and community-based organizations on the importance of research, and ways to learn from community members to improve the study.
- Post-Study: The report describes opportunities for making research data accessible to the community, sustaining relationships beyond the end of individual studies, and building long-term research capacity among community partners.
Who Might Benefit:
- Researchers
- Seeking to conduct community-engaged research can use the recommendations to inform their efforts.
- Can learn how to build relationships with community organizations to set priorities, develop research ideas, and sustain relationships beyond the end of a single study.
- Patients, Caregivers, Patient Advocacy Groups, and Communities working with research teams could benefit from the partnerships that will result from the use of these recommendations. The report can also help them set expectations for researchers.
Key Takeaways and Examples in Practice:
- Community engaged research is needed to improve health equity and reduce health disparities.
- NIDDK now encourages community engaged research practices in more funding announcements.
- Inviting patients and community members to speak at scientific workshops can improve community engagement in research.
- The priorities of patients, caregivers, and others living with or at risk for diabetes, digestive, or kidney diseases are featured in call-out boxes throughout the report. This format makes it easy for readers to understand the values of those who will most benefit from the research.
This work was done with the direct support by each of the following partners who advance this work:
- The NIDDK Advisory Council’s Health Disparities and Health Equity Research Working Group (See Appendix D of the Report for Individual Members)
Keywords: Equitable Engagement; Collaborative Decision-Making; Sustainable Engagement & Capacity Building; Researchers
Links to Relevant Resources:
- Pathways to Health for All – Report on NIDDK Website
- Pathways to Health for All – PDF Version of Report
- Contact NIDDK for Questions
Definitions for each engagement objective can be found in the glossary.