Network Engagement in Action: Stakeholder Engagement Activities to Enhance Patient-centeredness of Research

Jennifer M. Poger, Victoria Mayer, Obidiugwu Kenrik Duru, Beth Nauman, Heather Holderness, Nate Warren, Carolina Vasquez, Salma Bibi, Laura J. Rasmussen-Torvik, Zahra Hosseinian, Lizheng Shi, Jamie Wallace, Crispin N. Goytia, Carol R. Horowitz, Jennifer L. Kraschnewski

Research output: Contribution to journalArticlepeer-review

12 Scopus citations


BACKGROUND: Stakeholders (ie, patients, policymakers, clinicians, advocacy groups, health system leaders, payers, and others) offer critical input at various stages in the research continuum, and their contributions are increasingly recognized as an important component of effective translational research. Natural experiments, in particular, may benefit from stakeholder feedback in addressing real-world issues and providing insight into future policy decisions, though best practices for the engagement of stakeholders in observational studies are limited in the literature. METHODS: The Natural Experiments for Translation in Diabetes 2.0 (NEXT-D2) network utilizes rigorous methods to evaluate natural experiments in health policy and program delivery with a focus on diabetes-related outcomes. Each of the 8 partnering institutions incorporates stakeholder engagement throughout multiple study phases to enhance the patient-centeredness of results. NEXT-D2 dedicates a committee to Engagement for resource sharing, enhancing engagement approaches, and advancing network-wide engagement activities. Key stakeholder engagement activities include Study Meetings, Proposal Development, Trainings & Educational Opportunities, Data Analysis, and Results Dissemination. Network-wide patient-centered resources and multimedia have also been developed through the broad expertise of each site's stakeholder group. CONCLUSIONS: This collaboration has created a continuous feedback loop wherein site-level engagement approaches are informed via the network and network-level engagement efforts are shaped by individual sites. Emerging best practices include: incorporating stakeholders in multiple ways throughout the research, building on previous relationships with stakeholders, enhancing capacity through stakeholder and investigator training, involving stakeholders in refining outcome choices and understanding the meaning of variables, and recognizing the power of stakeholders in maximizing dissemination.

Original languageEnglish
Pages (from-to)S66-S74
JournalMedical Care
Volume58 Suppl 6 Suppl 1
StatePublished - 1 Jun 2020


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