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. 2020 Jun;58 Suppl 6 Suppl 1(Suppl 6 1):S66-S74.
doi: 10.1097/MLR.0000000000001264.

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

Jennifer M Poger  1 , Victoria Mayer  2   3 , Obidiugwu Kenrik Duru  4 , Beth Nauman  5 , Heather Holderness  6 , Nate Warren  7 , Carolina Vasquez  8 , Salma Bibi  9 , Laura J Rasmussen-Torvik  10 , Zahra Hosseinian  11 , Lizheng Shi  12 , Jamie Wallace  13 , Crispin N Goytia  14 , Carol R Horowitz  15 , Jennifer L Kraschnewski  16
Affiliations

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

Jennifer M Poger et al. Med Care. 2020 Jun.

Abstract

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.

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Conflict of interest statement

Conflict of Interest Disclosure: All authors declare no conflicts of interest.

Figures

Figure 1.
Figure 1.
Key Engagement Activities Across Partner Institutions.
See this image and copyright information in PMC

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