Network Engagement in Action

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.

Enhancing community engagement in Patient-Centered Outcomes Research: Equipping learners to thrive in translational efforts

“…The second gap is the utilization of stakeholders in effective research dissemination. Stakeholders representing community organizations, practice, or policy are well positioned to provide insight into research activities and can serve as conduits for results dissemination through their broad networks [16,17]. Additionally, patients and caregivers sit at the core of patient-centered outcomes and can transform research findings into relevant lay public resources, drawing from their intimate understanding of the day-to-day challenges of their condition [16].…”

“…Engagement activities in the PaTH to Health: Diabetes study has been described elsewhere [16,17]. This section will focus specifically on the educational opportunities offered to stakeholders on this project.…”

“…Stakeholders representing community organizations, practice, or policy are well-positioned to provide insight into research activities and can serve as conduits for results dissemination through their broad networks. 16,17 Additionally, patients and caregivers sit at the core of patient-centered outcomes and can transform research findings into relevant lay public resources, drawing from their intimate understanding of day-to-day challenges of their condition. 16 Delivering a robust educational experience for partners new to PCOR can cast a wider dissemination net and facilitate increased uptake of study findings.…”

Patient and Patient Group Engagement in Cancer Clinical Trials: A Stakeholder Charter

“…Establishing partnerships with patients and patient groups (PGs) to engage them in all levels of clinical trials (CTs), including in real-world evidence research, is increasingly explored and applied globally [ 1 , 2 , 3 , 4 , 5 , 6 , 7 , 8 , 9 , 10 , 11 , 12 , 13 , 14 , 15 , 16 , 17 , 18 , 19 , 20 , 21 , 22 , 23 ]. Keys to such engagement—also referred to as co-design research, participatory research, patient-oriented research (POR), patient-involved research, patient public involvement, patient participation, co-creative research, citizen science, patient-centric initiative, open science—are the understanding and the manifestation of the concept of patient centricity or patient centeredness [ 1 , 3 , 4 , 24 , 25 , 26 , 27 ].…”

“…Advantages of involving the end-user groups in the broad research agenda include increased research relevance to both clinicians and patients [ 1 ], with positive impacts reported in setting research priorities, developing proposals, recruiting and retaining patients, as well as disseminating results, including societal and ethical benefits [ 2 , 4 , 7 , 9 , 10 , 14 , 28 , 29 , 30 , 31 , 32 , 33 ]. Guidelines and recommendations are emerging on research partnerships with patients, which support the principles of trust, respect, and co-learning [ 2 , 7 , 13 , 18 , 19 , 22 , 34 ].…”