Jennifer M Poger1, Victoria Mayer2,3, Obidiugwu Kenrik Duru4, Beth Nauman5, Heather Holderness6, Nate Warren7, Carolina Vasquez8, Salma Bibi9, Laura J Rasmussen-Torvik10, Zahra Hosseinian11, Lizheng Shi12, Jamie Wallace13, Crispin N Goytia14, Carol R Horowitz15, Jennifer L Kraschnewski16. 1. Department of Medicine, Penn State College of Medicine, Hershey, PA. 2. Department of Population Health Science and Policy. 3. Department of Medicine, Division of General Internal Medicine, Icahn School of Medicine at Mount Sinai, New York, NY. 4. Division of General Internal Medicine & Health Services Research, David Geffen School of Medicine, UCLA, Los Angeles, CA. 5. Health Services Research, Louisiana Public Health Institute, New Orleans, LA. 6. Department of Family Medicine, Oregon Health and Science University. 7. OCHIN Inc., Portland, OR. 8. UCLA Division of General Internal Medicine and Health Services Research, Los Angeles, CA. 9. Center for HealthCare Organizational and Innovation Research (CHOIR), School of Public Health, University of California, Berkeley, Berkeley, CA. 10. Department of Preventive Medicine, Feinberg School of Medicine, Northwestern University. 11. Center for Health Information Partnerships (CHIP), Northwestern University Feinberg School of Medicine, Chicago, IL. 12. Health Systems Analytics Research Center, Department of Global Health Management and Policy at School of Public Health and Tropical Medicine, Tulane University, New Orleans, LA. 13. Department of Population Medicine, Division of Health Policy and Insurance Research, Harvard Pilgrim Health Care Institute, Boston, MA. 14. Clinical Translational Science Award (CTSA) Community Core, Mount Sinai School of Medicine. 15. Health Policy and Medicine, Icahn School of Medicine at Mount Sinai New York, NY. 16. Department of Medicine and Public Health Sciences, Penn State Clinical and Translational Science Institute, Penn State Health Milton S. Hershey Medical Center, Hershey, PA.
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.
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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