Christine A March1, Traci M Kazmerski2, Christine Moon1, Ingrid M Libman1, Elizabeth Miller2. 1. Division of Pediatric Endocrinology and Diabetes, UPMC Children's Hospital of Pittsburgh, University of Pittsburgh, Pittsburgh, PA. 2. Division of Adolescent and Young Adult Medicine, UPMC Children's Hospital of Pittsburgh, University of Pittsburgh, Pittsburgh, PA.
Abstract
OBJECTIVE: Although the importance of stakeholder engagement (SE) for patient-centered research is recognized, few studies document SE processes and influence on research outcomes in the diabetes field. We applied a research-informed framework to evaluate the impact of SE on a pediatric diabetes study exploring school nurse perspectives on modern diabetes devices. METHODS: We recruited parents of children with type 1 diabetes, school nurses, and diabetes providers. Stakeholders convened virtually every 2 months for 12 months. Goals for SE included input on research materials, interpretation of findings, and future research directions. Processes were assessed using a validated survey. Immediate outcomes included changes to research materials and satisfaction. Secondary outcomes included research efficiency and value (acceptance by community partners). RESULTS: Each role was represented at every meeting. The majority of stakeholders (>70%) completed the survey at study midpoint and end points. All surveyed indicated that they had received all desired information, shared feedback, and felt valued. Stakeholders were satisfied with the meeting frequency. Participants appreciated learning from each other and expressed enthusiasm for continued research participation. They described their role as one of consultant rather than research team members. SE resulted in five additional interview questions. Nearly 70 comments added to the interpretation of qualitative themes. Findings were published within 12 months and recognized by the state school nursing organization. CONCLUSION: SE was well received and led to meaningful changes in content and dissemination of a diabetes study. A systematic approach to evaluating SE can increase scientific rigor and reproducibility and contribute to best practices for SE in diabetes research.
OBJECTIVE: Although the importance of stakeholder engagement (SE) for patient-centered research is recognized, few studies document SE processes and influence on research outcomes in the diabetes field. We applied a research-informed framework to evaluate the impact of SE on a pediatric diabetes study exploring school nurse perspectives on modern diabetes devices. METHODS: We recruited parents of children with type 1 diabetes, school nurses, and diabetes providers. Stakeholders convened virtually every 2 months for 12 months. Goals for SE included input on research materials, interpretation of findings, and future research directions. Processes were assessed using a validated survey. Immediate outcomes included changes to research materials and satisfaction. Secondary outcomes included research efficiency and value (acceptance by community partners). RESULTS: Each role was represented at every meeting. The majority of stakeholders (>70%) completed the survey at study midpoint and end points. All surveyed indicated that they had received all desired information, shared feedback, and felt valued. Stakeholders were satisfied with the meeting frequency. Participants appreciated learning from each other and expressed enthusiasm for continued research participation. They described their role as one of consultant rather than research team members. SE resulted in five additional interview questions. Nearly 70 comments added to the interpretation of qualitative themes. Findings were published within 12 months and recognized by the state school nursing organization. CONCLUSION: SE was well received and led to meaningful changes in content and dissemination of a diabetes study. A systematic approach to evaluating SE can increase scientific rigor and reproducibility and contribute to best practices for SE in diabetes research.
Authors: Thomas W Concannon; Sean Grant; Vivian Welch; Jennifer Petkovic; Joseph Selby; Sally Crowe; Anneliese Synnot; Regina Greer-Smith; Evan Mayo-Wilson; Ellen Tambor; Peter Tugwell Journal: J Gen Intern Med Date: 2018-12-18 Impact factor: 5.128
Authors: Daniel Cukor; Lewis M Cohen; Elizabeth L Cope; Nasrollah Ghahramani; S Susan Hedayati; Denise M Hynes; Vallabh O Shah; Francesca Tentori; Mark Unruh; Jeanette Bobelu; Scott Cohen; Laura M Dember; Thomas Faber; Michael J Fischer; Rani Gallardo; Michael J Germain; Donica Ghahate; Nancy Grote; Lori Hartwell; Patrick Heagerty; Paul L Kimmel; Nancy Kutner; Susan Lawson; Lisa Marr; Robert G Nelson; Anna C Porter; Phillip Sandy; Bruce B Struminger; Lalita Subramanian; Steve Weisbord; Bessie Young; Rajnish Mehrotra Journal: Clin J Am Soc Nephrol Date: 2016-05-19 Impact factor: 8.237
Authors: Thomas W Concannon; Melissa Fuster; Tully Saunders; Kamal Patel; John B Wong; Laurel K Leslie; Joseph Lau Journal: J Gen Intern Med Date: 2014-06-04 Impact factor: 5.128
Authors: Emily B Schroeder; Jay Desai; Julie A Schmittdiel; Andrea R Paolino; Jennifer L Schneider; Glenn K Goodrich; Jean M Lawrence; Katherine M Newton; Gregory A Nichols; Patrick J O'Connor; Marcy Fitz-Randolph; John F Steiner Journal: Interact J Med Res Date: 2015-06-30
Authors: Molly Byrne; Anthony O'Connell; Aoife M Egan; Sean F Dinneen; Lisa Hynes; Mary Clare O'Hara; Richard I G Holt; Ingrid Willaing; Michael Vallis; Christel Hendrieckx; Imelda Coyne Journal: Trials Date: 2017-12-19 Impact factor: 2.279