Christopher Wendel1, Virginia Sun2,3, Nancy Tallman4, Christie Simons4, Peter Yonsetto5, Frank Passero6, Deborah Donahue6, Dan Fry6, Roger Iverson7, Pamela Pitcher8, Jonathan Friedlaender8, Lyn MacDougall9, Joshua Henson9, Ruth C McCorkle10, Elizabeth Ercolano10, Zuleyha Cidav11, Michael J Holcomb5, Ronald S Weinstein5, Mark C Hornbrook12, Marcia Grant2, Robert S Krouse13. 1. Department of Medicine, Arizona Center On Aging, University of Arizona, 1501 N. Campbell, PO Box 245027, Tucson, AZ, 85724-5027, USA. cwendel@arizona.edu. 2. Division of Nursing Research and Education, Department of Population Sciences, City of Hope, Duarte, CA, USA. 3. Department of Surgery, City of Hope, Duarte, CA, USA. 4. Unaffiliated (Wound, Ostomy, and Continence Nurse), Tucson, AZ, USA. 5. Arizona Telemedicine Program, University of Arizona, Tucson, AZ, USA. 6. Unaffiliated (Patient Partner), Philadelphia, PA, USA. 7. Unaffiliated (Patient Partner), Tucson, AZ, USA. 8. Unaffiliated (Patient Partner), New Haven, CT, USA. 9. Unaffiliated (Patient Partner), Duarte, CA, USA. 10. School of Nursing, Yale University, New Haven, CT, USA. 11. Center for Mental Health, University of Pennsylvania, Philadelphia, PA, USA. 12. Center for Health Research, Kaiser Permanente, Portland, OR, USA. 13. Department of Surgery, University of Pennsylvania, Philadelphia, PA, USA.
Abstract
PURPOSE: Stakeholder engagement is increasingly integrated into clinical research processes. We conducted a mixed methods analysis to describe stakeholders' (peer ostomates, ostomy nurses, telehealth engineers) perceptions of their engagement and participation in a multisite, randomized trial of a telehealth-delivered curriculum for cancer survivors with ostomies. METHODS: Stakeholder notes were analyzed using narrative analysis. We constructed a 15-item survey that assessed the following areas: adherence to stakeholder engagement principles, engagement/influence throughout the study process, impact on perceived well-being, and satisfaction. Stakeholders were invited to complete the survey anonymously. Quantitative survey data were tabulated through summary statistics. RESULTS: Across intervention sessions, an average of 7.7 ± 1.4 stakeholders attended and 2.6 ± 1.4 submitted a note per session. The survey response rate was 73% (11/15). Stakeholders reported high agreement that the study adhered to engagement principles (91% reciprocal relationships, 100% co-learning, partnership, and transparency/honesty/trust). They felt highly engaged (18% moderate, 73% great deal) and that they had influence on study initiation (27% moderate, 55% great deal), intervention delivery (9% moderate, 82% great deal), fidelity assessment (18% moderate, 73% great deal), analysis and interpretation (55% moderate, 27% great deal), and dissemination (45% moderate, 45% great deal). They reported high overall satisfaction with roles (91% great deal), believed the program was helpful for participants (91%), and that serving on study team benefited their own well-being (100%). CONCLUSIONS: Our strategy of stakeholder inclusion led to high engagement, input, satisfaction, and belief in success of program, which could be mirrored in other trials.
PURPOSE: Stakeholder engagement is increasingly integrated into clinical research processes. We conducted a mixed methods analysis to describe stakeholders' (peer ostomates, ostomy nurses, telehealth engineers) perceptions of their engagement and participation in a multisite, randomized trial of a telehealth-delivered curriculum for cancer survivors with ostomies. METHODS: Stakeholder notes were analyzed using narrative analysis. We constructed a 15-item survey that assessed the following areas: adherence to stakeholder engagement principles, engagement/influence throughout the study process, impact on perceived well-being, and satisfaction. Stakeholders were invited to complete the survey anonymously. Quantitative survey data were tabulated through summary statistics. RESULTS: Across intervention sessions, an average of 7.7 ± 1.4 stakeholders attended and 2.6 ± 1.4 submitted a note per session. The survey response rate was 73% (11/15). Stakeholders reported high agreement that the study adhered to engagement principles (91% reciprocal relationships, 100% co-learning, partnership, and transparency/honesty/trust). They felt highly engaged (18% moderate, 73% great deal) and that they had influence on study initiation (27% moderate, 55% great deal), intervention delivery (9% moderate, 82% great deal), fidelity assessment (18% moderate, 73% great deal), analysis and interpretation (55% moderate, 27% great deal), and dissemination (45% moderate, 45% great deal). They reported high overall satisfaction with roles (91% great deal), believed the program was helpful for participants (91%), and that serving on study team benefited their own well-being (100%). CONCLUSIONS: Our strategy of stakeholder inclusion led to high engagement, input, satisfaction, and belief in success of program, which could be mirrored in other trials.