Linda Fleisher1, Sarah Bauerle Bass2, Michelle Shwarz3, Armenta Washington4, Andrea Nicholson5, Mohammed Alhajji2, Daniel M Geynisman6, Laurie Maurer7, Judith Greener8, Cassidy Kenny1. 1. Cancer Prevention & Control, Fox Chase Cancer Center, Philadelphia, Pennsylvania. 2. Department of Social and Behavioral Sciences, Temple University College of Public Health, Philadelphia, Pennsylvania. 3. Pharmacoepidemiology, American Regent, New York, USA. 4. Office of Community Outreach, Fox Chase Cancer Center, Cheltenham, Pennsylvania. 5. Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania. 6. Department of Hematology/Oncology, Fox Chase Cancer Center, Philadelphia, Pennsylvania. 7. Tennessee Department of Health, Nashville, Tennessee. 8. Inside Edge Consulting Group, Jersey.
Abstract
OBJECTIVE: Designing salient digital health interventions requires theoretically-based formative research and user-center design with stakeholder input throughout impacting content and technology design. mychoice is a theory-based, stakeholder-guided digital health tool to improve clinical trial informed decision making, particularly among African American patients. METHODS: mychoice was developed by (1) mixed-methods formative research, including in-depth interviews (n=16) and surveys (N=41) with African American cancer patients who had and had not participated in a clinical trial; (2) e-tool design process including perceptual mapping analysis to prioritize messages, multi-disciplinary team and stakeholder input; and (3) iterative production and user testing. RESULTS: Interview findings showed that clinical trial participants expressed more positive attributes about and an openness to consider clinical trials, even though they expressed common concerns such as "fear of being a guinea pig". Survey results indicated that clinical trial participants expressed they had been given information to make the decision (P = .001), while those who had not more frequently reported (P > .001) that no one had talked to them about trials. Perceptual mapping indicated that values such as "helping find a cure" or "value to society" had little resonance to those who had not participated, providing message strategy for prototype development. User testing of the tool resulted in modifications; the most significant was the adaptation to a multi-cultural version. CONCLUSIONS: With the promise of digital health interventions, theory-guided, user-centered and best practice development is critical and mychoice serves as an example of the application of these principles.
OBJECTIVE: Designing salient digital health interventions requires theoretically-based formative research and user-center design with stakeholder input throughout impacting content and technology design. mychoice is a theory-based, stakeholder-guided digital health tool to improve clinical trial informed decision making, particularly among African American patients. METHODS: mychoice was developed by (1) mixed-methods formative research, including in-depth interviews (n=16) and surveys (N=41) with African American cancerpatients who had and had not participated in a clinical trial; (2) e-tool design process including perceptual mapping analysis to prioritize messages, multi-disciplinary team and stakeholder input; and (3) iterative production and user testing. RESULTS: Interview findings showed that clinical trial participants expressed more positive attributes about and an openness to consider clinical trials, even though they expressed common concerns such as "fear of being a guinea pig". Survey results indicated that clinical trial participants expressed they had been given information to make the decision (P = .001), while those who had not more frequently reported (P > .001) that no one had talked to them about trials. Perceptual mapping indicated that values such as "helping find a cure" or "value to society" had little resonance to those who had not participated, providing message strategy for prototype development. User testing of the tool resulted in modifications; the most significant was the adaptation to a multi-cultural version. CONCLUSIONS: With the promise of digital health interventions, theory-guided, user-centered and best practice development is critical and mychoice serves as an example of the application of these principles.
Keywords:
cancer; clinical trials; development processt; digital health; ehealth; health communciation; informed decision making; patient engagement; theory driven; user centered
Authors: Agnese Seregni; Enrica Tricomi; Peppino Tropea; Rocio Del Pino; Juan Carlos Gómez-Esteban; Inigo Gabilondo; María Díez-Cirarda; Hannes Schlieter; Kai Gand; Massimo Corbo Journal: Front Public Health Date: 2021-12-02