Using theory and user‐centered design in digital health: The development of the mychoice communication tool to prepare patients and improve informed decision making regarding clinical trial participation. Issue 1 (2nd December 2019)

• Record Type: Journal Article
• Authors: Fleisher, Linda; Bass, Sarah Bauerle; Shwarz, Michelle; Washington, Armenta; Nicholson, Andrea; Alhajji, Mohammed; Geynisman, Daniel M.; Maurer, Laurie; Greener, Judith; Kenny, Cassidy
• Is Part Of: Psycho-oncology. Volume 29:Issue 1(2020)
• Page Start: 114
• Page End: 122
• Publication Date: 2019-12-02
• Subjects: cancer -- clinical trials -- patient engagement -- ehealth -- digital health -- health communciation -- theory driven -- user centered -- informed decision making -- development processt; Cancer -- Psychological aspects -- Periodicals; Cancer -- Social aspects -- Periodicals; Neoplasms -- psychology -- Periodicals; 616.9940019
• DOI: 10.1002/pon.5254
• Languages: English
• ISSNs: 1057-9249

Abstract

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.