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

Psychooncology. 2020 Jan;29(1):114-122. doi: 10.1002/pon.5254. Epub 2019 Dec 2.

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.

Keywords: cancer; clinical trials; development processt; digital health; ehealth; health communciation; informed decision making; patient engagement; theory driven; user centered.

MeSH terms

  • African Americans / psychology*
  • Clinical Trials as Topic / psychology*
  • Communication
  • Decision Making
  • Humans
  • Neoplasms / therapy
  • Patient Education as Topic / methods*
  • Patient Participation / psychology*
  • Personal Autonomy*
  • Research Subjects
  • Surveys and Questionnaires