Maximizing the value of patient and public involvement in the digital health co-design process: A qualitative descriptive study with design leaders and patient-public partners

Abstract

Digital health interventions have enormous potential to support patients and the public in achieving their health goals. Nonetheless, many digital health interventions are failing to effectively engage patients and the public. One solution that has been proposed is to directly involve patients and the public in the design process of these digital health interventions. Although there is consensus that involving patients and the public in collaborative design is valuable, design teams have little guidance on how to maximize the value of their collaborative design work. The main objective of this study was to understand how the value of patient and public involvement in digital health design can be maximized, from the perspective of design leaders and patient-public partners. Using a qualitative descriptive methodology, we conducted semi-structured interviews with 19 design leaders and 9 patient-public partners. Interviewees agreed that involving patients and the public was valuable, however, they questioned if current collaborative methods were optimized to ensure maximal value. Interviewees suggested that patient and public collaborative design can add value through four different mechanisms: (1) by allowing the design process to be an empowering intervention itself, (2) by ensuring that the digital health intervention will be effectively engaging for users, (3) by ensuring that the digital health intervention will be seamlessly implemented in practice, and (4) by allowing patient-public collaborations extend beyond the initial product design. Overall, interviewees emphasized that although collaborative design has historically focused on improving the digital health product itself, patients and the public have crucial insights on implementation planning as well as how collaborative design can be used as its own empowering intervention. The results of this paper provide clarity about the ways that patient and public collaborative design can be made more valuable. Digital health design teams can use these results to be more intentional about their collaborative design approaches.

Consolidated Principles for Equitable and Inclusive Digital Health and Virtual Care Co-Design

“…In this section, we present a set of principles for co-designing equity-informed DH/VC interventions that meaningfully integrate lived-experience perspectives of patients, caregivers and communities, with a particular focus on engaging those from equity-deserving groups. To consolidate these principles, we use two co-design frameworks -one developed by Bird et al (2021) and the other by Voorheis et al (2023) -which organize co-design into distinct phases, including predesign, co-design and post-design (Table 1). These two co-design frameworks are newer contributions to the literature that outline how DH/VC technologies can be co-designed with an emphasis on patient engagement principles.…”