Introduction

As healthcare systems experience mounting pressure for care, coupled with declining capacity, the adoption of digitally enabled interventions is expanding to relieve system burden1,2. Digital interventions encompass a range of technologies, including, but not limited to, wearable devices, mobile applications (apps), and administrative systems3. However, to ensure digital healthcare interventions are appropriate (i.e., fit for purpose) and beneficial, co-design should be incorporated into their development. Co-design can take many forms, such as user experience surveys or think-aloud demonstrations, and involves a range of stakeholders, such as patients and charitable organisations4. These interactions provide invaluable lived-experience perspectives to shape interventions at various stages of development and deployment. When offering a needed solution, the benefits of digital healthcare interventions can be substantial, such as wearables for data-informed clinical decision-making, apps for remote disease monitoring, and cross-platform administrative systems to promote integrated care. The former two examples are classified as digital medicine, a subset of digital healthcare focused on interventions that directly measure or intervene in human health5. Co-design approaches will be increasingly instrumental in ensuring future digital healthcare addresses the needs of populations and individuals, and avoids wasting resources on unwanted, inoperable, or ineffective interventions.

A recent umbrella review examines how co-design of digital health and care interventions is conducted and described in the existing literature6. Kilfoy et al. sought to identify and synthesise the data collection methods used and the breadth and depth of end-user involvement in the development process6. The synthesis took the form of an umbrella review (a review of systematic reviews). Across the 21 included systematic reviews, various co-design approaches were identified, with the three most common being user experience surveys, focus groups, and interviews. These involved patients, caregivers, healthcare professionals, policymakers, teachers, and behaviour specialists.

What does the literature say?

Although there was a breadth of literature on co-designing digital interventions, the umbrella review highlights consistent omissions and discrepancies in key details. Kilfoy et al. describe how various terms were used to refer to co-design by the authors of the systematic reviews included in the synthesis, such as participatory research, patient and public involvement, and human-centred development6. This can prevent readers from understanding whether the approach taken in the research is truly co-design, especially if authors are sparse with details, as suggested by Kilfoy et al.6. Differing terminology can over-complicate simple facts7: while co-design, participatory research, and patient and public involvement are overlapping concepts, there are key distinctions. The primary differences stem from the purpose of end-user involvement and the degree of influence on the intervention’s design7. It is suggested that co-design is a form of participatory action research, and that patient and public involvement is a broad, overarching term encompassing everything8. Co-design is defined as meaningful end-user involvement in the development process of an intervention, often involving multiple, iterative interactions4. Thus, it goes beyond mere retrospective, tokenistic exchanging of opinions. Moreover, many of the systematic reviews included in Kilfoy et al.’s paper did not clarify which stage of development the co-design occurred (e.g., conceptualisation, design, pre-implementation, implementation, post-implementation), nor did their authors evaluate the co-design’s effectiveness in achieving the desired outcome6. Without evaluation, learning is lost, and how to improve and maximise the valuable time of all those involved is unutilised.

Challenges and key considerations

There are several challenges and key considerations in undertaking co-design. Challenges, such as time commitments and power imbalances between researchers and participants, should not deter innovators from using co-design. Involving end-users in the development of digital interventions provides an invaluable lived-experience perspective. This is especially relevant when creating digital healthcare interventions for underserved and marginalised communities. Without involving these individuals in some/any capacity, there is a risk of worsening the digital divide and health and care inequalities, as those in need of the digital intervention may not want to use it.

Kilfoy et al.’s umbrella review identified both practical and theoretical challenges in undertaking co-design, such as time commitments and power imbalances between researchers and participants. Concerted efforts are required to identify a willing, diverse sample of the target population to participate; thus, outreach and recruitment may take time—a fact that should not dissuade from the use of co-design. Although it must be acknowledged that digital healthcare interventions can have limited funding and timeframes, this restricts opportunities for meaningful co-design. However, funding bodies, such as the National Institute for Health and Social Care Research (NIHR) in England, accept proposals for patient and public involvement and engagement (PPIE), underpinned by the belief that research should be carried out “with” or “by” end-users rather than “to”, “about”, or “for” them9.

Co-design should not only benefit the intervention creator by ensuring it is appropriate, needed, and effective, but the process itself also has potential benefits for the end-user. The meaningful element refers to all parties involved in co-design and, subsequently, should provide an opportunity for stakeholders with lived experience to feel empowered, heard, and seen.

Inequalities and the digital divide

Kilfoy et al.’s umbrella review reflected on the broader implications of co-designing digital health and care interventions on the “digital divide”; specifically, ensuring that “equity and accessibility principles” are central to the process, otherwise there is a risk of worsening the situation. The digital divide refers to the discrepancy between those who utilise digital technologies and those who do not10,11. Van Dijk and Hacker suggest four dimensions of access: motivational, material, skills, and usage12. Much attention is paid to material access—can individuals easily acquire and maintain the necessary technology—yet all dimensions are equally important in the uptake of digital interventions10. These are important considerations when rolling out digital interventions at scale.

Digital innovators should try to ensure all aspects of access are considered from the perspectives of all relevant stakeholders13,14. In policy, practice, and research, the digital divide is often discussed from a patient perspective. However, healthcare professionals must have the skills to implement and maintain new digital interventions to reap the intended benefits. Research suggests they are significantly underprepared15. Indeed, given that healthcare systems are often overwhelmed, there is often limited capacity for professionals to learn and implement new digital interventions.

Conclusion

Regardless of the specific approach or the terminology used to describe the process, the fundamental message for those seeking to develop or implement a digital intervention is to involve those with lived experience. Co-design approaches will be increasingly instrumental in ensuring future digital healthcare addresses the needs of populations and individuals, and avoids wasting resources on unwanted, inoperable, or ineffective interventions.