JMIR Publications

ABSTRACT

Background:

Research has shown that patient engagement is most commonly done in the beginning of research or to test readily available prototypes and less commonly in other phases such as the execution phases. Previous studies report that patients usually are assigned a consultative, rather than decision-making role in health service planning and evaluation.

Objective:

This study had two objectives; to better understand the challenges and opportunities in the inclusion of patients in the development of eHealth technologies and ideas on how to overcome the identified gaps, as well as creating a research-based end-to-end practical blueprint that can guide the relevant stakeholders to successfully engage patients as co-creators in all human-centred design phases rather than mere testers of preplanned prototypes.

Methods:

Key informant interviews were conducted, through in-depth semi-structured interviews with 20 participants in 6 countries across Europe. This was followed by a focus group to validate the initial findings. Participants encompassed all the relevant stakeholder groups including patient experts, eHealth experts, health technology providers, clinicians, Pharma executives, and health insurance experts.

Results:

This study shows that engaging patients in eHealth development can help provide different types of value; namely identifying unmet needs, better usability and desirability, better fit into the patient journey, better adoption and stickiness, better health outcomes, advocacy and trust, a sense of purpose, and better health equity and access. However, the participants agreed that patients are usually engaged too late in the development process, mostly assuming a sounding role in testing a ready-made prototype. The justification for these gaps in engagement are driven by some prominent barriers, notably compliance risks, patient-related factors, power dynamics, patient engagement as lip service, poor value perception, lack of resources, mistrust, and inflexibility. On the positive side, the participants also reflected on facilitators for better patient engagement; for instance, engaging through engagement partners, novel approaches such as the rise of professional patient experts, embedding patients in the development teams, expectation management, and professional moderation services.

Conclusions:

Overcoming the current gaps in patient engagement in eHealth development requires consolidated efforts from all stakeholders in the complex healthcare ecosystem. The shift towards more patient-driven eHealth development requires education and awareness, frameworks to monitor and evaluate the value of patient engagement, regulatory clarity and simplification, platforms to facilitate patient access and identification, patient incentivization, transparency and trust, and a mindset shift towards value-based healthcare. Clinical Trial: Not Applicable