JMIR Publications

ABSTRACT

Background:

Defined as a public priority, digital health is considered essential for creating sustainable and equitable health care systems on an international scale.

Objective:

However, while widely acknowledged as beneficial, recent research shows that patients and the public are rarely involved in the design, implementation, and evaluation of digital health technologies. Furthermore, stakeholder consensus on the principles that underpin meaningful involvement in digital health specifically is not yet readily available.

Methods:

This research draws on a four-phase methodology: i) extensive systematic review of peer-reviewed literature; ii) inductive thematic analysis of review findings; iii) co-design workshop to identify best practice principles; and iv) consensus testing of identified principles amongst key stakeholders using a modified Delphi methodology. This manuscript reports on phases three and four only. The systematic review methodology and findings are reported elsewhere.

Results:

Thirteen principles categorised into four headings (i) engage, ii) acknowledge, reward and value, iii) communicate and iv) trust and transparency) termed the EnACT framework were co-designed by workshop participants. Nine principles achieved ‘essential’ consensus (>75% agreement) status by 14 expert respondents. Principles with the highest level of consensus included: providing clear assurances and information about patient confidentiality, data privacy and security (100%) and creating a space where people feel safe and supported in sharing their digital innovation ideas and suggestions (100%). Providing clear assurances and information about patient confidentiality, data privacy and security was repeatedly described as essential and totally non-negotiable by participants. Principles that failed to achieve consensus included: co-designing engaging activities and evaluation methods (50% essential vs 50% desirable); building in sufficient time and resources (57% vs 43%); developing a feedback loop (71% vs 29%) and advertising the potential benefits of being involved (43% vs 57%). One prevailing justification for categorising principles as desirable was a perceived disparity between ‘preferable’ or ‘desirable’ best practise, and the ‘realities’ of implementing such principles. With the exception of one principle categorised as irrelevant by one innovator, no other principles were considered irrelevant. No alternative principles were suggested by expert respondents.

Conclusions:

This research advances existing knowledge and understanding by providing previously unavailable consensus on the principles that underpin meaningful Patient Public Involvement in digital health innovation, implementation and evaluation. Expert respondents suggest such principles should be aspired to wherever possible to ensure involvement optimisation. However, stakeholders need to be sufficiently supported and operating within adequately resourced and receptive environments if high quality involvement is to become a reality. Failure to do so may mean patient and public involvement in digital health continues to remain a rarely practised, or tokenistic exercise that jeopardises innovation relevance, value, and utility, ultimately endangering the desired vision of digital health creating sustainable and equitable health care systems on an international scale.