Participatory Methods to Engage Health Service Users in the Development of Electronic Health Resources: Systematic Review

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Journal of Medical Internet Research - International Scientific Journal for Medical Research, Information and Communication on the Internet #Preprint #PeerReviewMe: Warning: This is a unreviewed preprint. Readers are warned that the document has not been peer-reviewed by expert/patient reviewers or an academic editor, may contain misleading claims, and is likely to undergo changes before final publication, if accepted, or may have been rejected/withdrawn. Readers with interest and expertise are encouraged to sign up as peer-reviewer, if the paper is within an open peer-review period. Please cite this preprint only for review purposes or for grant applications and CVs (if you are the author). Background: When health service providers (HSP) plan to develop ehealth resources for health service users (HSU), the latter’s involvement is essential. However, typical HSP, HSU, and technology developers engaged to produce the resources lack expertise in participatory design methodologies suited to the ehealth context. Furthermore, it can be difficult to identify an established method to use, or how to work stepwise through any particular method. Objective: We sought to summarise the evidence about which methods are most effective and efficient to engage HSU in the development of ehealth resources. Methods: We systematically reviewed accounts of participatory ehealth development projects from 2006 to 2016, in nine bibliographic databases. Studies were assessed for methodological rigour, and selected studies were analysed to explore what types of ehealth resources have been developed using this methodology, which frameworks could be applied throughout the development lifecycle, whether HSU preferences for one method or another had been reported, and what theories supported the intentions of the various projects. Results: The key participatory approaches mentioned in studies were: User Centred Design; CeHRes Roadmap; Medical Research Council (MRC) Guide to Developing and Evaluating Complex Interventions; International Patient Decision Aid Standards (IPDAS) Collaboration and Participatory Action Research (PAR) Framework. Participatory approaches were reported to improve accessibility, engagement, health literacy and usability. Motivation, empowerment and behaviour change theories were included in some ehealth development to improve ongoing engagement with HSU. Conclusions: Only 30 studies out of 603 gave rigorous accounts of their methodology. The majority of studies referred to using participatory design methods without reference to any particular named framework or processes. The lack of formalism in this field of research provides weak direction about good practice in ehealth development projects, and the inconsistency hinders building a stronger evidence base about what methods work well and why in this type of healthcare activity. The dilemma faced by HSPs to ensure meaningful HSU engagement throughout the ehealth development and evaluation is challenged by available resources. In health, evidence-based practice requires a number of years to be established. In the development of the ehealth technology the medium is changing rapidly and new innovations can alter the face of engagement. There is an urgency to develop a framework that supports a participatory design which can be cost and time efficient and meet the criteria of good practice. Clinical Trial: PROSPERO 2017: CRD42017053838

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