Understanding factors affecting patient and public engagement and recruitment to digital health interventions: a systematic review of qualitative studies.

Siobhan O’Connor,Peter Hanlon,Frances S Mair,Sonia Garcia,Julie Glanville,Catherine A O’Donnell

doi:10.1186/s12911-016-0359-3

Abstract

BackgroundNumerous types of digital health interventions (DHIs) are available to patients and the public but many factors affect their ability to engage and enrol in them. This systematic review aims to identify and synthesise the qualitative literature on barriers and facilitators to engagement and recruitment to DHIs to inform future implementation efforts.MethodsPubMed, MEDLINE, CINAHL, Embase, Scopus and the ACM Digital Library were searched for English language qualitative studies from 2000 – 2015 that discussed factors affecting engagement and enrolment in a range of DHIs (e.g. ‘telemedicine’, ‘mobile applications’, ‘personal health record’, ‘social networking’). Text mining and additional search strategies were used to identify 1,448 records. Two reviewers independently carried out paper screening, quality assessment, data extraction and analysis. Data was analysed using framework synthesis, informed by Normalization Process Theory, and Burden of Treatment Theory helped conceptualise the interpretation of results.ResultsNineteen publications were included in the review. Four overarching themes that affect patient and public engagement and enrolment in DHIs emerged; 1) personal agency and motivation; 2) personal life and values; 3) the engagement and recruitment approach; and 4) the quality of the DHI. The review also summarises engagement and recruitment strategies used. A preliminary DIgital Health EnGagement MOdel (DIEGO) was developed to highlight the key processes involved. Existing knowledge gaps are identified and a number of recommendations made for future research. Study limitations include English language publications and exclusion of grey literature.ConclusionThis review summarises and highlights the complexity of digital health engagement and recruitment processes and outlines issues that need to be addressed before patients and the public commit to digital health and it can be implemented effectively. More work is needed to create successful engagement strategies and better quality digital solutions that are personalised where possible and to gain clinical accreditation and endorsement when appropriate. More investment is also needed to improve computer literacy and ensure technologies are accessible and affordable for those who wish to sign up to them.Systematic review registrationInternational Prospective Register of Systematic Reviews CRD42015029846Electronic supplementary materialThe online version of this article (doi:10.1186/s12911-016-0359-3) contains supplementary material, which is available to authorized users.

Highlights

Numerous types of digital health interventions (DHIs) are available to patients and the public but many factors affect their ability to engage and enrol in them
DHIs range from telehealth and telecare systems [4], to patient portals and personal health records (PHRs) [5, 6], mobile health applications [7], and other online platforms and devices [8]
This paper aims to address the fragmentation of research evidence by systematically reviewing and synthesising the qualitative literature on barriers and facilitators patients’ and the public experience during engagement and recruitment to DHIs

Summary

Introduction

Numerous types of digital health interventions (DHIs) are available to patients and the public but many factors affect their ability to engage and enrol in them. There are factors that help patients and the public to engage with these electronic platforms such as personal motivation to improve health and learn new ways to manage illness [11] Much of this evidence has been generated through quantitative methods, in particular Randomized Controlled Trials (RCTs), which provide little detail or context of the realworld difficulties individuals’ face [12, 13] such as the cost of the technology and issues around privacy and security [14]. Understanding these problems is important as we move from recruiting to RCTs, to engaging and enrolling patients and the public in largescale deployments of digital health in real world settings. This gap in knowledge is often referred to as the second translation gap, moving from initial concept testing and RCTs to full-scale implementation [15, 16]

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