Adult patients’ experiences of using electronic personal health records for self-management of chronic non-communicable disease: a qualitative systematic review

Abstract

Objective: The objective of the systematic review was to identify and synthesise the best available evidence on adult patients’ experiences of using electronic personal health records (e-PHRs) for chronic non-communicable disease self-management. Introduction: Self-management is a key component of chronic non-communicable disease management. One of the strategies to support self-management in patients with chronic non-communicable disease is the use of e-PHRs. Electronic personal health records offer patients the opportunity to actively engage with their own health management, promote continuity of care and collaboration through disease tracking, and provide patients and providers with an ongoing connection. For e-PHRs to be adopted and their benefits for chronic non-communicable disease management maximised, they should align with patients’ values and preferences. Methods: The systematic review was conducted in accordance with the Joanna Briggs Institute (JBI) methodology for systematic reviews of qualitative evidence, with meta-aggregation as the method of synthesis. The review included qualitative studies that explored the experiences of adult patients (aged 18 years and over) with a chronic non-communicable disease who had used e-PHRs for the self-management of their condition. Published studies were retrieved following searches conducted in CINAHL, PubMed, PsycINFO, Embase and Scopus. Grey literature was also considered. Critical appraisal and data extraction were conducted using the appropriate JBI tools. Studies were included, regardless of their methodological quality. Extracted data were aggregated and analysed to produce a set of synthesised findings that were used to develop evidence-informed recommendations for the use of e-PHRs in chronic non-communicable disease self-management. Results: Fifteen studies that considered adult patients’ (n= 412) experiences of using e-PHRs for chronic non-communicable disease self-management were included in the review. A total of 113 findings were extracted and aggregated into 17 categories from which four synthesised findings were developed: 1) Electronic personal health records can strengthen patient-practitioner relationships and support personcentred care when both patients and practitioners engage in productive and transparent communication built on mutual trust; 2) The versatility of e-PHR functions can support self-management of various chronic diseases; 3) Adoption of e-PHRs is dependent on individual patient characteristics, and may be compromised if patients’ expectations remain unmet, there were unintended consequences that hinder use, and patients believe e-PHRs are unnecessary for their care needs; and 4) Tailoring e-PHRs to the design preferences, training and education needs of patients with chronic disease through developer-user collaboration may facilitate optimal use of e-PHR. Conclusions: Electronic personal health records are an emerging technology that have the potential to empower patients and facilitate shared decision-making with their health practitioners. The findings of this review suggest that to facilitate adoption of e-PHRs, patients should be proactive in raising and discussing their concerns with healthcare practitioner (HCPs). Additionally, HCPs should learn appropriate ways of communicating with their patients in order to build trust, maintain transparency, and offer reassurance for effective patient and provider encounters. Awareness of the various functions of e- PHRs that are the most useful for the management of a specific chronic disease will assist patients and their providers in making informed decisions regarding which functions best fit their needs and requirements. Adoption of e-PHR may be optimised when the patient’s individual characteristics or concerns around their specific chronic disease needs are understood. The findings of this review also suggest that patients require tailored training and education programs which are focused on the technical and non-technical aspects of e-PHR use in chronic disease management. Creating avenues where health information technology developers can engage with patients and obtain their input in relation to the design or modification of e-PHRs can yield useful information that can increase e-PHR adoption. Further studies exploring the experiences of e-PHR use for other prevalent chronic conditions such as obesity, asthma and kidney disease may provide valuable contributions for the enhanced use of e-PHR for selfmanagement. Future studies should also aim to adhere to well established and robust qualitative methodologies, which is a significant issue identified in the current review. Furthermore, to assist future qualitative evidence synthesis and strengthen findings for subsequent systematic reviews, future research should focus on advancing efforts to create a standardised e-PHR taxonomy.