Abstract
IntroductionAn increasing focus on personal electronic health records (PHRs) offers healthcare benefits for patients, particularly those in undeserved and marginalised populations, who are at risk of receiving less effective healthcare, and may have worse health outcomes. However, PHRs are likely to favour text, technical and health literate users, and be less suitable for disadvantaged patients. These concerns have prompted this review of the literature, which seeks evidence about barriers to the adoption and continued use of PHRs, the nature of the evidence for those barriers, and the stage of PHR implementation where particular barriers apply.MethodsSearches in PubMed, Embase, CINAHL and ProQuest databases were used to retrieve articles published in English after 2003 in a refereed journal, or presented in a refereed conference or scientific meeting. After screening to remove items which were out of scope, the phase of the PHR implementation, the type of investigation, and PHR barriers were categorised using thematic coding.ResultsThe search retrieved 395 items; screening identified 34 in-scope publications, which provided evidence of 21 identified barriers to patient adoption and continued use of PHRs, categorised here as Individual, Demographic, Capability, Health-related, PHR or Attitudinal factors. Barriers were identified in most phases of PHR implementation, and in most types of study. A secondary outcome identified that eleven of the publications may have introduced a bias by excluding participants who were less affluent, less capable, or marginalised.ConclusionsPHR barriers can interfere with the decision to start using a PHR, with the adoption process, and with continued use, and the impact of particular barriers may vary at different phases of PHR adoption. The complex interrelationships which exist between many of the barriers is suggested in some publications, and emerges more clearly from this review. Many PHR barriers appear to be related to low socioeconomic status. A better understanding is needed of how the effect of barriers is manifested, how that effect can be countered, and how planning and implementation of PHR initiatives can make allowance for patient level barriers to PHR adoption and use, with appropriate actions to mitigate the effect of those barriers for more disadvantaged patients.
Highlights
An increasing focus on personal electronic health records (PHRs) offers healthcare benefits for patients, those in undeserved and marginalised populations, who are at risk of receiving less effective healthcare, and may have worse health outcomes
After removing 80 duplicates, 395 publications remained for initial screening. This resulted in the exclusion of 263 records, leaving 132 full text articles to be evaluated for eligibility. This evaluation removed 98 articles which provided no direct evidence about PHR barriers or did not address patient barriers to PHR adoption and use, and literature reviews
This review has found evidence of a range of barriers which interfere with the adoption and continued use of PHRs, with 111 instances of 21 distinct barriers identified across 34 publications
Summary
An increasing focus on personal electronic health records (PHRs) offers healthcare benefits for patients, those in undeserved and marginalised populations, who are at risk of receiving less effective healthcare, and may have worse health outcomes. PHRs offer a number of benefits including better access to data and information, improved communication between patients and providers, the empowerment of patients, and opportunities for health self-management (Tang & Lansky, 2005; Pagliari, Detmer & Singleton, 2007). These benefits are certainly worthwhile, for disadvantaged patients, who face challenges in receiving safe effective healthcare (Adler & Newman, 2002), and who are likely to have worse health outcomes than more privileged patients (Olshansky et al, 2012). The use of specialised medical language within a PHR can marginalise non-specialist users (Showell, Cummings & Turner, 2010), and in Australia, patients have largely been left out of discussions about policies affecting national PHR developments (Showell, 2011)
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