Determinants and outcomes of patient access to medical records: Systematic review of systematic reviews
Introduction
Medical records have primarily been kept by clinicians in order to support their clinical work. Recent developments in healthcare technology have provided patients access to and control over their own medical records. Patient-held paper records have been used in different settings [1], and patient access to medical records, in general, has already been a legal right in many countries [[2], [3], [4]]. Increasingly, patient portals [[3], [4], [5], [6]] provide patients with direct access to information in electronic health records (EHRs) of clinicians. Electronic personal health record systems [7,8] (PHRs) provide patients with their own system to manage their personal health information. The Blue Button initiative in the USA enabled patients to download their medical data first as a free text or pdf file [9,10] and later as a structured and standardized electronic format following HL7 C-CDA [11]. In the EU, a similar standard has been developed, called the Patient Summary [12]. Another initiative, OpenNotes [13,14], stimulates clinicians to share their visit notes with patients. Research on these approaches to provide patients access to personal health information addressed various aspects of adoption, such as influence of patient access to EHRs on patients’ health outcomes (e.g. hospital admissions), patient engagement, but also barriers and facilitators to adoption, attitudes of patients and providers towards patients’ access to EHRs, or specific patient groups such as psychiatric patients [[1], [2], [3],[15], [16], [17], [18], [19], [20], [21]]. However, individual studies and the reviews summarizing them only addressed particular aspects, while patient access to medical records involves many interrelated aspects that transcend particular scientific paradigms, such as policy (politics), usability (software engineering) and health outcomes (medicine) of adoption. Therefore, a synthesis of these results is required, to provide a comprehensive overview, and to inform policy-makers and implementers of systems and functionalities that provide patients access to their personal health data.
The Clinical Adoption Framework (CAF) is a general evaluation framework to assess the success of healthcare information system (HIS) adoption in healthcare organisations. In this study, we used the CAF to categorize the information extracted from the literature. [22] As shown in Fig. 1, it addresses the micro level, which encompasses the dimensions quality, use and net benefits of the HIS; the meso level, consisting of dimensions of people, organization and implementation; and the macro level, incorporating dimensions of healthcare standards, legislation, policy and governance, funding and incentives, and societal, political and economic trends. It is hence an integrated framework that covers a wide range of aspects that influence and result from HIS adoption. We use determinants and outcomes as overarching terms to refer to what different studies call e.g. factors, barriers, facilitators, determinants, outcomes, mechanisms, problems, solutions, advantages, disadvantages, costs, or benefits. The determinants are those categories in the CAF that influence or are associated with HIS adoption and the outcomes are the ‘Net benefits’ of HIS adoption.
The purpose of this systematic review of systematic reviews is to provide a comprehensive overview of determinants and outcomes of patient access to and control over their personal medical data, and the adoption of patient portals and PHRs.
Section snippets
Methods
In this section we provide a summary of the methods; further details can be found in the protocol which was registered at PROSPERO under CRD42018084542 [24,25].
Results
In this section, we will first report the study selection. Secondly, we describe the study characteristics. Thirdly, we show the risk of bias of the included studies. Finally, we provide the synthesis of the results on determinants and outcomes of patient access to medical records.
Principal findings
Recent reviews on determinants and outcomes of patient portal and PHR adoption, and patient access to and control over their own medical records reported on all dimensions of the CAF, and mostly on the people and organisations that influence adoption, but less on the higher level of standards, policy, funding, and society. Even though reviews applied different theoretical frameworks and focused on different medical domains, we were able to synthesize them into the overarching CAF. This enables
Conclusion
Determinants and outcomes were synthesized into the CAF. Reviews on patient access to medical records, patient portals, and personal health records mostly addressed people, organization, implementation, HIS quality, HIS use, and net benefits of HIS use. To a lesser extent, healthcare standards, legislation, policy, governance, funding, incentives, and social, political, and economic trends were reported. The results provide a reference when realizing patient access to health records, and
Author’s contributions
RC, NK, RN, and HM designed the study and study protocol. RC, NK, RD, and HM screened references for inclusion and all authors reviewed full-text articles for eligibility. HM extracted all quotes from the reviews which were validated by RC, NK, RN, and RD. RC, NK, and RN reviewed 2 of the first 3 reviews. RD and HM reviewed all reviews. HM prepared the text and carried out the analyses with feedback from RC, NK, and RN. RC, NK, RN, and RD critically reviewed the manuscript. All authors agree to
Funding
This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.
Conflicts of interest
RN, RD and HM work at ChipSoft B.V. RN is manager of the Department of Research and Development (R&D). RD was an intern at Datawarehouse, Department of R&D. HM is software developer of Care Portal, Department of R&D. ChipSoft is a software vendor that develops the health information system HiX. HiX Care Portal is a web application that includes a patient portal. RC and NK declare that they have no known conflicts of interest and are not affiliated with any vendor, patient portal or personal
Summary points
What was already known on the topic?
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Patient access to electronic health records (EHRs) is associated with several interrelated determinants and outcomes. However, no comprehensive overview existed.
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The Clinical Adoption Framework (CAF) is an evaluation framework to assess the success of health information systems adoption.
What this study added to our knowledge?
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We provided an overview of determinants and outcomes of patient access to EHRs, extracted from systematic reviews, by using the CAF.
Acknowledgements
Thanks to clinical librarian Joost Daams for assisting in the development of the search strategy.
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