Determinants and outcomes of patient access to medical records: Systematic review of systematic reviews

https://doi.org/10.1016/j.ijmedinf.2019.05.014Get rights and content

Abstract

Background

Patient access to electronic health records (EHRs) is associated with several determinants and outcomes, which are interrelated. However, individual studies and the reviews summarizing them have only addressed particular aspects, such as policy, usability or health outcomes of adoption. Therefore, no comprehensive overview exists. Additionally, reviews used different theoretical frameworks, which makes results difficult to compare.

Objective

We aimed to systematically review recent systematic reviews on determinants and outcomes of patient access to EHRs to create a comprehensive overview and inform policy-makers and EHR implementers about the available literature, and to identify knowledge gaps in the literature reviews.

Methods

We searched MEDLINE, EMBASE and PsycINFO for systematic reviews on patient portals, personal health records, and patient access to records that addressed determinants and outcomes of adoption. We synthesized the results from these reviews into the Clinical Adoption Framework (CAF), by mapping quotes from the reviews to categories and dimensions of the CAF, starting with the most recent ones until saturation of the CAF had been reached. The risk of bias in the reviews was assessed using the AMSTAR2 checklist.

Results

We included nineteen reviews from 8871 records that were retrieved until February 19th, 2018. The reviews had a median of 4 (IQR: 4-4) critical flaws according to the AMSTAR2 checklist. The reviews contained a total of 1054 quotes that were mapped to the CAF. All reviews reported on the dimension ‘People’ that can affect adoption (e.g. personal characteristics such as age) and the dimension ‘HIS use’ (health information system use). Most reviews reported the dimensions ‘Organisation’, ‘Implementation’, HIS ‘System quality’, and outcomes of HIS use. However, gaps in knowledge might exist on macro-level determinants and outcomes, such as healthcare standards, funding, and incentives, because few reviews addressed these aspects.

Conclusions

No review covered all aspects of the CAF and there was a large variety in aspects that were addressed, but all dimensions of the CAF were addressed by at least two reviews. Although reviews had critical flaws according to the AMSTAR2 checklist, almost half of the reviews did use methods to assess bias in primary studies. Implementers can use the synthesized results from this study as a reference for implementation and development when taking quality restrictions into account. Researchers should address the risk of bias in primary studies in future reviews and use a framework such as CAF to make results more comparable and reusable.

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?

  • Patient access to electronic health records (EHRs) is associated with several interrelated determinants and outcomes. However, no comprehensive overview existed.

  • 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?

  • 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.

References (46)

  • E. Ammenwerth et al.

    The impact of electronic patient portals on patient care: a systematic review of controlled trials

    J. Med. Internet Res.

    (2012)
  • B. McMillan et al.

    Primary care patient records in the United Kingdom: past, present, and future research priorities

    J. Med. Internet Res.

    (2018)
  • N. Archer et al.

    Personal health records: a scoping review

    J. Am. Med. Inform. Assoc. JAMIA

    (2011)
  • HealthIT.gov. Blue Button 2016 [cited 2019 May 1]. Available from:...
  • T.P. Hogan et al.

    Technology-assisted patient access to clinical information: an evaluation framework for blue button

    JMIR Res. Protoc.

    (2014)
  • Blue Button+ Implementation Guide 2016 [cited 2019 May 1]. Available from:...
  • C. Chronaki et al.

    Interoperability standards enabling cross-border patient summary exchange

    Stud. Health Technol. Inform.

    (2014)
  • K.M. Nazi et al.

    VA OpenNotes: exploring the experiences of early patient adopters with access to clinical notes

    J. Am. Med. Inform. Assoc. JAMIA

    (2015)
  • M.A. Schoevers et al.

    Patient-held records for undocumented immigrants: a blind spot. A systematic review of patient-held records

    Ethn. Health

    (2009)
  • L. Beard et al.

    The challenges in making electronic health records accessible to patients

    J. Am. Med. Inform. Assoc. JAMIA

    (2012)
  • D. Saparova
    (2012)
  • C.L. Goldzweig et al.

    VA Evidence-based Synthesis Program Reports. Systematic Review: Secure Messaging Between Providers and Patients, and Patients’ Access to Their Own Medical Record: Evidence on Health Outcomes, Satisfaction, Efficiency and Attitudes

    (2012)
  • S. Farrelly et al.

    User-held personalised information for routine care of people with severe mental illness

    Cochrane Database Syst. Rev.

    (2013)
  • Cited by (13)

    View all citing articles on Scopus
    View full text