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Patient accessible electronic health records (PAEHRs) enable patients to access and manage personal clinical information that is made available to them by their health care providers (HCPs). It is thought that the shared management nature of medical record access improves patient outcomes and improves patient satisfaction. However, recent reviews have found that this is not the case. Furthermore, little research has focused on PAEHRs from the HCP viewpoint. HCPs include physicians, nurses, and service providers.
We provide a systematic review of reviews of the impact of giving patients record access from both a patient and HCP point of view. The review covers a broad range of outcome measures, including patient safety, patient satisfaction, privacy and security, self-efficacy, and health outcome.
A systematic search was conducted using Web of Science to identify review articles on the impact of PAEHRs. Our search was limited to English-language reviews published between January 2002 and November 2014. A total of 73 citations were retrieved from a series of Boolean search terms including “review*” with “patient access to records”. These reviews went through a novel scoring system analysis whereby we calculated how many positive outcomes were reported per every outcome measure investigated. This provided a way to quantify the impact of PAEHRs.
Ten reviews covering chronic patients (eg, diabetes and hypertension) and primary care patients, as well as HCPs were found but eight were included for the analysis of outcome measures. We found mixed outcomes across both patient and HCP groups, with approximately half of the reviews showing positive changes with record access. Patients believe that record access increases their perception of control; however, outcome measures thought to create psychological concerns (such as patient anxiety as a result of seeing their medical record) are still unanswered. Nurses are more likely than physicians to gain time efficiencies by using a PAEHR system with the main concern from physicians being the security of the PAEHRs.
This review implements a novel scoring system, which shows there is a lack of rigorous empirical testing that separates the effect of record access from other existing disease management programs. Current research is too targeted within certain clinical groups’ needs, and although there are positive signs for the adoption of PAEHRs, there is currently insufficient evidence about the effect of PAEHRs on health outcomes for patients or HCPs.
Modern technology is changing the role of the passive patient to a more informed and engaging stakeholder in their own care [
The use of patient accessible electronic health records (PAEHRs) has been considered by health organizations since the early 1990s [
One potential reason is that research has still not resolved whether patients want to access their medical records. Assuming patients would like access to their records, it is not yet known how helpful their medical record (in its typical current form) will be to them and whether patients will understand its content [
To date, research on the impact of PAEHRs has been focused on a particular clinical group, or on a limited number of outcome measures, from either the perspective of patients or doctors. Furthermore, no data have been published regarding the impact of changes in information supply—whether qualitative or quantitative—on patients’ psychological status, for example, their anxiety about their health [
We searched English-language articles indexed in any databases in Web of Science with a publication date between January 2002 and November 2014. Potentially relevant review articles were identified using a combination of medical subject headings, free text phrases, and Boolean searches. These included “review*” with (1) “patient access to records” (n=49 citations), (2) “patient portal” (n=18 citations), and (3) “patient accessible” (n=6 citations) across all Web of Science databases, including Web of Science core collection, MEDLINE, and BIOSIS Citation Index. This allowed us to focus the current paper as a review of reviews within the existing literature resulting in 73 citations. The references of selected reviews were also examined to search for additional articles satisfying inclusion criteria (n=1).
We defined PAEHRs as patient accessible information held by the physician and/or health care system. We included systematic reviews that assessed the effect of PAEHRs on a variety of quality and clinically related outcome measures in adult populations. The reviews investigated patients suffering chronic disease such as diabetes and hypertension as well as patients seen in primary care. Inclusion criteria included suitable research questions, description of methods supporting the paper as a review, and reported a narrative on the impact of PAEHRs. Exclusion criteria were non-English, non-peer-reviewed, duplicates, non-empirical, and papers with a non-electronic use of record access or if the focus of the paper was on the design of a patient portal system. The majority of citations were excluded because they did not provide a review of the existing literature on patient/HCP outcome measures based on a review of the abstract and/or study title (
Flow diagram of study methodology.
A scoring system was developed to weight the impact of an outcome measure quantitatively and thereby investigate the impact of PAEHRs by individually assessing their impact on each outcome measure described in the reviews. These outcome measures were subsequently categorized forming 16 measurable domains (
The systematic search provided ten review articles reporting on PAEHR implementations across different health care contexts and clinical groups (
Frequency of all outcome measures across the 8 reviews analyzed in this study. The number of times a review (y-axis) reported on any outcome measure (black bar) against the number of times these outcome measures were found to have a positive impact (gray bar).
Across reviews, we found some uncertainty regarding whether access to PAEHRs makes a difference and whether patients actually want access to their PAEHRs (
The frequency of patient outcomes (black bars) against frequency of positive change (gray bars); eg, usefulness/effective of record access (RA) has been investigated 122 times as an outcome measure with only 66 of those investigations reporting a positive impact (gray bar). We therefore infer that the proportion of black on the horizontal bars illustrates that there are studies that have found RA to have a negative impact or at least no impact on the outcome factors.
The usefulness/effectiveness of PAEHRs included outcomes such as the usefulness, interoperability, and adoption rate. A more detailed list can be found in
Nyugen et al reported that patients questioned the usefulness of PAEHRs because they were not well designed and did not integrate well with other existing clinical systems, for example, the National Health Service (NHS) HealthSpace [
Patient satisfaction was investigated with outcomes such as mood states and satisfaction with care [
A barrier to PAEHR uptake is poor patient satisfaction with a PAEHR system. Satisfaction can be a result of various aspects of patient experience, such as the (perceived) quality of care, consultation, or information provided [
Self-efficacy involved various aspects that encompass a patient’s beliefs about how they feel, including patient involvement, communication, and patient empowerment as a result of PAEHR access. Overall, we found 67% (31/46) of positive changes as a result of PAEHR use across all self-efficacy domains, as made up by patient involvement (67%, 10/15), patient empowerment (78%, 18/23), and patient communication (38%, 3/8).
The most common reasons that patients wanted to look at their medical records were to see what their physician said about them (74%), to be more involved in their health care (74%), and to understand their condition better (72%) [
Psychological outcomes examined across reviews included measures of anxiety, depression, contentment, and quality of life, using behavioral measures such as the Spielberger State-Trait Anxiety Inventory and the European Organization for Research and Cancer quality-of-life questionnaire (EORTC QLQ-C30) [
Health outcomes/behavior include diet, alcohol intake, medication changes, and smoking or exercise habits and are different to “clinical outcomes”, which refer to outcomes that can be empirically tested such as hemoglobin A1c levels. Giardina et al’s review shows a typical pattern of PAEHR impact, whereby they found a mix of results relating to specific clinical measures (such as blood pressure and various diabetes measures) with 50% (2/4) of studies reporting a positive change in clinical measure [
Ammenwerth et al found that the impact of PAEHR access on health outcomes is limited with respect to impact on clinical outcome, health resource consumption, patient adherence, and patient-physician communication. They report that the parameters studied did not show a statistically significant difference between intervention and control groups and in particular, no statistically significant changes could be observed for parameters related to clinical outcome. Ammenwerth’s findings suggest that the available evidence does not support the assumption that PAEHRs improve patient care [
There were a number of articles that evaluated the benefit of PAEHRs from the HCPs’ perspective (
Several of these, in addition to stating a qualitative benefit, described the measurable impact of any benefit as outcome measures including workload, privacy and confidentiality concerns, cost, and communication. These are described in more detail below.
Frequency of studies showing a positive change (black bars) and negative/no change (white bars) after patients were given record access from the point of view of doctors and service providers.
The poor uptake of electronic health records (EHRs) may be driven by HCPs who are wary of patient access to medical records, fearing it may cause patient anxiety. De Lusignan et al found eight studies where physicians feared that PAEHR access without a physician available to interpret the information might cause patients to worry [
These concerns are also extended to the security of the electronic records, with HCPs reporting professional concerns about privacy and confidentiality in 16 studies of de Lusignan’s review [
HCPs do not want changes to the current medical record system to negatively impact their time [
Poissant et al’s review focused on the effects of PAEHR access on HCPs documentation time. They found that that decreased documentation time in a PAEHR project is not likely to be realized, especially for physicians. From a total of 23 studies included in their review, they found that 11 studies examined the impact of PAEHRs on time efficiencies of nurses, of which six studies found that nurses are more likely than physicians to gain time efficiencies by using a computer system to document patient information. Two studies found that bedside PAEHR increased documentation time, and one study reported different results depending on the specific content of the information being documented [
With respect to physicians, ten studies examined the impact of PAEHR on time efficiencies of physicians. Poissant et al found that using a PAEHR system increased physician documentation time by 17%. Of their studies, 60% (6/10) reported significant results in the direction of unfavorable impact on initial visit time, and 10% (1/10) lacked sufficient information to identify whether the results were significant. In the remaining three studies, there were no significant differences between computer and paper documentation time [
Improving doctor-patient relationship is one of the few outcomes that can be investigated from a physician point of view, yet studies still report how doctor-patient relationships improve from the patient point of view. Ferreira et al report only one study that investigated doctor-patient relationships. They found that the majority of doctors (and patients) were unanimous in their belief that the paehr access was positive for both physicians and patients and improved the level of communication between them [4]. Furthermore, Ferreira et al report three randomized clinical trial studies whereby hcps found access to paehrs via the internet easy to use, useful, and considered that it could improve their communication with other HCPs [4].
Fewer studies across the reviews examined PAEHRs from the perspective of the service provider (eg, a hospital providing PAEHR access). In one study, Poissant et al found that using PAEHRs for writing all inpatient orders significantly lowered patient charges and hospital costs [
Apart from patients, HCPs, and service provider factors, we considered study design, which informs the quality of the evidence analyzed in our review. Poissant et al reviewed 23 papers of which only 5 were randomized controlled trials (RCT), with other studies being posttest control studies (n=6), and one-group pretest-posttest designs (n=12) [
Not all studies highlighted the historically small proportion of randomized studies. In Giardina et al’s more recent review, however, 20 studies were RCTs with only seven studies being uncontrolled observational studies [
The systematic reviews included in our synthesis aimed to investigate the effect of record access on various outcomes. We found that these reviews showed mixed outcomes in aspects of patient safety, usefulness, satisfaction, and self-efficacy across patients and HCPs. This is typically represented by Giardina et al’s review, who found an absence of positive evidence on these outcome measures, with only 50% of studies showing positive changes with record access [
We next highlight some of the issues that surround the study of patient access to their medical records in terms of both technical and scientific rigor, which leads to the root of the problem: for such a large problem, there is very little data-driven evidence coming from a large population. We believe a large factor contributing to the lack of success in PAEHR access has been a lack of data-driven evidence about the opinions, wants, and needs of large clinical consumer groups. This setback comes to the heart of the issue in this field: PAEHR developers are still not clear whether providing patients with record access makes a difference to either the patients themselves or their physician.
Current research is targeted to certain clinical groups and their needs, which makes the findings difficult to implement across a large non-disease-specific population. More than half of the patient portal evaluations reviewed by Otte-Trojel were targeted at chronic disease patients, such as the management of diabetes, hypertension, and depression [
A large proportion of studies that investigate the impact of PAEHRs on various outcome measures follow a quasi-experimental design implementing interviews and/or surveys to measure the impact of each intervention. There is the potential to implement better quality study designs and use more objective and rigorous measuring techniques to determine whether a cause and effect relationship exists between PAEHRs and outcome measures. Future research should examine the processes of PAEHR and their direct effects by implementing a pretest and posttest design where participants are tested on a specific set of outcome measures before and after exposure to a PAEHR system.
Research should also aim to address our understanding of how PAEHRs can bridge the gap between patient and doctor with a focus on using up-to-date technologies. Over the last 20 years, there have been large technological improvements, both in terms of hardware and software. As a result, research carried out in the last century may not be comparable with modern day technologies. We found that a large proportion of studies that investigated the effects of PAEHRs were published between 1996 and 2005. The implementation of PAEHRs should no longer be a technological problem as the technology has been available for some years now [
Our study focused only on English language reviews, which neglects PAEHR advancements from other parts of the world. Furthermore, our review of reviews covers a small overall evidence base compared to a systematic review focused on one group (eg, patients) and a lack of quantitative synthesis is arguable, as the reviews presented heterogeneous datasets/studies. However, we believe that the reviews analyzed here cover a large number of primary studies across a variety of outcome measures and our scoring system provides a quantifiable way of synthesizing the literature. PAEHR systems conceptually vary, and our review brings together results across a variety of PAEHR systems, as do the reviews that make up our work, which could be contributing to the nature of the results. The small number of RCTs investigating patient access to their medical records was further limited by the small sample sizes in the studies used in this review, therefore compromising the quality of a scientific study. However, there is currently little solid evidence from RCTs of proven effectiveness in improved patient health outcomes through the use of PAEHRs [
Our synthesis of available systematic reviews examined the impact of patient access to electronic medical records and revealed few overarching results. There was minimal evidence to support the universal use of PAEHRs both from a patient or HCP point of view; however, PAEHRs appear to have a positive impact on patient empowerment. Patients appear to have positive views after using PAEHRs and the information quality in PAEHRs is positive, although major drawbacks include security, privacy, and confidentiality concerns. HCPs also appear to be divided in terms of whether using a PAEHR reduces their workload. The topic of PAEHRs appears to be one that divides both patients and HCPs and is certainly a field where more rigorous research is needed to evaluate practice and improve system design and implementation.
Definitions of outcome measures across synthesized reviews.
Evidence synthesis overview.
electronic health record
health care provider
patient accessible electronic health records
randomized controlled trial
This work was supported by the Sowerby Foundation (UK). Author NS’s research was supported by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care South London at King’s College Hospital NHS Foundation Trust. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.
SRJ designed and performed the review and analyzed data. SRJ, RC, NS, EM, and AD wrote the manuscript.
Author NS delivers regular patient safety and human factors training on a consultancy basis to hospitals in the United Kingdom and internationally.