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Worldwide, patient-centered care is becoming a widely used concept in medical practice, getting more and more attention because of its proven ability to improve quality of care and reduce costs. Although several studies show that patient-accessible electronic health records (PAEHRs) influence certain aspects of patient-centered care, the possible contribution of PAEHR implementation to patient-centered care as a comprehensive concept has not, to our knowledge, been structurally evaluated to date.
The objective of this study is to review whether and how the use of PAEHRs contributes to patient-centered care both in general and among specific population groups.
We followed PRISMA Extension for Scoping Reviews reporting guidelines. We identified literature in 5 databases, using the terms “patient-accessible medical records,” “patient experiences,” and “professional experiences” as key concepts. A total of 49 articles were included and analyzed with a charting code list containing 10 elements of patient-centered care.
Studies were diverse in design, country of origin, functionalities of the investigated PAEHR, and target population. Participants in all studies were adults. Most studies reported positive influence of PAEHR use on patient-centered care; patient accessible health records were appreciated for their opportunity to empower patients, inform patients about their health, and involve patients in their own care. There were mixed results for the extent to which PAEHRs affected the relation between patients and clinicians. Professionals and patients in mental health care held opposing views concerning the impact of transparency, where professionals appeared more worried about potential negative impact of PAEHRs on the patient-clinician relationship. Their worries seemed to be influenced by a reluctant attitude toward patient-centered care. Disadvantaged groups appeared to have less access to and make less use of patient-accessible records than the average population but experienced more benefits than the average population when they actually used PAEHRs.
The review indicates that PAEHRs bear the potential to positively contribute to patient-centered care. However, concerns from professionals about the impact of transparency on the patient-clinician relationship as well as the importance of a patient-centered attitude need to be addressed. Potentially significant benefits for disadvantaged groups will be achieved only through easily accessible and user-friendly PAEHRs.
In the last 30 years, patient-centeredness has grown worldwide in relevance in health care policy, practice, and research. In 1987, Harvey Picker developed the Pickers’ Principles of Patient Centered Care [
Key factors in patient-centered care are responsiveness to the patients’ individual needs and preferences, and partnership between care providers and patients in decision making [
Patient-centered care has been gaining importance because of its proven ability to increase the quality of care, with lower health care utilization as a beneficial side effect [
In the Netherlands, patient-centered care has also taken center stage in the discussion about quality of care, especially in care for youth [
Several reviewers investigated effects of PAEHRs by reporting on a variety of outcomes related to patient health, quality of care, or patient satisfaction [
Since the relationship between the use of PAEHRs and the broad concept of patient-centered care has, to date, received limited attention in reviews, a broad overview of recent literature is required, with inclusion of different study designs. With such a broad perspective, a scoping review is more suitable than a systematic review, as scoping reviews aim to broadly summarize and synthesize evidence instead of finding answers to circumscript questions and including only specified study designs. A scoping review can be helpful to provide direction to future research and search for gaps in knowledge [
Design and reporting of this scoping review were in line with the framework for scoping reviews by Arksey and O’Malley [
Searches, deduplication, and first screening of titles were performed by SJB. In total, 1763 articles were found and screened for eligibility (
Full search string for Scopus, split into three key concepts.
Key concepts | Search string per concept |
Patient-accessible | (“Patient” OR “Patients” OR “client” OR “clients”) AND (“access” OR “online access” OR “accessible”) AND (“record” OR “records” OR “file” OR “files”) |
Medical records | AND “Personal health records” OR “Health Record, Personal” OR “Personal Health Record” OR “Record, personal health” OR “personal health records” OR “Personal Health information” OR “Health Information, Personal” OR “Information, Personal Health” OR “Personal Medical Records” OR “Medical Record, Personal” OR “Medical Records, Personal” OR “Personal Medical Record” OR “Record, Personal Medical” OR “Records, Personal Medical” OR “patient portals” OR “Patient Web Portal” OR “Portal, Patient Web” OR “Portals, Patient Web” OR “Web Portal, Patient” OR “Web Portals, Patient” OR “Patient Internet Portals” OR “Internet Portal, Patient” OR “Internet Portals, Patient” OR “Patient Internet Portal” OR “Portal, Patient Internet” OR “Portals, Patient Internet” OR “Patient Web Portals” OR “Patient Portal” OR “Portal, Patient” OR “Open Notes” OR “Electronic health records” |
Patient experiences AND physician experiences | AND “patient experiences” OR “physician experiences” OR “experiences” OR “experiences, patient” OR “experiences, patients” OR “experiences, physician” OR “experiences, physicians” OR “experiences, professional” OR “professional experiences” OR “outcome assessment (health care)” OR “benefit” OR “satisfaction” OR “patient outcomes” |
Flow diagram of article selection.
Through discussion SJB, AH, and EV came to a charting code list (see
Model of Patient-centered Care, by Scholl et al (2014).
In total, 49 eligible articles were included [
Most articles (n=29) originated from the US [
Apart from record-access, the most common functionalities of the PAEHRs were “electronic messaging” [
One patient-accessible record was paper-based and consisted of a briefcase with all medical information, which was updated after every visit to the clinic [
The outcomes for the 10 coded dimensions of patient-centered care have been summarized in
Summary of results for dimensions of patient-centered care. This table represents, for every explored dimension of patient-centered care, whether reported outcomes point in a positive or negative direction. “Negative” in a pre-post comparative design means “less positive than expected.” In a pre-post or intervention-control design, the term “neutral” refers to the outcome “no difference” or “no significant difference.”
Dimension | Number of studies, n | Descriptive studies, reference number | Comparative studies, reference number | |||
Positive | Negative | Positive | Neutral | Negative | ||
Information | 40 | [ |
N/Aa | [ |
[ |
[ |
Involvement in care | 33 | [ |
N/A | [ |
[ |
[ |
Empowerment | 23 | [ |
N/A | [ |
[ |
N/A |
Communication | 22 | [ |
N/A | [ |
[ |
N/A |
Involvement of family and friends | 14 | [ |
[ |
[ |
N/A | N/A |
Clinician-patient relationship | 22 | [ |
[ |
[ |
[ |
[ |
Access to care | 5 | [ |
N/A | N/A | N/A | N/A |
Coordination / continuity of care | 3 | [ |
N/A | N/A | N/A | N/A |
Integration medical / nonmedical | 0 | N/A | N/A | N/A | N/A | N/A |
Teamwork | 0 | N/A | N/A | N/A | N/A | N/A |
aN/A: not applicable.
bSignificant effect.
cBoth positive and negative aspects reported.
Forty studies investigated if and in what way patients felt more informed about their health after use of a PAEHR. We distinguished 3 different topics: (1) what patients valued in reading records, (2) emotional consequences, and (3) understandability. Seven descriptive studies examined reasons for reading medical records [
Reading their records also provided patients with reassurance [
Six studies investigated if patients understood everything they read and how they felt they did not understand [
Thirty-two studies described the impact of use of PAEHRs on involvement in care. Twenty-three descriptive studies described involvement of patients in their care as a benefit of using a PAEHRs [
Five studies investigated if patient involvement would result in patients finding and correcting errors in their record [
Fourteen studies investigated whether and how family and friends were involved in care through use of PAEHRs. Thirteen descriptive studies reported that patients shared health information with relatives, friends, and health professionals [
In 13 descriptive studies, patients mentioned that they felt more in control of their health or that they could take better care of their own health due to reading their record [
Twenty descriptive studies investigated the effect on communication between patient and health care professional and reported an improvement [
Seven descriptive studies investigated the influence of PAEHR use on time investment, 5 of them reporting no difference [
Seventeen descriptive studies reported on the clinician-patient relationship [
Related to the fear of damaging a therapeutic relationship, some professionals expected that they would report differently if they knew patients could be reading their visit notes. A psychiatrist in one study said: “Sometimes a disbalance occurs, patients ‘directing their care’ and dictating their doctors how to write their notes” [
An access to care dimension was mentioned in 5 qualitative studies [
In 2 qualitative studies [
Since former research suggests that different population groups do not profit equally from the use of PAEHRs [
This review investigates whether and how the use of PAEHRs contributes to patient-centered care, both in general and among specific patient groups. Overall, the articles in this review support the assumption that patient-accessible records contribute to patient-centered care. In all 34 descriptive studies, a positive effect is reported for different dimensions. One descriptive study reported a possible negative effect of PAEHRs on the “therapeutic relationship.” Five out of 22 pre-post or intervention-control studies reported significant positive effects related to the dimensions “information,” “involvement of patients,” or “empowerment.” No significant negative effects were reported.
The studies in this review included adults only. Four studies found that, in particular, disadvantaged groups experienced PAEHR-related benefits [
As we expected, the effect on the different “activities” in the Scholl et al model [
Furthermore, we found topics in our review that were not described by Scholl et al [
Both negative and positive effects were reported for the dimension “patient-clinician relationship.” In particular, professionals in mental health care expressed concerns that the transparency of PAEHRs would damage the patient-clinician relationship [
In opposition to professionals, mental health care patients in our review felt that transparency in a PAEHR strengthened the patient-clinician relationship, given that sensitive information was reported in a respectful way [
In line with this assumption, another study emphasizes the importance of a patient-centered attitude by offering specific recommendations for mental health professionals to strengthen the therapeutic alliance in the context of patient-accessible records [
Previous research suggests that disadvantaged groups might profit less from the introduction of PAEHRs than others because they make less use of PAEHRs [
Our review shows that the use of PAEHRs could enhance patient-centered care, but the effects can be influenced by factors on professional and patient levels. On a professional level, adoption of the principles of patient centered care appears to be crucial for a positive impact of the use of PAEHRs on the patient-clinician relationship. On the patient level, easy access and user-friendliness is important to secure access for all demographics and to facilitate the PAEHR-related benefits that disadvantaged groups might experience.
One of the strengths of this scoping review is that we included all types of designs and we did not focus on “patient-centered care-specific” search terms. As a result, we created a broad overview on the topic. Subsequently, the analysis was guided by the use of selected dimensions of patient-centered care from Scholl et al [
Another strength is the combination of searches from 5 different databases, from both a medical and a social perspective.
A limitation of this review is that, by specifying only “physicians” in our search terms and not “nurses,” “nurse practitioners,” or nonmedical professionals, we could have missed some articles that were relevant to the subject.
One more limitation of this review is that we included articles in only English and Dutch and no unpublished data or grey literature. For example, no articles from Estonia or Japan could be included, although both countries are very active in eHealth and the government of Estonia has implemented a PAEHR system that is being used for every citizen of the country.
The strength of the conclusions in this review also depends on the quality of the individual studies. Therefore, we conducted a global quality check, where aspects of study design and population were assessed. Although a thorough quality appraisal is not common in scoping reviews, a more detailed quality check could have added strength to the review. The global check indicated that, on average, study results could have been biased because of population selection, as virtually all studies included only native speakers and most of the studies made use of convenience sampling.
This review indicates that PAEHRs bear potential to positively contribute to patient-centered care. However, concerns from professionals about the impact of transparency on the patient-clinician relationship as well as the importance of a patient-centred attitude need to be addressed. Potentially high benefits for disadvantaged groups will be achieved only through easily accessible and user-friendly PAEHRs.
Completed PRISMA-ScR Checklist.
Coding list, used for analysis.
Study characteristics, PAEHR functionalities and dimensions of Patient Centered Care.
Analysis of outcomes.
patient accessible health records
13-question Patient Activation Measurement
This research has partly been made possible by ZonMw, project nr 736300019.
JB, AH, and EV participated in the conception and design of the review. JB, AG, and MG performed the search and elimination of titles/abstracts. All authors contributed to the analysis and interpretation of the data. JB and AH lead the drafting of the manuscript, and EV, AG, and MG contributed to critical revisions of the manuscript. All authors approved the final version of the manuscript.
None declared.