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As patient online access to electronic health records becomes the standard, implementation of access for adolescents and parents varies across providers, regions, and countries. There is currently no international compilation of evidence to guide policy decisions in matters such as age limit for access and the extent of parent proxy access.
This paper presents the protocol for a scoping review of different stakeholders’ (including but not limited to end users) perspectives on use, opinions, and experiences pertaining to online access to electronic health records by parents, children, and adolescents.
This scoping review will be conducted according to the Arksey and O’Malley framework. Several databases will be used to conduct a literature search (PubMed, CINAHL, and PsycInfo), in addition to literature found outside of these databases. All authors will participate in screening identified papers, following the research question: How do different stakeholders experience parents’, children’s, and adolescents’ online access to the electronic health records of children and adolescents? Data abstraction will include but will not be limited to publication type, publication year, country, sample characteristics, setting, study aim, research question, and conclusions. The data to be analyzed are from publicly available secondary sources, so this study does not require an ethics review.
The results from this scoping review will be presented in a narrative form, and additional data on study characteristics will be presented in diagrams or tabular format. This scoping review protocol was first initiated by Uppsala University in June 2021 as part of the NordForsk-funded research project NORDeHEALTH. The results are expected to be presented in a scoping review in June 2022. The results will be disseminated through stakeholder meetings, scientific conference presentations, oral presentations to the public, and publication in a peer-reviewed journal.
This is, to our knowledge, the first study to map the literature on the use and experiences of parents’ and adolescents’ online access to the electronic health records of children and adolescents. The findings will describe what benefits and risks have been experienced by different stakeholders so far in different countries. A mapping of studies could inform the design and implementation of future regulations around access to patient-accessible electronic health records.
DERR1-10.2196/36158
Digitalized health records, also called electronic health records (EHRs), contain clinical information (eg, doctor visit notes, lists of medications, and diagnostic information) and are used by health care professionals. Technological advancements have enabled patients to read their EHRs via online patient portals, often called patient-accessible EHRs (PAEHRs), quickly and easily, which promotes patient empowerment. It appears that PAEHRs are becoming the standard [
As PAEHRs continue to be implemented worldwide, vast uncertainty remains in the area of access by parents, children, and adolescents [
For the most part, PAEHRs have been investigated for the general adult population. Effects of PAEHRs are not conclusive, yet indicate benefits including improved medication adherence and self-care, as well as improved relationships between patients and their physicians [
The objective of the proposed scoping review is to identify, categorize, and summarize knowledge about different stakeholders’ (eg, children and adolescents, parents, health care professionals, policy-makers, and designers of patient portals or PAEHRs) use and experiences of PAEHR access for parents, children, and adolescents. Countries are currently at different stages of development and implementation of PAEHRs; therefore, compiling the literature is timely and has, to our knowledge, not yet been undertaken. This scoping review is anticipated to aid policy-makers in designing future regulations around PAEHR access for parents and adolescents, and to potentially improve the design and implementation of PAEHRs to meet the needs of end users.
A scoping review will be conducted using the Arksey and O’Malley [
Through discussion among research team members, the main research question is: How do different stakeholders experience parents’, children’s, and adolescents’ online access to the electronic health records of children and adolescents? We do not limit the question only to children’s and adolescents’ or parents’ experiences but also include other relevant stakeholders including health care professionals and policy-makers. For this review, PAEHR access is defined as access provided via an online patient portal that can encompass the entire electronic record or parts of it (eg, access to test results, clinical notes, or medications). The practice of “open notes” is included in the concept of EHR access [
The literature search will be carried out by an experienced research librarian at Uppsala University. The search strategy, presented in
The search strategy for the scoping review.
The scientific literature will be systematically compiled and the selection will be inclusive, striving to encompass publications and reports that employ a variety of methodologies. Inclusion and exclusion criteria are informed by the review process and will be applied at the study selection stage.
Studies will be included if they meet the following criteria:
Patient user population: parents, children, and adolescents
Population studied: parents, children, adolescents, and health care professionals
Outcomes: use, implementation, and experiences of access or proxy access to PAEHRs
Study design: all study types
Studies will be excluded if they:
Are not written in English
Were published outside the study period
Do not focus on PAEHRs
The research team will identify eligibility criteria and search terms. A software program, Rayyan [
Study characteristics will be identified by the research team and extracted into the Excel spreadsheet created in stage 3. Characteristics will include but will not be limited to publication type, publication year, country, sample characteristics, setting, study aim, research question, and conclusions. All researchers will be able to contribute to the spreadsheet. Ideas emerging during the process will be discussed among the authors in regular meetings set up by the main author.
Results reported in the included studies will be compiled and read multiple times. Results will then be analyzed independently by 2 researchers (JH and MH) using thematic analysis [
Because consultation can provide additional information and insights [
As the scoping review methodology consists of reviewing publicly available materials only, this study is not subject to ethical approval.
The main results of our analysis will be presented in a narrative form focusing on research results to date regarding different stakeholders’ experiences of providing children and adolescents and their parents with online access to their EHRs. Additional data on year, country, study design, study population, and setting will be presented in diagrams or tabular format. This scoping review protocol was first initiated by Uppsala University in June 2021 as part of the NordForsk-funded research project NORDeHEALTH. We expect the results to be presented in a scoping review in June 2022.
The results from this scoping review will aim to inform a variety of stakeholders, including policy- and decision-makers, vendors, designers of patient portals and PAEHRs, and perhaps most importantly, end-user representatives. We aim to describe the benefits and risks experienced by different stakeholders so far in different countries. This knowledge may improve both the design and implementation of future PAEHRs to become more useful to the population, and also guide policy-makers and other decision-makers to provide the right preconditions for future implementations. In both Sweden and Estonia, the current patient portals are being redesigned, and there may be opportunities to influence both portal design and policy development. Therefore, results will be communicated outside the traditional scientific publications, through, for example, seminars and reports focusing specifically on the context in Sweden and Estonia. Results that are of interest to parents, adolescents, and health care professionals (eg, reports on the benefits or risks of record access) will be shared in more easily accessible formats like social media communications, popular science publications, and presentations for practitioners. We hope that this may have a direct impact on how record access is used by health care professionals, parents, and adolescents to increase potential benefits and minimize any risks.
To date, several literature reviews have been performed regarding PAEHRs or open notes in general [
electronic health record
patient-accessible electronic health record
JH wrote the manuscript and designed
None declared.