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 [1-5], as an increasing number of patients worldwide gain access to their records [6]. Today, health institutions in over 15 countries are providing patients with online access to their medical records via secure online portals [4]. Furthermore, a recent US policy of “open notes” mandates health care providers by law to share the records with patients [7]. In response to this rapid development, legal frameworks are continuously being adapted to improve use and ensure privacy of such PAEHR systems [4,8].

As PAEHRs continue to be implemented worldwide, vast uncertainty remains in the area of access by parents, children, and adolescents [9]. This is evident from the variation in the age of a child at which parents gain and lose access as well as the age at which young patients can access their records on their own [4]. On a national level, some countries (eg, Sweden and Finland) hold nationally regulated systems while others use a case-by-case approach (eg, the United States and New Zealand) [4]. In some countries, parents and guardians (herein, referred to as parents) are offered access while in other countries, parents are blocked from accessing records by law when their children reach a certain age threshold. In Sweden, for example, a parent has default access to their child’s PAEHR until the child turns 13 years old, and the age limit for accessing one’s own data is 16 years. Thus, no one has access to the child’s EHR when the child is between 13 and 15 years of age. At this point, adolescents in Sweden can decide to provide their parent(s) with continued access to their records through an administrative process requiring approval by a health care professional. In Australia, on the other hand, adolescents can make similar decisions with a click on their computer. In France, adolescents receive access at 18 years of age when, in turn, the parent loses access. Decisions about earlier access in France may also depend on the perceived maturity of the minor. In many countries and regions, a lack of user continuity of access is apparent [4]. Currently, there is no international consensus on PAEHR regulations for 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 [3,10,11]. However, a growing body of literature is exploring access to PAEHRs for parents, children, and adolescents in particular. Patient online access to EHRs during the transition from child to adult is complex; parental access, while often appreciated by parents [12], may lead to ethical challenges. For example, some health information may be considered sensitive by adolescents, such as health care data pertaining to the disclosure of alcohol or drug abuse, sexual activity, or stigmatized illnesses such as anxiety or depression. Adolescents have also been observed to withhold information from health care professionals if they are uncertain about who may access it [13,14]. Furthermore, it has been suggested that adolescents’ acceptability of parental PAEHR access will vary depending on the relationship with their parent(s) [15]. With regard to adolescents’ own access, a strong desire for control has been expressed [16] while health care professionals have expressed concerns [17]. Therefore, while it appears that PAEHR access offers information transparency that might contribute to patient empowerment and enhanced health care [3,18], evidence suggests the adolescent population requires targeted analysis.

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 [19] framework. The framework includes 6 stages: (1) identifying the research question; (2) identifying relevant studies; (3) study selection; (4) charting the data; (5) collating, summarizing, and reporting the results, and (6) consulting with relevant stakeholders. Methodological comments on the framework will be consulted during the process to enhance the method [20-22].

As the scoping review methodology consists of reviewing publicly available materials only, this study is not subject to ethical approval.