The informants' views on patient portal use in adolescent mental health care varied from thinking it could help adolescents in mental health care to fearing it could harm their treatment. Similarly, parents´ access could increase the support given to adolescents, but also threaten their confidentiality. Most informants thought that healthcare providers should have the autonomy to adjust which information should be shared and with whom. However, several informants also requested national guidelines. Some perceived patient portals as a political decision, and not as a need among healthcare providers, while others described it as a necessary development towards democratization and sharing of knowledge.
Can support but also harm adolescents
Some informants expected that a patient portal could increase adolescents´ engagement and improve the support given to adolescents during their treatment. This is in line with previous studies from adult mental health care, where access to clinical notes through patient portals improved the adult patients’ control of health care (18), compliance (13), and the patient-provider collaboration and communication (14, 15, 17, 18). However, other studies from adult mental health care have not found an improved patient-provider relation and collaboration (27–29) or increased patient engagement and involvement (17, 18).
The worries expressed by the informants especially concerned access to clinical notes, and whether such access could lead to harm. Also, studies from adult mental healthcare have reported that providers expected (20, 27) or experienced (17, 18) that the patient’s access to their notes could increase worry (17, 20), confusion (18, 27), or lead to disagreement on the content (20).
Thus, both in the current study and in the literature on patient portal use for both adults in mental health care and adolescent patients outside mental health care, there are arguments pointing to both support and harm. However, this study, as well as some of the referenced literature, illuminates expectations, which are important in the introduction and implementation of patient portals. Still, the actual experience using patient portals can be different. This was shown in a Swedish study where healthcare providers in adult psychiatry were more concerned about potential harm to the patient i.e., worry and confusion, before they started sharing clinical notes (20) than after this was introduced (17). Similarly, in a study from Northern Norway, many concerns about using patient portals in mental health care were not prevalent among healthcare providers who had shared EHR information via patient portals for seven years (13). This points to the importance of not only capturing expectations but also studying the ongoing experiences of using patient portals for adolescents in mental health care.
An additional reason for conducting more research in this area is that adolescents in mental health care can be in an especially vulnerable situation compared to adults. Being an adolescent is a challenging phase in human development, and having mental health problems in this period, adds to this potential vulnerability (30, 31). As such, this first study on expectations of patient portal use should be followed by research on what happens in situations when telehealth solutions like patient portals are introduced for adolescents in mental health care.
Some informants believed that national regulations and guidelines from the clinic on patient portal use and sharing EHR information were needed to ensure equal practice between mental healthcare facilities, as well as a support in challenging situations. At the same time, most informants believed that healthcare providers should have the autonomy to make individual decisions based on clinical assessments. However, Norwegian regulations state that information can be withheld from the patient only if “it is absolutely necessary in order to prevent endangering the patient’s life or serious damage to the patient’s health” (24). Hence, the informants’ request for individual assessment of whether access to a patient portal and EHR information will help or harm the individual patient needs to be seen in the light of the patient’s right to access information about their health.
Access to EHR information
Parents’ access to their child’s patient portal was, on the one hand, perceived by the informants as something that could facilitate better follow-up and support. On the other hand, however, it was perceived as something that could potentially threaten the privacy and confidentiality of the adolescent. This issue has been raised by healthcare providers working with adolescents outside of mental health care (6, 10, 11), and points to the importance of healthcare providers adhering to the needs and integrity of the individual adolescent.
Internationally, great variations exist in regulations on adolescents’ and parents’ access to EHR information (32, 33). In a study comparing 10 countries, both the age of parental automatic loss of access and the age at which adolescents obtained self-access to the EHR varied from 12 to 18 years and older (32). Moreover, variations existed on whether there was a gap or an overlap between the adolescent’s access and parental access. Considering the diversity in regulations on adolescent and parental access to EHR information that exists internationally, there is a need for comparative studies providing insight into whether some practices are more suited for adolescents in mental health care than others.
Digital competency
Several informants said that the management should support healthcare providers in finding ways to introduce and use patient portals. This can be a sensible request, as previous studies have reported that healthcare providers’ introduction and encouragement of a patient portal is an important predictor of patients’ adoption (34, 35). The type of support that informants asked for also included obtaining readiness for and competencies in engaging with digital solutions such as patient portals. A previous study has suggested digital competency to be important for healthcare providers´ uptake and use of electronic healthcare services (36). Furthermore, the implementation of a patient portal, including sharing access with patients, did not in itself increase healthcare providers’ digital competency (37). Hence, as requested by some informants, support from the management with training in patient portal use and forums for collegial discussions appear important for healthcare providers’ adoption and use of patient portals including sharing clinical notes and using telehealth. Based on our results, this should not follow a one-size-fits-all approach, but be tailored to the patient population by e.g., considering the adolescents´ confidentiality and adjustments of access to patient portals and EHR information.
Strengths and limitations
To the best of our knowledge, this is the first study on patient portals for adolescents in mental health care. Another strength is that the study provides new insights into some of the challenges and potentials related to patient portal use for this group, while also discussing actions to consider when planning, implementing, and using patient portals for adolescents in mental health care.
One limitation is that only views and expectations were studied, and not experiences. Another limitation was that adolescent patients in mental health care were not included in the present study. However, the young representatives from the EHR-project´s user panel contributed with views on and experiences from receiving mental health care during adolescence. Further, the fact that managers assisted with identifying some of the informants could potentially have affected the recruitment. However, the informants’ anonymity was ensured, and management´s involvement in recruitment did not seem to influence the informant´s statements as they spoke freely about their views.