Table 1 Empirical research questions by ethical principles, with suggested topics for future study

Respect for Persons

I. Influence adolescents’ perceptions of empowerment?

II. Influence understanding about their diagnosis, treatment, or care plan?

III. Improve recall among adolescents about the treatment or care plan?

I. Influence parents’ perceptions of empowerment?

II. Influence parents’ understanding about their child’s diagnosis, treatment, or care plan?

III. Improve parents’ recall about the treatment or care plan?

• Adolescents’ and parents’ comprehension of EHRs

• Adolescents’ interest in accessing their EHRs and using patient portals

• Adolescents’ and parents’ perceived improvement of knowledge and recall from ORA (using validated or quantitative measures)

• The mechanisms of support of the adolescence-adulthood transition

Nonmaleficence

IV. Decrease adolescents’ willingness to seek healthcare?

V. Increase adolescents’ and parents’ worry and anxiety?

VI. Influence diagnostic accuracy?

IV. Increase parents’ worry and anxiety?

• Adolescents’ and parents’ experiences of distress and anxiety from ORA

• Reducing patient anxiety through increased empathy in EHR language, for example using AI-powered tools

• Whether ORA changes the reporting of differential diagnosis and/or incurs language changes in the EHR

• Whether clinician training in ORA strengthens professional autonomy

• HCPs’ attitudes to and experiences of blocking information from adolescents’ EHRs

Beneficence

VII. Increase adolescents’ adherence to medications?

VIII. Change attendance rates at visits?

IX. Improve adolescents’ wellbeing?

X. Influence rates of medication errors?

V. Change attendance rates at visits?

VI. Improve parents’ wellbeing?

VII. Influence rates of medication errors?

• Whether ORA influences adolescents’ adherence to treatment and medication, as well as in attending appointments

• Adolescents’ and parents’ emotional experiences from reading the EHRs, specifically regarding adolescents with serious health conditions

• Adolescents’ and parents’ experiences of identifying errors in the EHR, and subsequent actions taken to rectify inaccuracies

Privacy and

Confidentiality

XI. Change adolescents' perceptions of privacy about their health information?

XII. Lead to breaches of confidentiality?

XIII. Improve adolescents’ trust with their healthcare provider?

XIV. Influence the relationship between the adolescent, parent, and HCP?

VIII. Lead to breaches of confidentiality?

IX. Influence the relationship between the adolescent patient, parent, and HCP?

• What portal structures strengthen perceptions and experiences of confidentiality of adolescents and parents in EHRs

• Adolescent patients’ and parents’ experiences of approaches allowing adolescents’ control of their EHRs

• Under what clinical contexts, and for which patients, ORA can positively and negatively affect trust among adolescents and parents, and among both respective groups and their HCPs

• How adolescents’ perceptions of confidentiality of adolescents affect their decisions to seek care