Electronic Health Information: Risks, Benefits, Motivations and Barriers for Adolescents and Parents

The 21st Century Cures Act has resulted in adolescents having access to their electronic health information (EHI), including clinical notes, as of April 5, 2021. This EHI access brings major change in healthcare practice that is based on good principles (transparency, openness) but could unintentionally result in harmful consequences. Little research has evaluated the effects of this mandate on adolescents, parents or clinicians. Our study will be the first to review the ethical implantation of EHI access in adolescent care. We will identify the risks, benefits, motivations and barriers to accessing EHI from the perspective of adolescents, their parents and clinicians.

We will conduct in-depth interviews with 40 dyads of parents and adolescents. We will recruit approximately equal numbers of adolescents with and without chronic illness. For adolescents with chronic illness, we will include patients with diabetes mellitus, sickle cell anemia, and inflammatory bowel disease. We will also perform semi-structured interviews with EHI administrators at a representative sample of 68 US children’s hospitals, discussing policies, lessons learned, and pitfalls. We will then use the findings from all interviews to inform a Delphi process with 12 diverse stakeholders. This Delphi process will aim to develop recommendations for policy and practices related to providing adolescents and their parents with access to EHI.

Data collection in progress.