Electronic Health Information in Adolescent Oncology: Risks, Benefits, Motivations and Barriers

The 21st Century Cures Act results in adolescents with cancer 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’s purpose is to foster transparency and empowerment but could unintentionally result in harmful consequences. Parents and adolescents are given different types of access at different hospitals and even though these hospitals are offering this access there has been no agreed upon best practices. Because of this different hospitals have different rules for how they give access to teenagers and their parents.

In this study we will identify risks, benefits, motivations and barriers to accessing EHI from the perspective of adolescents, their parents and clinicians. We will perform semi-structured interviews with adolescents diagnosed with cancer and their parents In addition we will interview advanced practice providers and pediatric oncologists who care for adolescents with cancer. We will recruit oncology physicians and advanced practice providers through national consortia. We will audio-record and professionally transcribe all interviews, and perform qualitative analysis of responses.

Data collection in progress.