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

GRANT

Conquer Cancer Foundation Career Development Award
07/2022 – 07/2025

KEY PERSONNEL

  • Bryan Sisk, MD, MSCI
    Principal Investigator
  • James M. DuBois, DSc, PhD
    Primary Mentor

PROJECT MANAGER

  • Christine Bereitschaft, MSW
    Clinical Research Coordinator

DESCRIPTION

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.

PUBLICATIONS

Data collection in progress.