Pediatric Access to Electronic Health Information: Stories from Adolescents and Parents

Symposium Editor: Bryan A. Sisk, MD

Narrative Inquiry in Bioethics will publish a collection of personal stories from parents and adolescents about their experience accessing their electronic health information (EHI) online. 

The 21st Century Cures Act requires healthcare systems to give adolescents and parents access to their EHI. This EHI includes clinical notes, imaging and laboratory results, and scheduled appointments. The goal of providing this EHI access is to support transparency and openness. This new access could result in harmful consequences, though, like disclosing an adolescent’s confidential information to their parents. Adolescents could also see upsetting results online before their doctor or parents can talk to them, like a cancer diagnosis. Parents might feel frustrated because some hospitals block parents from accessing the adolescent’s EHI. 

We want true, personal stories in a form that is interesting and easy to read. You can write your story with your parent or adolescent or by yourself. In your story, please consider some of these questions:

• For adolescents or young adult patients:

• What was good about seeing your EHI? What problems did it cause?
• What things in your EHI would you want to hide from your parents? What other concerns did you have about your parents seeing your EHI?
• If your parents lost access to your EHI, could you manage your medical care without their help? Did your parents use your password to log into your portal account?
• If you didn’t want your parents to look at your EHI, did you have a conversation with them about it? Did you tell them ‘no’? If so, how did they respond?

• For parents:

• What concerns did you have about your child being able to access their EHI?
• Do you think adolescents should be able to restrict parental access? Do you think your child would be comfortable telling you if they didn’t want you to access their EHI?
• Do you feel that if you lost access to your child’s EHI it would negatively affect their healthcare? If you had your access restricted, how did it affect the way you manage your child’s care?
• Have you ever received bills for sending portal messages to your adolescent’s clinicians? If so, how did this affect you?

You do not need to address each of these questions—write about the issues that you think are most important to share. If you are not a writer, tell your story in your own words and our editorial staff will help you.

Stories should be 4 – 10 double-spaced pages or 800 – 2000 words. We plan to publish 12 stories in print. Some additional stories may be published as online-only supplemental material. Along with the stories, we will publish 2 – 4 commentary articles that discuss the stories that are published in the journal.

If you are interested in submitting a story, please send a written proposal to the editorial office via narrativebioethics@gmail.com. You can also call 314-273-2096 to leave a recorded summary of your story. We will give preference to stories that are received by May 13, 2024. To see a finished symposium, you may access the free issue of Narrative Inquiry in Bioethics on Project MUSE. For more information about the journal Narrative Inquiry in Bioethics, the guidelines for authors, and privacy policies, visit our webpage at https://nibjournal.org/submit/guidelines/.

Narrative Inquiry in Bioethics is indexed in PubMed, MEDLINE, Scopus, Web of Science, and PhilPapers. The journal is published by the Johns Hopkins University Press and is available in print and electronically to over 1,200 institutional subscribers via Project MUSE.