The new study highlights privacy issues in adolescent electronic medical records



About Karen Bloom

Karen Bloom is the chief executive of the AHCJ IT health. An independent journalist in Baltimore, she has written health information stories for publications, for example Pharmacy Practice News,, Clinical Oncology News,, News of gastroenterology and endoscopy,, General Surgery News and Special edition on infectious diseases.

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Internet patient portals for teens can be set up in confidence to provide information on pregnancy testing, sexually transmitted diseases, mental health, and drug and alcohol use, etc. remained in closed access from parents and guardians. But a new study published in the JAMA network of three children’s hospitals showed that more than half of adolescent accounts are inaccessible to parents and guardians.

Research shows that there is still a lot of work to be done both in developing these portals and in educating parents and their teens about them, the authors say.

Study methodology

Participants include Stanford Children’s Health in Pala Alta, California; Radhi Children’s Hospital in San Diego; and the National Children’s Hospital in Columbus, Ohio – all of which allow teens to have accounts on patient portals. Trustees can sign up for proxy accounts.

The researchers used a natural language processing algorithm to analyze all messages sent from patients ’accounts aged 13 to 18 from June 2014 to the end of February 2020 to identify notes sent by parents / guardians. Some manual inspections were also conducted in each institution. The study looked for third-person references to the teen, phrases such as “my child,” or cases where the signature matched the name of the guardian who is in the file.

Take a closer look at the results

The researchers analyzed 25,642 messages sent from 3,429 adolescent accounts in three institutions. After adjusting for the sensitivity and specificity of the algorithm, they found that parents and guardians gained access to 64-76% of all outgoing accounts. Parental access decreased in the age of patients, from 59–64% in the record for children 13 to 14 years of age to 40–50% in those for children 17 to 18 years of age.

Compliance with federal regulations and state laws on the confidentiality and consent of adolescents requires a robust mechanism for sharing protective health information without the knowledge of a guardian, the authors say. Thus, research shows that the portal’s teen accounts that exist today may be lacking.

“The 21st Century Treatment Act has encouraged the exchange of health information with patients, which we fully support and very much want to see happen,” said the study’s senior author, Dr. Natalie Pager, chief medical officer of Stanford Children’s Health and Professor of Clinics of Pediatrics and Medicine at Stanford University in a telephone interview. “It’s right for patients and their families. But we consider this question [of parents accessing their teenagers’ accounts] not recognized … Many parents gain access to information they shouldn’t be, which poses a risk to teens. “

This includes the risk that if teens do not trust that they have a confidential relationship with the provider, they will not seek the help they need, Paigeler said. What’s worse, for some teens there may be a risk of physical abuse or retribution from parents.

According to Paigeler, teens should have their own confidential accounts, and parents can create a trustee that gives them access to other medical information that does not fall into the aforementioned categories. But this is difficult, as state laws regarding consent may differ.

The study did not delve into why parents turned to their children’s records, but Paigeler has several theories. Perhaps patients and parents were confused as to how the portals work. This could be because electronic patient records in electronic form are first established using parent contact information; later accounts may be incorrectly transferred to child information. In addition, some teens initially do not want to manage their health information and pass on their login data to parents. Finally, some parents can secretly check accounts, although Pager says he believes it’s a small part.

The investigator’s idea of ​​the study sparked report for 2019 in the Journal of General Internal Medicine, which examines adult children who have access to parent patient portals. Their intention was not necessarily malicious, Paigeler said, but it could have been the result of parents needing children’s help in navigating portals. Protecting privacy to promote compatibility is a big issue, she said. In other words, how do clinicians mark confidential or personal data in patient records and direct it to the right people, excluding others from them?

Stanford Children’s has begun cleaning up its teen records. First, they check guardians ’email addresses associated with accounts, which is about 60%, said lead author of the study, Dr. Wu Yip, who recently completed a scholarship in clinical computer science at Stanford. Ip, Pageler and colleagues have embarked on a quality improvement project to inform account holders that they must correct entries using teen email addresses, otherwise accounts may be deactivated.

Journalists who write about patient portals for adolescents or, conversely, for the elderly, might ask hospitals about their patient portal registration policy. They can then find out if they are transmitting confidential information (visit notes, lab results, etc.) electronically through a portal suggested by Ip.

Other patient portal news

Office of the National Health IT Coordinator published new information in September on “Individual Access and Use of Patient Portals and Smartphone Health Programs in 2020”. About six out of 10 people across the country gained access to their patient portals, and nearly 40% gained access to their records at least once in 2020, the report said. People who were encouraged by health care providers to use the patient portal approached them at higher rates, and nearly four out of 10 users logged into their portal through a smartphone app.

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