EHR Confidentiality for Youth Shows Room for Improvement

By Will Boggs MD

January 10, 2020

NEW YORK (Reuters Health) - While most adolescent medicine providers express comfort using their institution's electronic health record (EHR), questions of confidentiality persist, according to results of a national survey.

Several national organizations in the U.S. have published best-practice recommendations for EHR usage in the adolescent age group. But institutions have established differing policies to protect adolescent confidentiality, usually based on their understanding of clinical best practices and their particular state's laws.

Dr. Rachel L. Goldstein of Stanford University School of Medicine, in Palo Alto, California, and colleagues surveyed 225 members of the Society for Adolescent Health and Medicine listserv regarding their institutional EHR policies related to adolescent confidentiality and health-information sharing.

Most respondents were female (70.2%) and white (80.9%) and were physicians (86.9%) or nurse practitioners (9.6%) working in academic medical centers (65.1%) or public/community hospitals (11.0%).

Overall, 95.6% of participants had received formal training on how to use their EHR and 96.1% felt somewhat/very comfortable using it, but only 22.8% had received specific EHR training on how to maintain confidentiality for minors.

Among the 56.1% who were aware of specific features within their EHR to protect minors' confidentiality, 81.7% were moderately or very familiar with those features.

Most respondents (77.8%) used after-visit summaries, which summarize the medical encounter, but the ability to exclude confidential information varied: 18.2% of these users reported automatic exclusion of confidential information, 26.1% required manual removal of sensitive data, and 38.8% had no ability to block or remove any confidential information.

Most of the institutions represented offered patient-portal systems that allow online access to patient medical records for both the patient and their parent/guardian. More than a third of participants reported that minors could sign up without parental/guardian consent, although 69.1% reported a minimum age requirement for signing up.

More than half of participants (58.8%) used an EHR that exchanged information electronically with other institutions, and 20.3% of participants reported that all information (sensitive/confidential or not) within their EHR was shared automatically with these outside institutions.

Among the 58.1% of respondents whose institutions had a policy around the release of medical records for minors when requested by parents/guardians, 15.2% stated that records were released without any review, 54.5% had a process that included a manual review and removal of elements marked confidential, and 18.8% said records were automatically released with the exception of elements previously flagged as confidential.

Overall, 39.6% of respondents were not at all confident that their EHR maintains confidentiality for minors, including 81.7% of respondents with patient-portal systems, the authors report in the Journal of Adolescent Health.

"The current state of most participants' use of EHRs is encouraging; however, much still needs to be done," they conclude. "Advocating for a comprehensive approach supplied by vendors and then implemented in a sensitive manner at the institutional level will enable improved care and outcomes for adolescents seeking health care."

Dr. Lindsay Acheson Thompson of the University of Florida, in Gainesville, who has researched various aspects of adolescent confidentiality but was not involved in the new work, told Reuters Health by email, "This article shows that physicians have a low confidence in their EHRs to protect the confidentiality needs of their patients. I think that institutions need to be clear - are they going to prioritize adolescent confidentiality in their EHR?"

If so, there are a number of purposeful choices that institutions can make, some of which Dr. Acheson and her colleagues detailed in a 2014 paper (

She added that physicians "need to be drivers at their institutions to make active decisions about how they want to protect confidentiality for adolescents."

Dr. Timothy Stablein from Union College, Schenectady, New York, who recently interviewed pediatric healthcare providers about their experiences using EHR, told Reuters Health by email, "The findings from this study suggest that the ability for health care providers to provide platforms to store and disseminate confidential information may at times be compromised by the use of EHRs in the course of adolescent care in particular. When these issues arise, it may require pediatric health care providers to individually or collectively invent solutions to counter these limitations."

"The problem here," he said, "is that there appears to be little consensus among health care providers on how to protect confidential information within the EHR, what solutions are effective, and/or how that information is ultimately disseminated, when, for example, allowing access to patient portals or through exchanges of information with other providers, institutions, and entities."

"When using EHRs, rather than placing the burden on healthcare providers to create work-arounds to protect adolescent patient confidentiality, institutional and system wide solutions must be created in an effort to eliminate confusion about what is and is not protected, confidential, and available when utilizing their full potential and features," Dr. Stablein said.

"Although the EHR has become an indispensable and beneficial tool in healthcare today, under certain circumstances and situations, they have the potential to compromise adolescent confidentiality in particular," he concluded. "Healthcare providers must try to understand these limitations in the systems that they use and inform themselves of the best practices relevant to maintaining confidentiality of health information within the EHR."

Dr. Goldstein was not available for comments.

SOURCE: Journal of Adolescent Health, online December 9, 2019.