13. Confidentiality and Caring for Adolescent Patients in the Age of the 21st Century Cures Act


      Adolescents’ confidence that their health information will be confidential is essential to an open, trusting patient-provider relationship. Some elements of adolescent confidentiality are protected by state and/or federal laws. However, the recent final ruling on implementation of the federal 21st Century Cures Act, which was designed to improve patients’ access to their electronic health records (EHR), lacks sufficient safeguards to protect adolescent confidentiality. As a result of the Cures Act, parents with proxy access to their child’s medical chart can now more easily obtain confidential information that the patient has the right to protect. At many institutions, EHR notes are now automatically shared with patients and proxies, unless providers take specific steps to discuss the adolescent’s confidentiality preferences and implement them by “unsharing” notes. Adolescents whose confidentiality is breached face significant risks. Especially if they already mistrust the medical system, a breach can sabotage their rapport with their provider. Adolescent medicine providers are attuned to these risks, but implementing safeguards to help other providers protect adolescent confidentiality is challenging, despite the guarantees provided by the law. To promote needed system-level EHR changes, we aimed to explore feasible, consistent, and generalizable EHR strategies to improve protection of adolescent confidentiality.


      Our study population included all adolescents presenting to our clinic for new patient visits (n=607 unique patients) between 7-1-20 and 6-30-21. Within this group, we analyzed each electronic chart note using manual review, looking for documentation about confidentiality. We also examined whether the provider documented the patient’s note-sharing preferences and checked the patient’s proxy status in MyChart, our online patient portal. Several interventions were tested to increase the frequency with which we discussed confidentiality with patients. In PDSA cycle 1, we introduced a new smartphrase (a consistent phrase pulled automatically into the EHR templates), that reminded us to discuss confidentiality and proxy access. In cycle 2, we obtained feedback regarding the smartphrase from Adolescent Medicine fellows and faculty and made modifications based on their input. Cycle 3 provided each provider with individualized performance reports on their use of the smartphrase and whether they checked MyChart proxy status. These actions were interpreted as markers that the provider had a conversation with the patient about confidentiality and their proxy preferences.


      Before the QI study, virtually no confidentiality conversations were recorded in the medical record. We set a goal that after the interventions, 25% of new patient visits would include a confidentiality conversation, and we substantially exceeded this goal. After three PDSA cycles, the frequency of documented confidentiality conversations increased to 51% in patients <18 years old and to 61% in patients >18 years old. Documentation of note sharing preference increased to 47% in all patients. Provider checks of MyChart proxy status went from <1% to 32%.


      Our three QI interventions successfully increased the frequency of confidentiality conversations with adolescent patients. Barriers that likely decreased the number of confidentiality conversations were time constraints on visits and physician concerns about parental objections to losing proxy access.

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