Providing Online Portal Access to Families of Adolescents and Young Adults with Diminished Capacity at an Academic Children's Hospital: A Case Report.

BACKGROUND: For caregivers of adolescents and young adults with severe cognitive deficits, or "diminished capacity," access to the medical record can be critical. However, this can be a challenge when utilizing the electronic health record (EHR) as information is often restricted in order to protect adolescent confidentiality. Having enhanced access for these proxies would be expected to improve engagement with the health system for the families of these medically complex adolescents and young adults. OBJECTIVES: To describe a process for granting full EHR access to proxies of adolescents with diminished capacity and young adults who are legally conserved while respecting regulations supporting adolescent confidentiality. METHODS: The first step in this initiative was to define the "diminished capacity" access class for both adolescents and young adults. Once defined, workflows utilizing best practice alerts were developed to support clinicians in providing the appropriate documentation. In addition, processes were developed to minimize the possibility of erroneously activating the diminished capacity access class for any given patient. To enhance activation, a support tool was developed to identify patients who might meet the criteria for diminished capacity proxy access. Finally, outreach and educations were developed for providers and clinics to make them aware of this initiative. RESULTS: Since activating this workflow, proxies of 138 adolescents and young adults have been granted the diminished capacity proxy access class. Approximately 54% are between 12 and 17 years with 46% 18 years and older. Proxies for both age groups have engaged with portal functionality at higher rates when compared to institutional rates of use by proxies of the general pediatric population. CONCLUSION: With this quality improvement initiative, we were able to enhance EHR access and engagement of families of some of the most complex adolescent and young adult patients without inadvertently compromising adolescent confidentiality.

Creating a Guardrail System to Ensure Appropriate Activation of Adolescent Portal Accounts.

The parent of an adolescent patient noticed an upcoming appointment in the patient's portal account that should have remained confidential to the parent. As it turned out, this parent was directly accessing their child's adolescent patient portal account instead of using a proxy account. After investigation of this case, it was found that the adolescent account had been activated with the parent's demographic (i.e., phone/email) information. This case illustrates the challenges of using adult-centric electronic health record (EHR) systems and how our institution addressed the problem of incorrect portal account activations.Confidentiality is fundamental to providing healthcare to adolescents. To comply with the 21st Century Cures Act's information blocking rules, confidential information must be released to adolescent patients when appropriate while also remaining confidential from their guardians. While complying with this national standard, systems of care must also account for interstate variability in which services allow for confidential adolescent consent. Unfortunately, there are high rates of guardian access to adolescent portal accounts which may lead to unintended disclosure of confidential information. Therefore, measures must be taken to minimize the risk of inadvertent confidentiality breaches via adolescent patient portals.Our institution implemented a guardrail system that checks the adolescent patient's contact information against the contact information of their parent/guardian/guarantor. This guardrail reduced the rate of account activation errors after implementation. However, the guardrail can be bypassed when demographic fields are missing. Thus, ongoing efforts to create pediatric-appropriate demographic fields, clearly distinguishing patient from proxy, in the EHR and workflows for registration of proxy accounts in the patient portal are needed.

Ensuring Adolescent Patient Portal Confidentiality in the Age of the Cures Act Final Rule.

PURPOSE: Managing confidential adolescent health information in patient portals presents unique challenges. Adolescent patients and guardians electronically access medical records and communicate with providers via portals. In confidential matters like sexual health, ensuring confidentiality is crucial. A key aspect of confidential portals is ensuring that the account is registered to and utilized by the intended user. Inappropriately registered or guardian-accessed adolescent portal accounts may lead to confidentiality breaches. METHODS: We used a quality improvement framework to develop screening methodologies to flag guardian-accessible accounts. Accounts of patients aged 12-17 were flagged via manual review of account emails and natural language processing of portal messages. We implemented a reconciliation program to correct affected accounts' registered email. Clinics were notified about sign-up errors and educated on sign-up workflow. An electronic alert was created to check the adolescent's email prior to account activation. RESULTS: After initial screening, 2,307 of 3,701 (62%) adolescent accounts were flagged as registered with a guardian's email. Those accounts were notified to resolve their logins. After five notifications over 8 weeks, 266 of 2,307 accounts (12%) were corrected; the remaining 2,041 (88%) were deactivated. CONCLUSIONS: The finding that 62% of adolescent portal accounts were used/accessed by guardians has significant confidentiality implications. In the context of the Cures Act Final Rule and increased information sharing, our institution's experience with ensuring appropriate access to adolescent portal accounts is necessary, timely, and relevant. This study highlights ways to improve patient portal confidentiality and prompts institutions caring for adolescents to review their systems and processes.