Keywords
adolescent confidentiality - portal access - diminished capacity - proxy access - electronic health record
Background and Significance
Implementing patient portals in the pediatric setting has been challenging, especially for adolescents and young adults (AYAs).[1]
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[6] Organizations must simultaneously meet federal HIPAA (Health Insurance Portability and Accountability Act) and 21st Century Cures Act regulations giving parents legal access to their children's health information, state adolescent confidentiality laws limiting access to minor sensitive services-related health information, and clinical best practice guidance incorporating the evolving decision-making capacity of AYAs.[7]
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While studies of adult portal access have demonstrated significant impact on care quality and patient safety, similar value has been more difficult to demonstrate for children and their families.[10]
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[12] Despite interest in such access, most health systems have struggled with the disparate state and federal confidentiality laws governing the sharing of protected health information (PHI) of adolescents with their guardians.[8]
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[16] Sadly, most have just given up, denying or significantly limiting online patient portal access to adolescents ages 12 to 17 years old.[17]
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For adolescents with moderate or severe cognitive deficits—secondary to an underlying genetic, congenital, or neurologic condition—who lack the cognitive abilities to understand information, reason, and make decisions through reflection, their caregivers' inadequate access to health information can present grave challenges to their health. While in the daily world of clinical medicine, providers are frequently sharing all necessary health information with the guardians of these patients to facilitate their often-complex care regimens, electronic access to such information is too often restricted. This article will describe one effort that brought together families, clinicians, legal and compliance officers, and information services teams to enable full portal access for guardians of adolescent (12–17 years) and young adults (18 years and older) with “diminished capacity (DC)” seen at a large pediatric academic center.
Objectives
This initiative's objective was to facilitate full electronic health record (EHR) access for proxies of AYA with DC while respecting the regulations supporting adolescent confidentiality.
Methods
The effort to provide portal access to guardians of DC AYAs involved three main steps: (1) defining “DC” with appropriate clinical and legal stakeholders; (2) establishing workflows for designating the DC access class within the EHR, and (3) disseminating the new initiative to providers. To accomplish the first step, organizational stakeholders were identified to include representatives from the children's hospital's family advisory council, health information management systems (HIMS) leadership, compliance and risk management officers, and many of the clinical services who care for these patients. Clinicians included members of the pediatric neurology, child and adolescent psychiatry, development and behavioral pediatrics, and adolescent medicine services. Moderated by the portal project manager, approximately 46-minute sessions were held with the stakeholders, typically represented by one to two members from each of the groups. A definition for DC was agreed upon utilizing consensus decision-making techniques. The second task of establishing workflows for designating the DC access class was accomplished by a subset of the initial workgroup, as well as additional portal team analysts, using iterative techniques.
Following development of these new processes and approval of institutional oversight groups, educational sessions held during division meetings were completed with those specialties expected to have the highest need and/or utilization of the new access class. During these sessions, the workflows were discussed and visualized, tip sheets provided, and concerns addressed. In addition, the workflows were discussed in hospital-wide newsletters, emails, and tips sheets that were placed on the hospital intranet to provide clinician support as needed.
Upon implementation, feedback was obtained regarding the workflow through several means, including direct provider comments to the portal team, solicited commentary from selected divisions, and comments received through the Clinical Decision Meeting which reviews best practice advisory (BPA) usage. To measure portal functionality, reports were generated from the EHR database for five key metrics (provider messaging, results viewing, appointment scheduling, conducting telehealth visits, and medication renewals) by access class.
Results
Defining “Diminished Capacity”
The first step in developing an access class for guardians of AYA with DC was defining “DC.” While discussions among family advisory council members focused on increasing access to a broader group of families, HIMS and compliance and risk officers were most concerned with ensuring that unlimited access was not granted too broadly. In discussions about the AYA patients who would benefit from guardians having full access to their patient portal PHI, clinicians struggled with identifying different categories of DC. Early attempts to distinguish between “mild,” “moderate,” and “severe” DC proved too complex for consensus, and the group eventually agreed on limiting the DC class to those AYA with severe intellectual disabilities. This approach ensured that patients whose guardians most needed access to PHI would receive it, while also reducing the risk that more cognitively intact AYA would not experience inadvertent portal release of sensitive information.
Ultimately, hospital compliance and risk management approved this clinical definition of DC for adolescents between the ages of 12 and 17 years. With these definitions identified, the team was able to move forward with the second step of the process: establishing an access class for guardians of AYA with DC.
Establishing Workflow for Designating the Access Class for DC Proxies
Discussions regarding the DC access class content were straightforward as all stakeholders agreed that content should include full access to PHI as offered to proxies of children less than 12 years of age (e.g., full access to online appointments, medications, vaccinations, problem lists, messages, lab results, and medical records). More challenging was developing the mechanism to designate a patient as eligible for the DC status and ensuring the access class was not inappropriately utilized. Stakeholders wanted to minimize those who could “turn on” this level of access, yet not create undue burdens to the overall activation. Due to legal considerations of rights associated with adolescents between the ages of 12 and 17 years versus young adults of 18 years and older, the two age groups were considered separately.
For adolescents with DC, an administrative International Classification of Diseases, Tenth Edition (ICD-10) code (Z02.89), not otherwise used within the institution, was found that could be entered onto the problem list to indicate the DC status. Once a provider entered this ICD-10 code into the problem list, a BPA alert would fire with two separate functions. First, the BPA would prompt the provider to document the information as to why the DC status was appropriate. For patients less than 18 years, this information consisted of a dot phrase attestation statement, prompted by the BPA to be entered into a designated field, which was developed in conjunction with the institutions' legal team:
“I certify that @NAME@, who is a patient of mine, has diminished capacity as evidenced by severe intellectual impairment that prevents the patient from understanding risks, benefits, and alternatives necessary for obtaining consent. Diminished Capacity, as used for this purpose, is considered a clinical determination and has no bearing on the patient's legal status. Therefore, his/her caregiver(s), should be given full proxy access to his/her MyChart account.”
Second, the BPA would send an inbox message to a MyChart-certified analyst who was then responsible for activating the new access class. All requests were reviewed on a daily basis. Only the analyst, upon ensuring the appropriate information was in place, could activate the DC access class. This approach was used to minimize chances that enhanced access would be granted erroneously.
For young adult patients, the DC access class could be activated only with the presence of conservatorship documentation on file with medical records. Certified HIMS staff would review the provided documentation for the presence and scope of conservatorship papers. This determination was a more structured and formalized workflow to the institution's prior approach to managing information access for young adult patients with DC. Once legal paperwork was approved and the analyst notified by the HIMS team, the DC access class could be activated as discussed for adolescent patients.
The goal for the provider workflow was to ensure that appropriate patients for the DC status were being identified while minimizing the amount of active work done by providers. As mentioned above, for a provider to initiate the DC access class, they would need to input the ICD-10 code into the problem list which would launch a cascade of events to enable the new access status. However, to not rely solely on the provider, a second process based on DC-associated diagnoses was developed. If an associated diagnosis was entered or already in existence on the problem list, it would trigger a BPA to the provider to suggest that the patient might meet criteria for DC status unless already activated. The seven associated diagnoses were reviewed by multiple stakeholders and most often reflected severe developmental delay. Upon receiving the BPA, if the provider assented to further progress, they would be instructed to enter the designated administrative ICD-10 code in the problem list and proceed down the workflow pathway.
Metrics and Feedback
Upon instituting this process approximately 5 years ago, 138 patients have had the DC access class activated for their proxies. Of the activated patients, 77 (56%) were between the ages of 12 and 17 years (mean age of 13.9 years) at the time of activation and 61 (44%) were 18 years or older (mean age of 20.9 years) at the time of activation. [Fig. 1] depicts the spread of ages at the time of activation. Minor patients have been activated across a wide range of clinics (86% in Neurology, 7% in Complex Care, 4% in Gastroenterology, and 1% in General Pediatrics, Pulmonary, Development and Behaviors, and Endocrinology), which likely reflects the multidisciplinary care that many complex patients require.
Fig. 1 Patient age at the time of diminished capacity proxy access activation.
In reviewing the use of portal functionality by proxies with the DC access class, it is notable that all functions are used at much higher rates compared to use by the general population within the institution ([Table 1]). As seen in adults, this may be expected given that the medical needs for AYA with DC are often complex and require more frequent interactions with the medical system.[19] Proxies for young adults with DC also used the portal functionality at rates greater than the institutional average though less than that for adolescent patients. This is not unexpected given that many of the young adults are transitioning their medical care to adult providers who utilize a separate EHR; the interaction with adult providers would not be reflected within the children's hospital's EHR.
Table 1
Use of portal functionality[a] by proxies granted the diminished capacity (DC) access class
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DC proxy access for teen patient (12–17 years old)
N = 77
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DC proxy access for adult patients (18 years and older)
N = 61
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All patients with DC proxy access class
N = 138
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Total patients with a portal account of any access type at institution
N = 278,274
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Messaging of providers
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64 (83%)
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46 (75%)
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110 (80%)
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44%
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Viewing of results
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55 (71%)
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37 (61%)
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92 (67%)
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48%
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Direct scheduling of appointments
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28 (36%)
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21 (34%)
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49 (36%)
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3%
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Conducting appointments via telehealth
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58(75%)
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42 (69%)
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100 (72%)
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24%
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Medication renewal
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43 (56%)
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11 (18%)
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54 (39%)
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3%
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a Number of accounts accessing key function at least once since account activation.
Feedback from providers regarding this process has been positive and there have been no adverse outcomes, defined as complaints of unintended privacy breaches, related to this initiative. Providers appreciate the enhanced proxy access, and many providers would like to expand this to more patients who may not meet the strict DC criteria that were designated. In addition, social work providers have requested to expand the opportunities for the young adult access class beyond conservatorship, such as including medical power of attorney, as conservatorship can be a prohibitively lengthy and expensive process for many families.
Discussion
Multiple studies, commentaries, and guidelines have been published regarding optimal design and deployment of patient portals for AYA.[3]
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[22] With the roll-out of the 21st Century Cures Act Final Rule, national scrutiny has only increased regarding health information sharing for this population.[16]
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[27] This is the first publication to describe an approach to increase health information sharing with families of very complex AYA patients with DC.
There are several interesting lessons learned from this initiative. Providers identified appropriate situations for increased information sharing with guardians of DC patients in a wide range of clinical specialties, with a heavy predominance in neurology clinics. For adolescents, much of the of DC access was activated in the younger years, possibly highlighting the significant disruption that occurs in family information sharing when automatic adolescent confidentiality portal configurations are applied. The DC class was also applied to many young adult patients. While there are different laws that apply to adults and legal conservatorship must be considered, these results highlight that a consistent mechanism within the EHR may help with information sharing for these patients.
Given that this is a single-institution case report, there are several limitations which should be considered when applying lessons learned to other settings. The specific design of the intervention was based on a thorough review and evaluation of the intersection of federal laws (HIPAA and the 21st Century Cures Act) with specific California state laws around minor consent for medical services. Since minor consent state laws vary greatly across the country, aspects of this intervention may need to be adapted for each state.[8]
[19] Additionally, there may be variability in technical resources, technical capabilities of the EHR, and interpretation of regulations at health systems that preclude this intervention being implemented elsewhere.[26] Finally, the evaluation of unintended consequences was limited to review of case reports and privacy complaints. Further study is warranted to determine if this intervention would be helpful in other health care settings in different states, to assess whether enhanced communication and education would affect the levels of adoption in various clinical specialties, and to better characterize the effect of this intervention on family engagement and patient outcomes.
Conclusion
In this case report, we demonstrate an initiative to improve family engagement and empowerment in some of our most complex AYA patients. While this process must be adapted to specific state laws and health systems, we recommend that all health systems and providers who care for AYA investigate whether a similar initiative may be implemented in their own setting to significantly improve the support for complex AYA patients and their families.
Clinical Relevance Statement
Providing portal access for proxies of adolescents and young adults with diminished capacity is a critical step toward enhancing their medical care. Creating a diminished capacity proxy access class, with workflows that support providers in appropriate activation of accounts, allows families to have access to their dependent's health record. Once activated, these families have high engagement with the portal account functionality.
