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

Abstract

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.

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] [2] [3] [4] [5] [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] [8] [9]

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] [11] [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] [13] [14] [15] [16] Sadly, most have just given up, denying or significantly limiting online patient portal access to adolescents ages 12 to 17 years old.[17] [18]

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

	DC proxy access for teen patient (12–17 years old) N = 77	DC proxy access for adult patients (18 years and older) N = 61	All patients with DC proxy access class N = 138	Total patients with a portal account of any access type at institution N = 278,274
Messaging of providers	64 (83%)	46 (75%)	110 (80%)	44%
Viewing of results	55 (71%)	37 (61%)	92 (67%)	48%
Direct scheduling of appointments	28 (36%)	21 (34%)	49 (36%)	3%
Conducting appointments via telehealth	58(75%)	42 (69%)	100 (72%)	24%
Medication renewal	43 (56%)	11 (18%)	54 (39%)	3%

^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] [5] [6] [20] [21] [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] [23] [24] [25] [26] [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.

Multiple-Choice Questions

1. What is a practical mechanism, as implemented in this project, that can be instituted to minimize errors in granting a diminished capacity access class?

   • Require two providers to document the need for a diminished capacity access class.

   • Require front desk or clinic staff to activate the access class.

   • Require a provider to “turn on” the access class after documenting an attestation.

   • Require an analyst to “turn on” the access class only if an attestation is documented.

   Correct Answer: The correct answer is option d. To limit the possibility of erroneously granting access to the proxies of patients who may not meet the diminished capacity status, our workflow required the presence of a specific attestation within the chart and limited the activation to a specifically trained analyst(s). This system created a “double check” utilizing team members in two different arenas to ensure (1) that a clinician had assessed for and documented the appropriateness of the diminished capacity access class and (2) that it would be virtually impossible for the access class to be accidentally activated during registration or rooming processes.

   This workflow aimed to minimize provider burden; requiring two providers to document an attestation would be inconsistent with this goal. To minimize chances for accidental access activation, that role was assigned to a team member outside of the clinic who was specifically trained on the requirements for granting access. Having a provider or a front desk member be able to activate the access class would increase the opportunities for erroneous granting of access.

2. Challenges to configuring portal accounts for adolescents include which consideration?

   • Confidentiality policies/laws prohibit release of information to adolescents.

   • Only “mature minor” adolescents may have access to portal accounts.

   • Confidentiality policies/laws prohibit release of some information to guardians.

   • Only guardians may have access to portal accounts for adolescents.

   Correct Answer: The correct answer is option c. Although institutional policies and state laws may vary, all states allow adolescents to consent to some measure of confidential care (i.e., management of sexually transmitted infections) and that information should not be shared routinely with a guardian. Information regarding confidential care for which an adolescent has consented should be shared, in theory, with an adolescent, though technical feasibility within an institution may limit what information is shared within the portal system. There are no legal reasons why portal accounts should be limited to only “mature minors” or guardians; in fact, the 21st Century Cures Act Final Rule stipulates a free flow of information unless meeting specific exceptions.

Conflict of Interest

None declared.

Acknowledgments

We would like to acknowledge the contributions of Stanford Health Children's Clinical Informatics team, family advisory council, and providers in developing and supporting this initiative.

Protection of Human and Animal Subjects

The institutional review board (IRB) determined that this project did not meet the definition of human subject research as defined in federal regulations 45 CFR 46.102 or 21 CFR 50.3 and did not require further IRB review.

• References

• 1 Anoshiravani A, Gaskin GL, Groshek MR, Kuelbs C, Longhurst CA. Special requirements for electronic medical records in adolescent medicine. J Adolesc Health 2012; 51 (05) 409-414
• 2 Bayer R, Santelli J, Klitzman R. New challenges for electronic health records: confidentiality and access to sensitive health information about parents and adolescents. JAMA 2015; 313 (01) 29-30
• 3 Blythe MJ, Del Beccaro MA. Committee on Adolescence, Council on Clinical and Information Technology. Standards for health information technology to ensure adolescent privacy. Pediatrics 2012; 130 (05) 987-990
• 4 Gray SH, Pasternak RH, Gooding HC. et al; Society for Adolescent Health and Medicine. Recommendations for electronic health record use for delivery of adolescent health care. J Adolesc Health 2014; 54 (04) 487-490
• 5 Thompson LA, Martinko T, Budd P, Mercado R, Schentrup AM. Meaningful use of a confidential adolescent patient portal. J Adolesc Health 2016; 58 (02) 134-140
• 6 Sharko M, Wilcox L, Hong MK, Ancker JS. Variability in adolescent portal privacy features: how the unique privacy needs of the adolescent patient create a complex decision-making process. J Am Med Inform Assoc 2018; 25 (08) 1008-1017
• 7 World Health Organization. Assessing and Supporting Adolescents' Capacity for Autonomous Decision-Making in Health Care Settings: A Tool for Health-care Providers. Geneva: World Health Organization; 2021
• 8 Sharko M, Jameson R, Ancker JS, Krams L, Webber EC, Rosenbloom ST. State-by-state variability in adolescent privacy laws. Pediatrics 2022; 149 (06) e2021053458
• 9 Michaud PA, Blum RW, Benaroyo L, Zermatten J, Baltag V. Assessing an adolescent's capacity for autonomous decision-making in clinical care. J Adolesc Health 2015; 57 (04) 361-366
• 10 Graetz I, Huang J, Muelly ER, Fireman B, Hsu J, Reed ME. Association of mobile patient portal access with diabetes medication adherence and glycemic levels among adults with diabetes. JAMA Netw Open 2020; 3 (02) e1921429
• 11 McInnes DK, Shimada SL, Midboe AM. et al. Patient use of electronic pre- scription refill and secure messaging and its association with undetectable HIV viral load: a retrospective cohort study. J Med Internet Res 2017; 19 (02) e34
• 12 Zhou YY, Kanter MH, Wang JJ, Garrido T. Improved quality at Kaiser Permanente through e-mail between physicians and patients. Health Aff (Millwood) 2010; 29 (07) 1370-1375
• 13 Bergman DA, Brown NL, Wilson S. Teen use of a patient portal: a qualitative study of parent and teen attitudes. Perspectives in health information management/AHIMA. American Health Information Management Association 2008; 5: 13
• 14 Bush RA, Vemulakonda VM, Richardson AC, Deakyne Davies SJ, Chiang GJ. Providing access: differences in pediatric portal activation begin at patient check-in. Appl Clin Inform 2019; 10 (04) 670-678
• 15 Carlson JL, Goldstein R, Buhr T, Buhr N. Teenager, parent, and clinician perspectives on the electronic health record. Pediatrics 2020; 145 (03) e20190193
• 16 English A, Ford CA. Adolescent consent and confidentiality: complexities in context of the 21st Century Cures Act. Pediatrics 2022; 149 (06) e2022056414
• 17 Goldstein RL, Anoshiravani A, Svetaz MV, Carlson JL. Providers' perspectives on adolescent confidentiality and the electronic health record: a state of transition. J Adolesc Health 2020; 66 (03) 296-300
• 18 Jasik CB. Unlocking the potential of the patient portal for adolescent health. J Adolesc Health 2016; 58 (02) 123-124
• 19 Swoboda CM, DePuccio MJ, Fareed N, McAlearney AS, Walker DM. Patient portals: useful for whom and for what? A cross-sectional analysis of national survey data. Appl Clin Inform 2021; 12 (03) 573-581
• 20 Guttmacher Institute. An overview of consent to reproductive health services by young people. Accessed 30, July 2022 at: https://www-guttmacher-org.laneproxy.stanford.edu/state-policy/explore/overview-minors-consent-law
• 21 Confidentiality in adolescent health care: ACOG Committee Opinion, Number 803. Obstet Gynecol 2020; 135 (04) e171-e177
• 22 Webber EC, Brick D, Scibilia JP, Dehnel P. COUNCIL ON CLINICAL INFORMATION TECHNOLOGY, COMMITTEE ON MEDICAL LIABILITY AND RISK MANAGEMENT, SECTION ON TELEHEALTH CARE. Electronic communication of the health record and information with pediatric patients and their guardians. Pediatrics 2019; 144 (01) e20191359
• 23 American Academy of Pediatrics. Guiding principles for information sharing and blocking in pediatric care. Accessed March 15, 2022 at: https://www.aap.org/en/practice-management/health-information-technology/guiding-principles-for-information-sharing-and-blocking-in-pediatric-care/
• 24 Carlson J, Goldstein R, Hoover K, Tyson N. NASPAG/SAHM statement: the 21st Century Cures Act and Adolescent Confidentiality. J Adolesc Health 2021; 68 (02) 426-428
• 25 Ip W, Yang S, Parker J. et al. Assessment of prevalence of adolescent patient portal account access by guardians. JAMA Netw Open 2021; 4 (09) e2124733
• 26 Xie J, McPherson T, Powell A. et al. Ensuring adolescent patient portal confidentiality in the age of the Cures Act Final Rule. J Adolesc Health 2021; 69 (06) 933-939
• 27 Bedgood M, Kuelbs CL, Jones VG, Pageler N. Organizational perspectives on technical capabilities and barriers related to pediatric data sharing and confidentiality. JAMA Netw Open 2022; 5 (07) e2219692

Publication History

Received: 16 August 2022

Accepted: 16 December 2022

Article published online:
15 February 2023