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

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.

Publication History

Received: 16 August 2022

Accepted: 16 December 2022

Article published online:
15 February 2023

• 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