{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,2,8]],"date-time":"2026-02-08T03:33:06Z","timestamp":1770521586208,"version":"3.49.0"},"reference-count":25,"publisher":"Georg Thieme Verlag KG","issue":"01","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Appl Clin Inform"],"published-print":{"date-parts":[[2023,1]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>\n          Background\u2003For caregivers of adolescents and young adults with severe cognitive deficits, or \u201cdiminished capacity,\u201d 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.<\/jats:p><jats:p>\n          Objectives\u2003To 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.<\/jats:p><jats:p>\n          Methods\u2003The first step in this initiative was to define the \u201cdiminished capacity\u201d 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.<\/jats:p><jats:p>\n          Results\u2003Since 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.<\/jats:p><jats:p>\n          Conclusion\u2003With 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.<\/jats:p>","DOI":"10.1055\/s-0043-1760847","type":"journal-article","created":{"date-parts":[[2023,2,16]],"date-time":"2023-02-16T00:23:16Z","timestamp":1676506996000},"page":"128-133","source":"Crossref","is-referenced-by-count":4,"title":["Providing Online Portal Access to Families of Adolescents and Young Adults with Diminished Capacity at an Academic Children's Hospital: A Case Report"],"prefix":"10.1055","volume":"14","author":[{"given":"Jennifer L.","family":"Carlson","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, Stanford University School of Medicine, Stanford, California, United States"}]},{"given":"Natalie","family":"Pageler","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, Stanford University School of Medicine, Stanford, California, United States"}]},{"given":"Tom","family":"McPherson","sequence":"additional","affiliation":[{"name":"Information Services, Stanford Medicine Children's Health, Palo Alto, California, United States"}]},{"given":"Arash","family":"Anoshiravani","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, Stanford University School of Medicine, Stanford, California, United States"}]}],"member":"194","published-online":{"date-parts":[[2023,2,15]]},"reference":[{"issue":"05","key":"ref1","doi-asserted-by":"crossref","first-page":"409","DOI":"10.1016\/j.jadohealth.2012.08.003","article-title":"Special requirements for electronic medical records in adolescent medicine","volume":"51","author":"A Anoshiravani","year":"2012","journal-title":"J Adolesc Health"},{"issue":"01","key":"ref2","doi-asserted-by":"crossref","first-page":"29","DOI":"10.1001\/jama.2014.15391","article-title":"New challenges for electronic health records: confidentiality and access to sensitive health information about parents and adolescents","volume":"313","author":"R Bayer","year":"2015","journal-title":"JAMA"},{"issue":"05","key":"ref3","doi-asserted-by":"crossref","first-page":"987","DOI":"10.1542\/peds.2012-2580","article-title":"Standards for health information technology to ensure adolescent privacy","volume":"130","author":"M J Blythe","year":"2012","journal-title":"Pediatrics"},{"issue":"04","key":"ref4","doi-asserted-by":"crossref","first-page":"487","DOI":"10.1016\/j.jadohealth.2014.01.011","article-title":"Recommendations for electronic health record use for delivery of adolescent health care","volume":"54","author":"S H Gray","year":"2014","journal-title":"J Adolesc Health"},{"issue":"02","key":"ref5","doi-asserted-by":"crossref","first-page":"134","DOI":"10.1016\/j.jadohealth.2015.10.015","article-title":"Meaningful use of a confidential adolescent patient portal","volume":"58","author":"L A Thompson","year":"2016","journal-title":"J Adolesc Health"},{"issue":"08","key":"ref6","doi-asserted-by":"crossref","first-page":"1008","DOI":"10.1093\/jamia\/ocy042","article-title":"Variability in adolescent portal privacy features: how the unique privacy needs of the adolescent patient create a complex decision-making process","volume":"25","author":"M Sharko","year":"2018","journal-title":"J Am Med Inform Assoc"},{"key":"ref7","volume-title":"Assessing and Supporting Adolescents' Capacity for Autonomous Decision-Making in Health Care Settings: A Tool for Health-care Providers","author":"World Health Organization","year":"2021"},{"issue":"06","key":"ref8","doi-asserted-by":"crossref","first-page":"e2021053458","DOI":"10.1542\/peds.2021-053458","article-title":"State-by-state variability in adolescent privacy laws","volume":"149","author":"M Sharko","year":"2022","journal-title":"Pediatrics"},{"issue":"04","key":"ref9","doi-asserted-by":"crossref","first-page":"361","DOI":"10.1016\/j.jadohealth.2015.06.012","article-title":"Assessing an adolescent's capacity for autonomous decision-making in clinical care","volume":"57","author":"P A Michaud","year":"2015","journal-title":"J Adolesc Health"},{"issue":"02","key":"ref10","doi-asserted-by":"crossref","first-page":"e1921429","DOI":"10.1001\/jamanetworkopen.2019.21429","article-title":"Association of mobile patient portal access with diabetes medication adherence and glycemic levels among adults with diabetes","volume":"3","author":"I Graetz","year":"2020","journal-title":"JAMA Netw Open"},{"issue":"02","key":"ref11","doi-asserted-by":"crossref","first-page":"e34","DOI":"10.2196\/jmir.6932","article-title":"Patient use of electronic pre- scription refill and secure messaging and its association with undetectable HIV viral load: a retrospective cohort study","volume":"19","author":"D K McInnes","year":"2017","journal-title":"J Med Internet Res"},{"issue":"07","key":"ref12","doi-asserted-by":"crossref","first-page":"1370","DOI":"10.1377\/hlthaff.2010.0048","article-title":"Improved quality at Kaiser Permanente through e-mail between physicians and patients","volume":"29","author":"Y Y Zhou","year":"2010","journal-title":"Health Aff (Millwood)"},{"key":"ref13","first-page":"13","article-title":"Teen use of a patient portal: a qualitative study of parent and teen attitudes. Perspectives in health information management\/AHIMA","volume":"5","author":"D A Bergman","year":"2008","journal-title":"American Health Information Management Association"},{"issue":"04","key":"ref14","doi-asserted-by":"crossref","first-page":"670","DOI":"10.1055\/s-0039-1695792","article-title":"Providing access: differences in pediatric portal activation begin at patient check-in","volume":"10","author":"R A Bush","year":"2019","journal-title":"Appl Clin Inform"},{"issue":"03","key":"ref15","doi-asserted-by":"crossref","first-page":"e20190193","DOI":"10.1542\/peds.2019-0193","article-title":"Teenager, parent, and clinician perspectives on the electronic health record","volume":"145","author":"J L Carlson","year":"2020","journal-title":"Pediatrics"},{"issue":"06","key":"ref16","doi-asserted-by":"crossref","first-page":"e2022056414","DOI":"10.1542\/peds.2022-056414","article-title":"Adolescent consent and confidentiality: complexities in context of the 21st Century Cures Act","volume":"149","author":"A English","year":"2022","journal-title":"Pediatrics"},{"issue":"03","key":"ref17","doi-asserted-by":"crossref","first-page":"296","DOI":"10.1016\/j.jadohealth.2019.09.020","article-title":"Providers' perspectives on adolescent confidentiality and the electronic health record: a state of transition","volume":"66","author":"R L Goldstein","year":"2020","journal-title":"J Adolesc Health"},{"issue":"02","key":"ref18","doi-asserted-by":"crossref","first-page":"123","DOI":"10.1016\/j.jadohealth.2015.12.003","article-title":"Unlocking the potential of the patient portal for adolescent health","volume":"58","author":"C B Jasik","year":"2016","journal-title":"J Adolesc Health"},{"issue":"03","key":"ref19","doi-asserted-by":"crossref","first-page":"573","DOI":"10.1055\/s-0041-1731339","article-title":"Patient portals: useful for whom and for what? A cross-sectional analysis of national survey data","volume":"12","author":"C M Swoboda","year":"2021","journal-title":"Appl Clin Inform"},{"issue":"04","key":"ref21","doi-asserted-by":"crossref","first-page":"e171","DOI":"10.1097\/AOG.0000000000003770","article-title":"Confidentiality in adolescent health care: ACOG Committee Opinion, Number 803","volume":"135","year":"2020","journal-title":"Obstet Gynecol"},{"issue":"01","key":"ref22","doi-asserted-by":"crossref","first-page":"e20191359","DOI":"10.1542\/peds.2019-1359","article-title":"Electronic communication of the health record and information with pediatric patients and their guardians","volume":"144","author":"E C Webber","year":"2019","journal-title":"Pediatrics"},{"issue":"02","key":"ref24","doi-asserted-by":"crossref","first-page":"426","DOI":"10.1016\/j.jadohealth.2020.10.020","article-title":"NASPAG\/SAHM statement: the 21st Century Cures Act and Adolescent Confidentiality","volume":"68","author":"J Carlson","year":"2021","journal-title":"J Adolesc Health"},{"issue":"09","key":"ref25","doi-asserted-by":"crossref","first-page":"e2124733","DOI":"10.1001\/jamanetworkopen.2021.24733","article-title":"Assessment of prevalence of adolescent patient portal account access by guardians","volume":"4","author":"W Ip","year":"2021","journal-title":"JAMA Netw Open"},{"issue":"06","key":"ref26","doi-asserted-by":"crossref","first-page":"933","DOI":"10.1016\/j.jadohealth.2021.09.009","article-title":"Ensuring adolescent patient portal confidentiality in the age of the Cures Act Final Rule","volume":"69","author":"J Xie","year":"2021","journal-title":"J Adolesc Health"},{"issue":"07","key":"ref27","doi-asserted-by":"crossref","first-page":"e2219692","DOI":"10.1001\/jamanetworkopen.2022.19692","article-title":"Organizational perspectives on technical capabilities and barriers related to pediatric data sharing and confidentiality","volume":"5","author":"M Bedgood","year":"2022","journal-title":"JAMA Netw Open"}],"container-title":["Applied Clinical Informatics"],"original-title":[],"language":"en","link":[{"URL":"http:\/\/www.thieme-connect.de\/products\/ejournals\/pdf\/10.1055\/s-0043-1760847.pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,2,16]],"date-time":"2023-02-16T00:24:02Z","timestamp":1676507042000},"score":1,"resource":{"primary":{"URL":"http:\/\/www.thieme-connect.de\/DOI\/DOI?10.1055\/s-0043-1760847"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2023,1]]},"references-count":25,"journal-issue":{"issue":"01","published-online":{"date-parts":[[2023,1,4]]},"published-print":{"date-parts":[[2023,1]]}},"URL":"https:\/\/doi.org\/10.1055\/s-0043-1760847","archive":["Portico","CLOCKSS"],"relation":{},"ISSN":["1869-0327"],"issn-type":[{"value":"1869-0327","type":"electronic"}],"subject":[],"published":{"date-parts":[[2023,1]]}}}