Ensuring Adolescent Patient Portal Confidentiality in the Age of the Cures Act Final Rule (original) (raw)
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Assessment of Prevalence of Adolescent Patient Portal Account Access by Guardians
JAMA Network Open
IMPORTANCE Patient portals can be configured to allow confidential communication for adolescents' sensitive health care information. Guardian access of adolescent patient portal accounts could compromise adolescents' confidentiality. OBJECTIVE To estimate the prevalence of guardian access to adolescent patient portals at 3 academic children's hospitals. DESIGN, SETTING, AND PARTICIPANTS A cross-sectional study to estimate the prevalence of guardian access to adolescent patient portal accounts was conducted at 3 academic children's hospitals. Adolescent patients (aged 13-18 years) with access to their patient portal account with at least 1 outbound message from their portal during the study period were included. A rule-based natural language processing algorithm was used to analyze all portal messages from June 1, 2014, to February 28, 2020, and identify any message sent by guardians. The sensitivity and specificity of the algorithm at each institution was estimated through manual review of a stratified subsample of patient accounts. The overall proportion of accounts with guardian access was estimated after correcting for the sensitivity and specificity of the natural language processing algorithm. EXPOSURES Use of patient portal. MAIN OUTCOME AND MEASURES Percentage of adolescent portal accounts indicating guardian access. RESULTS A total of 3429 eligible adolescent accounts containing 25 642 messages across 3 institutions were analyzed. A total of 1797 adolescents (52%) were female and mean (SD) age was 15.6 (1.6) years. The percentage of adolescent portal accounts with apparent guardian access ranged from 52% to 57% across the 3 institutions. After correcting for the sensitivity and specificity of the algorithm based on manual review of 200 accounts per institution, an estimated 64% (95% CI, 59%-69%) to 76% (95% CI, 73%-88%) of accounts with outbound messages were accessed by guardians across the 3 institutions. CONCLUSIONS AND RELEVANCE In this study, more than half of adolescent accounts with outbound messages were estimated to have been accessed by guardians at least once. These findings have implications for health systems intending to rely on separate adolescent accounts to protect adolescent confidentiality.
Meaningful Use of a Confidential Adolescent Patient Portal
Journal of Adolescent Health, 2016
To design and evaluate the usage of an adolescent patient portal specifically adapted for adolescent health care needs that also satisfied institutional meaningful use guidelines regarding electronic health records. Methods: Key stakeholders at one academic health care center adopted an online portal and opted to designate a patient portal specifically for adolescents to maximize confidentiality in compliance with state privacy laws. This study analyzed aggregate electronic health record data of adolescents' (ages 12e17.9 years) uptake, usage, and functionality of this portal and compared it to parent portal usage for younger children (ages 0e11 years). Differences in means were calculated using paired t tests. Results: The portal was used similarly between parents of young children and adolescents, with almost 1,000 enrollees in each group from September 1, 2012 to March 31, 2015. There were no gender differences in enrollment. Adolescents were less likely than parents of younger children to review appointments (73% vs. 85%), laboratory tests (67% vs. 79%), problem lists (40% vs. 78%), or allergies (45% vs. 77%, all p values <.001). Parents of younger children more frequently messaged providers (3,297 messages) although adolescents sent 1,397 confidential messages. Conclusions: Institutional decisions for implementing meaningful use requirements can align with goals of adolescent health. Patient portals can enhance adolescent health care quality and adolescents readily use a confidential portal. Implementation of meaningful use requirements should be checked against adolescent health care needs to maximize confidentiality and promote health communication.
Applied Clinical Informatics
Background: The 21st Century Cures Act mandates sharing electronic health records (EHRs) with patients. Healthcare providers must ensure confidential sharing of medical information with adolescents while maintaining parental insight into adolescent health. Given variability in state laws, provider opinions, EHR systems and technological limitations, consensus on best practices to achieve adolescent clinical note sharing at scale is needed. Objectives: To identify an effective intervention process to implement adolescent clinical note sharing, including ensuring adolescent portal account registration accuracy, across a large multihospital healthcare system comprising inpatient, emergency, and ambulatory settings. Methods: A query was built to assess portal account registration accuracy. At a large multihospital healthcare system, 80.0% of 12 to 17-year-old patient portal accounts were classified as inaccurately registered (IR) under a parent or registration accuracy unknown (RAU). To...
Standards for Health Information Technology to Ensure Adolescent Privacy
PEDIATRICS, 2012
Privacy and security of health information is a basic expectation of patients. Despite the existence of federal and state laws safeguarding the privacy of health information, health information systems currently lack the capability to allow for protection of this information for minors. This policy statement reviews the challenges to privacy for adolescents posed by commercial health information technology systems and recommends basic principles for ideal electronic health record systems. This policy statement has been endorsed by the Society for Adolescent Health and Medicine. Pediatrics 2012;130:987-990 BACKGROUND State laws allow minors to consent for their health care on the basis of their status (eg, as an emancipated or mature minor or a pregnant or parenting teenager) and on the basis of the services they seek (eg, sexually transmitted infection [STI] diagnosis and treatment, contraception, pregnancy care, substance abuse counseling/treatment, or mental health care). If adolescents cannot trust that their health information will be both private and secure, they may not seek these services. 1-6 State and federal laws provide protection of privacy when minors consent for their own health care; laws pertaining to such care vary depending on where the teenager resides. 7 The American Academy of Pediatrics (AAP), along with other medical societies, encourages adolescents to discuss health issues with parents but has supported the right to adolescent privacy. 8 Privacy control of protected information specific to adolescent health has not been adequately addressed in the development of electronic health records (EHRs). Current federal rules related to the Health Information Technology for Economic and Clinical Health Act limit the discussion of privacy as it relates to the Health Insurance Portability and Accountability Act (HIPAA) and, thus, related criteria for certification of EHRs. Such criteria have no specific references to issues of adolescent privacy. 9,10 Because electronic systems currently are unable to filter or compartmentalize health information consistent with current laws, states have been left to identify individual barriers to appropriate exchange of adolescent health information and to identify interim solutions. 11 COMMITTEE ON ADOLESCENCE and COUNCIL ON CLINICAL AND INFORMATION TECHNOLOGY KEY WORDS confidential care, privacy, electronic medical records, personal health records ABBREVIATIONS AAP-American Academy of Pediatrics EHR-electronic health record HIE-health information exchange HIPAA-Health Insurance Portability and Accountability Act PHR-personal health record STI-sexually transmitted infection This document is copyrighted and is property of the American Academy of Pediatrics and its Board of Directors. All authors have filed conflict of interest statements with the American Academy of Pediatrics. Any conflicts have been resolved through a process approved by the Board of Directors. The American Academy of Pediatrics has neither solicited nor accepted any commercial involvement in the development of the content of this publication. All policy statements from the American Academy of Pediatrics automatically expire 5 years after publication unless reaffirmed, revised, or retired at or before that time.
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
We conducted a qualitative study of the attitudes of teens and parents toward the use of a patient portal. We conducted two teen and two parent focus groups, one teen electronic bulletin board, and one parent electronic bulletin board. Videotapes and transcripts from the groups were independently analyzed by two reviewers for significant themes, which were then validated by two other members of the research team. Twenty-eight teens and 23 parents participated in the groups. Significant themes included issues about teens' control of their own healthcare; enthusiasm about the use of a patient portal to access their providers, seek health information, and make appointments; and concerns about confidentiality. In summary, there was considerable support among teens and parents for a patient portal as well as concerns about confidentiality. The teen portal affords an opportunity to negotiate issues of confidentiality.
The Catch to Confidentiality: The Use of Electronic Health Records in Adolescent Health Care
The Journal of adolescent health : official publication of the Society for Adolescent Medicine, 2018
This study aims to understand pediatric health-care providers' expectations and the practices they employ to protect confidentiality in electronic health records (EHRs) and subsequently how EHRs affect the documentation and dissemination of information in the course of health-care delivery to adolescent minors. Twenty-six pediatric health-care providers participated in in-depth interviews about their experiences using EHRs to understand a broad spectrum of expectations and practices guiding the documentation and dissemination of information in the EHR. A thematic analysis of interviews was conducted to draw findings and conclusions. Two themes and several subthemes emerged centering on how EHRs affected confidentiality expectations and practices. Participants expressed confidentiality concerns due to the EHR's longevity as a legacy record, its multidimensional uses, and increased access by users (theme 1). These concerns affected practices for protecting adolescent confident...
Special Requirements for Electronic Medical Records in Adolescent Medicine
Journal of Adolescent Health, 2012
Adolescents are a group likely to seek and, perhaps, most likely to benefit from electronic access to health information. Despite significant advances in technical capabilities over the past decade, to date neither electronic medical record vendors nor many health care systems have adequately addressed the functionality and process design considerations needed to protect the confidentiality of adolescent patients in an electronic world. We propose a shared responsibility for creating the necessary tools and processes to maintain the adolescent confidentiality required by most states: (1) system vendors must provide key functionality in their products (adolescent privacy default settings, customizable privacy controls, proxy access, and health information exchange compatibility), and (2) health care institutions must systematically address relevant adolescent confidentiality policies and process design issues. We highlight the unique technical and process considerations relevant to this patient population, as well as the collaborative multistakeholder work required for adolescent patients to experience the potential benefits of both electronic medical records and participatory health information technology.
Recommendations for Electronic Health Record Use for Delivery of Adolescent Health Care
Journal of Adolescent Health, 2014
Adolescents stand to benefit greatly from improved electronic access to reliable health information and health care. Use of electronic health records (EHRs) can potentially improve health care accessibility, effectiveness, and safety but can create challenges for the ongoing protection of patient confidentiality and privacy. Protection of adolescent confidentiality as dictated by applicable laws is a responsibility shared by EHR vendors, hospital and clinic administrators, clinicians, patients, and families.