Executive Summary
- •The design, implementation, and use of EHRs need to take into account the special needs of adolescents for access to health information and the vigorous protection of confidentiality.
- •EHR vendors need to ensure development of systems that meet regulatory requirements and address the privacy needs of all patients, including adolescents, by building robust, flexible, granular privacy settings into all aspects of their products.
- •Health care systems implementing EHRs must train their employees in techniques to protect adolescents' confidential information, in accordance with national and state/provincial laws, as well as institutional policies.
- •Health care providers working with adolescents should advocate for specific adolescent privacy protections in the implementation of EHRs used within their clinics or institutions, as well as communicate their needs to EHR vendors.
- •Health care providers should educate adolescents and their families on how to use an EHR, what information can be considered confidential and ways to protect patient and family confidentiality when using or accessing EHRs.
Background
Definitions
Office of the National Coordinator (ONC) of Health Information Technology. 2013; http://www.healthit.gov/. Accessed April 2, 2013.
Prevalence of electronic health record use
Benefits of electronic health record use for adolescents
Madden M, Lenhart A, Duggan M, et al. Teens and technology 2013. Pew Res Center/Berkman Cent Internet Soc Harv Univ; http://www.pewinternet.org/Reports/2013/Teens-and-Tech.aspx. Accessed November 4, 2013.
“Meaningful use” regulations in the United States
Adolescent confidentiality
Recommendations
Recommendations for vendors/electronic health record system requirements
- 1.EHRs should have the functionality to designate problems, medications, visit notes, laboratory and radiology results, genetic testing, and social and family history as confidential, so that these can be easily suppressed from an AVS, discharge summary, or other printed material generated after a visit, as well as shielded from those who should not have access to such information.
- 2.EHRs should have flexible functionality to provide differential access to information (e.g., via a patient portal) for parents and adolescents, in such a way that is transparent to the adolescent patient. Options include (1) permitting access to nonconfidential information only to both parents and adolescents (information parity); (2) permitting full access only to the 13- to 17-year-old adolescents, with parents able to receive only nonconfidential information—an approach that requires actively blocking access to certain information by the parent and requires vigilance and ongoing effort to maintain, but which in our view is the ideal; and (3) permitting full parental access for unusual or complicated situations (e.g., intellectual disability or cancer), ideally customized by the adolescent; or (4) turning off portal access for all patients aged 13–17 years [[1]]. Of note, we also believe that parents should also be able to restrict certain family information from the child's record (e.g., family history of Huntington's disease, HIV, consanguinity, or substance abuse).
- 3.EHRs should employ the same privacy protections for adolescents (and all patients) when transmitting health information through a HIE.
- 4.EHRs should have functionality to ensure that confidential information is not shared with other unauthorized health care providers using the same system or through HIE.
- 5.Most importantly, all the above functionalities should be included in special default privacy settings, which could be easily turned on or off in health care venues that require these confidentiality protections. These default settings could then be overridden by providers at the point of care or by patients to modify access to specific information (e.g., patient might allow differential access to a psychologist, school nurse, teacher, or camp counselor). The availability of default, modifiable privacy settings will ultimately benefit all patients in any sort of health care proxy situation.
Recommendations for health care systems
Recommendations for health care providers
Recommendations for patients and families
Acknowledgments
References
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Office of the National Coordinator (ONC) of Health Information Technology. 2013; http://www.healthit.gov/. Accessed April 2, 2013.
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Article info
Footnotes
Position paper approved by the Society for Adolescent Health and Medicine's Board of Directors, January 2014.