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What are privacy considerations for children in the context of health information technology and cross sector data sharing?

In health IT, privacy is of particular importance when children and adolescents are involved. Generally, parents or legal guardians are the only people who can release a child's health information. There are a few exceptions to this rule, including mature/emancipated minors, the Government (in very limited cases), and minors who can give consent for some types of care (e.g. evaluation, diagnosis, and treatment of drug/alcohol abuse, family planning/pregnancy, treatment for sexual assault, mental health issues, sexually transmitted diseases (STDs) and HIV/AIDS). It should also be noted that a minor's consent to certain treatments does not guarantee privacy to the information resulting from that treatment. Privacy rules (PDF - 284KB)  regarding minors vary from State to State. For example, parents and legal guardians do not have access to a consenting minor's health information in some states such as Arizona (PDF - 160KB) ; in other states, such as Minnesota (PDF - 80KB) , parental access to any health information for general medical and surgical care falls within the judgment of the treating provider. A recent article Health Information Law in the Context of Minor presents a legal overview of these considerations.

A variety of providers including medical offices, hospitals, Title X family planning clinics, and school health clinics (PDF - 288KB) maintain children's health information. This information needs to be shared across many organizations including schools, childcare providers, sports teams, etc. The considerations governing privacy (PDF - 316KB) and consent (PDF - 180KB) in sharing children's health information continue to evolve. Organizations should ultimately consult their own counsel for advice on matters related to constructing such cross sector health information exchanges.

The resources below provide an overview of key concepts in the area of privacy and security for personal health information:

• ARRA 2009 Health Privacy Provisions Summary (PDF - 144KB)  - Center for Democracy & Technology
• Analysis of Health Care Confidentiality, Security and Privacy Provisions in ARRA (PDF - 308KB) - American Health Information Management Association
• Health Insurance Portability and Accountability Act of 1996 (HIPAA) - DHHS
• Privacy and Security Module of the Health IT Adoption Toolbox - AHRQ 
• The Health Information Security and Privacy Collaboration Toolkit - AHRQ