Patient Education and Engagement
Patient education is an incredibly important part of meaningful consent. Education and engagement give patients information in an accessible and clear format so that they understand, for example:
- what parts of health information could be accessed or shared,
- who could access health information,
- how health information is protected,
- why health information might be shared, and
- the choices they have in terms of sharing or not sharing health information.
Education and engagement are crucial to helping patients understand their consent options and the impact of their consent choices.
The Office of the National Coordinator for Health Information Technology (ONC) is working to help enable providers, health information exchange organizations (HIEs), and other health IT implementers to educate patients about the sharing of their health information.
Consent should not be a “check-the-box” exercise. Patient education and engagement should communicate that the patient’s meaningful consent decision is:
- made with full transparency and education,
- made only after the patient has had sufficient time to review educational material,
- commensurate with circumstances for why health information is exchanged (i.e., the further the information-sharing strays from a reasonable patient expectation, the more time and education is required for the patient before he or she makes a decision),
- not used for discriminatory purposes or as a condition for receiving medical treatment,
- consistent with patient expectations, and
- revocable at any time.
The list below provides example patient education resources that may be helpful.The resources presented may not be applicable or appropriate for all providers, HIEs, and other health IT implementers. We encourage implementers to seek expert advice when evaluating these resources, as the health care environment has evolved over time. The resources are also not intended to serve as legal advice or offer recommendations based on an implementer’s specific circumstances.
- Health Information Security & Privacy Collaboration (HISPC) Website – resources (templates, tools, and processes) to help implementers educate patients about the privacy and security aspects of electronic health information exchange (eHIE) and health IT in general.
- eConsent Toolkit – tools, resources, and sample patient educational materials that were used in the eConsent Trial Project that can be leveraged regardless of the pertinent consent approach and architecture/infrastructure model. Each implementer should tailor eConsent material to his or her working environment.
- Health Insurance Portability and Accountability Act (HIPAA) Notice of Privacy Practices (NPP) Project – sample plain language versions of the HIPAA Privacy Rule’s Notice of Privacy Practices. The Office for Civil Rights (OCR) and ONC jointly developed these model notices, which health care providers and health plans can customize and share with their patients and plan members.
- Regional Health Information Organization (RHIO) Website – example of one RHIO’s approach to patient education, including Frequently Asked Questions (FAQs) and a brochure.