Institute:Office of National Coordinator (ONC) Workforce Training Curriculum
Component:The Culture of Health Care
Unit:Privacy, Confidentiality, and Security
Lecture:Definitions of privacy, confidentiality, and security
Slide content:Health Information Rights Declaration of Health Data Rights Right to our own health data Right to know the source of each health data element Right to take possession of a complete copy of our individual health data, without delay, at minimal or no cost; if data exist in computable form, they must be made available in that form Right to share our health data with others as we see fit Read: https://sites.tufts.edu/prep/2009/07/07/declaration-of-health-data-rights AHIMA Health Information Bill of Rights (2009) http://bok.ahima.org/PdfView?oid=107674 Slightly more detailed but with similar provisions HIPAA Privacy Rule Provisions (2016) www.healthit.gov/patients-families/your-health-information-rights 19
Slide notes:Another number of organizations have tried to define health information rights. One example is the Declaration of Health Data Rights, which comes from a group of mostly personal health record (PHR [pee- aych -are]) vendors. This group advocates that all individuals should have the right to their own health data. They should also have the right to know the source of each health data element. In addition, individuals should have the right to take possession of a complete copy of their individual health data, without delay, at minimal or no cost. If data exists in computable form, it must be made available in that form. Finally, individuals should have the right to share their health data with others as they see fit. The American Health Information Management Association (AHIMA, a- hee - mah ) also has a Health Information Bill of Rights that is slightly more detailed but has similar provisions. The Health Insurance Portability and Accountability Act of 1996 (HIPAA) Privacy Rule includes provisions for patients health information privacy rights. These include the right to access health information, right to an accounting of disclosures of health information, right to correct or amend health information, right to notice of privacy practices, and right to file a complaint. More information can be found at https://www.healthit.gov/patients-families/your-health-information-rights. The Privacy Right Clearing House also provides information on HIPAAs privacy rule at https://www.privacyrights.org/content/hipaa-privacy-rule-patients-rights. 19