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AHIMA’s Position

AHIMA supports the use of policy to address existing privacy, confidentiality, and security gaps in the protection of health information held by Health Insurance Portability and Accountability Act (HIPAA) non-covered entities. Federal privacy and security baseline standards should be developed for the protection of health information held by data holders outside of the scope of HIPAA. Standards should take into account the data holder’s size, scope, activities, and sensitivity of the health information collected, used, and maintained as well as risk of inappropriate disclosure and misuse.

Health information (HI) professionals have extensive expertise in ensuring the privacy, confidentiality, and security of an individual’s health information. AHIMA has developed a set of privacy principles below to help inform its ongoing advocacy efforts in this area. The principles envision the privacy, confidentiality, and security of health information throughout its entire lifecycle. In this context, AHIMA intends “health information” to refer to “electronic health information” as defined at 45 CFR 171.102.2 The principles are intended to be technology agnostic and adaptable to differing technologies and platforms. The principles are also intended for data holders that are not covered by HIPAA and are not intended to supersede, alter, or affect entities currently covered by HIPAA. To ensure the confidentiality, privacy, and security of individuals’ health information, AHIMA believes that policy must:

Policy must guarantee that individuals have access to their health information regardless of where it travels.

Policy must ensure that data holders develop, document, communicate, assign, and are held accountable for their privacy policies and procedures.

Policy must ensure data holders communicate what information will be collected and maintained and generally how the data may be processed and disclosed, including whether data will be sold or commercialized.

Policy must ensure data holders limit the amount of health information collected, used, and disclosed to the minimum necessary.

Policy approaches must encourage the completeness, accuracy, and integrity of health information.

Risks include breaches and unauthorized disclosures.

Policy should safeguard that health information is retained no longer than necessary by data holders.

Policy should facilitate the proper disposition and destruction of health information.

Policy must clearly designate and adequately fund oversight and enforcement responsibilities.


The state of health data privacy in the US is rapidly evolving as the digitization of the healthcare sector accelerates. Historically, the US has followed a patchwork approach, applying a sector-specific approach to data privacy versus a single data privacy regime. As a result, absent sector-specific requirements, certain technologies, applications, products and services, are not bound by or required to abide by robust privacy protections.

HIPAA governs health privacy in traditional healthcare settings. However, an increasing number of consumer-facing technologies, applications, products, and services that access, produce and manage health information are not bound by or required to abide by the rules established under HIPAA because they are not considered “covered entities” or “business associates.” Rather, the privacy practices of such applications, products and services are generally regulated by state law and/or the Federal Trade Commission (FTC) Act. However, unlike sector-specific data protections, the FTC Act does not prescribe specific privacy requirements but rather prohibits unfair or deceptive acts or practices in or affecting commerce. This kind of oversight does not provide the same type or level of protections for consumers as HIPAA, which offers such safeguards as notice of privacy practices; security; restrictions on the sale, use, and reuse of PHI by third parties; and the individual right of access.


Key Points

AHIMA offers the following policy recommendations to ensure that entities not covered by HIPAA are held accountable for the privacy and security of health information.

Individuals have the right to access their health information regardless of where that information travels. Individuals have the right to access, at a minimum, their health information as defined in 45 CFR 164.501.

  • Data holders should implement both initial and ongoing workforce development training to educate employees engaged in the data processing6 of health information to ensure they are trained to perform privacy-related duties. Third parties (e.g., service providers, partners, etc.) should also be held accountable for training associated with the performance of privacy-related duties.
  • Data holders should document employees’ and third parties’ commitment to adherence to privacy policies and procedures.
  • Data holders should be held accountable and face consequences for failure to adhere to the policy recommendations set forth in this document.

  • Data holders should clearly and conspicuously communicate what information will be collected and maintained and generally how the data may be processed and disclosed.
  • Data holders should be required to make their privacy policy available in plain language before the individual shares any health information. The privacy policy should contain categories of health information it collects, processes, maintains and discloses; practices of the data holder including an articulated basis for the collection, processing, maintenance and disclosure of such information; and how individuals may exercise their rights under the policy and the law. The privacy policy must also be provided to the individual via a process that is concise, clear, intelligible, and easily accessible.
  • Policies, processes, and procedures should be in place for receiving, tracking, and responding to complaints, concerns, and questions from individuals about a data holder’s organizational privacy policies and practices.
  • Individuals must have the opportunity to clearly communicate their privacy preferences. Policies, processes, and procedures should be in place to enable an individual’s privacy preferences and requests, including a reasonable mechanism to revoke consent.

  • Collection, access, use, disclosure and maintenance of health information must be limited to no more than what is reasonably necessary to accomplish the intended purpose.
  • Consent to collect, access, disclose and maintain health information should be sought whereby an individual makes an informed decision to share their information and the choice is recorded and maintained. Consent should be revocable at any time.
  • Access to health information by an individual’s employer should not be permitted unless an individual authorizes a data holder to do so or is required by law.
  • Data holders should not sell an individual’s health information without the express consent of the individual.
  • Secondary uses of data must be disclosed to the individual with an option to opt-in, except as required by law.
  • Collection, access, use, disclosure, and maintenance of health information is expressly prohibited for purposes of discrimination, stigmatization, discriminatory profiling, and/or exploitation.

  • An individual has the right to inspect health information related to him or her and to have such data amended or completed.
  • Individuals have the right to request that a data holder amend health information about them so long as the health information is maintained by the data holder. A data holder may deny an individual’s request for amendment if it determines that the health information that is the subject of the request was not created by the data holder (unless the individual provides a reasonable basis to believe that the originator of health information is no longer able to amend or correct the health information or the health information is accurate and complete).

  • Using privacy and security industry standard best practices, health information should be protected against risks such as loss or unauthorized access, destruction, use, modification, or disclosure of data.
  • Data holders should notify an individual following discovery of a breach of the individual’s health information in a timely manner, in accordance with the Federal Trade Commission (FTC)’s Health Breach Notification Rule.

Data holders should maintain health information no longer than necessary while taking into account legal, regulatory, fiscal, and operational requirements. Data holders should develop a health information retention schedule specifying what information must be retained and for what length of time.

Data holders should in the normal course of business regularly provide secure and appropriate disposition of health information no longer required to be maintained by applicable laws and the organization’s policies.

Oversight and enforcement of entities not covered by HIPAA should be assigned to a single federal agency, such as the FTC. Adequate resources including funding and tools; a clear congressional mandate must also be provided to ensure appropriate oversight and enforcement.


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