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July 26, 2018

Schiff Asks HHS for Update on Implementation of HIPAA Provisions Allowing Providers to Share Health Information with Families During Certain Crisis Situations

Washington, D.C. – Today, Rep. Adam Schiff (D-Burbank) and other members sent a bipartisan letter to Health and Human Services (HHS) Secretary Alex Azar requesting HHS provide an update on the implementation of the Compassionate Communication on HIPAA provisions authorized under the 21st Century Cures Act.

Health care providers have broad ability to disclose limited protected health information to caregivers making good faith efforts to care for a family member with severe mental illness, based on their professional discretion and judgement of an individual’s illness and circumstances, without violating HIPAA privacy regulations. Failure to understand and use the flexibility in HIPAA hinders treatment, harms the ability of caregivers to assist in their loved one’s treatment and sets the stage for unnecessary tragedies.

In the letter, Schiff asks for an update on HHS’ status on its development of model training and educational programs intended to educate health care providers regarding the permitted use and disclosure of health information under HIPAA.

In the letter, they write: “Unfortunately, many health providers either misinterpret or do not understand what HIPAA actually permits them to say. As long as misconceptions or ignorance of the rights and responsibilities associated with the privacy rule persist, HIPAA may continue to hinder necessary communication with significant implications for patient care and public safety in circumstances in which providers are legally allowed to share information.”

The letter was signed by Representatives Adam B. Schiff (CA-28), John Katko (NY-24), Grace F. Napolitano (CA-32), Gus M. Bilirakis (FL-12), Salud O. Carbajal (CA-24), Jimmy Panetta (CA-20).

The full text of the letter is below:

Dear Secretary Azar:

We write to express our strong support for the Compassionate Communication on HIPAA provisions authorized under Subtitle C, Title XI, Section 11004 of the 21st Century Cures Act and to request an update on the status of implementing this provision which was enacted by Congress in 2016.

HIPAA regulations allow health professionals to share information with a patient’s loved ones in emergency or dangerous situations. However, widespread misunderstandings persist and create obstacles to family support that is crucial to the proper care and treatment of persons experiencing a crisis. To enhance the quality of behavioral health and medical/surgical services, we believe it is essential that model programs and training materials be developed for health care professionals regarding permitted uses and disclosures of Protected Health Information through HIPAA.

Unfortunately, many health providers either misinterpret or do not understand what HIPAA actually permits them to say. As long as misconceptions or ignorance of the rights and responsibilities associated with the privacy rule persist, HIPAA may continue to hinder necessary communication with significant implications for patient care and public safety in circumstances in which providers are legally allowed to share information.

In an effort to promulgate a proper understanding, the Compassionate Communication on HIPAA provision within the 21st Century Cures Act requires HHS to develop model programs and training for health care providers to clarify when information can be shared. It is important that HHS prioritize the training of health professionals – including physicians, nurses, emergency medical personnel, care managers, and hospitals – regarding permitted HIPAA uses and disclosures. The measure also provides for training of patients and their families to understand their rights to obtain treatment information. 

Providers should reasonably work with families who, in good faith, seek information about a family member with serious mental illness to protect their health or safety, particularly where that individual lacks judgment to make an informed decision regarding their need for treatment, care, or supervision. Therefore, we respectfully request an update on your progress in implementing the Compassionate Communication on HIPPA provision within the 21st Century Cures Act.

We appreciate your attention to this important matter and look forward to your response.

Sincerely,