(Story updated at 3:15 p.m. Eastern time)
U.S. Rep. Doris Matsui (D-Calif.) had heard that mental healthcare providers were reluctant to share patients' information with their family and caregivers even when it was in their best interest to do so. She has introduced a new bill aimed at ending those privacy concerns.
Matsui said that her bill will codify the content of a 2014 guidance (PDF) issued by HHS' Office for Civil Rights without amending the Health Insurance Portability and Accountability Act. It will also promote better understanding of what the privacy law allows—which will give providers confidence in using their discretion in delicate situations.
“Where a patient is present and has the capacity to make healthcare decisions, healthcare providers may communicate with a patient's family members, friends or other persons the patient has involved in his or her healthcare or payment for care, so long as the patient does not object,” HHS stated in the guidance. “Where a patient is not present or is incapacitated, a healthcare provider may share the patient's information with family, friends or others involved in the patient's care or payment for care, as long as the healthcare provider determines, based on professional judgment, that doing so is in the best interests of the patient.”
Matsui said that, despite this guidance, providers often withheld vital information from families because they thought that sharing it would be a HIPAA violation.
“I have heard heartbreaking stories from physicians and other providers who wanted to share information with patients' families during mental health crises, but felt that they weren't able to under HIPAA,” Matsui said. “However, (HHS') Office for Civil Rights' guidance outlines that in many cases, under the HIPAA law, the provider does have the discretion to share patients' information when it is in the patients' best interest to do so.”
The bill also provides $5 million for fiscal 2016 and $25 million to be used between fiscal 2017 and fiscal 2022 to develop model training programs for healthcare providers, legal professionals and patients and their families. The programs would educate the three groups on the privacy and security rules governing standards on sharing identifiable health information and what type of protected information regarding mental illness can be disclosed with or without patient consent.
Matsui's proposal has the support of a wide spectrum of mental health advocacy groups, including the Bazelon Center for Mental Health Law, which has promoted strong patient privacy protections.
Other supporters include the American Psychological Association, American Psychiatric Association, National Council for Behavioral Health, National Disability Rights Network, Treatment Advocacy Center, Mental Health Association of California and California Council of Community Mental Health Agencies.
“For far too long, too many have misunderstood or hidden behind HIPAA,” Linda Rosenberg, president and CEO of the National Council for Behavioral Health, said in a news release. “The National Council applauds Congresswoman Matsui's efforts to help educate and inform us about how we can appropriately and permissibly share patient health information so as to ensure patients' health and safety while protecting their privacy.”
The House Energy and Commerce Committee's Health Subcommittee is scheduled to hold a June 16 hearing on the bill. It will also hold one on the Helping Families in Mental Health Crisis Act (PDF), which was introduced last week by Reps. Tim Murphy (R-Pa.) and Eddie Bernice Johnson (D-Texas).
Murphy's bill would create a new HHS leadership post, assistant secretary for mental health and substance-abuse disorders, and establish a national mental-health policy laboratory to develop new models of care. It also provides for additional psychiatric hospital beds, promotes telepsychiatry for underserved and rural areas, authorizes an early intervention program for people with or developing schizophrenia, focuses on suicide prevention and incentivizes states to provide alternatives to institutionalization. It would also promote the use of health information technology to better coordinate care with primary-care physicians.
But Matsui is not a supporter of Murphy's bill because she said it will change HIPAA law and reduce funding to the Substance Abuse and Mental Health Services Administration.
“Congressman Murphy has made some positive changes to his bill from last Congress, and I certainly appreciate his attention to these important issues,” she said. “However, I cannot support the full legislation as written because I have concerns about many provisions in the bill. For example, opening HIPAA law will create privacy issues for patients and the bill would make drastic cuts to critical SAMHSA programs.”
The American Psychiatric Association, an Arlington, Va.-based organizations whose membership includes some 36,000 psychiatrists, is supporting both bills.
APA President Dr. Renée Binder said in a news release that Murphy's bill includes important provisions such as “strengthening enforcement of mental-health parity, enhancing the psychiatric workforce, ensuring better coordination of federal resources, and improving research and treatment for persons with mental illness, including substance use disorders.”
APA CEO Dr. Saul Levin, in a letter to Matsui expressing the organization's support of her bill, wrote that the Including Families in Mental Health Recovery Act facilitates family and caregiver assistance to individuals with mental illness.
“It's often the case that the management of professionals' interactions with patients and caregivers is complex,” Levin wrote. “It is important that confidentiality protections, which are a central pillar to appropriate and effective therapeutic relationships, be balanced with the availability of legal tools that are necessary for psychiatrists to be able to act in the best interests of their patients when disclosure of protected health information to third parties is necessary.”