New National Project Aims to Improve Understanding and Accurate Utilization of Federal Health Privacy Laws

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CAI, in partnership with the Legal Action Center, was awarded funds from the Substance Abuse and Mental Health Services Administration (SAMHSA) to launch the Center of Excellence for Protected Health Information (CoE for PHI)

New York, NY – In 2016, approximately 21 million people in the U.S. needed substance use disorder (SUD) treatment and only 3.8 million received treatment.1  Over 56% of adults with mental illness received no treatment in the past year, and 20% of those who did seek treatment say they still have unmet treatment needs.2  At the national level, the rate of deaths from drug overdoses is contributing to the shortening of average U.S. life expectancy.3 

Individuals living with mental illness or substance use disorders may choose not to access crucial healthcare services without guarantees of confidentiality and privacy protections. A recent survey completed by SAMHSA found that concerns about privacy and confidentiality among individuals with behavioral health needs is a primary reason for not receiving treatment.
4  In an effort to protect patient confidentiality and increase the number of patients seeking and remaining in treatment, many federal health privacy laws and regulations, like the Health Insurance Portability and Accountability Act (HIPAA), the federal substance use disorder privacy law and regulations (including 42 CFR Part 2), and the Family Educational Rights and Privacy Act (FERPA), were put in place to protect the information of patients getting or seeking treatment. These privacy laws govern the sharing of patient information with other healthcare providers, family members, schools and community organizations. 

But it’s not easy. Privacy laws are not written in plain language and can be difficult for patients and their families to understand. It can also be difficult for staff to figure out how to apply in practice. A significant issue that patients, their families and providers encounter is understanding what exact information about mental health or substance use disorder treatment can be shared, with whom, and at what times. As more providers seek to integrate care, this confusion can lead to instances where important information is being withheld even though it may be integral to a patient’s treatment. 

In response to the need for clear guidance and strategies to support the workforce in implementation of privacy laws and regulations on the job, CAI, in partnership with the Legal Action Center (LAC), was awarded $1M a year for five years to serve as the National Center of Excellence for Protected Health Information (CoE for PHI) by the Substance Abuse and Mental Health Services Administration (SAMHSA). The CoE for PHI will develop and disseminate training, technical assistance and educational resources related to protected health information to improve application of federal health privacy laws by staff working in mental health, substance use disorder, and school settings and improve access to accurate information among consumers and families.

“Through our own experience providing training and technical assistance to healthcare providers, we understand how difficult it can be to interpret and apply privacy laws on the job. We also know how hard it can be for healthcare consumers to understand their rights to confidential care.” says Vice President at CAI, Dawn Middleton. “Working in partnership with LAC, and a National Advisory Group comprised of associations that represent consumers, families, healthcare providers, mental health and substance use disorder providers, we know we can do more to help consumers understand their rights, and support individuals at the front-lines of care in accurately and confidently implementing privacy regulation in practice.”

CAI brings unique strength to the CoE for PHI as a leader in translating complex concepts and information for adults to improve understanding and application in their lives and on the job. LAC brings more than forty years’ of experience interpreting federal privacy laws for substance use disorder information, and is a recognized expert in training a variety of audiences on privacy protections for sensitive health information. Our approach will ensure individuals living with mental and SUD are able to attain the quality care they need to support long-term recovery.

For more information about this initiative, please email the Project Director, Dawn Middleton at

About the Center of Excellence for Protected Health Information: The CoE for PHI is administered by CAI in partnership with the Legal Action Center (LAC) and is funded by the Substance Abuse and Mental Health Services Administration (SAMHSA). It is charged with developing and disseminating resources, training and technical assistance to improve stakeholders’ understanding and application of federal privacy laws and regulations for persons seeking or receiving treatment for substance use disorders and mental illness. The CoE for PHI will respond to the needs of various stakeholder groups, including consumers, families, healthcare providers in integrated care settings and specialty mental health and substance use disorder practices, educational institutions, state agencies, and communities. For more information about the Coe for PHI, visit our website:


1. Substance Abuse and Mental Health Services Administration. (2017). Key substance use and mental health indicators in the United States: Results from the 2016 National Survey on Drug Use and Health (HHS Publication No. SMA 17-5044, NSDUH Series H-52). Rockville, MD: Center for Behavioral Health Statistics and Quality, Substance Abuse and Mental Health Services Administration. Retrieved from 
2. Mental Health America. Website accessed 13 August 2018. 
3. Woolf Steven H, Aron Laudan. Failing health of the United States BMJ 2018; 360 :k496 
4. Beth Han et al., Receipt of Services for Behavioral Health Problems: Results from the 2014 National Survey on Drug Use and Health, SAMHSA (Sept. 2015), [].