May 15, 2023
The Honorable Chris Holden, Chair Assembly Appropriations Committee 1021 O Street, Suite 8820
Sacramento, CA 95814 Re: AB 1011: OPPOSE
Dear Assemblymember Holden:
On behalf of Connecting for Better Health, we thank you for the opportunity to provide feedback on AB 1011, and on the important topic of data privacy. We submit this letter on behalf of Connecting for Better Health and to take a position of opposition to AB 1011. With several initiatives underway to determine gaps in privacy policy related to the sharing of health and social care information in California, we believe additional stakeholder conversations and a more comprehensive framework are needed to address the issue.
Connecting for Better Health is a coalition representing diverse health care organizations and leaders including consumers, providers, and health plans, that supports the advancement of health data exchange policy in California. Our vision is that every Californian and their care team have the information and insights they need to make health care seamless, high quality, and affordable.
A comprehensive solution to address privacy policy gaps is needed to ensure protections are in place to govern propose use and disclosure of “social care information” and other information that is not currently protected by state and federal law. The Legislature purposefully suspended certain state privacy laws two years ago for Medi-Cal’s 1115 waiver program, CalAIM, Enhanced Care Managed and Community Supports to better facilitate the sharing of information across organizations and sectors and while further assessment of privacy law needs takes place. In tandem, the Department of Health Care Services developed a voluntary universal consent form (ASCMI) for these programs that is currently being piloted and assessed in the field with Managed Care Plans, community-based organizations, health care providers, counties and health and community information exchanges. These pilots have only just started, and further assessment of this policy and current best practices in California is needed to determine a more comprehensive approach to privacy law across the health and social services sectors.
AB 1011 narrowly governs the use and disclosure of social care information by organizations participating in “closed loop referral systems,” leaving out protections for social care information captured on other forms of technology or on paper. This policy would create more complicated compliance procedures for community-based organizations and other organizations participating in closed loop referral systems with various partners, but more importantly, leaves out protections where social care information is otherwise captured outside these specific types of technology. It is unclear why these data do not warrant the same safeguards as those captured by closed loop referral systems.
Other issues remain with this current text of the bill as well. The plain text of section (61)(a) prohibits any disclosure or communication of social care information through certain technology systems for any consideration, which may impede the ability for health care providers and community-based organizations to receive payment for services rendered where they may need to utilize system data to clear prior authorization with a health plan or in the claims submission process. This bill may also prohibit providers, plans, counties, and other organizations who contract with these vendors and pay licensing and service fees from receiving these data for both population-level insights and for individual, ordinary care coordination, even when those systems are utilizing these data to benefit members and patients, and where they do not sell individual data.
Section (61)(b) in AB 1011 also places a blanket restriction on the use of social care information through these technology systems “for any purpose or purposes other than the purpose or purposes for which that social care information was collected or generated.” Other privacy laws, like the Healthcare Insurance Portability and Affordability Act (HIPAA) similarly rely on an analysis of the purpose for which data is shared in determining whether information may be secondarily used or disclosed. However, this bill differs in that it restricts uses and disclosures of data to the initial purpose for which it was obtained. There are likely cases where data may be collected, for example, for a noted initial purpose of facilitating a nutrition-related referral, that then is utilized by a care coordinator to facilitate another social need referral. Restrictions on secondary uses of data, especially and including the sale of data, warrant examination but an outright prohibition may end up harming individuals where the sharing of such data stands to benefit them and their ability to access vital health and social services. The potential for data sharing to benefit individuals should be contemplated in the development of additional privacy laws.
California and organizations on the ground are making significant investments to support CalAIM and other social needs programs across the state. While the general intent of the bill to address privacy law gaps is important and necessary, the timing of the bill will not allow for learnings from the state’s ASCMI pilots and CalAIM implementation to inform policy development. Additionally, several provisions serve to go beyond the stated intent of the bill to prevent the sale of data, especially where such sharing of data would benefit the individual and help address their health and social needs. For these reasons, we urge a no vote.
Sincerely, Timi Leslie
Director, Connecting for Better Health President and Founder, BluePath Health
