Data siloed between government agencies have long prevented programs from doing their best work to serve people more holistically, whether they are participating in the CalFresh program, utilizing the state’s digital vaccine record portal, or signed up for numerous services across California. A data-sharing system in which individuals can allow or deny the exchange of their personal information across various programs and domains could streamline processes and facilitate access to care for other programs for those who need them.
That’s the rationale behind a national push to develop technology for a Consent Service Utility by the not-for-profit think tank Stewards of Change Institute (SOCI). The CSU would be replicable and customizable for use in California.
An outgrowth of the group’s collaboration with Stanford University Center for Population Health Sciences, the CSU’s development is part of Project Unify, a SOCI initiative to advance interoperability and information sharing across the social determinants of health and well-being. The project’s larger goal is to advance health equity and social justice, as well as value-based, person-centered care.
The pandemic, which laid bare vast inequities in health care and access to resources and shined a light on the fragility of many sectors of society, offers an excellent opportunity to innovate in ways that support integrated and coordinated services, said SOCI President Daniel Stein.
“If you want to achieve coordinated care in any meaningful way, you have to facilitate the consent of information that is flowing in different directions,” Stein said. “There are sizable obstacles in the many siloed processes of getting consents and being able to manage them. They create enormous administrative burden and really get in the way of improving patient care.”
John Ohanian, Chief Data Officer for the Center of Data Insights and Innovation at the California Health and Human Services Agency, is working with stakeholders to develop a Data Exchange Framework to improve how health information is shared among health care entities and social services agencies.
“Managing consent is important work and something we are evaluating as we work to improve coordination between health and social services sectors to help promote health equity and whole-person care,” said Ohanian about the potential for the Consent Service Utility in California.
Currently, approaches to securing informed consent, whether for educational institutions, law enforcement, or health care, run the gamut in terms of how consent will be secured, how long they last, what personal health information is covered or exempt, or who or what entity has access to the information. Many written consents cannot be accessed online, or they exist only within closed systems or are paper-based. Stein imagines a common digital dashboard, allowing an individual to specify consent for a variety of possible uses that could be accessed across various sectors of society when needed by a care coordinator, social worker, or another provider – whether in the healthcare world or in social, human services and/or education.
“What we are working to design is a replicable, open-source technical solution for getting permission to exchange information from a person or their guardian so the professionals who need it can get relevant health care records, probation reports, behavioral health data or other information,” Stein said.
Systems would be designed on the back end to conform to each state’s privacy laws. For example, someone attempting to coordinate substance use treatment for a patient who is also on probation and has other health care requirements that need to be addressed could get access to those records if the person’s consent was already expedited by the CSU.
SOCI’s implementation partners for the CSU project are the two federally funded Integrated Care for Kids sites in New Jersey and New York. Stein said he has talked with state technology officials in California about launching a pilot in that state as well. On Sept. 10, SOCI introduced the CSU proposal as part of the 2021 Tech Forum put on by the Office of the National Coordinator for Health Information Technology (ONC).
Stein added that such a system could be useful in allowing individuals to divulge their vaccination status with various entities such as sports venues or hospitals without having to physically show proof of vaccination.
Californians can now voluntarily download a digital version of their COVID vaccination record to use as needed. The U.S. currently does not have a vaccine passport system, although the concept is under consideration.