California is a very big state and boasts some of the world’s biggest and most leading-edge health systems. Because of its size, however, the Golden State’s health information exchange ecosystem is often fragmented and siloed, with many regional HIEs serving providers in their nearby footprint.
Health: California’s efforts to exchange health data across the state
In July 2021, California Gov. Gavin Newsom signed bill AB 133 into law. It requires healthcare organizations statewide to link up their data-sharing capabilities. The legislation calls on healthcare stakeholders to determine the shape and policies of what that might look like but mandates real-time exchange of treatment, payment and healthcare operations information starting in 2024.
Since then, healthcare leaders across California have been working in earnest to make that happen – starting with a data sharing agreement that will help govern information exchange across hospitals, physician practices, health plans, skilled nursing facilities, psychiatric treatment centers and more.
It is, in other words, a big and important project.
Timi Leslie, founder of BluePath Health and a leader at Connecting for Better Health – the collaborative of public- and private-sector healthcare stakeholders that are helping lead this enormous effort – joined us to discuss the policy and technology challenges around the statewide exchange and highlighted the huge benefits it could achieve for patients and for public health preparedness.
Policymakers in California are seizing a big opportunity to strengthen the state’s disjointed regional data-sharing initiatives and establish the Golden State as a national model.
Both the budget approved by the Legislature and the budget proposed by California Governor Gavin Newsom include $2.5 million for the advancement of HIE leadership in the state. Additionally, there is current legislation attempting to advance HIE in the state. We should work together to develop and create effective data exchange projects for the future using the lessons learned from the past. However, California has already tried to establish a statewide data exchange, but that effort was abandoned almost ten years ago. Policymakers would be well to look into the issues that prevented prior attempts.
Although regional HIE activities in Santa Cruz, California, began in 1996 (see A Timeline of Health Data Exchange in California), statewide HIE efforts didn’t really get underway until just over ten years ago. When the state obtained more than $100 million in federal funds as part of the Health Information Technology for Economic and Clinical Health (HITECH) Act in 2009, a scaled endeavour to establish a statewide system of data interchange got underway. The programme encountered difficulties right away, such as a lack of state-level guidance, federal delays in establishing national standards, leadership turnover, and other organisational difficulties.
With the expiration of the Office of the National Coordinator for Health Information Technology (ONC) Cooperative Agreement funds, a provision of the HITECH Act that provided money for HIE, California’s statewide data exchange initiatives will finally come to an end in 2014. The regional health information organisations (HIOs) structure that is still in place today is the result of the state’s incapacity to resolve its problems in the long run.
We asked Dawn Gallagher, a recognised authority on state-wide data exchanges, to summarise her findings after reading research and speaking with some of the key players involved in the conception and execution of California’s statewide initiatives from 2009 to 2014. (See below for a list of interviewees.). We \ share Gallagher’s answers to key questions about that \seffort, which policymakers and other stakeholders can \ consider to reform HIE today.
Every Californian, regardless of where they live, should be able to walk into a doctor’s office, a pharmacy, a county social service agency, or an emergency room and be confident that health and human service providers will have access to the information they need to provide safe, effective, whole-person care—all while keeping our data private and secure.
This is the purpose of California’s Health and Human Services Data Interchange Framework, a first-of-its-kind statewide data-sharing agreement that will begin in 2024 to speed and increase the exchange of health information among health care providers, government agencies, and social welfare programmes.
The data exchange framework is not a new technology or a centralised data repository; rather, it is an agreement between health and human services systems and providers to properly communicate information.
This means that every health care provider will have access to the information they need to treat you quickly and safely; health care, behavioural health, and social service agencies will be able to connect to deliver what Californians need to be healthy; and our public health system will be able to better assess how to address the needs of all communities.
Over the last year, hundreds of specialists and members of the public have worked to create a framework that embodies these ideas. Learn more about the progress being made toward seamless data interchange, which will improve Californians’ experience of health care, promote California’s whole-person care transformation, and put people in control of our health data.
California has long been a leader in modernising health care, increasing coverage, and enhancing residents’ access to care and social services. To be successful, however, all of these programmes require a dependable, secure, and trusted data interchange system so that patients and clinicians can access the health information they demand, wherever they are and whenever they need it.” Read more in this op-ed in the San Francisco Chronicle by Dr Sandra Hernádez, CEO of the California Health Care Foundation and member of the HHS Data Exchange Framework Stakeholder Advisory Group.