Dear Health Care Transformation Community,
We hear a lot about data these days—how it’s helping society, ruining society, and everything in between.
In health care, we know that if used wisely and in line with regulatory standards, data can inform decision making for a wide variety of health conditions and purposes, resulting in policies and programs tailored to the needs of individuals, populations, and their communities. We also know that without insights from data, our public health system during Covid-19 could not track infections, identify or address racial disparities, or efficiently distribute lifesaving vaccines.
Data is often siloed and the sharing of it fragmented, particular pain points in California where, up until this year, we had no requirement for organizations to share data, and where the COVID-19 response highlighted the faults of our public health data sharing infrastructure. Because of these issues, data sharing has been a priority focus for Governor Newsom, consumer groups, business groups, and we were happy to provide support. I’m excited by the work we’ve accomplished to date—helping to define the benefits to consumers, aligning industry players to collaborate, and gaining policy movement—and want to share some of the year’s accomplishments with you below.
Illustrating how a lack of data sharing is a barrier to health care innovation
At our summer speaker series event, we brought together a panel of diverse stakeholders, industry leaders with different perspectives in the healthcare innovation ecosystem, who highlighted that data sharing and interoperability are key to health care innovation and scale.
Our panel of innovators included:
- Dan Brillman, Founder and CEO at Unite Us
- Megan Callahan, Vice President of Healthcare at Lyft
- Abner Mason, Founder and CEO at ConsejoSano
- Alpa Vyas, Vice President and Chief of Patient Experience at Stanford Health Care
Speakers opened the event by describing how data can drive innovation at the individual, community, and public health levels. Alpa explained how data sharing can impact and empower individuals, saying, “Making information available on a personal level, shared across organizations in a meaningful way, begins to help patients and their families create their complete health story.” Dan described how it is often the case that patients don’t even have all of the information they need to coordinate their own care.
Dan went on to explain how we not only need to address how to securely share data, but we also need to discuss how we analyze the data to better serve the population. “Each organization has an incentive to make that person healthier. They need a fuller picture. If you’re an insurance company, medical provider, community-based organization, or state government. They all want better data to do analysis as well to improve how they serve their constituents or patients.”
Abner illustrated the work being done at ConsejoSano with multicultural, low income, and undocumented communities, and why aggregating race, ethnicity and language data is so critical. He mentioned,
“The only way to make headway in reducing health disparities is to first collect race, ethnicity and language data. Then we can identify the disparities among groups, quantify this data, and put in place programs that address disparities. This is not going to work if we don’t have a common statewide repository for data.”
-Abner Mason, ConsejoSano
Public and population health also featured in the conversation. “Data can be our biggest public health intervention to advance the health of many populations,” Alpa added. She cited the COVID-19 pandemic as an example, explaining how data is the key to understanding how to outreach patient population that may not have access to vaccines, and tailor messaging that’s personalized and meaningful to those that are vaccine hesitant. “[Government agencies] don’t have the data to do bespoke outreach to targeted populations in order to get them in to get vaccines,” Megan agreed.
We ended the discussion on how a statewide HIE network is a critical tool to realizing payment reform. In making the case for such a network, Megan said,
“In moving to value-based care, if we pay on outcomes, we need to share data, measure outcomes across modes of care, and track these metrics over time.”
-Megan Callahan, Lyft
Abner took this idea one step further by raising the idea that a statewide HIE network can help reduce care disparities, by enabling the US to tie the information shared to success and quality measures like HEDIS. “[Health plans] would want to invest more. It would drive innovation. They would reach out and find partners to work with them. The necessary infrastructure to make these kinds of programs a reality is data sharing- it’s a statewide HIE.”
Check out the full event recording:
Creating an action plan for improving California’s race and ethnicity data collection and reporting systems
This year, Industry Initiatives looked to connect our work around data sharing with another key area of interest: health equity. We knew before the pandemic that racism and ethnic discrimination often drive health disparities for our communities of color, and COVID-19 only highlighted the deficiencies across our systems when it comes to collecting race and ethnicity data to gain insight into these disparities.
In partnership with our colleagues at SEIU California, Connecting for Better Health, and Manatt Health, we produced a report that outlines why this issue is important, the challenges organizations face in data collection, and what can be done to solve the issue. In this report, “Unlocking Race and Ethnicity Data to Promote Health Equity in California: Proposals for State Action,” we zeroed in on two key recommendations that California health agencies and legislators can take to tackle the issue:
- Developing health information exchange capacity as a centralizing source of race and ethnicity data for plans and providers: leverage our data sharing infrastructure to collect, link, and share data among providers, plans and the state
- Requiring health plans to collect standardized race and ethnicity data across all regulated lines of business: coalesce around shared standards for health plan collection of these key data
Addressing the barriers to race and ethnicity data collection is imperative for all healthcare stakeholders as we work together to address the historical and deeply entrenched structural and programmatic barriers to better care and health for all Californians.
Connecting for Better Health: coalition-building to spur statewide health information exchange
A statewide health information exchange (HIE) network can ensure that we can take care of the whole person and reduce the gaps of information that lead to fragmented service delivery. It helps drive clinical outcomes, provide the data organizations need to accomplish value-based care, and reduce the overall cost of care. Other states have leveraged these networks to collect and share data to support innovation and scale. At our speaker series event, Dan used CyncHealth, the statewide HIE network in Nebraska, as an example of a system that works at scale across the state to drive innovation by supporting interoperability, democratizing data, and cultivating trust.
In California today, we lack a statewide HIE network that can push data across the state seamlessly, both to support patients at the point of care, and at the population level to give our state policymakers insights into population-level health needs. This lack of data sharing has real-world impacts: just listen to the stories from providers like Dr. Hakeem Adeniyi of Sacramento Native American Health Center and patients like Anna Ramsey of Los Angeles to understand how the current system often fails our patients and providers.
This year, Industry Initiatives supported and participated in the launch of Connecting for Better Health, a California-based diverse stakeholder coalition that aims to promote policy that builds capacity to support the development of a statewide health information exchange network in California. Connecting for Better Health developed three policy goals for 2021:
- Compel every provider and health plan to share needed data so that the whole care team, regardless of where they are in the state, has the information they need to serve their patients
- Secure an ongoing source of funding. Other states have leveraged available federal funding to build robust health information exchange infrastructure. It is time for California to do the same.
- Provide for needed statewide data sharing infrastructure while leveraging regional efforts, making sure every stakeholder has the appropriate support to participate.
Connecting for Better Health has been active in weighing in policy discussions this year, submitting letters to legislators in support of legislation, and to state budget leaders regarding the need for better data sharing. The coalition has also published fact sheets on topics like HIE support for public health efforts, federal policy developments, and how California can improve its vaccination efforts through data sharing.
In addition to monitoring and supporting sound HIE policy movement, Connecting for Better Health (CBH) has hosted coalition meetings and events to elevate data sharing solutions in California, both from state and national leaders alike. Highlights include:
- CBH April event, “Data Sharing to Promote Public Health Equity in California,” which featured speakers such as Dr. Alice Chen of Covered California and Dr. Hector Rodriguez of UC Berkeley to explain how data sharing can help support patient’s social needs and help the state achieve its health equity goals
- CBH September 30 meeting, where representatives from the Michigan Health Information Network (MiHIN) and Blue Cross Blue Shield of Michigan described how financial incentives can support providers to onboard to HIE, and reiterated that we can get this work done to build out infrastructure in months, not years, with a shared sense of urgency
AB 133: An opportunity for data sharing in California
Our collective work around data sharing in 2021 culminated in Governor Gavin Newsom signing Assembly Bill (AB) 133 into law, a landmark budget bill that aims to enhance the health care infrastructure in California by increasing public health monitoring, expanding Medi-Cal eligibility, and investing in behavioral health initiatives.
Notably, AB 133 mandates real-time data sharing among providers and health plans by 2024. The legislation also requires the development of a Data Exchange Framework that includes a data sharing agreement, as well as policies and procedures governing the exchange of health information among state health care entities and government agencies. State health leaders have since created a Stakeholder Advisory Group to develop this Data Exchange Framework, with discussions underway at state. To help shape this work, Connecting for Better Health has been working to define to the principles we need to frame this work, and the key elements we need to tackle to make real-time data sharing a reality.
Industry Initiatives is excited to continue to actively partner in this coalition work with other supporters to ensure California builds out the framework and infrastructure we need to spur innovation.
Promoting data sharing in the new year
AB 133 reflects the policy movement we can achieve when diverse stakeholders collaborate and coalesce around a common shared interest. Yet we know work remains to ensure widespread data sharing becomes a reality, and that we continue to center diverse patient, caregiver and provider voices in this work.
Next year, the work continues to ensure that the state leads to create the infrastructure, standards and funding mechanisms that will make real-time data sharing in 2024 a reality. We have to make sure we continue to highlight how data sharing is critical to innovation, and to improving health equity in the state.
I call on all my health care transformation colleagues to join me in this effort, and lend their support to Connecting for Better Health! Let me know if you’re interested or have questions about this important work!