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By Claudia Williams, Special to CalMatters

Claudia Williams is CEO of Manifest MedEx, Claudia.williams@manifestmedex.org.

California has had strong leadership in the COVID-19 pandemic. But, like other states, we are struggling to get COVID-19 data right. 

Between the disclosure of a missing backlog of a quarter of a million lab results and announcement of a $15.3 million six-month contract with Optum to fix COVID-19 data, California is reckoning with health information issues. 

With decisive action, these current challenges will be fixed. This crisis could also bring deeper and more fundamental change. Not just duct tape patches, but bold new investments in modern technology – the sort of agile innovation surge that turned initial launch failure of Healthcare.gov in 2013 into a platform used by 8.3 million people today. What would this look like in California? I have four recommendations:

1. Invest in health data leaders with real authority. 

The Department of Public Health recently announced Scott Christman as the deputy director for Health Data Analytics at the Department of Public Health. He joins John Ohanian who is chief data officer for Health and Human Services. This is a good start. Both are strong leaders who understand the working of state government and the complexity of health data. 

Ohanian’s role should be a single point of accountability and expertise to lead the state in building modern health data systems. Taking cues from the federal chief technology officer, he can bring new practices, talent and outside partnerships into the leadership circle.

2. Build for all, not just for the government.

The challenges faced by the state are the same we all face in health care: matching patients’ records, de-duplicating data, building out data connections, combining data from different sources. With smart investments, strategic partnerships and the mindset of building a data collective not a resource just for government, these could be tackled together. This demands a transition from hiring a “vendor” to get a task done to investing in a shared resource that is mutually governed.

The model of “building for all” is thriving in other states. From Maryland to Nebraska, states have partnered with nonprofit organizations to build shared health data utilities. In these examples, the state sits on the board but does not control the organization. Instead it is governed collectively, in the interest of all participants. All contribute to the costs of the effort, share in setting priorities and access data, as permitted by state and federal law.

The idea of building for the government and other users at once is also embedded in federal policy. Medicaid technology funding favors reusability. Nonprofit data utilities in other states are building out statewide electronic patient matching tools, encounter alert services and record locator services for use by provider and plan participants and also by state programs.

3. Mobilize statewide progress.

Some things are best left to counties, but not California’s health data infrastructure. A county approach requires 58 different programs, each with significantly different resources, and results in diffusion of the talent and structure needed for success. 

California does not today have a model for achieving statewide health data connectivity. That plan should be created now, when the need for health data sharing is so visible in this pandemic. Start with setting clear goals for what progress looks like. What information should be universally shared, by whom and by when? 

4. Create the public health infrastructure of the future.

With any luck, California will soon be launching the largest vaccination campaign in history. Our state needs the data and infrastructure to support this kind of distributed “everyone in” campaign – a system that taps the power of insight and prediction to be smarter and faster in future public health responses. 

To be a leader in health data, as it has been a pioneer in COVID-19 policy, California needs to invest in strong leadership, build for all, mobilize statewide progress and create the public health infrastructure of the future. The time is now.

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