The COVID-19 pandemic is providing a real-time education about the value of collecting and sharing high-quality health data — and the havoc that major information gaps can wreak on public health. If we had more efficient and universal systems for capturing and transmitting these data, our pandemic response could be improved in countless ways.

Contact tracers could be reaching patients with positive test results much faster instead of having to search for phone numbers, which reportedly are missing from as many as half of all COVID tests. If researchers had real-time access to clinical data from health systems, they could be rapidly learning what treatments work for patients with the novel coronavirus. Local governments could be using the same data to spot early signs of COVID-19 outbreaks and adjust public health policies accordingly. Most of these missing data exist somewhere, such as in an electronic health record, but an array of technological, legal, and organizational obstacles continues to make them inaccessible to the right people when they are needed most.

The value of real-time access to accurate health data doesn’t apply only to the coronavirus, and the barriers to gathering them aren’t new. Before the pandemic, more than half of all health records for one large health system were missing race or ethnicity data — and they were not alone. Forty percent of hospitals report being unable to share data electronically with local public health agencies. Only 7% of nursing facilities report in a forthcoming study that their electronic health record systems can communicate with those used by their local hospitals.

The federal government has also long recognized these challenges and the role that federal regulations could play in addressing at least some of them. For years, passing such sweeping regulations had proven politically and legally challenging.

In March, the Centers for Medicare & Medicaid Services (CMS) and the Office of the National Coordinator for Health Information Technology (ONC) finally released federal rules designed to spark significant nationwide progress on the collection and sharing of health data. The rules — more than 2,000 pages long — are significant in their breadth and depth. They affect nearly every entity in the US health care system.

Distracted by COVID-19

Understandably, health plans and providers were busy preparing for COVID-19 when the rules were finalized, and many people are unaware of the impending deadlines or their significant implications for organizations’ data technologies, policies, and protocols. Some of the deadlines may change due to the continuing COVID-19 pressures, according to recent comments from the ONC, but nothing has been announced yet.

CHCF has heard from Medi-Cal plans and safety-net providers that many feel unprepared to comply with the new standards. In an effort to advance that preparedness, CHCF has funded educational and technical assistance efforts. The first one was producing the following presentation to provide a high-level introduction to these complex rules with a focus on implications for health plans, which face some of the earliest and more daunting compliance deadlines. The presentation contains information relevant to other types of health care entities as well, and CHCF encourages organizations to download the slides to inform their staffs about the work that lies ahead.

Initially, our focus is on helping organizations prepare to meet these rules’ minimum requirements. Our ultimate goal is to shift to helping organizations think about how to take advantage of the expanded capabilities these rules aim to enable.

By lifting the floor on the quality, standardization, and accessibility of data throughout the US health care system, the rules will raise the ceiling on what is possible. For example, a case manager could automatically receive alerts when a patient misses an essential screening. A health plan could access the last five years of claims data for a new member, enabling a seamless transition to a new care provider. A patient could pull up a recent lab result on their phone to show a new doctor.

CHCF is expanding its work on data exchange in other realms beyond these federal rules, particularly on state and local levels in California. Through grants, we are supporting:

• The launch of the Center for Data Insights and Innovation, a hub for improving the use of data within the California Health and Human Services Agency
• The California Health Information Exchange Onboarding Program (Cal-HOP), an initiative to increase Medi-Cal provider participation in data exchange
• A forthcoming publication series that will inform policymakers about improving data exchange statewide, including an overview of potential approaches, a landscape of the data-sharing solutions already in use locally and regionally, and a summary of key use cases that a statewide approach could enable

This field is complex and rapidly evolving, so CHCF will soon publish The Data Exchange Dispatch, a regular email newsletter sharing publications and relevant resources with the people leading data exchange work throughout California. Sign up and look for the first edition in your inbox next month.

Hong Truong

Hong Truong is a former senior program investment officer for the CHCF Innovation Fund, where she made mission-driven investments in health care information technology and tech-enabled service businesses, and leads CHCF’s grant portfolio on data exchange and interoperability. Read More

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