Your administration needs to establish a mandate requiring health systems that have data sharing capabilities to share their Covid-19 data in the next eight months. This includes Covid-19 test results, vaccination information, and other critical data.
Dear President Biden,
I know you have a very full agenda and several initiatives you plan to achieve early in your term, including ensuring enough Covid-19 vaccinations are available for all eligible Americans by the end of May, and a pledge to return to a semblance of normalcy by July 4. Those are lofty goals that will require seamless coordination between the drug manufacturers, vaccine supply chain, and the delivery side of the health system. The initial rollout of the Covid-19 vaccine in the U.S. has had its fair share of setbacks, but the widespread rollout to the general population will depend on our ability to provide actionable data to the right people at the right time. While your recently enacted American Rescue Plan Act includes critical funding for standards-based data sharing and other key areas, the greater healthcare community, including providers and payers, must work together to collectively leverage the funds and prioritize data sharing.
Establish a Clear Mandate for Data Sharing
National policies enacted over the last several years have created a massive amount of digital information (DX), which is now available to help solve some of healthcare’s most systemic problems. For example, the shift from fee-for-service to value-based care relies on access to patient information, which empowers caregivers to assess patients and make informed decisions about who is in most need of care and/or an intervention. Yet, despite the existence of that data, getting access to it can be daunting.
Data sharing is hindered by electronic health records (EHRs)—systems that support the workflows of provider organizations. They are numerous and unique in regards to how and where they capture data. There are well over 1,000 different EHR software systems in the US. Sharing data between these systems has been a challenge that the health IT community has been tackling for almost 15 years, if not more.
President Biden, to effectively and rapidly vaccinate all U.S. adults, we need the ability to track a series of key data points, including number of shots in arms as well as vaccine lot identifiers: manufacturer, delivery date, when the vial was opened, number of doses in the vial, and more. This information must be tracked irrespective of where the patient goes for his/her shots. Your administration has already taken a few steps to improve interoperability with your executive order on ensuring a data-driven response to Covid-19 in January as well as the recent passage of the American Rescue Plan Act. Both of these initiatives address the crucial need for accurate and timely data to make informed decisions as they relate to vaccine distribution and future health risks.
However, your administration needs to establish a mandate requiring health systems that have data sharing capabilities to share their Covid-19 data in the next eight months. This includes Covid-19 test results, vaccination information, and other critical data. Your recent executive order mandates that each federal agency designate a senior official to serve as their agency’s lead to work on pandemic-related data issues, including data collection and sharing. However, the mandate does not outline a specific timeframe for reporting Covid-19 data. Once health systems are mandated to leverage the data sharing technology already in place by a specific timeframe can local, state, and federal public health officials then determine where gaps are in the national vaccination strategy.
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Learn from the Past & Prepare for the Future
Early in the pandemic, we needed access to Covid-19 tests, testing sites, and data. It was challenging to get all three. For the country to learn about and better understand the virus, we really needed testing to understand the prevalence and the spread of the virus. Massachusetts was an early “hot spot” of the Covid-19 outbreak, and despite our desire to control things it was difficult to get a handle on the magnitude of the problem due to a lack of testing.
As access to tests (and quality of tests) improved, the next hurdle was making test results data publicly available. In the U.S., the majority of test results are reported electronically, but to do so effectively new code systems had to be developed. Sharing results was cumbersome. Oftentimes, they were reported via spreadsheets or other documents that were faxed into a local health department where the numbers were tallied and then reported to either John’s Hopkins or the CDC. Some technology vendors did update their software to support tracking of Covid-19 tests and found ways to electronically share that with state public health departments – but it wasn’t enough. Unfortunately, the U.S. healthcare system implemented a federated approach to sharing Covid-19 test data. Every state had a different process for counting and reporting data, often with a large lag between when the results were reported and when the local public health system entered that data.
It’s hard to understand what’s happening when data collection and reporting varies so greatly. President Biden, let’s not continue to make that mistake. Let’s push the threshold even further by putting the CDC front and center in setting guidelines for collecting and reporting data. We need to take advantage of interoperable EHRs and lab systems that can report this data electronically and in near real-time.
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Interoperability Must Remain Paramount
In March of 2020, CMS and ONC issued a pair of companion interoperability rules to advance the way data is shared between payers and their members, and ultimately between all the key stakeholders: patients, providers and payers. Compliance is required by June 2021, and this path forward is yet another important step in making critical data available where and when it is needed and to empower patients in their own care.
If every patient can access their longitudinal record on their smartphone, there is an opportunity for that information to be available for sharing and dissemination. Requiring the use of a new data sharing standard – HL7 FHIR (Fast Healthcare Interoperability Resources) – will make data more accessible to everyone. By leveraging modern data sharing technology such as FHIR, I’m hopeful that we can find a way to accelerate data sharing and interoperability.
Fortunately, a section of the American Rescue Plan Act addresses this issue by allocating $7.5 billion in funding for improvements necessary to support standards-based sharing of data related to vaccine distribution. Now it’s just a matter of how quickly our healthcare system can apply this funding and pivot to prioritize standards-based data sharing. We have seen how rapidly providers have adapted their operating models to respond to the Covid-19 pandemic. With hospitalization numbers starting to drop, health systems need to now focus on interoperable data sharing. The new ONC Information Blocking rules that go into effect in April 2021 will hopefully facilitate this. The more we can push this to the top of the priority list, the better off we will be as a country.
Ultimately, the true value of interoperability is having access to clean, useful, data that supports the purpose for which it is needed. If the data is needed to support vaccine distribution, there are a set of tools for making that happen. If it’s for providing a new clinician or a pharmacy-based clinic with a longitudinal set of patient information, the information needs to be timely and actionable.
Mr. President, we need to get the data out of its silos and move it to where it can be used to improve both our health and the health of our healthcare system.