Overcoming data fragmentation is key to avoiding future health care crises

Health data fragmentation didn’t garner enough attention until our health care system had nearly reached its breaking point at the height of the COVID-19 pandemic. We tout ourselves as one of the world’s most technologically advanced countries, yet gaining access to actionable data – and getting it where it needs to go – has been a decades-long struggle.

This health care information gap spans millions of data sources, and results in an overwhelming lack of collaboration caused by siloed data. Data collection is not the problem, however. There has been an explosion in the amount of health data collected in the U.S. in recent years, alongside countless efforts and billions of dollars spent incentivizing electronic health records adoption.

Consider fragmented data on COVID-19 vaccination history as an example. Throughout the pandemic, people have been tested at sites run by state or local public health agencies, and they have received home tests from the federal government or purchased them directly over the counter. But do these disparate health care organizations share data when a person tests positive for COVID-19 and receives treatment? There is no easy way to obtain patient-specific data to get a 360-degree view, or to pull in other factors such as social determinants of health.

More recently, there have been a small but concerning number of hepatitis outbreaks among children in the U.S. In states including Colorado, public health agencies have not tracked hepatitis cases caused by something other than viruses according to The Denver Post, and no one can say definitively if these cases are unusual.

We need a neutral, ubiquitous infrastructure linking these health care datasets, enabling us to gain insights on individual patients while also viewing the big picture.

Bridging the data silos

So how do we bring disparate data sources together so that clinicians, researchers, and health officials can draw meaningful conclusions that inform critical health decisions?

We need to be far more effective with the information we collect and share by creating central repositories of systems that talk to each other and allow for sharing data from multiple sources. For example, if you want to know whether one variant of COVID-19 is more severe than another, comprehensive data on testing, infections, vaccines and related medical appointmentsare essential. Scaling our ability to monitor data related to COVID-19 testing and breakthrough infections would be a solution for quickly addressing emerging policy questions and treatment guidance.

Many imagine the federal government would be the catalyzing agent, but by design, government agencies are not well-suited to overcoming data fragmentation on a large scale. Federal, state and local organizations are ideal for playing roles in a collaborative national effort to create repositories of real-world data to inform responses to health emergencies.

But in moments of crisis, such as a pandemic, we must be able to connect health data from across these silos while still preserving individual patient privacy. Security and privacy must be paramount for any connectivity solution, given the highly sensitive nature of this rich data. If we can solve this fragmentation, we could potentially prevent or lessen future human and economic tragedy at the scale we’ve suffered in the last few years.

Industry must come together to solve fragmentation

Leveraging this model in the U.S. means bringing a multitude of agencies and health systems together and devising a comprehensive plan to organize and share health data.

Beyond federal and state resources there are many organizations in the private and non-governmental organization sectors equipped to bring technical expertise, agility and resources that could prove invaluable to a U.S. approach. These organizations are already poised to contribute, and it has become clear that public and private partnerships are necessary to solve fragmentation.

Allowing connectivity across previously siloed datasets would enable us to answer numerous pressing questions more effectively. Concerning COVID-19, for example, the data may reveal the safety and efficacy of various vaccines and the incidence and progression of the disease generally and in various subpopulations.

In addition, this improved infrastructure can answer the broader questions about public health policy's impact on health equity. While this goal will be challenging, a good starting point would be to adequately scale up health data connectivity in the U.S. Doing so will help us inform our critical public health decisions and policy.

Brantley is president and general manager, provider solutions, for Ciox Health, a health information management company in Alpharetta, Georgia