The fragmentation of health data did not attract enough attention until our healthcare system almost reached the breaking point in the midst of the COVID-19 pandemic. We advertise ourselves as one of the most technologically advanced countries in the world, but gaining access to data that is applicable to action – and getting it where it is needed – has been a struggle for decades.
This gap in health information covers millions of data sources and leads to a huge lack of cooperation caused by isolated data. However, data collection is not a problem. In recent years, there has been an explosion in the amount of health data collected in the United States, along with countless efforts and billions of dollars spent to stimulate the adoption of electronic health records.
Consider an example of fragmented data on the history of vaccination against COVID-19. During the pandemic, people were tested on sites run by state or local public health agencies, and received home tests from the federal government or purchased them directly at the counter. But do these different health organizations share data when a person is positive for COVID-19 and receiving treatment? There is no easy way to get patient-specific data to get a 360-degree view or to attract other factors, such as social determinants of health.
More recently, there have been a small but alarming number of hepatitis outbreaks among children in the United States. Denver Postand no one can say for sure whether these cases are unusual.
We need a neutral, ubiquitous infrastructure that connects these healthcare datasets, which allows us to get an idea of individual patients while looking at the big picture.
Overcoming data silos
So how do we bring together different data sources so that clinicians, researchers, and health professionals can make meaningful conclusions that inform critical health decisions?
We need to be much more efficient with the information we collect and share by creating central repositories of systems that talk to each other and allow data to be shared from multiple sources. For example, if you want to know if one variant of COVID-19 is more severe than another, comprehensive testing data, infections, vaccines, and related medical appointments are essential. Extending our ability to monitor data related to COVID-19 testing and sudden infections would be a solution to quickly address emerging policy issues and treatment guidelines.
Many imagine that the federal government would be the catalyst, but government agencies are not designed to tackle large-scale data fragmentation. Federal, state, and local organizations are ideal for playing a role in joint national efforts to create real-world data repositories to inform responses to health emergencies.
But in times of crisis, like a pandemic, we need to be able to link health data from all these silos while maintaining the privacy of the individual patient. Security and confidentiality must be paramount to any connectivity solution, given the extremely sensitive nature of this rich data. If we manage to resolve this fragmentation, we could potentially prevent or reduce the future human and economic tragedy on the scale we have suffered in the last few years.
The industry needs to come together to allow fragmentation
Using this model in the United States means merging multiple agencies and health systems and developing a comprehensive plan for organizing and sharing health data.
Beyond federal and state resources, there are many organizations in the private and non-governmental sectors equipped to provide technical expertise, flexibility, and resources that could prove invaluable to the U.S. approach. These organizations are now ready to contribute, and it has become clear that public-private partnerships are needed to address fragmentation.
Allowing connectivity between previously divided datasets would allow us to answer many pressing questions more effectively. With regard to COVID-19, for example, the data may reveal the safety and efficacy of different vaccines and the frequency and progression of the disease as a whole and in different subpopulations.
In addition, this improved infrastructure can answer broader questions about the impact of public health policy on health equity. Although this goal will be a challenge, a good starting point would be to adequately increase the coherence of health data in the United States. This will help us keep our critical public health decisions and policies informed.
Brantley is president and general manager, solution provider for Ciox Health, a health information management company in Alpharetta, Georgia