The fragmentation of health data did not attract enough attention until our health system almost reached a tipping point at the height of the COVID-19 pandemic. We advertise ourselves as one of the most technologically advanced countries in the world, and yet gaining access to data that can be applied - and taking it where it should be - has been a struggle that has lasted for decades.
This gap in health care information encompasses millions of data sources and results in a huge lack of cooperation caused by the extracted data. However, data collection is not a problem. There has been an explosion in the amount of health data collected in the United States in recent years, with countless efforts and billions of dollars spent on encouraging the adoption of electronic health records.
Consider fragmented data on the history of vaccination against COVID-19 as an example. During the pandemic, people were tested at locations run by state or local public health agencies, and received home tests from the federal government or bought them directly over-the-counter. But do these different health organizations share data on when a person is positive for COVID-19 and when they are being treated? There is no easy way to obtain patient-specific data to obtain a 360-degree view, or to withdraw other factors such as social determinants of health.
Recently, there has been a small but worrying number of hepatitis outbreaks among children in the United States. In states including Colorado, public health agencies have not monitored cases of hepatitis caused by anything other than viruses according to Denver Postand no one can say for sure whether these cases are unusual.
We need a neutral, ubiquitous infrastructure that connects these sets of health data, enabling us to gain insight into individual patients while at the same time looking at the bigger picture.
Data silo bridging
So how do we combine different data sources so that clinicians, researchers, and health professionals can draw meaningful conclusions that inform critical health decisions?
We need to be far more efficient with the information we collect and share by creating central system repositories 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 difficult than another, comprehensive data on testing, infections, vaccines, and related medical examinations are required. Increasing our ability to monitor data on COVID-19 testing and penetrating infections would be a solution to quickly address new policy issues and treatment guidelines.
Many imagine that the federal government would be a catalyst, but by design, government agencies are not suitable for overcoming data fragmentation on a large scale. 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, such as a pandemic, we must be able to connect health data from all these silos, while preserving the privacy of individual patients. Security and privacy must be paramount for any connectivity solution, given the very sensitive nature of this rich data. If we can address this fragmentation, we could potentially prevent or reduce future human and economic tragedy to the extent we have suffered in recent years.
The industry must come together to address fragmentation
Using this model in the United States means merging many agencies and health systems and devising a comprehensive plan for organizing and sharing health data.
In addition to federal and state resources, there are many organizations in private and non-governmental organizations that are equipped to bring technical expertise, agility, and resources that could prove invaluable to U.S. accession. These organizations are already ready to contribute and it has become clear that public and private partnerships are necessary to address fragmentation.
Enabling connectivity via previously separated datasets would allow us to answer a number of burning questions more efficiently. As for COVID-19, for example, data can reveal the safety and efficacy of different vaccines and the frequency and progression of the disease in general and in different subpopulations.
In addition, this improved infrastructure can answer broader questions about the impact of public health policy on health equity. While this goal will be challenging, a good starting point would be to adequately increase the connectivity of health data in the United States. This will help us inform about our critical decisions and public health policy.
Brantley is President and CEO, Solution Provider, for Ciok Health, a health information management company in Alpharetta, Georgia