Free and fluid data exchange has been critical to the fight against COVID-19 and will remain vital due to Long COVID.
Information has been our biggest weapon against COVID-19, and a steady stream of new data is how we keep that weapon sharp. Everyone wins when the walls and silos that keep information separate fall and experts can exchange knowledge. But even as many people act as if the pandemic is over, doctors are still confirming a significant number of “long Covid” cases in which people suffer from coronavirus symptoms for many months after their initial illness. This is much more common than most people think – nearly one in five adults infected with COVID-19 develop persistent symptoms.
Patients with long-term COVID will usually test negative for the coronavirus after a few weeks, but their symptoms stem from the damage the virus has already done. Headache, nausea, shortness of breath, joint pain, or memory loss could mean a long COVID and can manifest months after the patient contracts the virus, making it difficult to tell if the two bouts of disease are related. To properly combat Long COVID’s emerging toll, public health organizations need the best information possible. Interoperability between organizations and systems to make data sharing faster and easier is the key to making this possible.
Patients who experience persistent symptoms of COVID usually see their private providers, whose files may be separated from laboratory records kept by state health organizations. These state agencies collect a lot of data but often fail to easily connect the person with their private providers on Long COVID. This creates a huge information gap that prevents valuable information from being shared with all parties.
One of the main problems preventing a seamless response to the long-standing COVID is that collection and analysis systems can vary from state to state, agency to agency, and institution to institution. Each organization has its own methods and systems, which makes comprehensive information collection and analysis difficult.
Some systems start with pre-digital media such as paper documents, which take a long time to go from a filing cabinet to a data entry desk to a database. Others keep the different departments and their systems strictly isolated, which prevents cases from being crossed. Each of these problems slows down the rate at which we analyze and thus understand the nature of Long COVID.
See also: Successful integration is a team sport
The solution: standardize
The existing infrastructure around COVID-19 data collection needs to expand to include data on ongoing symptoms from private providers, hospitals, and other sources. We need a standardized system for sharing and translating data between systems at all levels, from private providers to global organizations such as the WHO. Industry groups such as Health Level 7 International (HL7) have developed systems such as Fast Healthcare Interoperability Resources (FHIR) to help improve structural interoperability that are worth exploring if organizations hope to share data effectively and quickly.
Government, medical and research organizations must adopt comprehensive and robust medical database systems with interoperability at the core. With these in place, you can eliminate backlogs, silos and other sources of data confusion. Without all this noise, the signal on Long COVID will become clearer. The better the data systems we use, the more public health organizations can transfer information between data collection entities and this will enable significant progress in the fight against this painful and debilitating reminder of an ongoing pandemic.
Free and fluid data exchange has been critical to the fight against COVID-19 and will remain vital due to Long COVID. Healthcare organizations at all levels should leverage regulatory incentives that support data exchange and adopt the best possible interoperability system to act almost as a “rosette stone” for other sources of information. If they have systems in place to gather the data they need to fight Long COVID and other lasting damage now, they won’t have to rush to do it later.