Free and fluid data exchange has been vital to the fight against COVID-19, and it will remain vital because of Long COVID.
Information has been our greatest weapon against COVID-19, and a constant stream of new data is how we keep that weapon sharp. Everybody wins when the walls and silos that keep information separated fall away, and experts can exchange knowledge. But even though many people are acting like the pandemic is over, doctors are still confirming significant numbers of “Long COVID” cases in which people suffer from coronavirus symptoms for many months after their initial illness. This is far more common than most people realize: nearly one in five adults infected with COVID-19 develops lingering symptoms.
Long COVID patients will usually test negative for the coronavirus after a few weeks, but their symptoms come from the damage the virus has already done. Headaches, nausea, shortness of breath, joint pain, or memory loss could mean Long COVID, and it can crop up months after the patient contracted the virus, making it difficult to tell if the two bouts of illness are related. To properly combat the emerging toll of Long COVID, public health organizations need the best possible information. Interoperability between organizations and systems to make sharing data faster and easier is key to making that possible.
Patients who experience lingering COVID symptoms usually see their private providers, whose files may be separate from the lab records kept by state health organizations. These state agencies gather plenty of data but often cannot easily connect the person with their private providers about Long COVID. This creates a massive information gap that is preventing valuable insight from being shared with all parties.
One of the major issues that is preventing a seamless response to long COVID is that collection and analytics systems can differ from state to state, agency to agency, and institute to institute. Every organization has its own methods and systems, which makes a comprehensive collection and analysis of information challenging.
Some systems begin with pre-digital media like paperwork, which takes a long time to get from a file cabinet to a data entry desk to a database. Others keep different departments and their systems strictly siloed, which prevents cases from being cross-referenced. Every such problem 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 Fix: Standardize
The existing infrastructure around COVID-19 data collection must expand to include data about ongoing symptoms from private providers, hospitals, and other sources. We need a standardized system to share and translate data between systems at all levels, from private providers to global organizations such as the WHO. Industry groups like Health Level 7 International (HL7) have developed systems like Fast Healthcare Interoperability Resources (FHIR) to help improve structural interoperability that are well worth exploring if organizations hope to share data effectively and quickly.
Government, medical, and research organizations must adopt comprehensive, robust medical database systems with interoperability at their core. With these in place, backlogs, silos, and other sources of data confusion can be eliminated. Without all this noise, the signal about Long COVID will become clearer. The better the data systems we use, the more public health organizations can transfer information between data-gathering entities – and that will enable meaningful progress in combating this painful and debilitating reminder of an ongoing pandemic.
Free and fluid data exchange has been vital to the fight against COVID-19, and it will remain vital because of Long COVID. Healthcare organizations at all levels should leverage regulatory incentives that support data exchange and adopt the best possible interoperability system to serve as almost a “Rosetta Stone” to other information sources. If they put systems in place to collect the data they need to battle Long COVID and other lasting harms now, they will not have to scramble to do it later.