Doctors Need Better Ways to Share Covid-19 Data
(Bloomberg Opinion) -- Until early April, the world thought of Covid-19 as a respiratory virus that would be understood once we knew how contagious it was and how deadly. Now, doctors are starting to recognize that this novel coronavirus is a disease unlike anything they’ve treated before.
The virus can disable the kidneys, inflame the GI tract, damage the heart and creep into the central nervous system. It can lead to blood clots. And it has surprised doctors around the world by causing blood oxygen to plunge to dangerous levels in patients who are still chatting on the phone rather than gasping for breath.
The prestigious journal “Science” calls it a “rampage through the body from the brain to the toes.”
Dealing with this disease cries out for new scientific methods — ones that quickly glean information from patient data. Clinical trials are still the gold standard, but they take time. In a pandemic, doctors need to do the best they can with the information available. Likewise, medical privacy still matters, but many patients could accelerate scientific progress by choosing to allow temporary sharing of their data beyond what current regulations allow.
There are some encouraging signs that this process is underway. Hospitals are becoming “living laboratories” says Isaac Kohan, a professor and chair of biomedical informatics at Harvard Medical School. Doctors continue to update their understanding of ventilator use, which saves lives in some cases but may damage the lungs in others. Some patients but not others may benefit from antiviral medications, which have shown promise in some preliminary trials.
And still others may be benefitting from powerful anti-inflammatory drugs, such as Actemra, an arthritis drug which doctors in New Jersey used to treat a 47-year-old marathon-running urologist who had been near death, according to a case history in STATnews. His severe illness appears tied to an extreme over-reaction of his immune system, called a cytokine storm.
It’s not clear that his case is typical — as the man’s age and physical fitness are not typical of the severely ill. Some doctors worry that in other patients, suppressing the immune system will give the virus an advantage. But typical or not, the case provided useful data that might help others, taking some of the guesswork out of future cases.
The problem with all of these datapoints is coordinating them. People might think there’s some big control center where scientists collect data to advance their understanding of Covid-19, says Kohane. There isn’t, yet.
In fact, only 5.8% of cases reported to CDC have included clinical details. We need to do much better than that.
The electronic health record system could help. In an expanding data-collection project, Kohane and his colleagues have coordinated electronic records from more than 27,000 patients in 96 hospitals across five countries. So far, they’ve seen several patterns – changes in a measure called D-dimer, which predicts blood clots, for example, and in creatinine, which signals problems with kidney function.
These positive developments show an upside to electronic health records, which are notorious among doctors for taking up time they should be spending with patients, and functioning mostly to justify billing, says Kohane. It also shows how sharing data across proprietary health records systems — anathema to their business models — can improve public health outcomes.
“The hope is this will usher in a different era,” says Yale University medical professor Harlan Krumholz, in which doctors make use of pooled data to leverage each other’s insights. “In a moment like this every second counts. We want to get smarter for every patient that comes in.”
Sifting through carefully collected data is very different from trusting anecdotes. The right sifting of data would have revealed the deadly side-effects of the painkiller Vioxx, Kohane says, long before thousands of people died. Likewise, better data science might have picked up a signal of Covid-19 spread in the United States in February, by noting a spike in influenza cases or an unusual number of flu patients needing respirators. Instead, it was only this week that scientists realized that some deaths had already occurred in California by February 6, long before the first recognized outbreak in Washington State.
The data Kohane’s group is using has been aggregated to protect patient privacy. And privacy protections do limit how much information doctors can share. It’s hard to know how any patient’s individual story ends, for example — whether lab measurements stopped because a patient recovered, or because that patient died. Despite the regulations that inhibit sharing patient information, many patients have been keen to share their data and their stories. Their collective will to help is another powerful weapon in this new mode of science.
The “true” death rate of Covid-19 — whatever it may be — is not a law of nature, but in part a function of how doctors treat the disease. The more they learn, the lower that fatality rate will fall. And to learn faster, they need better ways to collect patient data and share it with each other.
This column does not necessarily reflect the opinion of the editorial board or Bloomberg LP and its owners.
Faye Flam is a Bloomberg Opinion columnist. She has written for the Economist, the New York Times, the Washington Post, Psychology Today, Science and other publications. She has a degree in geophysics from the California Institute of Technology.
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