No, they won’t share their data.

Jon Baron read the recent article, “Presenting Characteristics, Comorbidities, and Outcomes Among 5700 Patients Hospitalized With COVID-19 in the New York City Area,” and sent the following message to one of the authors:

I read with interest your article in JAMA. I have been trying to follow this issue closely, if only because my wife and I are both over 70, bu also because I’m interested in data and statistics.

What I was hoping for when I saw your article was a breakdown of hospital admissions (and perhaps other outcomes) by “secondary conditions” (not sure of the term – but things like diabetes and hypertension), age, and possibly sex. I know that “older people are more vulnerable”, but I, and possibly others, have been wondering whether this is because older people are more likely to have these pre-disposing conditions. Maybe I’m missing something, but it seems relevant to look at hospitalization as a function of both age and other conditions. If it turns out (as it has in two very small studies I’ve seen) that the age effect largely disappears when these other conditions are excluded, that seems interesting. I know we can’t draw firm conclusions, but neither can we draw them from anything else you report, since we don’t know how people get into the hospital.

If you are willing to send the raw data, I [Baron] can answer this for myself. I’m very good with data. I might want to put the results in my blog (if you are willing), but I’m not interested in boosting my h index. I’m retired, and I don’t even apply for grants anymore. . . .

He received a two-sentence reply stating that they would not share any data at this time beyond what is in the published article.

I was curious what JAMA’s policy was on this, so I checked on the website and I found this:

But this study is not a clinical trial, so there is no requirement to share data.

It’s disappointing that researchers are refusing to make their data available, even in a public health emergency.

I guess it’s possible that there are some data sharing restrictions because this is information from live patients. Clinical trials are different because they have consent forms, so you can ask patients at the time of entry into the study for permission to use their data. In this case the researchers are just using patients who come into the hospital. On the other hand, it’s not clear to me why the authors of the study should be able to work with the data but the rest of can’t. They could prepare a de-identified dataset, right?

Anyway, my issue here is not with the authors of this particular study, it’s with the larger culture of data hoarding and the academic rat race.