The editor of the new digital health magazine wants to democratize data

The editor of the new digital health magazine wants to democratize data

One of the issues that we’ve been lamenting is the fact that the medical knowledge system revolves around rich countries. The way medicine is practiced is based on guidelines that are handed over by professional societies in the United States and western Europe, based on research performed in a handful of countries, and typically involving the white Caucasian male. With digitization, we’re hoping each country will have an opportunity to create their own medical knowledge system. advertisement This is something we’re hoping to address with the new journal. There needs to be an increase in diversity of the authors, not just in gender, but also representation from different countries. What we’re hoping is to put those into policies, so not just “You would like this to happen,” but “It’s not going to be published here unless there is diversity among your authors.” It’s not unusual to see papers where all the authors are from Harvard talking about some project in Uganda, and that is not acceptable. We’re hoping to be a role model; someone has to take the first step.

STAT spoke with Celi about his plans for the journal, as well as the broader challenges facing machine learning in medicine. The following interview has been lightly edited and condensed. advertisement

What are some of PLOS’s goals for launching its own digital health publication? The nonprofit publisher Public Library of Science, one of the first to provide open access to its journals, recently announced the expansion of its roster, which also now includes journals dedicated to global public health and sustainability. Submissions for the new digital health journal will open this month, and the inaugural issue is expected to come out by the summer.

We have this event, a datathon; the very first was in January 2014. The idea was to promote the MIMIC dataset… By increasing interest, what you’re also doing is you’re able to crowdsource the data curation part. Are you seeing progress in other providers opening up their data? Data is like crude oil; it’s useless unless it gets processed and curated. The curation part is tedious and underappreciated; no one wants to do it because it’s boring, unless they’re doing it to answer a research question that they’re interested in.

Oh, it’s the politics and the economics. Those remain to be the biggest barriers to advancing in this field. The politics is, for the most part, influenced by publish or perish culture in academia; the think they’re the owners of these datasets and no one else should be able to use them. And the economics is that health care organizations think that there is revenue that can be generated from this data. Now, they could sell the data. But who’s going to curate? Unless you sell your clinicians who understand how the data was collected, it’s pointless to sell them. That’s an issue created by authorship, but there’s also a demographic divide in the data available for research. What are the impediments to the proliferation of open access clinical databases that reflect diverse patients?

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