What Is a Medical Data Librarian?

Did you know some librarians specialize in scientific data? I’m a medical research data librarian, and every week I work with graduate students and researchers to help them get the data they need for their work.

For some people, the idea of a librarian who works with data may seem strange. After all, most people automatically think of casual reading when they think about libraries and librarians! But even in a small-town library, there’s likely to be data for genealogy research, and many public libraries help business owners find data through a small business center.

Many people have access to data through the internet. But having access to information is not the same as knowing where to find the best data or how to extract just what’s needed. Librarians have spent centuries thinking about how to organize, document, and preserve books. These days, they’re doing the same with online sources, including research data. 

Research librarians generally have the knowledge and skills to track down information that’s not easy to find. Some fields have specialized tools or rules, and thus, there are librarians who specialize in just that field. Genealogy librarians know how to track down historical records. Business librarians know how to find information on potential customers and competitors. Medical data librarians know how to find the data needed for medical research without paying for commercial data resources. 

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Research librarians also help researchers preserve and share their own research data so that it can be found and used by other people. This is a particularly important function for medical data librarians, due to complex privacy concerns. 

Medical research data is needed anywhere people are trying to learn about or advance the field of medicine. That’s a lot of different places, and anywhere medical research data is needed, medical research librarians can appear. I work at a university with a medical school, but we are also commonly found at research and teaching hospitals, research institutes, and think tanks.

At my job, I work with lots of graduate students in biostatistics and health research classes. I help them learn how to read documentation that explains the data shared by researchers or government agencies. I don’t teach them to do the statistical analysis, but I do teach how data gets preserved and documented for their use, showing them how to interpret and organize the messy reality of working with real-world research data. And I ensure they know that all those steps must happen before the data can be analyzed and used to discover things. Otherwise, it wouldn’t be real scientific research; it would just be coming up with a conclusion and massaging data to fit it. I make sure they learn about the skills, ethics, and technology that go into data work now, as graduate students. That way, they’ll be ready when they run into all of it while working in the real world, analyzing data as doctors or scientists.

The data used by scientists and physicians all comes from somewhere. A lot of that data is produced by the US government’s statistical agencies and provided for all users, from scientists to public health monitors to individual doctors. However, not all data comes from the government statistical agencies. Some comes from scientific teams at research hospitals, institutes, and universities. Part of the money from taxpayer-funded research grants goes into sharing as much data as possible, within ethical and privacy limits. This US data management and sharing policy boosts reproducibility, reduces duplication, and fosters future scientific growth. When cutting-edge research data is shared, it benefits almost everybody. Doctors and the public may use it to learn about current advances in greater detail. Other scientists and scientific technology, like AI, can use it as the base for further cutting-edge research.

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However, as mentioned earlier, real-world data is messy and hard to organize. It needs to be organized and documented so that future scientists and innovators can use it. Scientists who produce research data are experts in their fields. They know a lot about cancer, diseases, or whatever they’re researching. However, that doesn’t mean they’re great at making their data reusable by others. To get that data out there safely and effectively, they need someone else. What they need is someone who knows how to organize data. They need someone who knows how to write documentation. Most importantly, they need someone who knows how to share the data without violating the privacy of the research participants. In other words, they need a data librarian.

When I meet with them and their teams, I help them apply the policies and advice from data science to their own data. When researchers use shared data and then share their own data, it creates something that data librarians like to call the research data lifecycle.

Medical research runs on data. The data is what lets doctors provide the most current medical treatments and what supports future health with scientific research. Medical research librarians help ensure that research data is more usable, accurate, and available for longer. They improve scientific education by assisting interested students in finding and using that data. They help future researchers by guiding them through the entire data lifecycle before they’re out in the real world. They support the scientists who make amazing discoveries by helping with the organization and long-term storage of data. 

Unless something changes, the amount of available data will keep multiplying. It’s going to get more technological and more complicated, and it’s going to keep getting harder for people to get what they need on their own. 

I feel better knowing that medical research data librarians will be there to help.

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