What is Data to Action?

DISC - Meredith Adams

Author: Meredith Adams, MD, MS, FASA, FAMIA
July 25, 2023

Surprisingly, data can scare NIH investigators. And it is not just the scientists who have this problem out in the community. While brilliant at methodology and analytics, many investigators find aspects of data communication incredibly tricky. While we spend years studying design and analysis, the final steps of data management and communication are rarely taught and shared in formal training. The traditional methods for scientists to communicate include published articles and presentations at scientific meetings. What the scientific community has begun to realize is that these are not sufficient to reach the public and provide a reliable way to share science. While one can have the most beautiful science in the world, if you are not able to communicate it to your audience, what have you accomplished?

Even highly trained scientists can get stuck on how best to present their data in a way that could quickly change how a medication is prescribed or someone gets resources that they need. Our role, at the DISC, is to help think through how to best design solutions for the audience that needs the information. Science and data can be manipulated, incomplete, or unintentionally confusing. Even for an experienced person who works with data all the time, it can be overwhelming to interpret data that involves calculations or data that we are not used to seeing on a regular basis. It can be tempting to show all the possible information that we have about a problem or health area. But human brains, even the brightest, can be overwhelmed by a cluttered figure or dashboard.

The idea of data-to-action centers reflects the changes in how scientific data are collected, specifically around the speed of real-time information. The historical frameworks for how we share data are not really built for the amount and speed of important information generated in real time. Our focus as part of the NIH HEAL Initiative is finding ways to build these data connections for chronic pain and opioid use disorder data. Data sitting on someone’s computer in a lab do not do a lot of good for people who might need that information to change patient care. The NIH HEAL Data2Action (HD2A) network is trying to solve these problems on a large scale from several different directions.

As part of the HD2A, at the heart of what the Wake Forest Data Infrastructure Support Center (DISC) is trying to do is to make it easier for the scientific data to effectively reach people who need it to make decisions. We can help scientists untangle some of the data challenges around making it as easy for scientists and people in communities of interest to see our results. Many of the connections between public health and other data sources provide opportunities to take better care of patients and people in the community. The opioid epidemic is not a problem to be solved with a single solution. Our work supports scientists finding better ways to communicate with scientists, health care providers, and other people who would benefit from clear information. We will be working to develop resources for our data-to-action community, but also the larger NIH science community and non-scientists.

Our hope for the DISC is to create solutions, but more importantly, develop systems for scientists and others to critically evaluate their work in a way that they might not have previously. Perhaps, they only need to share three pieces of information, not 30. By creating an environment for learning, we hope to raise the community knowledge level around data visualization and other important data-wrangling skills to make our science as impactful as possible. The data-to-action community is focused on creating support and advancing the science to change how we take care of vulnerable patients experiencing the ripples of the opioid epidemic.

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