by John Borghi
Manager, Research and Instruction
Lane Medical Library & Knowledge Management Center
Stanford School of Medicine
A little over a year ago, I boarded a plane to Washington DC to attend the 2019 meeting of the American Medical Informatics Association (AMIA). At this point in my career, I had been working in academic libraries for over six years. For much of that time, I had worked in biomedical settings and focused my activities on research data. I teach classes on data management and data sharing, but I had come to AMIA because I wanted to learn more about clinical data, informatics, and health information technology.
Over the next few days, I attended sessions on ethics in biomedical informatics, the emergence of artificial intelligence in healthcare, and so many other interesting topics that I was constantly exhausted and in search of coffee. Because the conference was in D.C., I also learned a lot about data-related initiatives at federal agencies, especially the National Institutes of Health and National Library of Medicine.
So why am I writing about this now? As I sit down to write this, the 2020 AMIA meeting is occurring. But rather than being held in a conference center it is, like so many other meetings in the last year, entirely virtual. Shortly after I returned from the 2019 meeting, the first cases of the disease we now know as COVID-19 began to emerge. I can’t even begin to summarize or even characterize the year that followed. But topics related to how researchers and clinicians collect, analyze, and apply data to healthcare decisions now consume so many of our personal, professional, and political conversations and activities. Everything I learned at last year’s meeting resonates very differently in the time of COVID.
The session I was most eager to attend last year was about the data-related initiatives at the NIH. At the time, I had just contributed to my institution’s response to a request for comments on a draft data management and sharing policy and I was eager to hear more about what was happening and what was planned in the future. A year later, and the final policy has been announced and I’m glad to see that the suggestions made by my peers and I- both in the meeting and in our written comments- have been integrated into the new policy. But also, the necessity of biomedical and health science researchers making the products of their work available (and in a usable form) to one another could not be clearer than during a global pandemic.
Another standout session I attended at the AMIA meeting concerned the All of Us Research Program, an effort to gather genetic and health data from one million or more people living in the United States in order to accelerate medical breakthroughs. At the time, I was amazed at the sheer scale of the project and interested in how the data would be curated and made available to the research community. Now, when I check the project’s website, I see there are a series of efforts to leverage the dataset to study COVID antibodies, survey the pandemic’s effect on community health, and use the electronic health record to study patterns and learn about COVID-related symptoms. Rather than a redirection of the project, this represents its immediate application.
When I proposed attending the 2019 AMIA meeting, I told my colleagues I wanted to explore another dimension of our profession- to understand more about how clinical data was actually being applied and used. Looking back now, at all of the notes I took during the meeting, I am struck by two things. The first is that the meeting feels like it occurred a lifetime ago. Everything surrounding my attendance at the meeting, from walking through a crowded airport to catch my flight to D.C. to presenting on what I saw to a room full of my colleagues upon my return, feels so remote now. But I am also struck by the immediacy of everything I learned at the meeting. Understanding and working to improve how clinical data is collected, analyzed, and applied are always absolutely vital pursuits. But the last year has shined a light on just how vital.