Last Friday, I attended the 2nd annual Community Engagement Research Symposium sponsored by the section of the same name that is part of the University of Massachusetts’ Center for Clinical and Translational Science. The Community Engagement and Research Section is the arm of the CCTS charged with helping researchers from the University work with the local communities and community leaders to address issues related to public health.
We do this by helping university researchers and community leaders form equal partnerships for health research. This approach is called community engaged research. Other names for this type of approach include Community Based Participatory Research (CBPR), Community Collaborative Research, Community Partnered Research, and Participatory Action Research. (CCTS website)
The program featured an excellent keynote address by Elmer Freeman, Executive Director of the Center for Community Health Education Research and Service, a community-based organization that provides research funding and support for issues related to professional development and education for community healthcare providers, community advocacy programs, health disparities and inequities, and health policy. Freeman is a veteran of the trenches, an individual who has spent his career at the forefront of community-based health care and who never shies away from speaking frankly about the realities of healthcare in poorer neighborhoods, the gap between health research and medical practice in community health, the politics of funding bodies and academic institutions, and the frustrations that come with trying to address the many challenges of doing community partnered research. Among the many great, quotable lines he spoke (and I tweeted) was this one, “Health care providers in community health centers want practice-based medicine, NOT evidence-based practice.”
As I listened to Freeman and the other panelists of the day, and as I looked at the many poster presentations from projects around the state, and as I took note of comments from the audience, I couldn’t help but draw a whole bunch of parallels between the situation(s) they were describing and much of our own in the world of academic librarianship. Several times, I overheard people say, “We need to create research methodologies that work for a community, not just publication.” Another UMMS leader said, “Academics need to integrate themselves into the community.” Many spoke of the big difference between theory and practice.
Today I had lunch with a friend and colleague who is working to develop curricula for teaching data management practices. I described for him a task that I’m beginning to tackle in my informationist role, i.e. the creation of a data request form with an integrated (or perhaps attached) data dictionary. He asked, “Where is the data for this project stored?” To answer, I began to describe how some data comes from insurance claims (claims data), collected and maintained by the insurance company. Other data comes from electronic health records (staging data), managed by different health care providers. Another source is the system used by schedulers and counselors, the database where they input all of the information that they collect while making their phone calls (intervention data). Lastly, there is analytic data, kind of a collection of the relevant data that comes in from these other sources, ultimately used by our analyst for statistical analysis.
As I talked on, I could see a crinkle form on my friend’s forehead. “There isn’t one dataset?” he asked. Technically, I guess I can say that there is. The analytic dataset is probably the closest to that, but that dataset is derived from others. It’s dependent upon others. As we talked more about other “data” – things like minutes from meetings, progress reports, email correspondence related to the study – he said, “I imagine data management as creating this one neat file folder. You click it and it opens to have everything related to a study organized, accessible, easy to share.”
What a nice image.
And then I told him about last Friday’s meeting and how I’d been thinking about the huge gulf between theory and practice, not necessarily in healthcare, but in our own profession. Library school was all about theory. I remember sitting in classes when I was earning my LIS degree and the faculty member would say that grad school was about learning the theory of librarianship and information science. We would learn how to BE librarians on the job. I feel a lot like this is what’s happening to me now as an informationist. We’ve been talking about eScience and data management for a few years now, in theory. We keep saying that when it comes to managing data, librarians can do this and this and this. We talk about best practices, yet have a bit of a gap in our knowledge base when it comes to knowing what the current practices are. I feel, in a way, like the academic researcher who’s come up with an interesting hypothesis about what an informationist is and now I’m all about testing it.
So far though, what I’m finding is that our theory of what an informationist is and does, and the reality of my day-to-day work is not quite on the same page. I do believe we’re on a good path to figuring out the answer to our “research question” and ultimately, to knowing what our role can be here in the research process. I also think that the researcher who implored her fellow academics to integrate themselves into the community was speaking to me, too. Embedded librarians and informationists are trying to heed the message. I am integrated into this study and it’s a huge step towards putting our theories into practice, in a truly meaningful way.