Before I figured out that I wanted to be a writer, I studied biology at Columbia University and worked as a cell biology researcher at the Rockefeller University in New York City.
I was lucky enough to land a job covering the science beat for a big daily newspaper – when most of them still hired science writers – and spent a year at MIT as a Knight Science Journalism Fellow during the 2012-13 academic year. I freelanced for a while and became a regular contributor to Covering Health over at the Association of Health Care Journalists. Now I work for Oregon Health & Science University in Portland, where I write about cancer biology and treatment for the Knight Cancer Institute.
This blog is a sort of research notebook, a place to record data and observations about science and medicine, the journalism business, and sometimes other interests (rock climbing, growing food, building stuff).
Re: “A Field Guide to Pointless Medical Research”
I was directed to your article from RetractionWatch, one of my favorite blogs. Thank you for this wonderful summary of the issues plaguing medical research. I work for a rare disease patient advocacy org and participate in the same network you referenced that is doing research on Smith-Lemli-Optiz syndrome (totally different disease and research consortium, but under the same NIH program Rare Diseases Clinical Research Network (RDCRN) umbrella). There are more than 80 patient group representatives in this network–all rare diseases–and your comments mirror almost exactly the ongoing concerns and frustrations we have.
The RDCRN was established, in part, to provide a mechanism for patients to have more say in research planning and execution. A major focus of the program was to strengthen the working relationship between patient groups and researchers. It has been quite successful at this. However, aligning the goals of researchers and patients is of little value when grant reviewers are still stuck in the past and fear any innovative or ‘out of the box’ approach to research. The NIH leadership has been great, the individual institutes and their reviewers have been horrible.
The upshot of this disconnect is a focus on what our PI calls ‘grantsmanship.’ If you want any funding for your disorder at all, It becomes more important to write the application the reviewers want than to write the one you actually need. Frustrating–and a topic of conversation with nearly every patient advocacy leader in the rare disease area I’ve met (lots of them).
I am sharing your article with my board and with other colleagues. Thanks again for laying this all out so nicely!
Michele Manion, Executive Director