Mary L. Radnofsky, PhD, retired Professor and Board member of Dementia Alliance International (DAI) gave a brilliant keynote presentation in Budapest at the ADI2016 conference. You can read the abstract, download her slides and view her presentation in this weeks blog. Thank you Mary for representing us so well, and for your permission to share it.
The Well-Educated Lab Rat: Clinical Research from Inside the Maze
“As a former research professor and ethnographer, I know about quantitative and qualitative data-gathering instruments; I’ve done fieldwork in educational cultures with children, and watched these “rats” in their classroom “mazes.” But my reason for becoming the lab rat myself, in medical research, was unrelated to my profession: I just needed to see a doctor because I was sick. With a white matter disease, no job, and no health insurance, I found a way to access the best physicians, medical tests, and cutting-edge technology in the country: volunteer for a clinical trial at the National Institutes of Health.
Two years later, I’m still a part-time lab rat. Sometimes it’s actually good healthcare, as I get the most concerned specialists focused on me. I also learn much from these top experts about my condition. But being a lab rat takes emotional and physical tolls; for example, I didn’t have the “target” disease in my first clinical trial, so I “lost” that year, in that I couldn’t get treated. I do have a rare disease, though, so I got many tests – some fascinating, some painful – both on my mind and body. And I caught a hospital-borne virus that nearly killed me. That was a heavy toll, but I recovered, so I volunteered for another study. I still believe in the power of science.
I was enrolled for genome mapping, and had exciting results – though inconclusive, so I’m still waiting to “fit in” to another study for follow-up, and another year has passed. I’ll go back into the cage with the other lab rats, busy on a roller coaster of tests, expectations, procedures, paperwork, schedules, bureaucratic mazes, interviews, delays, confusion – oh, and by the way, we’re sick!
But we’re still important, funny, loved, needed, wanted, and occasionally, very well-educated lab rats. And we’ve got something to say about the ways you study us.”
By Mary L. Radnofsky, PhD
You can download her slides here: The Well-Educated Lab Rat_Mary Radnofsky PhD_ADIBudapest2016 and watch her speech below.