Articles

Posts Tagged Common Rule

The fine line between quality improvement and medical research

Quality

As I’ve mentioned before, the single biggest difference between science-based medicine (SBM) and what I like to call pseudoscience-based medicine, namely the vast majority of what passes for “complementary and alternative medicine” (CAM) or “integrative medicine” is that SBM makes an active effort to improve. It seeks to improve efficacy of care by doing basic and clinical research. Then it seeks to improve the quality of care by applying the results of that research to patient care. Yes, the process is complicated and messy, and it frequently doesn’t progress as fast as we would like it to. Sometimes it goes down blind alleys or takes wrong turns, such as when a treatment is adopted too rapidly and determined later to be ineffective. Overall, however, improvement does occur, and it continues to occur. New treatments that work better are discovered. Old treatments that don’t work as well (or that don’t work at all) are abandoned.

There is, however a blurry line between what constitutes medical research and what constitutes quality improvement (QI). A couple of years ago, in one of those unexpected turns that a career can take, an opportunity presented itself for me to become co-director of a statewide quality improvement consortium for breast cancer care in my state. As I’ve alluded to before, it was a case of unexpectedly being in the right place at the right time, of seeing an opportunity and being willing to take it. How I ended up making quality improvement a large part of my career is unimportant. What is important is that it puts me in a unique position among all the other SBM contributors to discuss the interface between science and quality. (It’s also important that I lay down a disclaimer here that this post represents my opinion and my opinion alone; it does not represent the views of the QI with which I’m affiliated, my cancer center, or my university.) In particular, there are ethical considerations that are not obvious, apparently even to someone as brilliant as Steven Pinker, who Tweeted yesterday:
(more…)

Posted in: Clinical Trials, Medical Ethics, Quality Improvement

Leave a Comment (0) →

Did Facebook and PNAS violate human research protections in an unethical experiment?

Facebookfail

Ed. Note: NOTE ADDENDUM

I daresay that I’m like a lot of you in that I spend a fair bit of time on Facebook. This blog has a Facebook page (which, by the way, you should head on over and Like immediately). I have a Facebook page, several of our bloggers, such as Harriet Hall, Steve Novella, Mark Crislip, Scott Gavura, Paul Ingraham, Jann Bellamy, Kimball Atwood, John Snyder, and Clay Jones, have Facebook pages. It’s a ubiquitous part of life, and arguably part of the reason for our large increase in traffic over the last year. There are many great things about Facebook, although there are a fair number of issues as well, mostly having to do with privacy and a tendency to use automated scripts that can be easily abused by cranks like antivaccine activists to silence skeptics refuting their pseudoscience. Also, of course, every Facebook user has to realize that Facebook makes most of its money through targeted advertising directed at its users; so the more its users reveal the better it is for Facebook, which can more precisely target advertising.

Whatever good and bad things about Facebook there are, however, there’s one thing that I never expected the company to be engaging in, and that’s unethical human subjects research, but if stories and blog posts appearing over the weekend are to be believed, that’s exactly what it did, and, worse, it’s not very good research. The study, entitled “Experimental evidence of massive-scale emotional contagion through social networks“, was published in the Proceedings of the National Academy of Sciences of the United States of America (PNAS), and its corresponding (and first) author is Adam D. I. Kramer, who is listed as being part of the Core Data Science Team at Facebook. Co-authors include Jamie E. Guillory at the Center for Tobacco Control Research and Education, University of California, San Francisco and Jeffrey T. Hancock from the Departments of Communication and Information Science, Cornell University, Ithaca, NY. (more…)

Posted in: Clinical Trials, Computers & Internet, Neuroscience/Mental Health, Quality Improvement, Science and the Media

Leave a Comment (128) →