Understanding medical research, at some level, is a fundamental e-patient skill. As we start digging for reliable new information, we have to learn to separate quality from questionable. (If you think medical journals are academically pure, you’ve got learning to do.) A new blogger has emerged who’ll be a big help: David Rind, MD.
In his extraordinary essay in the new Journal of Participatory Medicine, Richard Smith expressed how perilous reading about medical research has become. Speaking of the peer review process that supposedly protects the accuracy of published results, he says:
After 30 years of practicing peer review and 15 years of studying it experimentally, I’m unconvinced of its value.
And what sort of anti-establishment radical is he? The 25 year editor of the British Medical Journal, one of the top journals in the world. The ones we’re supposed to trust.
That echos Marcia Angell:
It is simply no longer possible to believe much of the clinical research that is published, or to rely on the judgment of trusted physicians or authoritative medical guidelines. I take no pleasure in this conclusion, which I reached slowly and reluctantly over my two decades as an editor of The New England Journal of Medicine.
It’s apparent that e-patients, clinicians, and policy makers all need to fortify their knowledge of how research is supposed to work and how it actually does.
So although I don’t know David Rind MD, of Beth Israel Deaconess (my hospital), I was happy to learn of his new blog, courtesy of Paul Levy:
These are thoughtful essays, and I welcome this new voice. His posts so far:
11/14: First post and origins
Although an early participant in the world of Usenet newsgroups, I’m a latecomer to the world of blogging. I don’t read or participate in blogs often, and as a newbie will undoubtedly make mistakes of etiquette and function…
11/16: Opinion, Evidence, and Consensus Statements
In the future, I’ll write more about this subject, since the distinction between expert opinion and clinical experience seems to cause unending confusion to people who write and talk about EBM….
11/17: ARBITER 6 and Combining Therapies with Statins
The results from ARBITER 6 were released this week. The interpretation is less clear…
11/19: USPSTF, Mammography, and Grading Recommendations
It’s hard to have a blog about evidence and medicine without commenting on the changes to the USPSTF’s breast cancer screening guidelines….
The post that drove me to write this, though, is his thoughtful and balanced discussion of something I spoke about last month (slides here) at e-Patient Connections 2009, a healthcare marketing conference:
11/21: Pharma, Evidence, and Trust
In this post, Rind describes his own history with pharma, starting with the excellent results produced with AIDS, and then discovering the manipulations of “evidence” that have caused so many negative headlines for the industry. Excerpt:
By a few years later, though, I was finding myself as distrustful and angry at Pharma as anyone out there. I spend a lot of my time reading research papers and interpreting evidence, and realized one day that Pharma was employing people at least as smart and knowledgeable as I to come up with ways to trick us all about what studies showed. One example of this is running parallel studies of an agent and then only publishing the positive studies while burying the negative studies, as was done with trials of SSRIs in adolescents. The concept of a p value becomes essentially meaningless if researchers perform an unknown N of parallel trials and then publish the ones that show a positive result.
My message at the October conference was that in a world of social media, reputation is everything, and people better knock off any trust-destroying behaviors. My talk was titled “Authentic Value: Being Known in e-Patient Communities.” This is consistent with the definition of participatory medicine, which is all about partnership and collaboration.
Rind’s message, his teaching, is accessible to lay readers (engaged patients) who are comfortable with some basics of what evidence is about. (I’m no deep statistician but I know exactly what he meant.)
Yes, we e-patients do talk. Learning to research is a fundamental e-patient skill, and we teach (and blog) about how to filter crap and distortions, because to us it’s not just business, it’s often life and death. Glad to have this new, empowering blogger. (He’s also on Twitter as @DMRind.)
btw, a vital resource for understanding health reporting in the consumer media is Health News Review. We’ve written many pieces here about understanding statistics (browse that category). As a self-educating patient I wrote about evidence-based medicine (EBM) on my own blog.