LYMEPOLICYWONK: Patient Centered Research and Lyme—An idea whose time has come?
A friend forwarded to me the audio link (at the end of this blog) of an interview with Dr. Iain Chalmers of the Cochrane Collaboration—a leading voice in evidence based medicine. Dr. Chalmers, who is interested in the patient perspective in evidence-based medicine, made a number of points that I think you will find of interest. First, he said, research agendas should be driven by patient concerns rather than by researchers’ preferences. There’s an interesting idea. Then he said that physicians have to make a decision today and cannot wait for the research. That sounds right, too. He went on to say that when you are looking at outcomes, the clinical experiences of those who receive the intervention or treatment are the key—these experiences are not the soft data, they are, in fact, the “hard” evidence. Finally, he noted the difficulty of getting “disappointing” results published. Disappointing results can be trials that don’t turn out as planned or that contradict what the researcher expected. His last quote regarding academic researchers in particular stuck with me and should resonate with the Lyme community: “If you have a cherished hypothesis which your career has ridden on for the past 20 years and someone does a really killer experiment which actually shows that you have been wrong all that time, the natural reaction, the human reaction is to say “there must be something wrong with it”—“I can’t have been wrong all these years”. It all sort of takes me back to the Embers monkey study and the complaints of Dr. Baker’s (formerly of the NIH and now the head of the American Lyme Disease Foundation, which many patients believe is a front for the Infectious Diseases Society of America).
You may recall that Embers and colleagues found persistence of the Lyme bacteria in monkeys following the Klempner “long-term” antibiotic treatment protocol (hotly contested by Dr. Baker who oversaw the research trial when he was at the NIH), persistence following the IDSA 28 day antibiotic treatment regimen, and faulty testing. If you’ve missed the fireworks, they’re here.
If you want to listen to Dr. Chalmers’ interview, it is here.