Yesterday’s post was not really about Avastin, but about medical journalism and how patients’ voices are handled by the media.
L. Husten, writing on a Forbes blog, cried that the press fawned, inappropriately, over patients’ words at the FDA hearing last week, and that led him to wonder why and if journalists should pay attention to what people with illness have to say, even if their words go against the prevailing medical wisdom.
There’s a fair amount of controversy on this. For sake of better discussion in the future, I think it best to break it up into 3 distinct but inter-related issues:
1. About health care journalism and patients’ voices:
A general problem I perceive (and part of why I started blogging) is how traditional medical journalists use patients’ stories to make a point. What some of my journalism professors tried to teach me, and most editors I’ve dealt with clearly want, is for the reporter to find a person with an illness, as a lead, and then tell about the relevant news, and provide some expert commentary – with at least one person speaking on each “side” of the issue, of course – and then end the story with some bit about the patient and the future.
I argue that this form of medical journalism Read more »
*This blog post was originally published at Medical Lessons*
This is a guest post from Dr. Jessie Gruman.
More Can Also Be Less: We Need A More Complete Public Discussion About Comparative Effectiveness Research
When the public turns its attention to medical effectiveness research, a discussion often follows about how this research might restrict access to new medical innovations. But this focus obscures the vital role that effectiveness research will play in evaluating current medical and surgical care.
I am now slogging through chemotherapy for stomach cancer, probably the result of high doses of radiation for Hodgkin lymphoma in the early 1970s, which was the standard treatment until long-term side effects (heart problems, additional cancers) emerged in the late 80s. So I am especially attuned to the need for research that tracks the short and long-term effectiveness — and dangers — of treatments.
Choosing a surgeon this September to remove my tumor shone a bright light for me on the need for research that evaluates current practices. Two of the three surgeons I consulted wanted to follow “standard treatment procedures” and leave a six-centimeter, cancer-free margin around my tumor. This would mean taking my whole stomach out, because of its anatomy and arterial supply.
The third surgeon began our consultation by stating that her aim would be to preserve as much of my stomach as possible because of the difference in quality of life between having even part of one’s stomach versus none. If at all possible, she wanted to spare me life without a stomach.
But what about the six-centimeter margin? “There isn’t really much evidence to support that standard,” she said. “This issue came up and was discussed at a national guidelines meeting earlier in the week. No one seemed to know where it came from. We have a gastric cancer registry at this hospital going back to the mid 1990s and we haven’t seen support for it there, either. A smaller margin is not associated with an increased risk of recurrence.” Read more »
A year ago Gangadhar Sulkunte shared his story here about how he and his wife became e-patients of necessity, and succeeded, resolving a significant issue through empowered, engaged research. As today’s guest post shows, he’s now actively engaged in thinking about healthcare at the level of national policy, as well – and he calls for all patients to speak up about this new issue. – Dave
I recently came across a Pauline Chen piece in the New York Times, “Listening to Patients Living With Illness.” It refers to a paper by Dr. Wu et al, “Adding The Patient Perspective To Comparative Effectiveness Research.” According to the paper and the NY Times article, Dr. Wu and his co-authors propose:
- Making patient-reported outcomes a more routine part of clinical studies and practice and administrative data collection.
- In some cases requiring the information for reimbursement.
Patient-Centered Outcomes is outcomes from medical care that are important to patients. The medical community/research focuses on the standard metrics related to survival and physiological outcomes (how well is the part of the body being treated?). In the patient-centered outcomes research, they will also focus on outcomes important to patients such as quality of life. In other words, the care experience will be viewed through the eyes of the patients and their support groups to ensure that their concerns are also addressed. Read more »
*This blog post was originally published at e-Patients.net*
From its inception, Medicare has been agnostic about the effectiveness of different treatments when it sets payment rates. Once a treatment is found to be “reasonable and necessary,” Medicare establishes a payment rate that takes into account complexity and other “inputs” that go into delivering the service. But it is prohibited by law from varying payments based on how well an intervention works.
This would change under a “dynamic pricing” approach proposed by two experts in this month’s issue of Health Affairs. The article itself is available only to Health Affairs subscribers, but the Wall Street Journal health blog has a good summary.
The researchers propose that Medicare pay more for therapies with “superior” results and the same for two therapies with comparable effectiveness. A new service without any evidence on its relative effectiveness would be reimbursed in the usual way for the first three years, during which research would be conducted on its comparative effectiveness. If such research found that the service was less effective than other interventions, Medicare would have the authority to reduce payments. If it was found to be more effective, Medicare could pay more than for other available interventions. The WSJ blog gives an example of how this would work. Read more »
*This blog post was originally published at The ACP Advocate Blog by Bob Doherty*
DrRich has said many times that clinical science is among the least exact of the sciences, and therefore, the results of clinical research are particularly susceptible to “spinning” by various interested parties, in order to yield the kind of results they would prefer to see.
Until recent times in American medicine, the parties who have been most interested in spinning clinical research have been the people who run drug companies and medical device companies (who need clinical research which supports the use of their products), and the medical specialists (who are more likely to be paid for performing medical procedures that are supported by clinical research). In writing about such data-spinning abuses, DrRich has particularly targeted his own Cardiology Guild, but only because he knows and loves cardiologists the best. He suspects that other specialists are doing exactly the same thing.
While DrRich has used reasonably gentle humor (laced, to be sure, with sarcasm and irony) to criticize doctors and their industry collaborators for twisting clinical data to their own ends, others have expressed the same concerns in much more indignant terms, and have threatened to employ professional sanctions, civil and criminal penalties, and everlasting perdition, to curtail such behaviors. Read more »
*This blog post was originally published at The Covert Rationing Blog*