December 5th, 2010 by DavedeBronkart in Better Health Network, Health Policy, Health Tips, News, Opinion, Research
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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*
October 13th, 2010 by AlanDappenMD in Better Health Network, Health Policy, Opinion, Primary Care Wednesdays
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No matter where one stands on appropriateness and advantages of each patient being involved in self-diagnosis and treatment of their own medical problems there are two inevitable conclusions:
• First of all, self diagnosis and treatment are as natural as breathing and as impossible to extinguish as thought itself.
• Secondly, given today’s healthcare system, there always will exist a dynamic tension between self-determination of the individual patient and the powerful healthcare system which often insists on patients falling back in line and complying with orders.
Few would argue against the need for a powerful alliance that embraces the benefits brought to the table by both the practitioner and the patient. Simplistically, the physician would carry the role of healthcare consultant and guidance while the patient ultimately becomes responsible for the choices. Read more »
October 13th, 2010 by SteveSimmonsMD in Better Health Network, Opinion, Primary Care Wednesdays, True Stories
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The famous late 19th and early 20th century physician, Sir William Osler, said that “a physician who treats himself has a fool for a patient.” How would he have felt about patients diagnosing and treating themselves? Would he have written in support of the Journal of Participatory Medicine or against it? I also wonder how he would have practiced medicine in the “information age” when many of our patients present with a diagnosis already made, right or wrong.
I recognize that bringing Dr. Osler into a discussion set in the information age is, perhaps, anachronistic. Yet I believe he still has something to teach the 21st century on the topic of patient participation. When he advised that “the first duty of the physician is to educate the masses not to take medicine,” he offered one of the earliest lessons on a physician’s role as educator.
He also said: “The great physician would treat the patient with the disease while the good physician would treat the disease.” For me, this marches lock-step with the reality of today’s patient as consumer and active participant in the doctor-patient relationship. Simply put, it is impossible to separate the patient from a pre-conceived and often well-researched opinion — correct or not. So to treat the “patient with the disease” requires me to think of my patient as an intellectual partner. Read more »
October 11th, 2010 by DavedeBronkart in Better Health Network, Health Policy, Opinion
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Last month in Cambridge I met Twitter friend Bryan Vartabedian, M.D. (Twitter @Doctor_V) at a meeting at Vertex Pharmaceuticals. We’ll cross paths this fall on the conference speaking circuit. [Recently] on his blog he raised a rowdy, rough, but valid point: As e-patients (obviously including me) get into the business, should they/we be regulated? He said:
Will industry be required to publicly list monies used for sponsorship, travel and swag support of high profile patients in the social sphere?
Should high visibility patients who serve as stewards and advocates disavow themselves of contact with pharma just as many academic medical centers have begun?
As is often the case, I don’t have an answer. I’m just raising the questions. Smart questions. My short answer:
- Fine with me if industry discloses those payments. Nothing to hide.
- On the other hand, I think it’s nuts and counterproductive for consumers in any industry to disconnect.
Academic medical centers have tons of evidence of influence corrupting the academic processes that are at the core of (supposed) science. For patient advocates I don’t see that there’s currently a problem that would justify adding regulators, the ensuing budget impact, etc.
Besides, there’s a key difference: Academics are supposed to vet industry. It’s their job in this context. Patients, on the other hand, are the consumers — the ones the industry’s supposed to serve. Read more »
*This blog post was originally published at e-Patient Dave*
September 28th, 2010 by DavedeBronkart in Better Health Network, Health Tips, News, Opinion
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You can’t be well-empowered if you hear advice wrong. That’s why in a participatory relationship, an essential skill is accurate handoff of information.
The Foundation for Informed Medical Decision Making (FIMDM), catchily pronounced “fimdim,” has been working for years to improve patients’ knowledge of options and alternatives. In [the September 20th] Boston Globe Liz Cooney talks with people from FIMDM about the issue. An excerpt:
What doctors explain and what patients understand might be two very different things, recent research suggests.
Ideally, patients talk with their doctors about the pros and cons of a particular treatment, weighing the risks and benefits, exploring alternatives — including doing nothing — and then come to a conclusion. That’s the goal of the informed consent process, best known by the paperwork patients sign at the end saying they heard doctors describe what they may be getting into.
If only it were that simple.
[This] article springboards off Cooney’s piece two weeks ago on heart stents, reported here by Dr. John Grohol as Doctors Say One Thing, Patients Hear Another.
A Boston non-profit, FIMDM is the force behind Gary Schwitzer’s excellent Health News Review service, which analyzes health news in the media, teaching e-patients and policy people to sift the gold from the garbage.
*This blog post was originally published at e-Patients.net*
