December 21st, 2010 by DavedeBronkart in Better Health Network, Opinion
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If you don’t truly understand how draining it can be to live with chronic illness, including chronic pain, go read The Spoon Theory right now. In five minutes it forever changed my own awareness of my wife’s arthritis and bone pain.
On Twitter I saw “spoonies” raving about this months ago, but I finally took time to read it: 2,100 words and worth every second. Also, on Twitter follow @bydls – “But you don’t look sick!” – and explore their smart website, where they’re wisely selling posters of the story for doctors’ waiting rooms, and everything else imaginable in modern outreach through social media.
These are smart people, and this is a powerful piece of writing.
*This blog post was originally published at e-Patients.net*
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*
November 16th, 2010 by DavedeBronkart in Better Health Network, Health Policy, News, Opinion
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Last Friday the board of the American Medical Informatics Association (AMIA) published a position paper in its journal saying that the “hold harmless” clause is unethical. One of the paper’s authors is Dr. Danny Sands, currently President of the Society for Participatory Medicine. I hope to write more about it this week, after attending the AMIA conference in DC, but here’s the basic issue:
— For ages, makers of electronic medical record systems (EMR) have insisted on a “hold harmless” clause in the contracts a system buyer must sign. It says, in essence, that if any harm comes to anyone because of a system problem, the buyer (the hospital) will hold the manufacturer harmless.
— In other words, if anything goes wrong with the system and someone gets hurt, it’s not the manufacturer’s fault. The reasoning has been: “Hey, you doctors are smart. If our system displays a wrong value, you’re supposed to notice it.”
I’m told this policy has been one big impediment to adoption of EMR systems, because it removes all motivation for vendors to fix things that make their product hard to use: If there’s a bug or the system slows someone down, and a patient gets hurt, the hospital gets sued, not the vendor.
If you were a hospital, wouldn’t that make you eager to buy? What would that do to your trust of the vendor? Patients, how do you feel about that? Providers? Read more »
*This blog post was originally published at e-Patients.net*
October 25th, 2010 by DavedeBronkart in Better Health Network, Health Policy, Health Tips, News, Opinion, Quackery Exposed, Research
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There’s an extraordinary new article in The Atlantic entitled “Lies, Damned Lies, and Medical Science.” It echos an excellent article in our Journal of Participatory Medicine (JoPM) a year ago by Richard W. Smith, 25-year editor of the British Medical Journal, entitled “In Search Of an Optimal Peer Review System.”
JoPM, Oct 21, 2009: “….most of what appears in peer-reviewed journals is scientifically weak.”
The Atlantic, Oct. 16, 2010: “Much of what medical researchers conclude in their studies is misleading, exaggerated, or flat-out wrong.”
JoPM 2009: “Yet peer review remains sacred, worshiped by scientists and central to the processes of science — awarding grants, publishing, and dishing out prizes.”
The Atlantic 2010: “So why are doctors — to a striking extent — still drawing upon misinformation in their everyday practice?”
Dr. Marcia Angell said something just as damning in December 2008 in the New York Review of Books: “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.” (Our post on Angell is here.)
What’s an e-patient to do? How are patients supposed to research if, as all three authorities say, much of what they read is scientifically weak? Read more »
*This blog post was originally published at e-Patients.net*
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*
