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*
Interesting case study raised by the Retraction Watch blog.
A 2009 journal article in the Proceedings of the National Academy of Sciences (PNAS) – promoted in a news release by the journal and picked up by many news organizations — has now been retracted by the authors. But the journal issued no news release about the retraction — an issue of transparency that the RW blog raises. And you can guess how much news coverage the retraction will get.
And this was all over a molecule that could supposedly “make breast tumors respond to a drug to which they’re not normally susceptible” — as the RW blog put it. But it was also a molecule, RW points out, that wasn’t even in clinical trials yet.
He or she who lives by the journal news release risks one’s long-term credibility.
*This blog post was originally published at Gary Schwitzer's HealthNewsReview Blog*
We are invading their home turf. Increasingly, in among the thousands of doctors, scientists, and medical industry marketers at the largest medical conventions you are finding real patients who have the conditions discussed in the scientific sessions and exhibit halls. Patients like me want to be where the news breaks. We want to ask questions and — thanks to the Internet — we have a direct line to thousands of other patients waiting to know what new developments mean for them.
I vividly remember attending an FDA drug hearing a few years ago and how there were stock analysts sitting in the audience, BlackBerries poised for the “thumbs up” or “thumbs down” on whether a proposed new drug would be recommended for approval. (At that session it was thumbs down.) When the analysts got their thumbs moving, a biotech stock tanked in minutes and before long the company was announcing layoffs. Those analysts were powerful reporters.
Now patients are reporters, too, and their thumbs are just as powerful. So are their video cameras and microphones. These folks are a different breed than the folks from CNN or the scientist/journalists from MedPageToday. Their questions are all-encompassing: “What do the discussions about my disease or condition here mean for me? What should change in my treatment plan? What gives me hope? What’s important for my family to know?” Read more »
*This blog post was originally published at Andrew's Blog*
Empowered patient. Consumer driven healthcare. Transparency. Access to their full medical records online. Review the latest news and you’ll discover more books and articles recommending patients be advocates for themselves. The pitch? The only way to get the best care is to be thorough, informed, and always asking questions.
This perspective is understandable because advocates have observed a healthcare system that provides inconsistent quality, too many preventable medical errors, and overtreatment resulting in unnecessary injuries and deaths. Even I’ve written a book saying the same thing, and I hate to write.
The public is urged to take charge of their health and their healthcare. When they have a problem, ask the doctor questions. Do research. If they need a procedure, shop around to get the best deal. Adopt good habits. Eat more fruits and vegetables. Stop smoking. Maintain a healthy weight. Exercise regularly. These will improve health and be less costly in the long run.
But is this what Americans really want? Do they want to be empowered patients? Can they be empowered patients? Frankly, no. Read more »
*This blog post was originally published at Saving Money and Surviving the Healthcare Crisis*
They have a tough job, those government doctors, scientists, and bureaucrats who are charged with assessing the safety and effectiveness of proposed new medical products. As you know, they rely largely on studies presented by the applicants.
The Food and Drug Administration (FDA) has the power to not approve a new drug or product or even pull it off the market. Right now it is considering limiting or pulling GlaxoSmithKline’s (GSK) diabetes drug, Avandia, because of newly discovered data that it may have caused heart attack in some patients –- data mysteriously not shown in GSK’s own studies. If the drug is pulled it will cost GSK billions of dollars in lost revenue but, from the FDA’s point-of-view, it will be protecting the public. And, after all, there are safer diabetes drugs on the market as alternatives. Read more »
*This blog post was originally published at Andrew's Blog*