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of Sciences (PNAS) — promoted in a news release by the journal and picked up by many news organizations — has now been retracted by the authors.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*