quote:

Patient-Driven Research: Rich Opportunities and Real Risks
Gilles J. Frydman

Since the Internet’s earliest days, patients have used online resources to share experiences, learn about diseases and treatments, and become advocates. A newer phenomenon has seen a growing number of online communities evolve into centers of patient-driven research (PDR)—especially for orphan diseases. Thanks to Health 2.0 capabilities, various models of PDR are being developed, usually involving methods of data collection and aggregation that can eclipse RCTs as meaningful evidence. A radical shift from the classical research model, this may result in accelerated findings and dissemination at a fraction of the cost of classic medical research.

While research projects conducted in a medical environment require supervision by IRBs, no such limitation currently exists in PDR. This results in both greater immediacy and potentially harmful forms of bias in these research models. Acceptance of PDR as valid clinical research requires validated methodologies and tools, democratization of data, ethical oversight, and immediacy. Without these critical drivers, such research will continue to be marginalized and its benefits available only to the activated minority.

quote:

Swallow the doctor's diagnosis whole, or spend weeks plowing through the primary research literature at a medical library—at the risk of alienating your physician. Those were two of the primary choices available to lay people diagnosed 20 years ago with a serious disease. Today, motivated patients can use the Internet to dive well beyond WebMD, by joining online support groups and research-mining communities that often know more detail about etiology and treatment nuances than just about any medical specialist.

Countless well-educated patients and even some doctors and medical researchers have now embraced this approach to health care, part of a burgeoning movement called participatory medicine, but questions remain about the efficacy of this tactic and its push for stronger collaborations among patients and their doctors and other health care professionals.

quote:

Patients telling each other where to go for treatment, tracking drug side effects for post-marketing surveillance, owning their own data, refuting their doctors’ advice, raising money to direct their own experiments. They are the radicals, the superheroes, the wild-eyed optimists who believe they can transform medicine from the bottom up.

quote:

The National Cancer Research Institute (NCRI) will be advertising for new consumer members in the New Year. I think it would be very good if there were more representatives from the less common cancers for consumer members of the NCRI Clinical Studies Groups.

Application packs are now available to download from their website at http://ncrndev.org.uk/index.ph...iew&id=70&Itemid=117 or alternatively by contacting the NCRN Coordinating Centre on 0113 343 2254.


The deadline for return of application forms is 27th January 2010.