Marcel Gignac does not mince words in his blog about the new, CCSVI theory of multiple sclerosis and how to treat it. He has called Nova Scotia’s health minister a “murderer” for not funding the controversial treatment, said physicians at the Halifax MS clinic were unqualified to practice medicine and described a new MS drug as “the most expensive form of Russian Roulette.”

The blog’s preface states that specialists in the disease, who typically have a four-year medical degree and five years of neurological training, simply read books that interpret what patients feel.

“The only expert can be the patient,” asserts the resident of Amherst, N.S., a former call-centre manager. “I am an MS expert.”

Mr. Gignac is a particularly fiery member of the legion of CCSVI advocates, whose efforts have convinced provincial governments, opposition politicians and health charities to pursue a theory that is still far from proven.

The boosters of Dr. Paolo Zamboni, CCSVI’s pioneer, are only the noisiest, however, in a new movement that is seeing patients and members of the public increasingly try to influence the health-care world, with both constructive and disturbing consequences.

Groups of like-minded parents helped spread fears that certain childhood vaccines caused autism, despite a raft of studies that refuted the claim; a Toronto breast-cancer patient skillfully appealed through the media recently for government funding of a cancer drug; families of fatally ill patients have repeatedly taken Canadian hospitals to court to try to force them to provide end-of-life treatment doctors considered fruitless.

Other efforts are more organized and even originate from within the system. An Ontario hospital hired a research firm to randomly select a citizen’s panel that advised it on which services to cut from a deficit-ridden budget.

A new patient association aiming to end the medical professional’s monopoly on shaping health care has recently launched in Canada, while in the Untied States another, two-year-old group embodies the new ethos in its very name: the Society for Participatory Medicine.

“The world has changed,” said Dave deBronkart, New Hampshire-based co-chair of the society. “It is possible now for smart, thoughtful patients to have information that their doctors haven’t seen yet. This doesn’t mean doctors are stupid, this doesn’t mean doctors do not know what they’re talking about. It means there is a new source of information in health care.”

This patient activism is also fuelled by a growing realization that expert-run medicine is itself less than flawless, evidenced by the toll taken by drug side effects and medical errors, and the impact of aggressive pharmaceutical marketing.

Some observers argue that newly empowered patients can finally end the doctor-knows-best mentality, help spread the latest medical knowledge faster and make more-informed decisions about what treatment is best for them. Others, though, worry that pressure from vocal but scientifically untrained patients and citizens could undermine the system’s much-vaunted embrace of “evidence-based” medicine.

Mr. deBronkart’s own story makes an intriguing case for more patient influence. After being diagnosed with kidney cancer and given less than six months to live, he says, “I found myself tumbling down a rabbit hole toward my death.” But his own primary-care doctor referred him to a patient forum on the Internet. Members told him about a treatment — high-dosage interleukin — that many hospitals do not provide but that in a minority of cases can reverse his type of malignancy.

He got the therapy, which worked, and discovered that the discouraging information on its effectiveness and side effects in the published medical literature and official websites was already way out of date. Mr. deBronkart became convinced that the established system of propagating research — in which studies are submitted to a journal, reviewed by peers and finally published in a process that can take a year or more — could not keep up with a deluge of medical-science developments.

“What I found from the patient community was better, more up to date and medically more sophisticated than the information that most oncologists have,” Mr. deBronkart said. “The information explosion has got to be more than anyone can humanly keep up with”

Other cases, though, raise questions about whether networks of patients always make for reliable sources of medical knowledge.

The Zamboni theory — that multiple sclerosis is triggered by narrowed veins that cause a back-up of blood to the brain and inflammation that damages its myelin coating — had received little traction until promoted in glowing Canadian media accounts, then embraced by patients on what has grown to 500 Facebook pages and countless other Internet forums and sites.

Patients convinced U.S. and Canadian MS societies to fund several trials of the CCSVI theory and the Saskatchewan and Manitoba governments to bankroll a trial of the treatment itself.

Mr. Gignac said he had been diagnosed with a rare, fatal form of MS, had the “Liberation” treatment in Albany, N.Y., last November and says that it restored his balance — and kept him alive. It has also been effective in more than 90% of the thousands of patients he has spoken to about their treatment, he said.

“The biggest problem we have with our decision makers is they don’t take patients into account,” Mr. Gignac said. “This is a mentality that is unfortunately drilled into doctors during the medical training, that they are God … To get doctors to sit down and actually listen to you is hard to do.”

Yet the scientific evidence around Dr. Zamboni’s theories has so far been mixed, with some studies finding evidence to support them and as many or more suggesting CCSVI is not the disease’s cause. The pro-Zamboni sites inevitably extoll the research that favours CCSVI, dismiss the negative studies and vilify anyone who voices skepticism about the hypothesis.

An MS patient who sat on a federal government advisory panel that ruled against funding a trial of the Zamboni procedure asked that her name not be made public. “Patients [who don’t embrace the treatment] have been bullied, have been harassed,” Dr. Alain Beaudet, head of the Canadian Institute for Health Research, said last year about the panel member’s decision.

Meanwhile, the worldwide movement that sprung up around the idea that the measles, mumps and rubella vaccine causes autism is blamed for a drop in vaccination rates and outbreaks of the diseases in the U.S. and U.K., though the study that touched off the controversy has been found to be fraudulent and many other studies have shown no link between the shots and autism.

That cumbersome, methodical medical publishing system is designed to winnow out the good science from the bad in such circumstances. But Mr. deBronkart, who dismisses the autism activists as “vaccine idiots,” said a smart patient community can both push along good science faster and readily filter out faulty ideas.

Patient activism also has the potential to force the system to look differently at medical evidence, and for the better, said Dr. Andreas Laupacis, a widely respected researcher at Toronto’s St. Michael’s Hospital. He pointed to the case of Jill Anzarut, the breast-cancer patient who argued through the news media and Internet recently that the Ontario government should fund her use of Herceptin, though the drug had been tested only on women with larger, more advanced tumours.

After initial resistance, the province agreed to the 35-year-old’s request, with some oncologists arguing there is no reason the drug would not be useful against smaller tumours, just because they have not been studied specifically.

Still, even Dr. Laupacis warns there needs to be limits on the influence of lay patients and citizens: “We can’t get to the stage where everybody … who gets 300,000 Twitter followers and then puts pressure on a granting agency that has limited dollars, convinces them to study something that has little likelihood of being a useful therapy.”

Dr. Laupacis did spearhead a novel project to foster public input into the health-care system — a randomly selected “health policy citizens council” that was briefed on a series of issues over several weekends from 2008 to 2010, then asked for their recommendations, with sometimes unexpected results.

In late 2009, the idea was put to more real-world effect by Northumberland Hills Hospital in Cobourg, Ont. It used a research firm to scientifically select a similar citizens’ panel. The group was tutored extensively, then asked for input on potentially inflammatory service cuts the institution had to make to balance its budget.

“What was surprising was the quality of their report and how well informed they were,” said Robert Biron, the hospital’s CEO. The Ottawa Hospital has recently launched a similar project to canvass randomly chosen current and former patients on how to run a new cancer-care centre.

Dr. Laupacis points to perhaps the original example where participatory medicine was used to great effect: The lobbying by the gay community and others in the 1980s and ’90s that led to more and different types of clinical trials to find HIV/AIDS treatments.

“People would look at the research around HIV as a huge success story,” he said. “That disease, if you can afford the drugs, has gone from being a death sentence in nine months to being a chronic disease.”

http://news.nationalpost.com/2011/05/14/the-expert-patient-who-knows-best-the-doctor-or-the-patient/