The rise of social networking sites is dramatically altering the way patients get and share information about their health, a new reality with profound implications for the way research funding decisions are made.
Canadian researchers published a report on Wednesday in the prestigious journal Nature highlighting how multiple sclerosis patients have successfully used social media to draw attention to Italian doctor Paolo Zamboni's controversial theory that the disease is caused by malformed neck veins and that symptoms can be alleviated with simple vein-widening surgery.
Although the theory has not been proven, and some research has emerged questioning Dr. Zamboni's findings, MS patients and advocates embraced his idea and used sites such as Facebook, YouTube and Twitter to spread the message, press governments to fund the vein-widening treatment here and encourage patients to seek the treatment at clinics overseas.
The situation has potentially serious consequences, as governments and health institutes are forced to change their health research spending based on social media campaigns. MS patients are also relying on word of mouth and anecdotal evidence posted online in deciding whether to undergo expensive surgery that could have serious risks.
"It really challenges the traditional paradigm of medical research, which is really geared toward protecting the patient," said Roger Chafe, an assistant professor in the faculty of medicine at Memorial University in St. John's and the lead author of the report.
The report notes that more than 500 Facebook pages, as well as YouTube videos and other sites, have popped up in recent months to advocate for the vein-widening treatment to be introduced in Canada.
"Indeed, the case indicates the unprecedented pressures that politicians and funders worldwide can now face to alter research priorities even in the absence of credible scientific evidence," the report says.
To date, the national MS societies in Canada and the United States have allocated more than $2-million toward research into Dr. Zamboni's theory, while the governments of Manitoba and Saskatchewan have each pledged $5-million for clinical trials of the vein-widening procedure. Some provinces are also developing guidelines on caring for patients once they return to Canada after undergoing the procedure overseas.
These developments constitute a major change, but medical professionals and governments must adapt and become willing to engage patients through social media, the report says. That's because as more people turn to social media instead of medical experts for guidance, they may get incomplete or inaccurate information; having health professionals engage with them might be a way to combat that, the report says.
"We tend not to be tweeting in general. We tend not to be that involved in social media. Should we? I honestly don't know the answer to that. My sense is we probably should," said Andreas Laupacis, executive director of the Li Ka Shing Knowledge Institute at St. Michael's Hospital in Toronto. "I don't think there's an easy fix here. I'm not an educator, but my sense is we don't do as good a job as we could at trying to educate our kids and our society to make them scientifically literate."
The authors also suggest that in some cases, such as the example involving MS patients, it might be prudent to fund clinical trials quickly if thousands of patients are potentially putting themselves in harm's way and spending great amounts of money overseas for a treatment that has not been thoroughly tested.
At least two patients have died, including one Canadian, after the vein-widening procedure, and many patients spend $10,000 to $20,000 to get the surgery.
Carly Weeks