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AJN, American Journal of Nursing:
doi: 10.1097/01.NAJ.0000406403.80894.94
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Leveling the Research Field Through Social Media

Jacobson, Joy

Section Editor(s): Pfeifer, Gail M. MA, RN

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Abstract

Patients' social networking is influencing the funding of research.

It has long been a truism in health care that one person's quackery is another person's cure. But now, thanks to social media, many "alternative" models of care no longer inhabit the margins of medicine. Facebook, Twitter, LinkedIn, Google Plus, and other Internet-based entities give patients, researchers, and clinicians forums for sharing perspectives and information, even raw data, on all manner of mainstream and alternative therapies. But patients appear to be taking the greatest advantage of these sites, in some cases pushing for the funding of research into treatments that scientists would otherwise dismiss. Whether that's a cause for celebration or alarm depends on whom you ask.

Figure. Heather Tuck...
Figure. Heather Tuck...
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One recent example is the Facebook community supportive of Italian researcher Paolo Zamboni's theory that chronic cerebrospinal venous insufficiency causes multiple sclerosis (MS) and that vein widening treats it. Many scientists say there's insufficient evidence even to justify a randomized clinical trial. As Chafe and colleagues write in the April 28 issue of Nature, tens of thousands of Facebook users have united to place "unprecedented pressures" on the Canadian government, which along with the Multiple Sclerosis Society of Canada has devoted more than $2 million to fund seven studies. More recently, Marder and colleagues wrote in a study published online (August 8) in the Archives of Neurology that findings in a separate study do "not support the theory that chronic cerebral venous insufficiency exists in MS."

Whether the results of such studies are positive or negative, the information is valuable, and involvement of patients is a step forward, according to the blogger known as e-Patient Dave, Dave deBronkart (http://epatientdave.com). When diagnosed in 2007 with stage IV renal cancer and given 24 weeks to live, deBronkart went online. Through social networks he was guided to specialists and an experimental drug trial that vanquished the cancer. He has since dedicated himself to the "e-patient" movement, which advocates "empowered, engaged, equipped, and enabled" patients; he also cofounded the Society for Participatory Medicine.

The best method of measuring a therapy's efficacy is scientific consensus founded on peer-reviewed, reproducible evidence. But phenomena such as fraud (the fabrication or suppression of data), publication bias (the publication of only positive results), and the decline effect (the decreasing validity of research findings over time) complicate matters. "In my view these lower the bar for how reasonable a proposed alternative needs to be before it's worth looking into" by researchers, deBronkart said.

DeBronkart also said that too often quality improvement efforts in health care fail to involve the people most affected by them: patients. For decades the Dartmouth Atlas of Health Care has documented wide variations in clinical practice and found that a choice among treatments cannot be made without consideration of the patient's preferences about outcomes and adverse effects. DeBronkart praises social networking sites such as PatientsLikeMe, which is funded in part by drug companies, where patients can track data on their symptoms and treatments and actually conduct research. A PatientsLikeMe study on lithium as a treatment for amyotrophic lateral sclerosis countered previously published "promising" findings. Wicks and colleagues write in the May issue of Nature Biotechnology that these results show that "data reported by patients over the Internet may be useful for accelerating clinical discovery and evaluating the effectiveness of drugs already in use."

Social media are changing the research paradigm in other ways, as well. Adrian J. Ebsary (@AJEbsary on Twitter), a biochemist and the online community specialist at the University of Ottawa, said that social networks provide new opportunities to researchers seeking both data and funding. Kickstarter.com and crowdrise.com, for example, allow researchers to collect microdonations—even a few dollars at a time—and "eliminate the need to work through a funding agency," he said.

Ebsary also sees a "massive" potential for data in patients' blogs on symptoms and treatments. "The challenge is to mine the data properly," he said. "We need to recognize blog posts as a significant contribution of patients to science. But we need to give patients a venue to do it that overcomes the privacy issues. That's a hypothetical now."—Joy Jacobson

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REFERENCES

Chafe R, et al. Nature 2011;472(7344):410-1.

Marder E, et al. Arch Neurol 2011 Aug 8 [Epub ahead of print].
Wicks P, et al. Nat Biotechnol 2011;29(5):411-4.

© 2011 Lippincott Williams & Wilkins, Inc.

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