Not long after Kimberly* learned she had multiple sclerosis, she discovered PatientsLikeMe, an online community where people with mental and physical health disorders give one another social support and share information about their diagnoses, treatments and symptoms. Kimberly uses the site daily, not only to interact with other MS patients, but also to help her track her condition. The disease has affected her memory, so having a place to store information about her medications, their side effects, her pain levels and other disease-related issues allows her to evaluate her health status and provides a detailed map of what’s happened with her health between visits to her neurologist.
The site has also helped her realize that she’s not alone. “It’s a good avenue for me to vent and read other people’s venting,” she says. “You can see that so many people around the world have this disease in common.”
Kimberly also likes knowing that the data she provides might help researchers discover better treatments someday. That’s because the site strips that data of identifying information to protect users’ privacy and creates a massive database for academic and commercial researchers, thanks to the work of neuropsychologist Paul Wicks, PhD, who directs research and development at PatientsLikeMe.
Wicks has harnessed his talents to shape the PatientsLikeMe database into a tool that he believes will provide researchers with a rich dataset, larger than any they could obtain through traditional research methods. Within PatientsLikeMe, the amyotrophic lateral sclerosis (ALS) community alone boasts almost 5,000 users, a huge number compared with the 30 to 40 patients in the average ALS study.
“PatientsLikeMe provides the biggest aggregated patient registry for diseases like ALS, mood disorders and multiple sclerosis,” says Melanie Swan, of MS Futures Group and a researcher who has written extensively about how online communities can advance scientific discovery. “Even if it only captures 5 percent of a patient population, that’s many times more than a traditional research study can hope to access.”
Today, PatientsLikeMe has more than 135,000 members with more than 1,000 conditions. To get the most out of the data patients provide, Wicks and his research team design surveys tailored to each disease. Named one of Technology Review’s 35 innovators under age 35, Wicks believes that the model of using social media to encourage patients to share their clinical data with each other and with researchers has the potential to revolutionize clinical research.
“We’re creating a massive database that follows patients and their symptoms over time, asking them the kinds of clinical questions we think will be useful for charting the course of their disease,” says Wicks. “Researchers need only find a question they want to ask and then mine the data to get their answer.”
How it works
The site prompts patients to provide regular updates about their symptoms, their medications, their mental states and other aspects of their health. For example, each time she’s online, Kimberly rates her symptoms, including pain, mood, motor control and fatigue, and she tracks the medications she’s taking.
Researchers can then mine the data to answer questions such as whether a drug is effective. For example, after a 2008 study of 16 patients suggested that the drug lithium carbonate slows ALS progression, many PatientsLikeMe members began taking the medication. Wicks’s team used its database to assemble a sample of patients 10 times bigger than the original study, matching patients who used lithium with patients who didn’t. The results, published last April in Nature Biotechnology, showed that lithium had no effect on disease progression.
Although that finding disappointed many ALS patients, it also took away false hope about a drug with many serious side effects, says Wicks, and his research team was able to conduct, complete and publish the study in nine months. In contrast, a traditional survey study with the same number of participants would take more than two years.
“By the time we published our preliminary results, it was clear to most patients looking at their data on PatientsLikeMe that lithium was not slowing their illness down,” says Wicks. “If they had been in a traditional ‘blinded’ study, they might not have known that in their lifetimes.” PatientsLikeMe aims to get as much information as possible into patients’ hands, says Wicks. To that end, the site provides information typically reserved for physicians and researchers, including clinical tests and algorithms that use data on disease progression to predict how long a patient is likely to live.
“We have a non-paternalistic view of medicine,” says Ben Heywood, who co-founded the site in 2004 with his brother James to help their brother Stephen, who had ALS.
Of course, there are limitations to PatientsLikeMe data, admits Wicks. Members are by no means random, and all the data is self-reported. But because the number of patients with each disorder is so large, Swan believes the aggregated data are quite reliable. One study published by George Washington University industrial/organizational psychologist Tara Behrend, PhD, last year in Behavioral Research Methods found that crowd-sourced survey data — data collected from an online pool of willing participants — were as reliable or more reliable than data collected from traditional university samples. In addition, as the site evolves, Wicks hopes the data will improve. He recently moved back to his native England to see if he can link national health-care data to the PatientsLikeMe database. In December, British Prime Minister David Cameron announced that he wants to make National Health Services data — stripped of any identifying information — available for research. That would mean that PatientsLikeMe members in Great Britain could allow the site access to their medical records and could be matched to their self-reports.
“Once we’ve linked into national health-care records, we can reduce the data entry burden and make better conclusions from the data,” says Wicks.
And while the company makes money by selling deidentified data to pharmaceutical and biotech companies such as Novartis, Merck and Biogen Idec, PatientsLikeMe also partners with selected academic organizations to conduct research. If it’s a large-scale project that requires more personnel than the company can provide, researchers can include PatientsLikeMe in a grant application.
The company is honest with participants about its business plan. Its selling of data to health-care companies, says Wicks, is more transparent and potentially more beneficial to the site’s members than selling advertising.
“We find studies that patients want done anyway, and then find someone willing to pay for it,” he says.
For example, companies can use PatientsLikeMe data to examine how effective their drugs are in the real world. “There are thousands of patients taking many combinations of drugs and our database can look at that,” says Wicks.
Working for PatientsLikeMe is an extension of the interests Wicks has had his whole life. He developed an early fascination with neurological disorders, reading books such as Oliver Sacks’s “The Man Who Mistook his Wife for a Hat.” That led to a job helping families of children with autism during summer break from Durham University in England. While his friends flipped burgers at Burger King, he changed diapers and helped parents deal with the struggles of caring for children with developmental disabilities.
That experience inspired him to pursue a doctorate in neuropsychology at the Institute for Psychiatry at Kings College in London. There, he studied with two of the few psychologists in the world working on cognitive deficits in ALS at the time: Laura Goldstein, PhD, and Sharon Abrahams, PhD.
At his first ALS lab meeting, Wicks learned that an online ALS community called BUILD-UK was looking for a volunteer to help moderate a patient forum. Wicks, the son of a computer executive, stepped up. That decision has shaped his career.
His work with BUILD sparked his interest in using online communities to advance clinical research.
Through BUILD-UK members, he learned about the fledgling PatientsLikeMe, based in Boston, which, at the time, was exclusively focused on ALS and was trying to gather patients’ data on their symptoms and treatments. In 2006, Wicks contacted PatientsLikeMe, and Heywood hired him soon after to moderate the company’s patient forums.
His job quickly expanded to include managing and carrying out scientific research using the data. By 2008, he moved to Boston and became director of research. Wicks enjoys the pace of research at PatientsLikeMe. He and the research team have published 15 papers in three years and, because the site shares all its data with patients, he feels like he’s directly influencing patients’ lives.
“Working in industry has broadened my perspective of how I can use my skills to make a difference for patients,” says Wicks. “We’re more nimble and see results quicker, and, in the end, that’s better for the patients we serve.”
Beth Azar is a writer in Portland, Ore.