www.PatientsLikeMe.com – The power of patient-provided information

Pharmaceutical companies depend on data – and lots of it – to develop drugs and measure their effectiveness. And many patients are eager to supply that information if it might mean better treatments or better quality of life.

That’s the premise of PatientsLikeMe.com. Launched in 2006, it connects patients to other people dealing with the same life-altering disease. Not only does it allow users to share experiences and provide peer support, it also generates a goldmine of data by encouraging patients to track and quantify their symptoms, medications, and outcomes.

Today, the pharmaceutical industry relies on point-in-time, survey-driven information, explains David S. Williams III, the site’s co-founder and head of business development. In contrast, PatientsLikeMe provides a much wider range of data.

Pharmaceutical companies can monitor its forums for insight into patient perspectives or recruit its members for clinical trials. Most exciting, however, is the opportunity to examine real-world, long-term data on how patient attitudes, decisions, and outcomes change over the course of their disease.

You now have a different longitudinal way of looking at how patients interact with your medication that you never had before,” Williams says.

To date, nearly 20,000 people from around the world have joined PatientsLikeMe, which offers on-line communities for patients with ALS, multiple sclerosis, HIV, Parkinson’s, and a variety of mood conditions. Williams predicts those numbers will increase to one million patients and 200 communities by the end of 2011.

“The people we’re attracting are that 5-15% of people in every single disease who will share their information openly. We know that target group exists,” he says. Once PatientsLikeMe proves that sharing medical information provides more collective benefit than keeping it private – establishing best care practices and accelerating research into treatments – he anticipates more people will overcome their privacy concerns.

But even data from the 5-15% segment alone has tremendous value, especially for a prevalent condition like heart disease. “The Framingham heart study has 5,000 people,” Williams points out. “We’re talking about building 200 Framingham heart studies in 200 different diseases.”

How reliable is the information generated by PatientsLikeMe? Although patients misinterpreting or misreporting information is a very real possibility, the aggregated data is structured to make outliers evident. Because these charts and graphs are posted on the site, patients have an opportunity to spot and correct mistakes themselves. If a patient sees that she is the only person who reported taking a particular medication for a particular purpose, for example, she may realize that she’s misunderstood why her doctor prescribed it.

Unlike most “health 2.0” businesses, PatientsLikeMe forgoes advertising in order to maintain high credibility with its members. Instead, revenues come from selling data to carefully screened partners that develop or sell drugs, devices, insurance or medical services aligned to the needs of patients.

While it’s a model that promises profitability, the ultimate goal is to benefit the patients themselves. As the site’s founders explain, “When patients share real-world data, collaboration on a global scale becomes possible. New treatments become possible. Most importantly, change becomes possible.”