PatientsLikeMe.com Aggregates Data for Payer, Industry Applications

Reprinted from INSIDE CONSUMER-DIRECTED CARE, a biweekly newsletter with timely news and insightful analysis of benefit design, contracts, market strategies and financial results.

By Michael E. Carbine, Editor, (mcarbine@aispub.com)

PatientsLikeMe, a social networking Web site, provides an interactive online community for patients with what Ben Haywood, co-founder, calls "life changing illnesses:" Parkinson's disease, multiple sclerosis, ALS (Lou Gehrig's disease), HIV and mood disorders.

But what makes the Web site's business model particularly interesting is its focus on aggregating data that payers, providers and industry can use to create products and services that improve the lives of patients. Heywood also says the site is generating interest from payers because of its potential as a disease-management "lite" tool.

The site is structured in a way that helps inform treatment decisions and let people know what is working in the real world. Individual channels provide customized disease-specific outcome and visualization tools designed to help patients share information about their conditions, including symptoms, treatment and treatment outcomes over time. Users post information on their current treatment, symptoms and outcomes. Other users join in to discuss the information within an open forum, private messaging and comments posted on each others' profiles. Heywood describes it as a community where people come together to solve problems.

Physicians, Industry Are Watching

In a Web chat on Oct. 30, Heywood noted that both payers and providers are taking notice and starting to use the information available on the site. While the site is patient-centered, it attracts physicians who cull through the data for use in their clinical practice. Some physicians also have joined in the discussions.

Payers, meanwhile, are viewing PatientsLikeMe as a "lighter-weight" disease management platform, a peer-based model akin to an online version of Alcoholics Anonymous, which, Heywood argues, is the "most successful peer-based disease management program around."

Heywood says the site's business model focuses on engaging the industry in the disease communities so they can better meet the needs of patients. While the site first and foremost strives to create communities that help patents, what Heywood calls the "structured quantitative longitudinal data" gleaned from the site also will result in better products for patients. "Patients want to know that the industry is listening and understands their needs and is creating products that impact their lives," Heywood says. "Those who really embrace this information will ultimately make the best products and services to meet our patients' needs."

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