MySpace and medicine

Social networks are not just the preserve of frivolous adolescent troglodytes; medical science is also benefiting from social capital. Sharing information the MySpace way could overcome two major constraints on clinical research: gaining access to enough people to obtain reliable results, and doing so without incurring huge costs.

PatientsLikeMe

An article in the most recent edition of New Scientist says that the MySpace mindset is already meeting medical science on the website PatientsLikeMe. Founded in 2004 by three MIT engineers, the website has enabled patients with the degenerative neurological disease amyotrophic lateral sclerosis (ALS) to share information about symptoms and treatments. The online community has expanded to include those sharing experiences of anxiety, depression, bipolar disorders, HIV/AIDS, Multiple Sclerosis, Obsessive Compulsive Disorder and Parkinson's Disease.

Online social networking is also benefitting genetics research. California-based personal genomics firm 23andMe is using a web-based patient community to study the genetic and environmental factors that can trigger Parkinson's. Users provide a saliva sample using an at-home kit, then use interactive tools to shed new light on distant ancestors, close family and themselves.

Altruism, not business?

PatientsLikeMe claims altruism, rather than business or social kudos, is driving the site and its users. So far, the site has foregone an advertising-based revenue stream. It also distinguishes itself from pure-play social networks such as Facebook and MySpace, describing itself as a personalised medicine platform with social networking components. Street cred is bestowed on those who share the most information and keep their data up to date, rather then those who have thousands of friends. The most common complaints involve problems concentrating, muscle tension and headaches. The most commonly prescribed solutions are individual therapy and physical exercise.

Yet the site does make money out of its social capital. Patients' information is sold -- anonymised -- to companies that are 'most aligned' with the needs of its patients.

23andMe's business model is more complex: it offers scans to anyone for $999 and hopes to get paying customers involved in research. The site also plans to charge an introduction fee for organisations wanting to recruit volunteers for research.

Taking control

The internet is also enabling patients and medical professionals to take control of their own personal research. Patients with life-changing illnesses are using online services such as EmergingMed to help them enrol in clinical trials. A Wall Street Journal article points out that only 3% of adult cancer patients participate in trials, citing lack of awareness as a crucial factor.

Online services for health professionals have also been developed using social networking models.

• The Gallup-Healthways Well-Being Index styles itself as the 'Dow Jones of health' and collects data related to health and well-being in the United States.
• BioCaster provides advanced search and analysis of internet news and research literature for public health workers, clinicians and researchers interested in communicable diseases. Based on text mining and natural language processing technology, it detects and tracks infectious disease outbreaks by monitoring many internet news feeds simultaneously, analysing some 9,000 documents per day to help users obtain a clear, timely picture about actual and potential disease outbreaks. The BioCaster system uses a disease ontology that provides detailed knowledge about diseases, pathogens, symptoms, people, places, drugs. This allows semantic indexing of relevant parts of news articles, enabling users to have quicker and highly precise access to information.

• Sermo is a networking website designed exclusively for US physicians. Founded by Daniel Palestrant in December 2005, it has grown rapidly and now has over 50,000 members. While much of the media coverage of Sermo has stressed its role as a forum for social interaction between doctors, it has become a new interface between physicians and the world of business. It also acts as a new tool for medical research, allowing its members day-to-day clinical observations to be aggregated in one place.