Online Communities Become Collaborators in Research

Uncommon illnesses, and even relatively common ones, can be difficult to understand and treat without the involvement of large numbers of people who have the illness. One solution to the problem of such research is to redefine all aspects of healthcare as collaboration between patient and provider. Such a redefinition has been promoted in a recent Institute of Medicine publication (3). In fact, this collaborative approach has already yielded benefits. A recent collaboration between scientists and a group of parents of children with esophageal reflux have identified a gene associated with the disease (4).

On-line support groups and communities of individuals with shared health concerns now abound. On-line communities of people interested in Neurologic disease were supported by the Massachusetts General Hospital Department of Neurology starting in 1995. The resource now includes over 200 discussion groups on a variety of neurologic diseases including 40,000 registered ‘interactive” users and as many as 400,000 “read only” users. Research into the hopes and dreams of this collection of communities revealed that those who interact with one another, and share experiences, are more satisfied with their Internet experience. In addition, the interactions have resulted in significant activism and efforts to collaborate on research issues. There are many examples of this activism and three are presented here.

First, is the creation of an international Parkinson's Disease patient advocacy group called "People Living with Parkinson's" (www.plwp.org). The PLWP organization was formed after users “found” each other in the MGH Neurology bulletin board, eventually becoming a tight-knit group of like-minded patients and caregivers. The organization now consists of highly motivated members around the world dealing with Parkinson's Disease, and the group hosts a number of physical-world fundraisers and has a project to collect demographic research data on young onset Parkinson's Disease patients.

A similar example is the Huntington's Disease Advocacy Center (www.hdac.org), one of the most highly recommended websites for people looking for information about Huntington's Disease. This resource was created by caregivers who met each other in MGH Neurology's chatrooms. What started as typical "weak tie" relationships between people evolved into the highly productive coordination and creation of a website that is far more helpful and informative than most of the "professionally" created medical resources on the Internet.

A final example is a group of people with seizures who have undertaken their own nationwide illness awareness campaign. They “met” on-line in the MGH Neurology forum on epilepsy and then initiated a campaign to document their own experiences with epilepsy. Their goal is to explore ways to improve public understanding of the illness through telling their own stories.