PatientsLikeMe: ALS patients sharing experiences and personal health information online

Abstract

AbstractThe literature provides increasing evidence of the benefits of social support groups on the psychosocial functioning and health‐related quality of life of chronically‐ill patients. Social support groups have been found to improve coping, enhance the quality of life, facilitate health decision making, and in some cases, increase survival time among chronic disease patients. Patients benefit from a strong sense of shared experiences in a cooperative and symbiotic environment. Information and communication technologies have extended the capabilities of social support groups, enabling patients to share information across barriers of geography and time, benefitting especially those suffering from rare chronic diseases who may not find similar support groups within their immediate communities. Online environments also, in some cases, provide a measure of anonymity and opportunity for people to disclose sensitive health information without embarrassment while also allowing them access to a wider variety of information resources.PatientsLikeMe (PLM) is an online community that uses Web 2.0 technologies to allow its members to share not only social support but also their symptomatology, treatment, medication, and outcome information with other members. The first of its kind, PatientsLikeMe has extended the capabilities of online social support groups by introducing powerful tools for sharing and analyzing personal health information. The website currently supports 2,300 patients with chronic diseases like ALS (Lou Gehrig's Disease), Multiple Sclerosis (MS), and Parkinson's Disease.The current study focuses on a qualitative analysis of the ALS community within PLM. ALS (amyotrophic lateral sclerosis), or Lou Gehrig's disease, is a rare and incurable life‐altering disease affecting approximately 30,000 Americans. This fatal, neurodegenerative disease attacks the nerves and muscles, resulting in the progressive loss of voluntary motor function and, eventually, difficulties in speaking, swallowing, and breathing. While ALS contributes to the weakening of voluntary motor functioning and eventual paralysis, most patients are still able to think clearly and rely on a variety of assistive technologies to aid in communication. The ability to communicate with others is an important aspect of patients' ability to cope with their disease and remain active participants in their own care.