AM Posters 2009 START Conference Manager    

PatientsLikeMe: ALS Patients Sharing Experiences and Personal Health Information Online

Mia Liza Lustria, Gary Burnett, Juliann Cortese, Michelle Kazmer, Jeana Frost, Ji-Hyun Kim and Jinxuan Ma

(Submission #35)


The 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, benefiting 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 current study focuses on a qualitative analysis 1000 randomly chosen postings 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. Overall, this study seeks to examine the socially supportive discourse within an online community of individuals touched by ALS (including patients, their caregivers, and clinicians) so that we might gain richer insight into their experiences and needs as they try to cope with this debilitating and fatal disease.

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