Online patient communities

Disease-orientated consumer online communities radically change the way in which individuals monitor their health, but they could also create new ways of testing treatments and speed patient recruitment into clinical trials. So starts the editorial in the September issue of Nature Biotechnology (26, 953; 2008). From the editorial:

“Several online communities for patients now offer a wealth of anecdotal and factual information about health, and tools for networking with like-minded individuals. The web sites are public, collaborative and simple to use. They are also starting to offer patients content that goes beyond what is available through existing gatekeeper-controlled healthcare infrastructures. Some even offer to host personal medical data, empowering patients to understand and manage their individual care in a manner that is powerful and disruptive to current medical practice. If these ‘user-generated healthcare’ data can be harnessed with data from conventional biomedical and clinical research, the benefits could extend beyond patients to payors, providers and the drug industry itself.”

User-generated communities discussed in the editorial include Daily Strength, Inspire and PatientsLikeMe, the last of which has more than 7.000 registered users. PatientsLikeMe is different from other services in that patients record data about themselves and share it in an open environment. The editorial continues: “Using standardized metrics provided on the site, patients can log their symptoms, severity and progression, and drug regimens and dosages, together with the efficacy and side effects. All the data is then neatly displayed in bar graphs and progress curves. Patients can thus rapidly identify others with similar ailments in similar stages of disease. They can use the wisdom of the crowd to learn which treatments work and which don’t. This is particularly useful for patients with rare conditions (and their physicians) who might not otherwise encounter comparable sufferers.” The editorial goes on to discuss some of the benefits and disadvangates of this patient-driven form of “peer review”.


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