Online Communities and e-Patients
Since 2010, pharmaceutical companies have joined startups, patient communities and providers in the social media realm. Many startups, particularly those enabling patient communities, have matured and broadened their scope. PatientsLikeMe has expanded to more than 1,000 conditions, CureTogether has gained the attention of major press outlets and 23andMe is defining personal genomics.
In addition, both PatientsLikeMe and 23andMe have published results in medical journals, bringing further validation to social networks and social media as having legitimate contributions to medicine. A PatientsLikeMe study, titled “Perceived Benefits of Sharing Health Data Between People With Epilepsy on an Online Platform,” was published in the journal Epilepsy and Behavior, and a 23andMe study, titled “Efficient Replication of Over 180 Genetic Associations With Self-Reported Medical Data,” was published in PLoS One, as well as the Journal of Medical Internet Research.
Meanwhile, white paper case studies have appeared on a regular basis. Examples include Forrester Research’s case study about Radboud Hospital in the Netherlands supporting young cancer patients with an online community and Cleveland Clinic’s use of a stepladder approach to achieve social media success.
But none has been more influential or quoted than the 2011 report from Susannah Fox from Pew Internet on “Peer to Peer Healthcare.”
These survey results showed the ubiquitous use of social media by those with chronic conditions and a trend toward routinely reaching out to others through social networks for advice on managing illness.
Two years ago, the e-Patient movement was just getting on its feet. Now it, too, is receiving national attention in the media and blogs. The Society of Participatory Medicine and its associated journal have grown, as has their influence.
The group has appeared at multiple conferences, as well as in videos on the Office of the National Coordinator for Health IT’s website advocating the importance of electronic health records for patients.
More recently Regina Holliday (also a hit at many health IT and social media conferences for her perspective on patient empowerment) was featured in a Newsweek article about the lack of coordinated care for her now deceased husband, who could have benefited from an EHR.
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