I’m back from my time off and have been slowly catching up with non-urgent
e-mail and news. One item caught my eye from the e-patients blog focusing on two new studies produced by the social network PatientsLikeMe. This site differs from many others health-social networks because it enables users to input detailed information about their care and share it with others. PatientsLikeMe was featured in a recent New York Times magazine article that you can find here.
What’s most interesting about these two studies (focusing on ALS) is that they help to address the unmet need for more data on why health social networks are useful to patients and whether we can learn about health outcomes by mining user-generated information. However, we must also be aware that some patients can quickly become burned out because of the work required to input data about their condition on a regular basis. One former PatientsLikeMe user wrote a letter to the New York Times about the site, saying:
“I had decided to delete my profile from the PatientsLikeMe Web site. More than anything, I found it to be a hypochondriac's virtual theme park. Tracking symptoms and entering the information is time consuming and tedious. I just cannot maintain that level of interest in myself. If I ‘fell behind,’ I would routinely receive e-mail messages admonishing me to keep up my data for the good of the community. I do not need that kind of aggravation.
I hate being a patient, so I have never been fond of the name.”
PatientsLikeMe: The Only “Real” Health Social Network?
In a post published on the e-patients blog John Grohol described PatientsLikeMe as “arguably the only ‘real’ health social network online today, because it lets patients share actual data that matters with one another -- their personal health data. (Other supposed health social networks seem more focused on the 'social' than the "health," allowing for little integrated data sharing.)”
I’m not sure I agree with Grohol’s point about other health-focused social networks. However, I do think the new PatientsLikeMe studies are groundbreaking and provide important evidence that social networks can have significant clinical, psychological and societal benefits.
Social networks based on health issues is a natural evolution of the web. But, I have to agree with the person who wrote the letter. Don't try to use social proof to cajole your users into being an active part of the community.
Instead, work on making the community so valuable and useful to them that they'd want to do it on their own.
Posted by: kamal | June 7, 2008 7:51 PM | Permalink to Comment