June 13, 2007

Online Patient Groups

Laura Landro’s column in the Wall Street Journal features a series of profiles of online patient groups like MPDinfo.org, ACOR.org, and my own side project (e-patients.net). Now seems like the right time to post some data that I’ve been holding back, waiting for the right opportunity to talk about it publicly. In August 2006, we conducted an RDD survey which included the question: “Do you ever use the internet to participate in an online discussion, a listserv, or other online group forum that helps people with personal issues or health problems?” 12% of internet users say yes.

I think the key word is “participate” since it implies that you post as well as read/lurk. That number rings true to me since it is right in line with the other content creation/social media activities we track – just 8% of internet users keep a blog, whereas 39% of internet users read blogs, for example. In the past we asked a broader question and got a much bigger number: “Do you ever use the internet to go to a website that provides info or support for a specific medical condition or personal situation?” 58% of internet users said yes in November 2004.

Again, question wording is key. In this older question we asked about whether someone visited a site, not if they participated in the discussion, which opens it up to the giant lurker population. Also, I wonder if it made a difference that the last phrase the respondent heard was “personal situation” (whereas the 2006 version ended on “health problems”). There are multitudes of sites that cater to all the personal situations one might be facing, many of which have nothing whatsoever to do with health & health care.

I updated the wording for the August 2006 survey because I wanted to capture the truest picture I could of the core e-patient population – those who are actively sharing their knowledge and contributing to the online world, not just surfing through it.