The Telegraph’s recent retrospective on Facebook and its evolution from 2004’s ‘Thefacebook’ of Harvard University students to the Facebook that many of us use now, with Chat, timeline and a converged mobile and desktop design, led reader Mike Clark to drop Editor Charles a line about how healthcare isn’t maximizing social media and internet-based innovation. Recent studies have indicated that these social patient communities benefit their members. Agreed, but there are increasing qualifications–and qualms.
Back in 2014, Facebook made some noises on forming its own online health communities, a move that was widely derided as Facebook monetizing yet another slice of personal (health) data from users. While Charles has made the excellent point that “almost all good health apps are essentially the tailored interface to an internet service that sits behind it, a fact often forgotten by commentators”, Editor Donna on her side of the Atlantic has seen concerns mount on privacy, security and the stealthy commercialization/monetization of many popular online patient support groups (OSGs) which Carolyn Thomas (‘The Heart Sister’) skewers here, excepting those with solid non-profit firewalling (academic, government, clinical). Example she gives: Patients Like Me, which markets health data gathered from members to companies developing products to sell to patients. How many members, with a disease or chronic condition on their mind, will browse through to this page that says in part: “Except for the restricted personal information you entered when registering for the site, you should expect that every piece of information you submit (even if it is not currently displayed) may be shared with our partners and any member of PatientsLikeMe, including other patients.”
We’ve also noted that genomics data may not be sufficiently de-identified so that it can’t be matched through inference [TTA 31 Oct 15], with the potential for sale. And of course Hackermania Running Wild continues (see here).
For now general information sites like WebMD and personalized reference sites such as Medivisor feel more secure to users, as well as small non-commercialized OSGs and ‘closed’ telehealth/telemedicine systems.