Health Stories Project
Health Stories Project has an online presence in multiple platforms, including this website as well as Youtube, Facebook, and Twitter. Patients are invited to tell their stories in response to a variety of prompts. The site includes a large, searchable collection of stories about a wide variety of conditions and experiences. The stated purpose of the site is “to give people opportunities to share their personal health experiences and to learn from the experiences of others.” Digging into the privacy policies reveals that information provided can be used for targeted advertising and the site is owned by HPG, LLC, which is described on an assets data management site as “a provider of patient engagement services to pharmaceutical and biotechnology businesses through managed patient and caregiver networks in a variety of therapeutic areas.”
The site is a source of stories, but may be more important for prompting discussion about informed consent and how patient stories are used, as well as how to weigh the benefits of being able to share one’s story (and read stories by others) with the other uses to which these stories may be put. The site states openly at the outset that they are not a non-profit and it doesn’t hide these multiple purposes (nor is it difficult to track down the connection to HPG, LLC); however, they don’t lead with this, either.