Patients want to help other patients, providers, and caregivers learn about their disease; however, health conditions challenge Facebook's "more sharing always is better" philosophy. It is becoming increasingly more difficult to maintain privacy for those who want it and to keep "normal life" and "medical life" separate on Facebook, so many of Facebook's advantages also become its disadvantages. Facebook "friends" often play additional roles in our lives such as cousins, co-workers, business contacts, people with whom we don't necessarily want to share personal health information. Facebook users may inadvertently disclose something about their health conditions simply by being a member of a group or liking a page, which other Facebook users may be able to see.
In an effort to expand our network while facilitating more private discussions, FMD Chat partnered Smart Patients. Smart Patients is a community entirely apart from Facebook and thus does not limit those who wish to connect with FMD Chat to only being those who have a Facebook account. Smart Patients is available to anyone who has access to the internet, and its community has a medically-influenced approach to information sharing — unlike other social networking sites that open their platforms to advertising, make posts accessible through search engines, and put the burden on users to employ privacy options. Although Smart Patients is not subject to the Health Information Portability and Accountability Act, the platform meets or exceeds the HIPAA de-identification standard in creating statistical, anonymous information about its users. (Read Smart Patient's Privacy Police here.)
Smart Patients was founded by Roni Zeiger and Gilles Frydman. Zeiger is the former Chief Health Strategist atGoogle, where he led efforts ranging from Google Flu Trends to Symptom Search. In 2012, he and Gilles co-founded Smart Patients, in order to amplify the knowledge created by networks of engaged patients. Zeiger serves as CEO of Smart Patients and continues to see patients part time at a local urgent care center. Frydman is a pioneer of medical online communities. In 1995 he founded theAssociation of Cancer Online Resources, the largest online social network for cancer patients. He is a founding editor of the Journal of Participatory Medicine and a founding member and former President of the Society for Participatory Medicine. Frydman is now co-founder and Chief Strategy Officer of Smart Patients.
Zeiger says, "I happened to learn about FMD in medical school, but it's barely in the consciousness of doctors, except for occasional academic discussions about obscure causes of high blood pressure. I think we're finally approaching a time where we understand the underlying causes of many diseases well enough that we can start to connect the dots between many so-called 'long tail' diseases. This hopefully means that research about other connective tissue diseases can shed light onto FMD and vice versa. We want to help tap into the expertise of patients with rare diseases and allow them to help uncover these connections. While FMD would be our first connective tissue disease community, we expect and hope others will follow, and we want the Smart Patients platform to facilitate knowledge dissemination between communities when that can be useful. Not only is this possible, I think it's essential to speeding up discovery in rare diseases which never have enough resources to do it alone."
Social media is and will remain an integral part of rare disease patients' ability to create a sense of community. According to a Pew Internet & American Life Project report based on a phone survey of 3,001 American adults and online survey of 2,156 National Organization of Rare Disorders members, one in four internet users living with high blood pressure, diabetes, heart conditions, lung conditions, cancer, or some other chronic ailment (23%) say they have gone online to find others with similar health concerns. A greater proportion of internet users living with less common, chronic health problems have gone online to find others with similar health concerns.
For a video tutorial about Smart Patients, click here.
