Social media has helped amplify the voice of many niche communities. Among of the biggest beneficiaries have been people navigating the healthcare system to better understand their own illness or that of a loved one.
At the e-Patient Connections conference in Philadelphia this week, speakers who live with chronic illnesses shared their struggles with the healthcare industry from gaining access to their patient records to getting physicians and pharmaceutical companies to treat them as equal partners in managing their care. The e-patient twittersphere includes individuals who coordinate online communities to help others better understand their illness to supporters like the nonprofit Society for Participatory Medicine to promote greater transparency between physicians and their patients.
Here are nine twitter handles to follow that include participants from this conference along with individuals and groups active in the e-patient space.
Regina Holliday (@Regina Holliday) is a medical advocate and artist who has helped raise the profile of e-patients and their advocates with her #walking gallery jackets that carry murals depicting patient and healthcare reform issues that are close to the person wearing it. She also has a blog
Jenni Prokopy (@ChronicBabe) is a writer, editor and founder of Chronicbabe, a website in which she shares her experience of living with fibromyalgia to motivate young women coping with a chronic disease.
Dave deBronkart (ePatient Dave) is a cancer survivor, keynote speaker and author who has become a vocal advocate for patient rights.
Carolyn Thomas (@HeartSisters) is a women’s health advocate author and heart attack survivor whose blog HeartSisters focuses on women with heart disease.
A Deep-dive Into Specialty Pharma
A specialty drug is a class of prescription medications used to treat complex, chronic or rare medical conditions. Although this classification was originally intended to define the treatment of rare, also termed “orphan” diseases, affecting fewer than 200,000 people in the US, more recently, specialty drugs have emerged as the cornerstone of treatment for chronic and complex diseases such as cancer, autoimmune conditions, diabetes, hepatitis C, and HIV/AIDS.
Tiffany Peterson ( @TiffanyAndLupus ) is an e-patient advocate with lupus who is the founder and community manager of Friends Against Lupus for lupus patients and their supporters.
Participatory Med (@s4pm) The Society for Participatory Medicine is a nonprofit promoting clinical transparency among patients and their physicians through the exchange of information with conferences a journal ( Journal of Participatory Medicine ) and a blog (e-patients.net) as well through the distribution of correspondence and other written materials.
Gideon Mantel (@Gideon_Mantel) is a serial entrepreneur and founder of Treato, a social network for people to share their experiences such as drugs they have been prescribed and the side effects they have had with them.
Niki Wyre (@RAChicks) is an e-patient with rheumatoid arthritis who co-founded RAChicks, an online community for people with rheumatoid arthritis. She also fundraises for a cure for rheumatoid arthritis and works with the Arthritis Foundation.
Kerri Morrone Sparling (@sixuntilme) is a writer and social media consultant who authors the blog sixuntilme where Sparling shares her day to day experiences living with Type 1 diabetes.
[Photo from Flickr user Tedeytan]
