There's something new in the world of Medicine 2.0 and it's called the e-patient. I'm still not sure exactly what an e-patient is, but I know that it has to do with regular everyday people like you and me informing ourselves as much as we can about our illnesses and communicating with each other and our healthcare providers as openly as possible about what we are going through. The website e-patients.net describes us as equipped, enabled, empowered and engaged. In that sense, I'd like to think of Postpartum Progress as the ultimate perinatal mood and anxiety disordere-patient blog, and you the reader, as an ultimate e-patient. You are here because you don't want to sit alone in the darkness hoping someone will come to your rescue.
I just love the idea of e-patients and participatory medicine, because I think collaboration between scientists, healthcare providers, current patients and survivors is key. The more data we share back and forth, the better.We will find out more about the causes, symptoms and treatments of perinatal mood and anxiety disorders like postpartum depression.The diverse collaboration will help weed out any undue influence by the pharmaceutical industry or others with an agenda. And the simple practice of sharing itself will help eliminate stigma and create a sense of mutual support.
Several websites have arisen out of the e-patient movement that allow people with similar illnesses or diseases to share thoughts and ideas with each other. I thought you might like to know about them.
Inspire: There are more than 130,000 people on this site, all sharing info about their different illnesses. Inspire is described as a safe place to discuss health and help each other. You can join for free, createa profile, join groups with similar interests, write about your illnessin a journal that others can read and more.
Cure Together: If you click the link, it will take you directly to the Cure Together page on depression. You can join for free. Cure Together did not have postpartum depression listed as a specific condition, so I (of course) took the liberty of getting it started. You can add to the list of symptoms, treatments or causes of postpartum depression yourself and the site will track how many people experienced each.
PatientsLikeMe: As they describe it, "PatientsLikeMe is committed to providing a better, more effective way to capture valuable results and share them with patients, healthcare professionals, and industry organizations that are trying to treat diseases." You can join for free, create a profile and add as much or as little information about yourself as you'd like. You can create mood maps, get info on research and read symptom and treatment reports. Here is the Patients Like Me forum on postpartum depression — there's not a whole lot on this site yet about PPD and related illnesses. I joined the "Mood Community", which has more than 12,000 people in itwith whom you can commune.
Wellsphere:This sitehas millions of readers.You can join free, start your own community or join one, find out about resources near you, watch videos, add your own blog posts and more. Here's the Wellsphere page on postpartum depression.
I'm sure there are others as well. Let me know if you are using these services. And for more on e-patients, visit:
- E-Patients.net
- the Society for Participatory Medicine
Remember, the motto of Postpartum Progress is: Together. Stronger.
Hello
I'm particularly interested in harnessing the power of epatients for medical education.
It's great to find your blog and I will be back soon!
Anne Marie