Society for Participatory Medicine
e-patients.net blog
patient networks
general, patient networks, pt/doc co-care, pts as teachers, reforming hc
An e-patient issues an RFP, saying what’s important to him
It’s funny how things turn out sometimes. Lately I’ve written a lot here about e-patients taking an active role at a new level in healthcare, not just engaging in their care, but actually defining what it should be. Well, wouldn’t you know it, life has provided me with a case study – myself. Last week [...]
Read Moree-patient stories, patient networks, pts as teachers, social media
Helen Palmquist: Supporting my cyber-sisters with words of hope
Guest blogger Helen Palmquist is a member of the Ovarian Cancer National Alliance support community, hosted by Inspire. She lives in suburban Chicago. I was diagnosed with ovarian cancer at age 41, in the pre-Web days of 1987. From my hospital bed after my first surgery, I phoned two people whom I had heard were [...]
Read Moree-patient stories, patient networks, Why I joined
Ileana Balcu: The marriage of HIT with quality, transparency and cooperation between patients and doctors
In the latest post in our Why I Joined SPM series, guest blogger Ileana Balcu shares her story of pain, searching, and finally healing, once she discovered the e-patient community. Follow her on Twitter at @yogileana. It was 2002 and I was happily pregnant. I thought I’d read all I could about pregnancy. But scary [...]
Read Moree-pts resources, patient networks, positive patterns
ACOR kidney cancer community wins 25th anniversary “Maily” Listserv award
It’s fitting that our last post of the year should be about a patient community … winning an award! ACOR’s “KIDNEY-ONC” kidney cancer patient community was recently honored with the “Maily” Listserv Choice award in this, the 25th anniversary year of Listserv® technology. In announcing the award, the vendor’s site (Lsoft.com) described the KIDNEY-ONC list [...]
Read Moree-pts resources, patient networks, positive patterns, pt/doc co-care, trends & principles, Why PM
Libro Blanco de los e-Pacientes en Español
To read this post in English, click here. Hacía tiempo que teníamos en mente la posibilidad de llevar a cabo la traducción del Libro Blanco de los e-Pacientes al Español, ya que con más de 420 millones de hispanoparlantes en todo el planeta, nuestro idioma es ya la segunda lengua más hablada en el mundo, [...]
Read Moree-pts resources, patient networks, positive patterns, pt/doc co-care, trends & principles, Why PM
Announcing: the e-Patient White Paper, in Spanish
It’ s been a long time coming, but it’s here! From the English “e-Patients: How they can help us heal health care,” you can now click to download the Spanish e-Pacientes: cómo nos pueden ayudar a mejorar la salud. To read this post in Spanish, click here. From the editors of the Spanish edition, Elia Gabarrón and Luis Fernández [...]
Read Moreend of life, found on the net, general, JoPM, others' e-patient stories, patient networks, social media
The unexpected power of storytelling
The Journal of Participatory Medicine recently published a new commentary, “A Skydiver Jumps, and an Online Community Exults,” about the unexpected power of storytelling in a lung cancer support group. After sharing an uplifting story with her online group, Patricia Flowers is surprised to learn how it moved and inspired her fellow members. This article [...]
Read Morepatient networks, Why PM
Guest post: Overcoming “battle fatigue” in an online support community
Another post from the Inspire.com network of patient communities. This one’s from New Hampshire resident Linnea Duff, an active Inspire participant who has Stage IV NSCLC (non-small-cell lung cancer). She blogs at Life And Breath. It’s often been said that different people face cancer and the threat of death differently. Two years ago SPM co-founder [...]
Read Moree-patient stories, end of life, general, patient networks, pts as teachers, understanding statistics
Tami Boehmer: Hope versus statistics
Guest blogger Tami Boehmer shares a recent conversation with e-Patient Dave about the pitfalls of survival statistics and the power of hope. Tami’s blog, “From Incurable to Incredible,” is at www.miraclesurvivors.com. I recently had the honor of speaking with Dave deBronkart, widely known as “e-Patient Dave.” Dave is the leading spokesperson for the e-Patient movement [...]
Read Morepatient networks, pt/doc co-care
When Patients Band Together: Far From a Disgrace
When it comes to news sites, I love scanning readers’ comments as much as the original articles. Comments are an unfiltered feed, a window into public opinion (in other words, catnip for someone like me). One thread caught my eye recently. Ron Winslow wrote a very nice piece in the Wall Street Journal about how [...]
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