by Eric Bersh | Sep 19, 2022
Active surveillance (AS) for low-risk to intermediate-risk prostate cancer has been “an overnight success” that took 30 years to move from academia to mainstream practices. Since 2014, AS — close monitoring of low-risk prostate cancer with PSA blood testing,...
by Carly Flumer | Sep 13, 2021
I didn’t want to tell anyone about my diagnosis. I thought my family and a few close friends were enough. But I got brave one day four years ago and posted about it on social media. The outpouring of support was incredible. I thought, if I’m receiving this much...
by Tamika Felder | Jun 16, 2021
Stories have the power to punch you in the gut. Of course I mean figuratively, but in many real ways, literally too. I literally feel pain–coupled with inspiration–when fellow cancer survivors share their experiences, struggles and fears. Stories have the...
by Sarah Krüg | Mar 12, 2019
“Vague but exciting…,” was the response Sir Tim Berners-Lee received when he submitted a proposal for an information management system (aka the world wide web) to his supervisor in March of 1989. Three decades later, we have hit a key milestone, and approximately half...
by e-Patient Dave | Oct 9, 2018
[Update: this post has been picked up and cross-posted on the widely read The Health Care Blog] Here’s the latest in our series of posts by and about the outstanding speakers we’ve lined up for the Society for Participatory Medicine’s second annual conference on Oct....
by e-Patient Dave | Jul 15, 2018
TONIGHT: 9 pm Eastern time. #BCSM Twitter chat on the latest Facebook privacy issue. This time the data leaked is from a patient group. FB says it’s a nothingburger. What do you think? Facebook has a record of privacy leaks. The poster shown here (click to...
by Danny van Leeuwen | May 27, 2018
Thanks to support from SPM Travel Fund I attended Regina Holliday’s Cinderblocks Conference in Grantsville, MD. Still pound-for-pound the best conference going. Several days of local and national presentations about health, public health, and advocacy. Small,...
by e-Patient Dave | Apr 12, 2018
As a social movement works its way through a culture, sometimes we discover surprising disconnects or parallels. Dr. Danny Sands and I were recently interviewed for the Psych Central podcast, and in the process, host Gabe Howard said something exactly like that....
by Ileana Balcu | Aug 1, 2016
This is a guest blog post by Cleo Kordomenos. Cleo was my student in the New Media and Health Communication class I taught at TCNJ. More about the class is shared in this post. Cleo Kordomenos is a Senior Communication Studies student at The College of New Jersey...
by Ileana Balcu | Jul 30, 2016
In the Spring of 2016 I had the opportunity to teach the course New Media and Health Communication for an undergraduate class at The College of New Jersey. The class, designed by Dr. Yifeng Hu, already included an introduction to participatory medicine and patient...
by e-Patient Dave | Mar 30, 2016
Somehow I’d never heard of National Doctors’ Day, but apparently it started 25 years ago, in 1991. As one of many SPM members whose life was saved (or is being helped) by excellent physicians, I’m in! And I want to shine a broader spotlight on the...
by Ileana Balcu | Sep 8, 2015
To all in the Washington/Baltimore/northern Virginia area (and elsewhere if you care to travel!): The patient committee of the Society for Improved Diagnosis in Medicine would like to invite you to our second annual Patient Summit on Diagnosis. The summit is part of...
by Ileana Balcu | May 11, 2015
This blog welcomes guest posts from SPM members on relevant topics. This is a blog post by Annette McKinnon, an e-patient in Canada. Annette is an enthusiastic advocate for patient inclusion in research and healthcare decision making. She has had rheumatoid...
by e-Patient Dave | Feb 11, 2015
This is a great week for SPM, for our colleagues at the Stanford Medicine X conference, and for everyone else who’s been working for years to shift medicine’s thinking about the role of the patient: Yesterday the BMJ (formerly British Medical Journal)...
by Ileana Balcu | Nov 4, 2014
Society for Participatory Medicine member Carly Medosch and her mother Mary Jo have run the Crohn’s and Colitis Foundation of America’s Fredericksburg, VA support group for the past 6 years. Crohn’s disease and ulcerative colitis are two forms of...
by e-Patient Dave | Sep 16, 2014
On my own site I have a (loose, rough, poorly managed) list of patient communities, gathered ad hoc, as time allows. Today I posted a new contribution of a different sort – the experiences of a prostate cancer patient I met at a speaking event last week in...
by Susannah Fox | Jul 23, 2014
At 9am on Sunday, Sept. 7, 2014, Stanford Medicine X will host a discussion led by Pamela Ressler, Colleen Young, Meredith Gould and me about the power and pitfalls of people sharing their health experiences online. We are “flipping” the panel by sharing...
by Marge Benham-Hutchins | May 21, 2014
An international conference addressing information technology and communication in health (ITCH) will be held February 26 – March 1, 2015 in Victoria, British Columbia, Canada. Professor Stephen Hawking’s statement, “we learned to talk, we learned to listen, we...
by Ileana Balcu | Apr 2, 2014
Our Member Beth Nash MD recommends this article: This is an incredible article in BMJ Quality & Safety about how patients, families and professionals can (and need to) work together to improve care (in this case, the care of cystic fibrosis patients). Here’s...
by Susannah Fox | Feb 28, 2014
A guest post by Wendy White of Siren Interactive in honor of Rare Disease Day: Can empowered patients drive change in healthcare? Take a look at the progress that has been made in the rare disease community over the last 30 years—much of it spearheaded by patients and...
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