by e-Patient Dave | Mar 16, 2023
Update 3/19: We’ve opened a CaringBridge page for Casey, where her support team will post updates. You can subscribe to get notifications and to leave words of support, memories, etc. Anyone can view; posting requires free registration. This news hit us worse...
by e-Patient Dave | Nov 30, 2022
This post is about a paper I co-authored in JMIR in August with Bertalan Meskó MD PhD, Patient Design: The Importance of Including Patients in Designing Health Care. It’s challenging and perhaps a bit confrontational to conventional healthcare, because it...
by John Novack | Oct 6, 2022
Editor’s note: In this excerpt from her latest book, Ducks in a Row, Canadian-based author, Sue Robins explains the power of storytelling for everybody invested in health care—patients and clinicians alike. A well-told story, Robins explains, has the ability to...
by Eric Bersh | Mar 1, 2022
In 2004, at age 17, I was diagnosed with an adult-onset muscle disease called limb-girdle muscular dystrophy type 2B (LGMD2B). My diagnostic journey began 10 months prior, the result of a routine blood test after a car accident which yielded concerning biomarker...
by John Novack | Dec 15, 2021
Pioneers of medical progress are lauded in published articles and by their professional peers. But it is often the patient advocates, particularly those who demanded better treatment, spearheaded clinical trial advances, and bravely took on institutions and standards...
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 e-Patient Dave | Nov 24, 2019
SPM member Brenda Denzler had Inflammatory Breast Cancer (IBC), which was followed by years of intractable symptoms that her doctors couldn’t diagnose – all their tests kept saying she was “fine.” “But I live with this body,” she...
by e-Patient Dave | Oct 10, 2018
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. 17 in Boston, attached to the prestigious Connected Health conference. Register here....
by John Novack | Sep 26, 2018
Here’s the latest in a 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. 17 in Boston, attached to the prestigious Connected Health conference. Register here....
by e-Patient Dave | Sep 25, 2018
Here’s the latest in a 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. 17 in Boston, attached to the prestigious Connected Health conference. Register here. Healthcare...
by John Novack | Sep 24, 2018
Here’s the latest in a series of interviews with outstanding speakers we’ve lined up for the Society for Participatory Medicine’s second annual conference on Oct. 17 in Boston. Register here. And see this blog’s #SPM2018 series for more about, or by, the speakers and...
by John Novack | Sep 17, 2018
Here’s the latest in a series of interviews with outstanding speakers we’ve lined up for the Society for Participatory Medicine’s second annual conference on Oct. 17 in Boston. Register here. Embracing participatory medicine has helped Gabe Howard @GabeHoward29 manage...
by e-Patient Dave | Sep 14, 2018
I joined the board of the Society for Participatory Medicine (sorry, I have to shorten it to SPM) about one year ago. I joined because I honestly think health care is f$#%#’ed up and I want to make a difference. We all agree about the problems, but my views on...
by John Novack | Sep 10, 2018
First in a series of interviews with outstanding speakers we’ve lined up for the Society for Participatory Medicine’s second annual conference on Oct. 17 in Boston. Register here. Doug Lindsay calls himself as Transformational Thought Leader, an apt...
by e-Patient Dave | Jul 26, 2018
A new article in the open access BMC journal Implementation Science reviewed 48 articles about involving patients in projects that redesigned small and large parts of healthcare delivery. Conclusion: higher levels of engaging patients in the work led to higher level...
by e-Patient Dave | Sep 22, 2017
This may be the best short talk ever about the importance of participatory medicine. SPM’s past president Sarah Krüg (@SaraKrug1) recently did a 10 minute TEDx Talk in Brussels. It’s one of those rare ones that’s pretty riveting. Watch it. Join us. Our Society for...
by e-Patient Dave | Jun 7, 2017
We in the Society for Participatory Medicine are in many stages of awakening to our potential as active participants in the health system. Some have a particular focus on a disease or a technology; many of us come to it through our own experience (good or bad) as a...
by e-Patient Dave | Apr 7, 2017
We’ve written often here about the BMJ’s leadership on not just listening to patients but looking at healthcare from the patient’s perspective. Their patient partnership campaign, launched in 2014, includes a patient advisory panel that works...
by Danny van Leeuwen | Mar 23, 2017
I’m an old hippie [left]. I’ve lived in many houses and on a farm (commune?) with other people. Regularly we heard, “I agreed to what? No I didn’t.” “Since when is that a rule?” I, and then my wife and I, developed skill in...
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...
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