Patients as Teachers Archives

Mighty Casey is entering hospice

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...

Patient Design: The Importance of Including Patients in Designing Health Care

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...

Storytelling: Where Compassion is Born

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...

Playing the Waiting Game While Living with a Rare Disease

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...

Linnea Olson: An Appreciation of a Giant

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...

Following in the Footsteps of Others to become an Empowered Patient Advocate

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...

“My Data and Me”: Brenda Denzler’s amazing story at #FHIRDevDays

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...

#SPM2018 speaker preview – Jason Bobe: “The future of medicine begins with the patient”

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....

#SPM2018 speaker Kristina Sheridan: Leveraging the data of patients’ stories

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....

#SPM2018 speaker @RasuShrestha: “Let’s move from paternalism to where the patient is a true participant”

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...

The next evolutionary step for SPM: a manifesto

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...

@PsychCentral Show’s Gabe Howard to co-host live podcast episode at #SPM2018

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...

Burt Rosen on the #SPM2018 conference: “Fix this f$%(*$&’ing mess we call health care!”

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...

#SPM2018 speaker Doug Lindsay: Driven by experience to advocate passionately for participatory medicine

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...

Study: Engaging patients in co-design works. Join us at our #SPM2018 conference Oct 17!

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...

Sarah Krüg’s TedX: “The Patient Doctor Tango”

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...

From the UK: “Habits of an Improver”

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...

“Words that annoy, phrases that grate”: BMJ Patient Panel post & tweetchat

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...

Service Agreements Among Friends and Colleagues

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...

Cleo Kordomenos: How My Opinion on Online Health Communities Changed

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...

SPM Blog