Patients as Teachers

Playing the Waiting Game While Living with a Rare Disease

by Eric Bersh | Mar 1, 2022 | 0 comments

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 | 4 comments

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 | 0 comments

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 | 0 comments

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 | 0 comments

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 | 0 comments

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 | 3 comments

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 | 0 comments

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 | 0 comments

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 | 2 comments

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...

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