e-patient stories

 

e-patient stories, key people, Patient Conference Participation, PM Tech, policy issues, positive patterns, pt/doc co-care, pts as teachers, reforming hc, trends & principles

#OpenAPS is bearing big fruit, part 2: Quantified Self presentation in San Diego

A truly significant moment in the history of medicine happened last Wednesday. I say that after attending almost 500 conferences and policy meetings in the past seven years, and I don’t say it lightly. Something many people think is impossible was presented live on stage: patients, informed and empowered by access to their data and access to tools, […]

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e-patient stories, key people, PM Tech, positive patterns, pts as teachers, trends & principles

#OpenAPS is bearing big fruit, part 1: Dana Lewis’s speech at O’Reilly’s OSCON

For some reason we haven’t written much about this here – our only post is from SPM Past President Nick Dawson 15 months ago – but this is such a big deal. Here’s an 11 minute introductory video on this – I won’t say more, I’ll just ask you to click and watch this. The speaker is […]

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e-patient stories, social media

Patient solves difficult diagnosis using … an online image sharing service??

The times, they are a-changin’: medicine is realizing there can be gold found on the internet, amid all the garbage that’s also there. Items: In 2014 a European government started buying Google Ads telling patients “Don’t Google it, check a reliable source.” Why is that an either-or?? Smart e-patients do both! This is a good use of taxpayer […]

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e-patient stories, positive patterns, pts as teachers

Sara Riggare: “The new kind of patients challenge healthcare”

SPM member Sara Riggare is a PhD student at Karolinska Institutet in Stockholm and a member of the BMJ’s Patient Advisory Panel. She has Parkinson Disease, and is highly proactive in dealing with it. One thing some Parkinson patients do is non-contact boxing, e.g. the Rock Steady program, and Sara has often posted pictures and videos on Facebook […]

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e-patient stories, how I became an e-patient, Why I joined

How I became an e-patient: through practice, with coaching (using Lean on the patient side)

The next in our series of “How I became an e-patient” posts. Tyson Ortiz joined a few months ago, having been introduced to us by fellow Lean practitioner Mark Graban. His story weaves together two concurrent threads: learning about a new aspect of Lean, and the arrival in his life of an urgent need for […]

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e-patient stories, pts as teachers, research issues

Astounding #RareDisease e-patient story: Jill Viles, via @SusannahFox tweets

Longtime readers of this blog know that for years Susannah Fox was its heart and soul. She was a devoted friend of “Doc Tom” Ferguson, creator of the e-patient concept in the 1990s, and for years at Pew Research she was the dependable guru of Pew’s health research. (For a summary of her work see […]

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e-patient stories, end of life, found on the net, medical records, pt/doc co-care, pts as teachers

Forbes article featuring Carol Gunn: One Doctor’s Quest To End The Plague Of Screwed-Up Medical Diagnoses

Carol Gunn, an SPM physician member, was featured in a Forbes article about her sister’s misdiagnosis, and her mission after her sister’s death. Carol’s tips for patients to avoid being victims of diagnostic mistakes: Tip #1: Get a second opinion that’s completely independent. Although this may seem obvious, many patients make the mistake of seeking out second […]

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e-patient stories, e-pts resources, key people, policy issues, pt/doc co-care, shared decision making, trends & principles

On Making Patient Reviews of Physicians More Useful

I recently hosted a Google Hangout on Air entitled Patient Reviews of Physicians: The Wisdom of the Crowd? (presented by The Harlow Group LLC in association with The Society for Participatory Medicine). I spoke with Niam Yaraghi (Center for Technology Innovation, The Brookings Institution) and Casey Quinlan (Mighty Casey Media) following their interesting back-and-forth online […]

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e-patient stories, e-pts resources, hc's problem list, key people, pts as teachers, social media

Guest post by Duncan Cross: I Sent This Letter To A Doctor Who Pissed Me Off

Ordinarily we limit guest posts to current members of SPM, but this is an extraordinary case. Duncan Cross’s post illustrates so many aspects of how empowered, engaged, activated patients view their lives, and how important it is to have an effective partnerships with their medical professionals. This is exemplary – except for the physician’s rejection […]

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e-patient stories, e-pts resources, general, key people, patient networks, pt/doc co-care, pts as teachers

Guest post by Annette McKinnon: Power Equality: Why Is My Silo Two Miles Away?

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 arthritisfor the past 30 years, and has a background in market research. She attended […]

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