e-patient stories

 

e-patient stories, found on the net, key people

From Regina Holliday’s blog: on Patient Advocacy

Beautiful and comprehensive blog post from Regina Holliday about different types of patient advocates, the evolution of the patient as speaker, consumer, policy-igniter and her own work. http://reginaholliday.blogspot.com/2016/09/regina-holliday-on-patient-advocacy.html?spref=fb A short quote, but please read the whole article, it was so difficult to pick just a paragraph: It is very easy to push aside someone’s story, […]

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e-patient stories, key people, positive patterns, research issues

e-Patients as journal authors: Sean Ahrens self-experiment published in a major journal

We’d love to start a list of other patient-authored papers and posters – let us know in the comments! We know of Dana M. Lewis & Scott Leibrand’s poster about #OpenAPS in June – who else?? We’ve written before about e-patient Sean Ahrens and the Crohnology community he started.  In my view the most important […]

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e-patient stories, general, how I became an e-patient, patient networks, positive patterns, pts as teachers, social media

Cleo Kordomenos: How My Opinion on Online Health Communities Changed

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 with a concentration in Health Communication and a […]

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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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