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#SPM2018 speaker @RasuShrestha: “Let’s move from paternalism to where the...
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...
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#SPM2018 Hot Topic: Can a Market for Health Data also Protect Patients’...
Here’s the latest in a series of posts by and about the outstanding topics we’ve lined up for the Society for Participatory Medicine’s second annual conference on Oct. 17 in Boston, attached to the...
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#SPM2018 speakers @_AngelaKennedy and daughter Grace: “Personal Health...
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...
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At #SPM2018, Ivan Handler (with @MightyCasey) Wants to Put the Care Back in...
Here’s the last 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...
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Pay people for their data – yes, or no?
SPM members Casey Quinlan (yes, yours truly) and Jan Oldenburg were part of a trinity of folks debating the idea of paying people for the data they contribute to the digital economy, in healthcare and...
View ArticleSo, about this “big data” thing …
On Facebook last Friday our member Carla Berg Nelson posted briefly about a new Psychology Today blog post, Data: the New Window into Humanity, by John Nosta. She tagged a number of other members (and...
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It’s the 10th anniversary of trying to get our health data: “I’m putting my...
It’s a big anniversary, this spring – this week, even. Ten years ago the whole issue of personal health data exploded into the headlines. It was about something I wrote here, not having a clue it was...
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Manage your health data, or trust blindly? Setting the stage for a data...
What if you hired a financial manager to handle your money – a trusted professional, like that guy above – then discovered they didn’t know what they were doing, and your records were a mess? How would...
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FHIR #DevDays announces Patient Innovator Track finalists: two companies, two...
This is a cross-post from my personal blog. The organizers of the FHIR #DevDays conference next month have announced the four finalists who will come to Amsterdam to present their ideas to a panel of...
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“My Data and Me”: Brenda Denzler’s amazing story at #FHIRDevDays
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...
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Patient/caregiver letter supporting proposed HHS rules on improving flow of...
Many people are asking if they can add their stories or their signatures. Please do so in comments! We’ll copy signatures into the body of the post as time allows. We, the undersigned, are patients,...
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Epic, Using Scare Tactics & Paternalism, Opposes ONC Rule
Epic is a widely used Electronic Health Record (EHR) system by thousands of hospitals across the United States. There’s a very good chance that your physician uses Epic software in their everyday...
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Long-awaited US rules on data access and information blocking are out
The long-awaited rules on data access have been published this morning from two key parts of the US Department of Health & Human Services. I’ll expand this post with more links as we digest what’s...
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Health informatics and why participatory healthcare is key to its future
Prologue from Dr. Sands: I trained in clinical informatics because of my belief that we needed to better empower healthcare professionals with information technology so they could take better care of...
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NEJM: OpenNotes/”OurNotes” releases its innovative pre-visit questionnaire...
This morning the New England Journal of Medicine released the latest publication about OpenNotes. The news: an innovative pre-visit form created for the “OurNotes” study has been released before the...
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OpenNotes site upgrades its literature search, to help authors and educators...
As regular readers know, our Society for Participatory Medicine has always been a strong advocate for the OpenNotes movement as a key enabler of patient power. As co-founder Dr. Danny Sands often says...
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Power of People. Pause and Trust. Lynne Becker
Designing clinical trials for and with people with Traumatic Brain Injury. Lynne Becker looking forward over time, not backward. Building a business. Proem You know the old story of the researcher...
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Collaborative Notes, Engaged Partners, Fewer Errors
Patients, care partners & clinicians can reduce record errors with collaborative notes. Dr. Peter Elias shares his note-writing with collaborative partners. Proem Expecting an error-free medical...
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Mighty Casey is entering hospice
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;...
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ChatGPT summarized my OpenNotes. It’s so much more usable!
I had an idea last week and just tried it. ChatGPT is awesome at summarizing things, but could it handle medical notes? They’re complicated. It worked! I took the visit notes from my last doctor...
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