by e-Patient Dave | Mar 9, 2020
Six weeks ago we hosted the Patient/caregiver letter supporting proposed HHS rules on improving flow of our data. It’s a crowdsourced collection of stories of how patients suffered, were harmed, incurred costs or delays because their own health data wasn’t...
by e-Patient Dave | Feb 28, 2020
Now this is patient-centered care. This may be the most wonderful participatory innovation I’ve seen since OpenNotes in 2012. This one’s completely different: OpenNotes is about patient access to the medical record, but this one invites patients to see...
by John M. Grohol, Psy.D. | Jan 28, 2020
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 practice. Among many other tasks, Epic’s software helps...
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...
by e-Patient Dave | Oct 14, 2019
Hello, SPM members! – And honored guests, perhaps soon to be members. Join here. :-) Over the past few weeks, I have received quite a few inquiries about livestreaming opportunities for our conference in Boston, Tuesday, October 15. If you can’t attend...
by Narinder Singh | Jul 19, 2019
This is Part 4 of a four part series, introduced Monday, based on my family’s experience with our mother’s unexpected and dramatic ICU stay and bilateral lung transplant. [ Go to Part 1 | Part 2 | Part 3 ] [Download the Complete Family’s Guide as a PDF]...
by Narinder Singh | Jul 18, 2019
This is Part 3 of a four part series, introduced Monday, based on my family’s experience with our mother’s unexpected and dramatic ICU stay and bilateral lung transplant. [Go to Part 1 | Part 2 ] [Download the Complete Family’s Guide as a PDF] If...
by Narinder Singh | Jul 17, 2019
This is Part 2 of a four part series, introduced Monday, based on my family’s experience with our mother’s unexpected and dramatic ICU stay and bilateral lung transplant. [Go to Part 1]. [Download the Complete Family’s Guide as a PDF] After the...
by Narinder Singh | Jul 16, 2019
This is Part 1 of a four part series, introduced yesterday, based on my family’s experience with our mother’s unexpected and dramatic ICU stay and bilateral lung transplant. [Download the Complete Family’s Guide as a PDF] Even the air in the waiting...
by e-Patient Dave | Jun 1, 2019
On June 4, 1919, Congress passed the 19th Amendment, giving women equal voting rights. (It was ratified by ¾ of the states, just in time for the 1920 elections.) Activists for patient power (and partnership) have often pointed to parallels of our movement with women...
by Sarah Krüg | Mar 12, 2019
“Vague but exciting…,” was the response Sir Tim Berners-Lee received when he submitted a proposal for an information management system (aka the world wide web) to his supervisor in March of 1989. Three decades later, we have hit a key milestone, and approximately half...
by e-Patient Dave | Feb 21, 2019
The famous TED Talks site TED.com is the holy grail of many evangelists. Aside from the extraordinary visibility it gives your message, and aside from the validation of your message (the site’s tagline is “Ideas worth spreading”), it means...
by e-Patient Dave | Dec 5, 2018
In Chicago, SPM members have been getting together for regular meetups. It’s been fun and exciting, and lots of us think it would be great to offer the idea to other areas. Here’s how we started and how we do it – take it on and make it your own! This time...
by Danny van Leeuwen | Nov 11, 2018
CMS (Center for Medicare and Medicaid)’s work on Value-Based Measures matters for patients and caregivers because we seek affordable, accessible, equitable, and effective medical care. Or in English: Transparent cost within my means, in a location I can reach,...
by Casey Quinlan | Oct 20, 2018
This will be the third, and last, in my short series on attending the Cochrane Colloquium in Edinburgh in September of this year. In the first post, I talked about what that conference was like; in the second, I shared an overview of Cochrane as a global movement to...
by Casey Quinlan | Oct 13, 2018
If you’ve been paying attention, you know that yours truly got the chance to attend the annual Cochrane Colloquium in Edinburgh in September this year, thanks to a travel stipend from SPM, a #PatientsIncluded bursary from Cochrane UK, the hosts of the 2018...
by e-Patient Dave | Sep 17, 2018
For updates, follow Casey’s tweets on the #CochraneForAll hashtag – tweets by her and tweets tagging her. Casey will be a speaker at #SPM2018 on Oct 17, in a session with Ivan Handler of the Insightamation blog – “Thoughts and provocations on...
by Danny van Leeuwen | Jun 10, 2018
SPM advocates vociferously for patient ownership of their own data. Success would be revolutionary. But revolutions do not suddenly appear. They result from persistent long-term effort, strategy, and tactics. Key milestones often only appear in hindsight. The...
by e-Patient Dave | Apr 13, 2018
Longtime SPM member Danny van Leeuwen (@HealthHats) is seeking nomination and support as a “patient/caregiver stakeholder” seat on the Board of Governors of PCORI, the Patient-Centered Outcomes Research Institute, about which we’ve blogged often...
by Danny van Leeuwen | Mar 28, 2018
Introduction SPM member, Danny van Leeuwen, Health Hats, introduces a new blog sponsored by the Patient-Centered Clinical Decision Support-Learning Network: Patient Expertise: Sharing and informing choices to connect research and clinical experience. Patient expertise...
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