e-Patients Blog
The blog of the Society for Participatory Medicine. Want to be a contributor?
Proposed rule change will *reverse* data sharing requirements; Regina & Farzad call for “National Day of Action” to fight back
Friday evening I got a tweet from SPM member Sherry Reynolds about something that had just happened in Washington. Today it unfolded. (Don't miss her comment, too, about the history of this issue and her role in it.) Change can provoke upset. Technological change can...
“Lighting Goes to Ground”: Peter Elias responds to Paul Levy in JoPM
Perhaps it's time for an argument about how we're doing this. Many of us in the Society for Participatory Medicine have long noted that what we're up to here is nothing less than full-bore culture change. In my own speeches I often note that culture is the set of...
SPM survey in Times Square: “Americans believe their medical data should be shared with their providers”
National Survey Also Shows 87% Think Health Information Exchange Should be Free First paragraph updated next day In case you missed it last month, there was an unprecedented, huge moment in SPM's history - we collaborated in a national survey of Americans' views and...
Regina Holliday’s whooping cough story in PharmaTimes: “Treat us as partners”
SPM member/legend Regina Holliday, a powerful force for grass roots empowerment and creator of The Walking Gallery of Healthcare, got whooping cough (pertussis) this winter, despite having been vaccinated just a few years earlier. The UK magazine Pharma Times...
Accountable Care: Transparency of Fees Is Mandatory
Participatory medicine and healthcare system transparency warrior Cyndy Nayer put this up on her blog this week, and we're re-posting it here because it's a message that's got to spread. A personal account of a transaction that went very badly, and rules of Health...
Leveraging Technology to Improve Health
Providing apropriate health care is a challenge in remote areas of developing and developed nations, where skilled professional health personnel and facilities are limited. However, e-health, with tools to redesign care models around the common needs of discrete...
Partnering with Patients: From Theory to Practice
Patients have a unique expertise that is often overlooked. The day-to-day life experiences of a patient and the wisdom they gain as they navigate their healthcare journey are invaluable. In fact, that expertise is a key driver in helping to shape the future of...
Health Affairs: patient activation impact on cost + outcome
In a study report hitting the digital wires on Health Affairs at 4pm Eastern time today (March 2, 2015), a group of researchers are reporting the results of a longitudinal study of Patient Activation Measure (PAM) impact on cost and outcome metrics from a large study...
Mythbusting, “demanding patient” edition
We'd bet good money that anyone who identifies as an e-patient has been led to believe that their desire to participate actively in their medical care marks them as a "demanding patient." The perception of demanding patients is that they're behaving like spoiled divas...
NLM Director Donald Lindberg is retiring. Speak up: what’s next for the Library?
Dr. Donald Lindberg, long-time director of the National Library of Medicine, is surely the single most-quoted authority from "Doc Tom" Ferguson's e-Patient White Paper. In almost every speech I've given in the past five years I've used Doc Tom's quote of Dr. Lindberg...
OpenNotes in the BMJ: the message goes global, adoption is international
Our Society for Participatory Medicine is all about effective patient-clinician partnerships, and to us that simply requires patient access to all information about the case. As SPM co-founder Dr. Danny Sands often says in his speeches, "How can patients participate...
Big BMJ supplement on Patient Centred Care – with many SPM and MedX voices
This is a great week for SPM, for our colleagues at the Stanford Medicine X conference, and for everyone else who's been working for years to shift medicine's thinking about the role of the patient: Yesterday the BMJ (formerly British Medical Journal) released a big,...
