ethics, PM Tech, policy issues, positive patterns, reforming hc, trends & principles

Key legal victory moves medical device patients one small step closer to full access to their data

For whose benefit does the healthcare industry exist? For the investors, or the people whose needs are the reason for the industry? Facebook last night was celebrating a small but significant legal victory this week for the “gimme my DaM data” movement (“Data about Me”), of whom super-e-patient Hugo Campos is a well known example. […]

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ethics, policy issues, reforming hc

TMIT, Dr. Chuck Denham, and Patient Safety’s First Scandal?

For e-patients and others who list themselves on Texas Medical Institute of Technology‘s SpeakerLink, this very meaty post by Society of Hospital Medicine founder and world-renowned leader of the hospitalist movement Dr. Bob Wachter is required reading. After which, you will likely do some required thinking. A short capture of the post’s purpose: Dr. Chuck Denham, […]

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end of life, ethics, understanding statistics

A neurosurgeon confronts his mortality: lessons in statistics and living while you can

Here’s a new “must read” for people with a grim prognosis, submitted by Twitter friend @Scanman (Vijay Sadasivam), from the Tamil region of India: How Long Have I Got Left?, by Stanford neurosurgeon Paul Kalanithi. Seven years ago that was my situation. This was the week that a biopsy confirmed that the blobs in my lungs were metastasized kidney […]

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e-patient stories, end of life, ethics, how I became an e-patient, key people, patient networks, pts as teachers, social media

e-Patient Lisa Adams

In this guest blog post, member Carly Medosch describes Lisa Adams whom she knows from social media. Lisa Adams was diagnosed with stage 4 breast cancer and documented her journey in social media. In another post below we describe the media firestorm that was caused by two articles that criticized her efforts. A hashtag was […]

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ethics, social media

Husband-wife pieces in NY Times and The Guardian break ethics and lack a clue (re @AdamsLisa)

Update 9:20 pm ET: see important additions at the subhead below. When I wrote this today I didn’t have time to dig for excellent links like those. Thanks to Susannah Fox’s Twitter feed. One of the best social media patient figures I met, long ago, was @AdamsLisa – Lisa Bonchek Adams of There’s a firestorm […]

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ethics, pt/doc co-care, shared decision making, trends & principles

A Powerful Union – Relationships within Health Team

The relationship between health team members, especially people and their clinicians and caregivers, frequently arises as a topic of this blog. Let me share with you one of the values of Advocates.  I work for Advocates as VP of Quality.  We express our values in Advocates Way. Advocates provides person-centered, community-based support services to individuals and […]

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ethics, general, policy issues, positive patterns, pts as teachers, research issues, Why PM

Partnering with patients – about patient centered RESEARCH METHODS

This is a long post, but it strikes deep to the core of the transformation underway in medicine, even in the science that drives medicine. It appears the world is starting to change, in a very good way. We’ve often written about the changing culture of medicine, as the professions begin to understand the value […]

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ethics, research issues, trends & principles, understanding statistics

Fact checking at Medicine X

(A cross-post from I had the great honor of being part of the first Medicine X conference at Stanford University last weekend. I presented a sneak preview of new survey results collected by the Pew Internet Project and the California HealthCare Foundation. Overall, the conference was magical, as I wrote in a previous post. […]

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ethics, found on the net, JoPM

New editorial series in JoPM asks the tough questions

A new Journal of Participatory Medicine tradition has just launched. Our monthly editorial series will tackle the toughest questions of participatory medicine, from both the patient and the provider side. The first installment, by Joe and Terry Graedon, is titled “Participatory Medicine: Must You Be Rich to Participate?” — read on at And by […]

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ethics, found on the net, JoPM

JoPM: A Doctor’s Remedy for Long Waits

A new article in the Journal of Participatory Medicine tackles the problem of long wait times at doctors’ offices, a leading cause of patient dissatisfaction. “Waiting Room Remedy: Doctor Pays for Delays (The Doctor’s Perspective)” by Pamela Wible, MD offers a solution that shows respect for patients, at the same time explaining why many of […]

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