by e-Patient Dave | Sep 17, 2011
Another post from the Inspire.com network of patient commuÂniÂties. This one’s from New Hampshire resident Linnea Duff, an active Inspire participant who has Stage IV NSCLC (non-small-cell lung cancer). She blogs at Life And Breath. It’s often been said...
by Kathleen O'Malley | Sep 15, 2011
E-Patient Dave’s post about the Green Button idea generated a lively and substantive discussion in the Comments section. The idea of making it easy for patients to anonymously share their data online for the benefit of research is apparently one whose time has...
by e-Patient Dave | Sep 10, 2011
I’ve long been surprised that Planetree.org is not better known by everyone who talks about patient-centered care, patient engagement, etc. I attended one of their webcasts in April and wrote about a great booklet they discussed. I’m taking the liberty of...
by Gilles Frydman | Sep 4, 2011
I have known Sharon Anderson for many years and watched her eAdvocacy evolve.  A nine year leiomyosarcoma (LMS — a very rare cancer) survivor, Sharon has tirelessly used her social work skills to help LMS patients directly while actively promoting an increase in...
by e-Patient Dave | Sep 2, 2011
Today I heard from a friend who’s had a tumor discovered. S/he decided to fire the current doctor, who would not return phone messages and was “intellectually lazy” – not interested in pursuing ideas my friend brought up that might require some...
by e-Patient Dave | Aug 31, 2011
Guest post by SPM member Gangadhar Sulkunte. We posted his family’s e-patient story two years ago. The FDA’s Risk Communication Advisory Committee has published a PDF book called  “Communicating Risks and Benefits: An Evidence-Based User’s...
by e-Patient Dave | Aug 30, 2011
SPM member John Novack of Inspire.com sent this, about a project some members of an Inspire patient group created. They got the Mayo Clinic to explore whether a clinical trial can be done in a very unconventional setting: across the internet, instead of within one...
by e-Patient Dave | Aug 9, 2011
I’m at the second face-to-face meeting of the Consumer Consortium of the National eHealth Collaborative, a gathering of 180+ stakeholder groups working on the consumer engagement aspect of health IT. Everyone talks about PHRs as Personal Health Records, but one...
by e-Patient Dave | Aug 5, 2011
I’m about to board a plane at 5 a.m. so this is a quick preliminary note. One of the key skills an engaged, informed patient needs is how to find good quality care. Today USA Today reports that Medicare has just released information that I think we’ve had...
by Susannah Fox | Aug 1, 2011
Update: My notes are now online: Mind the Gap: Peer-to-peer HealthCare. The newest material is in the section entitled, “Getting Past the Early-Adopter Stage” — roadblocks, opportunities, and beacons for change (patient leaders, clinician leaders,...
by John M. Grohol, Psy.D. | Jul 24, 2011
I’m all for citizen journalism, and can even stand the content mills like LiveStrong, who have pimped out their name and brand in order to make a quick buck. But I draw the line with bad reporting and worse, biased representation of the data to prove a point....
by e-Patient Dave | Jul 22, 2011
This has nothing to do with healthcare, but it’s the most priceless example I’ve seen in a long time of Not Customer-Oriented Thinking, and perhaps Scary Workflow, both of which do apply to healthcare sometimes. As a Boston-based traveler, I have United...
by e-Patient Dave | Jul 21, 2011
Update: The idea has advanced in the comments – be sure to read them. There’s a Twitter discussion bubbling right now about a “Green Button” idea that was proposed informally last year at HealthCamp SFBay. Here’s a link to our comments...
by Kathleen O'Malley | Jul 19, 2011
SPM member John Novack, of the Inspire.com patient communities, submitted this guest post by Wendy Station about another online community — another great example of patients engaging in their care, supplementing the value they get from their medical...
by Susannah Fox | Jul 11, 2011
I am as interested in the negative effects of technology as I am in the positive, so I recently dove into a book by Seth Mnookin: The Panic Virus: A True Story of Medicine, Science, and Fear, which focuses on vaccines. His summary of the Information Age challenge...
by Susannah Fox | Jul 6, 2011
Here’s how tech guru Tim O’Reilly describes his work: So often, signs of the future are all around us, but it isn’t until much later that most of the world realizes their significance. Meanwhile, the innovators who are busy inventing that future live...
by e-Patient Dave | Jul 2, 2011
For those who like to look deep into the structure and causes of change, something fun is in process: an interview with Vint Cerf, with an explicit e-patient component. Cerf is acknowledged as one of the fathers of the internet. In my lifetime few people, if any, have...
by Susannah Fox | Jul 1, 2011
I admit it: I’m not a gamer. But I am competitive. Plus I love micro-fitness challenges and I’ve read (and believe the lessons of) The Decision Tree. So when Jen McCabe described Health Month, I was intrigued. It’s a game in which you choose the...
by John M. Grohol, Psy.D. | Jun 25, 2011
Like so many attempts before it — drkoop.com and RevolutionHealth.com to name just two — Google has found that implementing personal health records in a meaningful way is really, really hard. So hard, in fact, that it has given up and is shuttering its...
by e-Patient Dave | Jun 24, 2011
On this blog we try to understand and explain how the world has changed and is changing, with the goal of helping everyone – policy people, patients, clinicians, administrators, businesses – optimize for the world as it changes. Nowhere is that more...
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