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Some people just won’t take death for an answer.

We often talk here about empowered patients’ struggles to get – or even create – the care they need. Usually we’re talking about it in a medical sense. But as far too many people know, sometimes there are other obstacles. Laurie Todd is, to me,...

My Father’s Medical Record Fiasco

Guest post by Alan Viars (@Aviars), CEO of Videntity Systems, Inc. This past year my father required open heart surgery. This is a short article about the hurdles we (his family) encountered along the way. I’ve changed the names, because it is not my intention to...

Regina Holliday’s mural is in the BMJ

We’ve written here before about Regina Holliday (follow her blog), whose husband Fred died June 17. In today’s edition of the British Medical Journal, her mural is the picture of the week: Ted Eytan MD took the picture and posted it on Flickr. Today he...

A Participatory Medicine Story

The nascent field of Participatory Medicine is currently in the “debating and defining” stage.    It has been tentatively defined by the steering group of the Journal of Participatory Medicine as: …a cooperative model of health care that encourages...

e-Patients Discover Unrecognized Side Effects

Detecting drug complications is too important to leave to doctors or FDA administrators. We have learned the hard way that randomized controlled trials (RCTs) don’t detect all the adverse drug effects that may be important. Far too often, serious side effects...

Imagine someone had been managing your data: next anecdote

Next anecdote about poorly managed medical data: Amen! Just had an incident where my SS# was attached to a different patient’s name in the electronic med record. And the health facility will not tell me where the error occured, or how long someone else’s name was...

“Moms, do not give up.”

This item from ABC News nearly brought tears to my eyes. The first signs that something was wrong with 11-year-old Connor Teare came when he was a toddler. His muscles were growing increasingly rigid and becoming more difficult to move. He went from leg braces to a...

Stress: the New Normal for Cancer Patients?

Deborah Bell is actively involved in cancer advocacy and manages several online communities for cancer patients, their families, and their friends, having been an ACOR listowner for 11 years, and a listmember for 13. She contributed the following essay: I know a...

An e-Patient is Born: Elyse Chapman’s story

One of the key learnings of my first year as a student of the e-patient movement, studying how healthcare is evolving, is this: People get radicalized when it gets personal. This is one such story: it’s the e-patient awakening of a long-time personal friend of...

A wonderful story of participatory medicine

Amy Marcus, in today’s WSJ,  wrote a powerful article about a mom moving medical mountains to help her twin daughters survive a rare and deadly disease. Entitled “A Mom Brokers Treatment for Her Twins’ Fatal Illness. Bucking Scientific Convention,...

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