Archive for May, 2010

e-Patient Judy Feder’s time runs out

May 26, 2010 · Filed Under Why PM, e-patient stories, patient networks, pt/doc co-care, pts as teachers, research issues · 7 Comments

As many of you know, a hard part of being in the world of cancer fighters is that sometimes we lose one.

I’m sad to report the passing on April 23 of Judy Feder, who shared her powerful e-patient story here just a year ago. Please re-read how, through her e-patient community (BCMets), she learned of a blood test that gained her eligibility for treatment with Herceptin, with magnificent results. First diagnosed eight years earlier, she ended her post with this status:

My enzyme and tumor marker levels have declined dramatically, as has my swollen and painful liver. I’m almost off of the pain meds and about delirious with joy. When my onc did a physical exam two weeks ago, she burst into tears. Not only am I alive and healing because of the wisdom of my fellow patients on BCmets, but I’ve opened up a new avenue for other women with BC mets in my doctor’s practice (and, with e-patient power, well beyond, I hope).

Gov 2.0 Expo: Health Geek Guide

May 24, 2010 · Filed Under found on the net · 22 Comments

The cross-disciplinary smorgasbord that is Gov 2.0 Expo will be held this week in DC. The agenda is packed with nerdy temptations (danah boyd! Anil Dash! Tim Berners-Lee!) but here are my can’t-miss sessions. Read more

It Takes Guts To Be A Neuroendocrine Patient: A Story of Participatory Medicine

May 24, 2010 · Filed Under general · 16 Comments

It may be time to mention again the definition of Participatory Medicine:

Participatory Medicine is a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.

The following guest post is a powerful demonstration that these are not empty words. Its author, Bill Claxton, is one of the newest ACOR list managers, helping to make sure the CARCINOID list provides the necessary help to the 950 members of that community, each one dealing with a rare cancer. I have never met him (but I surely hopes this will be rectified soon!) but have been impressed with his general understanding of technology issues. Little did I know! This post, based on earlier posts Bill sent to the ACOR group is full of medical jargon, requiring its own mini-dictionary and a couple of paragraph to explain this rare type of cancer. But it corresponds to the kind of conversations you can find in communities where expert patients share their wisdom. Here is the story of a remarkable man willing to travel wherever the optimal care is it will also take you around the world in the next few minutes.

Bill Claxton is an expert in internet video. He is Technical Director and Founder of the company Iterate Pte Ltd in Singapore. An expat from California, he has spent more than 20 years in Asia. In 2004 he was diagnosed with a mid-gut neuroendocrine tumor (NET) called carcinoid and has spent the past 6 years learning about this disease and sharing his knowledge with others. He has produced video recordings of every major North American medical conference dealing with neuroendocrine tumors, and webcasts these to audiences throughout the world. He also co-founded the Carcinoid & Neuroendocrine Tumor Society of Singapore, Asia’s first patient advocacy group focused on this disease.

Donna Cryer’s “I am an e-patient” story: e-patient advocate to the FDA

May 22, 2010 · Filed Under Why PM, e-patient stories, others' e-patient stories, policy issues, pts as teachers, reforming hc, trends & principles · 10 Comments

Meet Donna Cryer – another person who was an e-patient before she ever heard the word. (Weren’t we all?) As with Diane Engelman’s “mama lion” story this week, we connected with Donna through the internet.

I heard her speak last month at the National Library of Medicine’s e-Patient Conference. (Yes, they had an e-patient conference!) She’s a terrific speaker – and wait till you see what she’s created as her e-patient activism. (I took the liberty of boldfacing a couple of items.)

Everyone comes to their “e-patientism” through a unique and personal pathway. As a 1950’s tv show once opened “There are 8 million stories in the naked city. This is just one.”

My e-patient story starts with another icon of classic television, Perry Mason. Perry Mason inspired me to want to become an intrepid problem solver, truth seeker, and advocate. That mission stayed with me through college at Harvard and law school at Georgetown. I was a child welfare attorney and interned at the U.S. Department of Justice in the Criminal Division, Child Exploitation & Obscenity Section, specializing in applying law to the online environment, helping to capture online pedophiles.

However, I had a liver transplant due to autoimmune conditions between first and second years of law school, an experience that forever changed my perspective and path. Read more

A New Conversation About Health Privacy: Who’s In?

May 21, 2010 · Filed Under patient networks, policy issues · 48 Comments

Facebook has sparked a new debate about privacy and I think it’s time to bring it to health care. Read more

Big, deep Time article on “oversharing” & privacy

May 20, 2010 · Filed Under found on the net · Comment

@ej_butler (Brisbane’s Ed Butler) pointed out an extended online version of ”In Praise of Oversharing” from Time, May 31. Thoughty and nuanced, with a healthcare spin.

“If fire were invented today”: empower the young

May 20, 2010 · Filed Under general · 2 Comments

In my May 5 keynote at the ICSI / IHI Colloquium, one of my slides said “Empower the young.” It cited David Blumenthal MD, National Coordinator for health IT at the Dept of Health & Human Services.

I’d recently heard him say, “At Massachusetts General I had to get into IT, to keep up with my younger colleagues.” Read more

Through the Land of Smoke and Mirrors: An e-Patient’s Odyssey

May 18, 2010 · Filed Under Why PM, e-patient stories, hc's problem list, positive patterns, reforming hc · 69 Comments

Through the magic of Google Alerts, Diane Engelman recently learned of this blog. She’s one heck of an e-patient, though until now she’d never heard the word.

That proves patient empowerment is a real trend, driven by a powerful force: the desire to help oneself – or, often, one’s child – in any way possible, using every possible resource, which today includes the internet and social connections. (Yes, real medical value from connecting with non-MDs.)

In this case a large health plan was out-thought, outresearched and outmaneuvered by one of the most potent e-patient subtypes: the “Mama Lion.” The plan’s own cardiologists unanimously said Diane’s daughter Hilary needed mitral valve surgery, but the staff surgeons repeatedly said no – largely because, one suspects, they didn’t have adequate expertise for the appropriate surgery and didn’t want to pay to have it done out of network.

Instead they urged Hilary to hurry up and have babies while she could, wait excessively long for necessary surgery, and accept their claim that they were adequately qualified to do it when they clearly were not.

This is a long, true, inspiring story of an empowered patient/family using the internet to drastically alter the outcome for the better. She’s had this story written for a year and has been looking for a place to publish it. So glad you found us, Diane – and mazel tov, Hilary!

Patients Like Me beats Lancet Neurology by a mile

May 18, 2010 · Filed Under Why PM, found on the net, patient networks, pts as teachers, research issues · 1 Comment

Patient networks for the win! MIT Technology Review: “Earlier this month, the journal Lancet Neurology published a study showing that the generic drug lithium did nothing to slow the course of ALS … Eighteen months earlier, PatientsLikeMe, a for-profit patient networking site and data aggregator, had come to a similar conclusion, much more quickly and at much less cost.”

“What I’ve Learned from e-Patients”: Doc Tom and Dan Hoch, 2005

May 17, 2010 · Filed Under Why PM, key people, pts as teachers · 9 Comments

Thanks to the extraordinary Dutch e-patient / expert patient Lodewijk Bos (Twitter), president of ICMCC, I discovered this classic that I didn’t know existed. Our founder “Doc Tom” Ferguson died 8 months later so I never knew him, but this piece makes clear that the work we do here had been underway for years.

This was originally published in PLoS Medicine, the Public Library of Science journal, and is thus in the public domain. It’s included here in its entirety, though I moved the citation header to the end. Today BrainTalk is at http://brain.hastypastry.net/forums/.

__________

What I’ve Learned from E-Patients

As a neurologist subspecializing in epilepsy at a respected academic institution, I (DH) assumed that I knew everything I needed to know about epilepsy and patients with epilepsy. I was wrong.

In September of 1994, John Lester, my colleague in the Department of Neurology at Massachusetts General Hospital, showed me an online bulletin board for neurology patients that he had created [1]. In reading through the online messages, I observed hundreds of patients with neurological diseases sharing their experiences and discussing their problems with one another.

I knew that many patients with chronic diseases had been making use of online medical information [2]. Nonetheless, I was shocked, fascinated, and more than a bit confused by what I saw. I’d been trained in the old medical school style: my instructors had insisted that patients could not be trusted to understand or manage complex medical matters. Thinking back through my years of training and practice, I realized that there had always been an unspoken prohibition against groups of patients getting together. I had the uncomfortable sense that by promoting interactions between patients and de-emphasizing the central role of the physician, I might be violating some deep taboo.

A project of the