Archive for February, 2010

What do YOU want from the Society for Participatory Medicine?

February 26, 2010 · Filed Under Why PM · 33 Comments

We (the people on our banner graphic) are at the annual e-patients.net retreat – which, this year, is the board meeting of the Society for Participatory Medicine. Whether or not you’re a member yet (join here), we want to know: what do YOU want the Society to do?

Our first year was semi-focused – we published a GREAT batch of initial essays in the Journal of Participatory Medicine, but we haven’t done nearly the amount of work we’ll do in 2010. (Some of you have been banging down our doors trying to get things started; now’s the time.)

Here’s the purpose we drafted today:

To accelerate change in the culture of healthcare to a more participatory model, through leadership, advocacy, information and tools.

That’s why we’re here. Whether or not you’re a member yet, what outcomes do you want? What result do you want us to create in the world, that’s worth joining for?

Testimony submitted to the Adoption/Certification Workgroup for its Feb 25 meeting

February 24, 2010 · Filed Under Why PM, medical records, policy issues, trends & principles · 12 Comments

As I’ve noted recently, this Thursday I’m on a stakeholder panel at a meeting of the Adoption/Certification Workgroup, which is part of the Federal Health IT Policy Committee.

As noted in my previous post, this is a busy day, and each of us gets only 5-7 minutes to speak, followed by Q&A. We submit our testimony in advance. Below is mine. Additional reference material:

Panelist questions here
Rob Koppel’s March 2009 JAMA article here
RealPlayer webcast recording Koppel’s December lecture about the article here
I was alarmed by what I learned in that webcast, and wrote about it here

Click for a PDF of the testimony I submitted.

“Alone we are rare. Together we are strong.”
Rare Disease Day 2/28/10

February 21, 2010 · Filed Under Why PM · 6 Comments

One profound shift in healthcare enabled by the internet is the Web’s ability to be a common platform for huge numbers of low-volume diseases. This is the “long tail” effect that makes Amazon and eBay a success, selling vast numbers of items you never would have seen before the Web.

The difference, of course, it that this isn’t about obscure books; in this case lives are at stake.

Wendy White of Siren Interactive supports Rare Disease Day. We ran her post about it last year; she’s back. Be inspired by this great cause – and be aware.

Imagine that your health is failing or that your child is very ill, but the doctor can’t figure out what’s wrong. This goes on for a number of years, despite multiple visits to specialists. Then when you do get a diagnosis, you learn that you may never meet anyone else who has this disease or has even heard of it since it affects only a few thousand people. Unfortunately, this describes the experience of many people with rare diseases. Read more

Panelist questions for ONC’s 2/25 hearing on EHR patient safety issues

February 20, 2010 · Filed Under medical records, policy issues, positive patterns, reforming hc, trends & principles · 15 Comments

I wrote last Wednesday about some background material for a panel I’ll be attending Thursday, as part of the government’s process to encourage adoption of electronic medical records. In the current administration all such discussions are wide open to the public. Here are the questions we’ll be asked – I’d welcome your input. Read more

Proposal for a health data system to support urgent cancer patients and wounded warriors

February 19, 2010 · Filed Under e-pts resources, medical records, policy issues · 5 Comments

Denny Porter is executive-in-residence at the HIMSS Foundation, Institute for e-Health Policy. I met him in Washington last month at the eHealth Initiative’s annual conference, where I was on a panel. Great guy, and I love this proposal: a Federal Health Records Gateway to rapidly assemble all the health data about an urgently ill person from all the different Federal health data systems.

This column first appeared in Government Health IT on January 20, with the title “Plain Speaking on Health Data Access.”

For years a crisis has been brewing for many people who have become tangled up in a cyber-age web where healthcare records are being generated and maintained across an ever-broadening spectrum of healthcare delivery systems.

Two particular categories of patient are at the forefront of this crisis: those that have been diagnosed and told they have a terminal disease; and our country’s severely wounded military service members who are forced to transition from the Department of Defense to the Department of Veterans Affairs and out into the civilian healthcare system. Read more

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

February 18, 2010 · Filed Under e-patient stories, others' e-patient stories, policy issues, reforming hc · 4 Comments

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, an outstanding example of someone who wouldn’t take death for an answer – neither from doctors nor from their HMO. She says winning these battles is her calling – and she has made it her career.

My name is Laurie Todd. I am an e-patient, and I am the Insurance Warrior.

In March 2005, I was diagnosed with late-stage appendix cancer, rushed into surgery, and given months to live. I immediatley lost my business, my income, my savings. Finally, I was sent to the oncologist, who said, “There is no treatment for your disease. And, even if there were, they wouldn’t pay for it.” Read more

What to do about “the cream of the crap”? ONC’s Adoption/Certification Workgroup meeting

February 18, 2010 · Filed Under hc's problem list, medical records, policy issues · 26 Comments

I’d like your help preparing thoughts and testimony for a policy meeting I’ve been invited to attend in Washington next week.

For these meetings, one needs to submit prepared remarks in advance, for the committee to digest in advance. And from what I’ve learned so far about this, there’s a lot to chew on, and people of all stripes (that’s you) can probably provide valuable input. At very least you can express yourself.

[Update 1 pm ET Thursday: I haven't been able to convert the recording mentioned below (which is in RealPlayer format) to display it here, but if you have RealPlayer installed you can play it yourself at http://real.welch.jhu.edu/ramgen/DHSI/Dec182009.rm. The slides are often out of sync with the audio but they catch up. Skip the first 9 minutes; the talk starts around 9:15 and goes 30 minutes, followed by 30 minutes of Q&A. The meat of it is in Dr. Koppel's talk, but the Q&A has more juice.]

E-patients.net = suggested reading

February 17, 2010 · Filed Under general · 11 Comments

Gretchen Berland is one of my heroes, so I was thrilled when she asked me to give a guest lecture at Yale. Then I read the syllabus for “Media & Medicine in Modern America.” It’s too cool to keep to myself… Read more

The Decision Tree: What to Expect When You’re Expecting a Long Life

February 14, 2010 · Filed Under general · 32 Comments

Warning: Do not read The Decision Tree unless you’re ready to make some kind of change in your life.

Thomas Goetz catalogs the recent advances (and setbacks) in medicine & personal health, but also maps out the possibilities for how things could get better. He does this so convincingly that you can’t believe it’s not already taking root: clear labeling on drugs & food, passive tracking of our exercise routines, open access to our health data.

There are enough lessons for self-improvement in the book that I found myself comparing it to What to Expect When You’re Expecting, but since Goetz focuses on the big picture (prevention, diagnosis, disease management) it is more like What to Expect When You’re Expecting a Long Life.

Unlike the pregnancy bible I read 10 years ago (and more than once threw across the room), Goetz doesn’t preach from a lofty whole-grain pulpit. He doesn’t think we should ask people to do more, nor should we scold people for every mistake they have made, but rather we should give them tools to make better health choices. Read more