patient engagement

May 30, 2011 By e-Patient Dave 13 Comments

A real-time e-patient episode: advice for this newly discovered cancer family?

A friend called today and asked for advice. I said this one’s over my head, and we should ask the wider community. Here you go.
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Our family has a very new and serious situation, and are reaching out to the e-patient community for advice. Here is the situation:

For several weeks, a morbidly obese woman (5’9″, ~250 lbs.) in her mid-70’s has been in a great deal of pain, centralized in her abdomen, leading to an impaired ability to think clearly or make decisions.
Late Friday 5/27 she was taken to the ER of a large research hospital, where they discovered that she has ascites (fluid in the abdomen), and they tapped 2 liters of fluid from there, estimating that there were an additional 2 liters remaining.
Blood work shows non-hematopoietic cells circulating in her blood, indicative of metastatic cancer. Analysis has yet to come back from the lab (so we don’t know if cancer cells are GI or GYN in origin).
CT scans and trans-vaginal ultrasound reveal multiple tumors in the peritoneal cavity and on the omentum. The tumors vary in size, with the largest being 5 cm in diameter. Largest tumor is on or near small bowel.

As we say, definitive results have yet to come in to help determine the type of cancer, the extent of it, or even the location of the origin of the cancer — although it is suspected to have originated in the reproductive system, specifically in the endometrium or ovaries. Right now, however, this is just speculation. So we’re in the dark as to the nature of the cancer, and thus how best to treat it.

And that leads to our questions.

[Read more…]

May 10, 2011 By e-Patient Dave 15 Comments

Grand Rounds, May 10, 2011: TEDx Maastricht – Patients Rising

Welcome to Grand Rounds for May 10, 2011!

I have a confession: I’m new at this. My initial exposure to Grand Rounds a while back gave me a warped view, and as I worked on this project, I was a little bit graceless. (Those of you who wrote to me about it know what I mean. I meant well…)

This week’s theme is the TEDx Maastricht conference that happened April 4. But first –

These news highlights were submitted:

[Read more…]

May 4, 2011 By e-Patient Dave 3 Comments

New page on this site: “Patient Communities”

People keep asking where they can find a community for their disease. I often don’t have an answer, so it’s time to get to work, collecting information so patients in trouble can find what they need.

As a start, I’ve added a new page to this website: ePatientDave.com/communities. It’s a very preliminary, very partial list of places to go if you want to find a patient community for your disease.

So far it only includes two resources: ACOR and Webicina. (For details, see the page.)

I don’t intend for this page to be the world’s best list, but we need such a list SOMEwhere, and this will at least be a first start, eager to be replaced by something better. (Perhaps it will be an enhanced Webicina list; who knows.)

Thanks to Non-Hodgkins Lymphoma patient Virgil Miller, whose comment on last week’s post led me to finally do this. Virgil, you’ll find that ACOR has a community for your disease.

What a database of communities should be, ultimately: [Read more…]

April 18, 2011 By e-Patient Dave 5 Comments

Post-TEDx interview: history of social movements, good people at HHS, more

Below I posted video of my speech at TEDx in the Netherlands. Throughout the day, Dutch medical magazine Medisch Contact interviewed speakers after their talks. Journalist and moderator Henk Maassen clearly knows his stuff – all his questions were relevant and meaningful.

I quite like where this interview went – everything from the nature of this work to its parallels with social movements from the Sixties and beyond. Thanks so much to TEDx and to Medisch Contact for doing this and making the videos freely available!

Specifically, this TEDx event was organized by Radboud University Nijmegen Medical Centre. (Nijmegen is the oldest city in the Netherlands; in that country, “UMCs” are equivalent to America’s AMCs (academic medical centers).)

Footnotes:

In the interview, around minute 2:30 there’s party noise – the people in the hallway didn’t know there was taping going on.)
Here’s the Wikipedia page on Medisch Contact, translated using Google Translate.

April 12, 2011 By e-Patient Dave 12 Comments

“Let Patients Help”: Rockin’ the e-patient world at TEDx Maastricht

What fun THIS was. On the spur of the moment, people backstage convinced me to insert a few seconds of The e-Patient Rap, written by health IT blogger Keith Boone (@Motorcycle_Guy on Twitter). Keith, you rock!

Two wonderful things about this:

There were numerous patient speakers at this event. First time I’ve ever seen that! That’s why I inserted a new slide at the start of my talk: “The Year of Patients Rising”
At the end of my talk, the audience joined in (900 people!) in chanting: “Let Patients Help! Let Patients Help!”

See also the basement interview we did later that day, with Dutch medical association magazine Medisch Contact.

This TEDx event was organized by Radboud University Nijmegen Medical Centre. (Nijmegen is the oldest city in the Netherlands; in that country, “UMCs” are equivalent to America’s AMCs (academic medical centers).)

February 18, 2011 By e-Patient Dave 1 Comment

“How Patient-Provider Engagement Can Transform Healthcare”: Keynote at IHI Forum, 2010

I’m thrilled that the Institute for Healthcare Improvement has agreed to release the full video of the talk that Dr. Danny Sands and I delivered at the annual IHI Forum in December: “How Patient-Provider Engagement Can Transform Healthcare.”

Click the image to view it on the Videos page.

Thanks very much to the IHI for releasing this video for public viewing, so it can be viewed freely by patients, providers, payors and policy people everywhere. Their commitment to the cause of patient engagement is showing!