e-Patient Dave

June 18, 2011 By e-Patient Dave 23 Comments

e-Patient appeal: Paraneoplastic cerebellar degeneration, Boston area

A relative writes: “Anyone out there know anything about treatments, specialists, community for someone recently diagnosed with paraneoplastic cerebellar degeneration, especially in the Boston/New England region of the US?”

The condition’s Wikipedia page says: “It is believed to be due to an autoimmune reaction targeted against components of the central nervous system (specifically Purkinje cells and large brain stem nuclei). It is thought to be caused by an anti-neuronal antibody…”

I didn’t readily find much on my Patient Communities page, but I hope it will grow. I did find these search results on MedHelp.

June 2, 2011 By e-Patient Dave 14 Comments

Costco magazine’s debate for June: “Should you seek medical information online?”

Update June 8: I’ve edited this text in an effort to make it more constructive and informative. I did this after getting feedback from several people that it came across as more negative than I had intended. Thanks for the feedback! Everyone I know agrees that healthcare would improve if we all listened better, and I guess that includes bloggers…

As a longtime loyal member of Costco, the warehouse shopping club that sells nothing but great quality at amazing prices, I gladly said yes when they approached me to participate in their monthly “Informed Debate” feature, because the topic was seeking medical information online.

The feature is in the June edition, here. (It’s page 16 in the print edition.) I didn’t get to compare submissions with my “opponent,” so it wasn’t really a debate; we just submitted our thoughts. I’ll paste in my 400 words here, and then I’d like to address the concerns expressed by the others.

So: should you seek medical information online?

My response: Yes.

Here’s my response as I submitted it. The version that went to print was edited for style and length.

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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.

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May 25, 2011 By e-Patient Dave Leave a Comment

Stifling Primary Care: Why does Medicare/Medicaid Still Support the “RUC” Rate Setting Cabal?

This isn’t directly involved with my causes of patient engagement and participatory medicine, unless you believe that a patient engaged in their health wants to know the best way to be healthy (duh) and thus avoid the need for health care. It keeps costs lower and keeps the family out of the hospital – good deal, huh?

The best way to do that, of course, is with prevention and good primary care. So you’d think preventive services would be the most highly valued.

Well, they’re not, and a major reason is that there’s been a secretive rate-setting cabal for twenty years, which decides who’ll be paid how much. And those people vote, year after year, to pay primary physicians less, and pay specialists more. To quote a Wall Street Journal article last fall:

Three times a year, 29 doctors gather around a table in a hotel meeting room. Their job is an unusual one: divvying up billions of Medicare dollars.

The group, convened by the American Medical Association, has no official government standing. Members are mostly selected by medical-specialty trade groups. Anyone who attends its meetings must sign a confidentiality agreement. …

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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:

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May 8, 2011 By e-Patient Dave 3 Comments

How Social Networking Drives Value in Health

Yesterday while working on a new seminar I’ll be offering¹ about patient engagement, I met a new Twitter friend, Mark Harmel (@MarkHarmel), and we talked on the phone for a while. (For some reason my thoughts progress best when I’m in spoken dialog.)

Mark is a healthcare photographer, social media consultant and in 10 days he becomes a public health graduate student. Check out his awesome post about photographing Paris. He’s pretty new to all this “e” stuff, so I talked through my content with him, which helped me fit it to the timeline.

Overnight he emailed about the value of knowing some wonderful, caring doctors. Replying this morning, I had a thought about why patient social networks are so game-changing: they create a new source of value from existing resources. I wrote:

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