e-Patient Dave

Power to the Patient!

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Experiences exploring BCC patient communities, part 1

On my first post about my BCC (basal cell carcinoma), seeking patient communities and other information, I was pleased that people submitted four communities.  I posted them to my very informal patient communities page:

Tonight (Feb 20) I’m exploring them for the first time.  I didn’t find any useful information yet, so you may want to come back another day.:)

  • If you know of other communities, please submit the URL in a comment below.

This won’t be of interest to most people – it’s mostly for people who want to study what a site should be, and the process of exploring.

Preface – my purpose and context

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It turns out being an engaged patient/consumer takes time.

Boy, is this interesting.  Five years ago when I found out I was dying, I quickly dropped everything. I quoted Samuel Johnson:

“Depend upon it, sir, when a man knows he is to be hanged in a fortnight, it concentrates his mind wonderfully.”

My median survival of 24 weeks was more than a fortnight (two weeks), but it sure focused my mind: I quickly joined the patient community on  ACOR, paid close attention, and acted quickly.

This time, mere skin cancer is not doing the job. I got a lot of good feedback to my RFP, and I want to process it, arrive at a plan and get it in gear, but I haven’t done a single thing with it yet. This post is a start.

Approach:

  • I have a lot of travel coming up, and that needs to mesh in with my providers’ plans, complicating things further. So:
    • Just as I dropped my participation in South By Southwest, I’m cancelling many other plans this week. It means I won’t be able to meet up with everyone I’d like to, but I’m already not getting enough sleep.
    • I just posted an out-of-office email message saying that except for current customers, I’ll be ignoring email.
  • I’m going to start blogging smaller chunks as I gather them … I have a tendency to want to write BIPs (Big Important Posts), and that’s not working.

First reports:

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Why does success take so long? One part of the answer

In Outliers, Malcolm Gladwell famously said that sometimes it looks like someone has become an overnight success. (A current example is new NBA darling Jeremy Lin … only 16 games since becoming a star, but look at his massive Wikipedia page.)

But, Gladwell says, almost always that person has put in 10,000 hours practicing their skills and gaining perspective. Then things come together, and it looks like they arose out of nowhere.

I don’t know if he was thinking about this graphic, but I know the feeling it conveys. Not sure where I am on this path, but I know the e-patient movement is farther along than it used to be. We are credible and people are listening.

However far along we are, our movement is driven by one of the most fundamental forces in human nature: people want to take care of their families. So we may face hurdles and diversions, but time is on our side. Especially as we boomers become a problem.:-)

Like, ex-hippies who today are acquiring multiple “co-morbidities.”

(Yeah, that’s what the medicos call it when we have more than one condition at a time. Lovely, eh? You can guess which party decided to call it that … it wasn’t a patient!)

Don’t be put off by obstacles, folks. Do what you need to do. Take care of each other, and help each other do so. Let Patients Help.

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Yo, y’all: I’m FINE :)

Thank you, all of you who’ve written to express concern. But I seem to have come across as more concerned than I am.

Yeah, I have Stuff To Deal With.  Skin cancer (yawn), eye drops (irritating actually) & tests, and dental stuff (annoying cost-wise but I have a damn good dentist I’ve been with since 1980 … post-grad work at the Pankey Institute, heavily patient-centered). Yeah, I have Stuff. But I’m fine. (See the photo, right, taken two weeks ago in San Francisco with the amazing Hugo Campos, whose “gimme my data” TEDx talk is the recent darling of the e-patient world. He Photoshopped a background of numbers into it – wish I could do that!)

I’m not depressed.

I’m not gloomy.

I’m not worried. (This bears no resemblance to metastatic kidney cancer.)

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I’ve started an RFP for my skin cancer

RFP thumbnail (click to visit the document)

Be sure to scan the 57 comments readers added, below.

The other day I announced my new skin cancer diagnosis and discussed how I’ll blog my approach to it as an e-patient.

I’ve decided to explore my options by doing what companies do when they’re shopping for a solution: they write a Request for Proposals, and let vendors reply. But in this case what I published isn’t cast in stone – I invite discussion and suggestions. And, significantly, I start with the context: partnership; participatory medicine –

I’m approaching this through an RFP process because I believe in “participatory medicine,” in which patients play an active and responsible role in all aspects of healthcare. I believe patients should play an active role in making care more cost-effective and patient-centered, by being responsible about costs and by saying what they want.

 

Here’s the RFP, in Google Docs. At top right of that page there’s a place to leave comments, or discuss here. Thanks for helping!

Update: This triggered an enormous amount of discussion on social media, additional posts here (with the results of my shopping), and even an article four years later in the New York Times, which I posted about with additional thoughts and resources. [Read more…]

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Time to practice what I preach: I have skin cancer again.

Photo of the lesion, Nov. 15
Photo of the lesion, Nov. 15 (click to enlarge, if you really want)

Update Feb. 11: I’ve decided to publish what I want to find in a provider: see this post.

Be sure too to read the substantial information contributed below in comments, some by e-patients and some by participatory providers. This process is interesting to observe!

An odd consequence of speaking at medical conferences is that sometimes my face is displayed, real big, on monitors at the front of a room. That happened in November at the Aligning Forces for Quality (AF4Q) annual meeting in Washington.

At the end, Lisa Letourneau MD, MPH of Maine Quality Counts raced up, pointed to my jaw, and said “You should have that checked.  I think it’s a basal cell.” (That’s the least serious type of skin cancer – see Wikipedia: “Basal-cell carcinoma (BCC) is the most common type of skin cancer. It rarely metastasizes or kills.”) A few days later I took the picture at left, and started watching.

I had a basal cell removed from my nose 30+ years ago. (More on this in a moment.)

To me it was just a shaving cut… but, I realized, it wouldn’t heal. For the next two months I was a slug (a not-engaged patient!), but I did take pictures, and son of a gun it did not get better, even when I thought it was finally going away.

When I had my annual physical recently, I asked my doctor, and he looked and said, “Get a biopsy.”  I did, this week, and today they called. Yup, it’s a basal cell. Thanks, Dr. L!

Remember how you’ve always heard that a warning sign is “a sore that won’t heal”? I guess they mean it. I kept kidding myself, thinking I was continuing to re-injure it shaving. (Not bright, I know.) Then, just before the physical, I ran across a summer photo, and there it was. So I guess it was there longer than I realized.

I’m going to blog this experience, as I try to practice what I preach: get engaged, learn what I can, explore my treatment options, connect with other patients.

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