e-Patient Dave

Power to the Patient!

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Speaker Academy, #2: Understanding the industry

Straw island on Lake Titicaca, from http://www.oocities.org/mr_rev2001/titicaca.htm
From http://www.oocities.org/mr_rev2001/titicaca.htm

Yesterday’s post closed with “no matter how compelling your story, it ain’t about you, and it ain’t about me: it’s about understanding your audience and their concerns. That means there’s work to do. Take along a lunch.”

Soon we’ll get into specifics of how to present yourself to your market (the people who might hire you). But first, it’s essential to understand the world those people live in. This post continues the notes Randi Oster took from our call last week.

Again, my comments are indented italics, like this. (The picture at right is explained below.)

Lesson #2: The healthcare “ocean” is huge and diverse. Learn what matters to each audience.

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Speaker Academy, part 1: Marketing yourself

Randi Oster
Randi Oster

If you haven’t, be sure to read yesterday’s post introducing this series.

My previous post introduced a new series of mentoring posts to coach patients who are good speakers try to make a business out of it. Believe me, it’s not easy; effective speaking skills are only step one. This series will be about how I’ve built a business. It’s not the only way to do it; I’m just sharing what I’ve learned.

Last week I had such a mentoring call with Randi Redmond Oster, a self-described “writer, engineer and mother who is a passionate advocate for patient management reform.” She’d already been out there giving talks for free at public libraries, with strong positive feedback. Only recently did she realize she might get paid for it. She sought out experienced advice, and here we are: We talked on the phone with the agreement that she’d write it up for posting here (and on her site).

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New series: “Speaker Academy” – becoming a patient speaker

The world is changing, in good good ways. As we start the second half of 2013 it’s a perfect time for something new: coaching patients on becoming speaker/advocates.

Times have changed. When I started giving speeches four years ago I literally couldn’t get anyone to pay a cent to hear the voice of a patient. Now that’s changed – medicine understands that there’s genuine value in seeing things from the patient’s point of view, and gollllly, some of us can even give a pretty good speech, even if we don’t work in the industry!  So as I said last winter, I’m finally making a living at it: it took three years, but I finally reached break-even.

That creates both a problem and an opportunity:

  • The problem is that I’m now too expensive for a lot of events. (I’ve demonstrated my value, and I get full professional speaker fees.) (This is good; it means I get to sleep, not bounce checks anymore, etc.)
  • The opportunity is that this creates an updraft, so to speak – a market for additional speakers, earlier in their trajectory, who can give a compelling speech that’s focused not just on their story, but on delivering value to the audience.

And that has led several patients to ask how I got started, so they can try too.

I’m happy to explain how I market myself. And taking a tip from Ted Eytan, I’ll mentor people via this blog, so others can benefit from the advice, and so we can discuss, to help future travelers too.

My next post will be the first in this new series. Let’s have fun!
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The first few posts in the series:

The series continues, as time allows, in the category Speaker Academy.

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e-Patient request: Recurring bleeding & misery after partial knee replacement

From time to time I post an e-patient request from someone who seeks information or a community of patients with a particular condition.  This one is for a patient who had knee surgery in April, and it hasn’t gone well; current status is “Lots of pain, mood low, can’t walk well at all.” The history:

Patient is 56 years old, athletic male in good health.

Partial knee replacement performed April 12, 2013. Within four weeks he was back in surgery because of bleeding.

They retrofited the appliance June 7, sewed him up and sent him home within a week.

Started bleeding again in 3 weeks; arteriography now scheduled for July 12 w/ radiologist to find bleeding, (possibly). Two options anticipate: rest, wait, heal; and/or, full knee replacement.

Any advice, thoughts, experience?

If you have advice, please reply in comments below.

If for some reason you want to reply privately, see my contact page. And thank you, all.

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Vigilance is valid: New rule for the culture of safety

Photo of David NashDavid Nash is Dean of the School of Population Health at Jefferson University (@JeffersonJSPH) in Philadelphia. Last week at the Maine Hospital Association’s (MHA) Summer Forum he and I both spoke. His talk was titled “Demand Better: Revive Our Broken Healthcare System.”

I hear a lot of speeches, and this one hit me between the eyes in a number of ways, combining some facts I’d heard before in new ways, mixed in with personal experiences. I hope to blog about several of these points (with his blessing); this is the first.

The story

The appendix of Let Patients Help is titled “Stop the Denial.” It’s about the reality that medicine is inherently hazardous, and medical staff pretty much work without a net. As I like to say, “In my own work I live through the Undo key, but clinicians don’t have one.” And they don’t work in a system that prevents human error.

Result? As the book says,

Did you know that in the best hospitals in America, 1 in 20 surgical patients dies of a complication? After the surgery? [HospitalSafetyScores.org] (In the worst hospitals it’s 1 in 6.) Hard to believe, yes?

If you were considering surgery, wouldn’t that change your thinking? Wouldn’t it make “Let’s wait a bit” seem like a prudent thought?

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All patient/consumer groups – PLEASE ACT. Our families need full data on finding the best providers.

Diagram of where to clickI made several corrections to the numbered paragraphs, 2:30 ET

Time is short – deadline Tuesday.
Please forward to any individual or association who can act.

For convenience, I’ve tried to condense the issues and actions as much as possible.

Everyone in the U.S. can participate – every individual, citizen or group. Add your voice.

If you have questions, ask in comments.

1. The issues – my view

This was brought to my attention by Leah Binder, CEO of Leapfrog Group in DC, about whom we’ve often written here and on e-patients.net. They’re major fact-based safety advocates – all about the data. And as I’ve always said, we all perform better when we’re informed better.

So to me, hiding data from us is disempowering, and it dis-enables the market forces that reward the best.

The issue here is  some new rules regarding what data our government shows us about the safety performance of different hospitals. In the current batch of proposed changes there are many good things, but three items concern me greatly, and I think anyone who believes in informed consumer choice must act:

    Comparison of five hospitals' data (click to open PDF)
    Comparison of five hospitals' data from this report (click to open PDF)

1. We need data for individual hospitals, not just the whole company. YIKES! Would you want that in auto safety? Would you want to hear that on average a certain brand is reliable, but have them hide that certain models explode or roll over?? But that’s exactly how it is in medicine. Consumer families need better information.

  • This is no small issue – in the example at right, the four hospitals that got grades of A through D are all part of the same company. Do you want that data hidden, so when your relative gets sick, all you know is the company’s overall average??
  • Remedy: demand that we continue to see the data for every hospital!
  • Note – this isn’t just a consumer rights issue – if the best providers aren’t paraded, how can the market reward them?

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