e-Patient Dave

Power to the Patient!

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From now on for me, it’s health *and* care

Health & Care signature

This post became a chapter in my 2013 book Let Patients Help: A Patient Engagement Handbook.

Every year in this season I reflect and renew, emerging in January with new views. This year the first conclusion arrived early: I’m changing a key part of my language. From now on for me it’s not “healthcare,” it’s “health and care.”

Why? Because I’m increasingly seeing that it’s incomplete to look at transforming medicine by just talking about the care part – the part that kicks in when something goes wrong. All of us – patients and providers and insurance and government and industry and everyone – need to be thinking about health, every time we approach a problem with the health care system.

I know I’m not the first to say this, but as a marketing slogans guy (“Let Patients Help,” “gimme my damn data” etc), I’m keenly aware of the power of handy language. Everything I explained above can be said over and over, but it doesn’t fit easily into everyday discourse. “Health and care” is an easy plug-in replacement for the usual “health care.” And that boosts the odds people will use the new wording.

And language defines our thinking.

The implications for patient engagement are clear: it’s not sufficient to get engaged (to get it in gear, to get activated) only when sickness hits. My view from now on is, if you wanna be an e-patient, it starts with holding up your end of the bargain before you get sick.

So for 2013, let’s broaden our scope: the focus of our work should be “health and care.”
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One more thing: I like the  word “care” – it’s patient-centered. In my life getting doctored and nursed, I’ve had the experience of being cared for, and I’ve had the experience of just being treated, without care. When I’m in trouble, what I want – what we should all shop and ask for – is great treatment delivered in a caring way.

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New Hospital Safety Score data: a key enabler for informed choice

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

This is cross-posted from e-patients.net.

The PDF at right is a summary of sample data from this new dataset.

The Leapfrog Group is a highly respected patient safety organization. They’ve earned a reputation for carefully and thoughtfully assessing providers’ actual performance in quality and safety. Their mission statement:

To trigger giant leaps forward in the safety, quality and affordability of health care by:

  • Supporting informed healthcare decisions by those who use and pay for health care; and,
  • Promoting high-value health care through incentives and rewards.

Today, Leapfrog’s affiliated organization Hospital Safety Scores announced a major update of its A-through-F grades of thousands of US hospitals, and new smartphone apps to access the data on the fly.

Predictably, the hospitals who got an F – based on their own data! – are saying it’s “not a fair scoring system.” Happily, Leapfrog follows the best practices of open science: they fully disclose all their data, the methodology they used, and who designed the system. This means all buyers of care – e-patients, families, employers – can examine the data and assess claims of fairness for ourselves.

The full press release is here. I won’t take time to go into it; many others are doing so –  here’s a current Google News search and blog search. Here, I want to focus on two aspects that are core to participatory medicine: understanding the data, and why this matters.

[Read more…]

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Engage With Grace: annual Thanksgiving blog rally on responsibility about end of life

Once again this year, Alexandra Drane of Eliza Corp., and friends, have coordinated the Engage With Grace blog rally, in which scores of healthcare bloggers devote their site, for a day or more, to this important topic.

They chose this time of family get-togethers to encourage conversations about our end of life choices. It may seem odd, but what other opportunities do we have to discuss, in quiet moments, this most intimate of subjects?

In case you haven’t seen it, here’s Alex’s talk at TEDMED 2010 in San Diego, with the moving story of her sister-in-law’s death – and how very, very important it was to her daughter (to this day) that her mother’s wishes were honored.

Be sure your wishes are known. Even if you don’t expect your words to matter for a long, long time, say them now.

Here’s “The One Slide” with the five questions Engage With Grace asks us to answer. In fact, you can go to their site and register your wishes. After the slide is their annual message. This time it’s about Steve Jobs, who met his end since last year’s message.

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Who gets to say what’s patient-centered? (Hint: the one who’s IN the center)

This is an adaptation of a message I wrote last night to some friends who are participating this weekend in PCORI’s workshop this weekend.  I wish I could be there, but overseas travel was booked for today, months ago.  For newcomers I’ll say more at the bottom of this post, but first, my message to the participants.

PCORI’s charter – its very name – is to develop Patient Centered Outcomes. That raises the question:

Who gets to say what’s patient-centered? We should.

The scientific establishment won’t turn on a dime with this one patient weekend, so what COULD we persuade PCORI and the attending scientists about? My view:

To me the core question of the weekend is: Who gets to say what’s patient-centered? I say, it’s the one who’s in the center. Who else could possibly know if things are balanced around them?

So, I suggest: in any patient-centered outcomes project, patients should participate not just in selecting projects or goals/outcomes (from a scientist-generated menu), but in defining the goals, the desired outcomes, even what they’d like researchers to pursue.

This is a maturing of the patient’s role, and a shift in the researcher’s role to one of partnership rather than “doctor knows best.” The maturing seems to parallel how a kid grows up: [Read more…]

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My daughter gets her E on.

Running cross country, 1999This is giddy; deal with it. :-)

Regular readers know all about my awesome daughter, Lindsey deBronkart L’Ecuyer. The one I cheered on, in high school cross country.→ →

The one I walked down the aisle in 2009, when she married Jon.

Finishing the Boston Marathon, 2012
←The one who ran her first Boston Marathon last spring, in near-record heat, and finished in the middle of the pack.

Jon-Lindsey-Dave in Nice

The one Ginny and I met up with (with Jon) when our vacations crossed paths last summer, in frickin’ Nice. France.→
(Their vacation was much more orchestrated than ours. In some ways she’s not at all like me.)

The one who’s now assistant cross country coach at Marblehead High School, where she’s a science teacher.→

My baby girl, all grown up and adult and functioning in the world. Swoon.

Well, she called me today, all proud and happy and said something good happened today. Something very E.

She’d decided to get a DNA test (she’s always been fascinated with DNA) to see if she could learn more about a particular condition that runs in the family. Having heard a few things (ahem) about the unpredictability of medical bills, she checked carefully to be sure that everything the hospital would charge would be covered by insurance. Yes.

Well, the bill arrived, and oops, the hospital work was covered, but the lab that did the work is out of network!  A $320 bill! Grrr.

So, what does an empowered person do? Rather than blowing up, she first explained her situation to the insurance company.

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Perceptions creating reality: the scapegoat dynamic and the role of the patient

TEDMED Great Challenge: Role of the PatientThis post brings together several threads from the past year’s work. At the core is one of the Great Challenges for TEDMED 2013: The Role of the Patient. Roles exist in a context, and a new perspective on this context came to light today.
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Those who’ve seen me speak know I spend a lot of time thinking about the underlying structural issues that keep healthcare from evolving. In particular, leaders like Warner Slack MD have been saying since the 1970s that patients are the most under-used resource in healthcare.

But many in the profession can’t imagine that participatory medicine could be valid.

Why? Why do so many physicians, administrators and health policy people roll their eyes at the idea of patient as partner? (Many don’t, but many do.)

I don’t ask this as a whine, I ask it as an inquiry.

Paul Levy is the former CEO of my hospital, Beth Israel Deaconess Medical Center. He’s also the one who introduced me to Dr. Danny Sands, my famous primary physician, who practices at BIDMC, saying “You’ll probably like this guy.” Well, GOOOAAALLL!, as they say in soccer. Which Paul plays, coaches, and referees. (He’s skinny.)

Today on his blog Paul writes How a Team Degrades. It’s a tale of a Lean exercise his hospital used, which he connects to a recent soccer episode. And I see a parallel with the role of the patient.

The Lean exercise:

A group of colleagues sat around a table and were given a problem to solve.  Each person wore a hat with a label that could be seen by everyone at the table, except the person wearing the hat.  The label might say “whines,” “creative,” “combative,” “unintelligent,” or some other characteristic.

Strikingly, within just a few minutes, people at the table began to treat each person as though the assigned characteristic were true.

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