Power to the Patient!
Below is a long comment I posted Wednesday on my neighbor @KevinMD’s blog. (Most of his widely read blog is articles he’s found elsewhere; he’s cross-posted some of mine.)
The post I replied to is a thoughtful submission by two grad students (one business school, one med school). Their thoughts are valid but as you’ll see, the issue isn’t apps – this is part of a broader issue that every engaged patient (you!) should understand. Here’s my reply.
On Facebook Friday I posted this picture of my wife Ginny, saying “There is an astounding story behind this photo. Details Monday.” Well, it’s Monday.
As you read this, bear in mind, your mileage may vary – everyone’s different, this wouldn’t be appropriate for everyone, and Ginny herself played a big part in it.
The astounding story:
In this photo we were out to dinner, nine days after Ginny had both knees replaced. She walked into the restaurant using only canes – no walker, no wheelchair. The surgeon is Howard Luks, the social media orthopedist (@HJLuks), whom I met on Twitter in 2009, and the surgical approach he used is called muscle-sparing (or “quad-sparing”) minimally invasive surgery, part of a larger package of methods he uses, described below. Bottom line:
Of course she’s still on pain meds, tapering down, and her endurance is of course limited. But she is basically functional and able to live on her own if she needed to, or rehab wouldn’t have discharged her.
Here’s a video of her walking around the hospital floor – 500’ – with a walker for balance (not leaning on it), less than 48 hours after leaving the O.R., and on the right, at rehab, walking with just canes, a week after the surgery:
She was discharged from rehab after demonstrating (among other things) that she can safely walk up and down a full flight of stairs … six days after the surgery. She can get herself into and out of bed, into and out of our Prius, etc. She’s not speedy at any of it but she’s functioning reliably.
(Of course I have Ginny’s permission to talk about all this. Also, I’m an e-tool geek and she’s not, so I’m the one using the tools discussed here.)
Again, everyone, please read this: your mileage may vary – everyone’s different, this wouldn’t be appropriate for everyone, and Ginny herself played a big part in it.
Here’s the punch line: Get a good insurance agent. Mine is Wendy Reed Johnson [right]. She didn’t cost me a thing, and saved me a ton of angst.
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For years in my cost-cutting edition series I’ve been blogging about my experiences as a highly activated shopper for medical services, most recently six months ago when I announced:
Six month countdown to Medicare!
What do I need to know?
Well, it’s six months later, I’m turning 65 this month, so on the first of the month I went on Medicare. (In some situations you can wait, but I opted not to, so I had decisions to make.) Considering how much I blogged in that series about insurance shopping in the past, including the difficulty of figuring out the right plan for my needs, you can imagine that I was anticipating more misery. But Wendy asked the needed questions, laid out all my options, and in short, made it easy.
I highly recommend that before you approach 65 you hunt for a Wendy. Find someone who’s a delight to work with – for you, because people are different – and who, when you ask questions, is happy to hear them and can answer in a way you understand.
IMPORTANT: Medicare is not one big system that you just sign up for. It still has many many options and flavors. Plus, you have to pick one plan to cover doctors, another to cover hospitals, and another for prescription drugs. Frankly, I refuse to get into explaining here the perverted and needlessly complicated terminology (Part A, Part D, blah blah blah). I prefer to pay my agent to understand it. (Except I don’t have to pay her.) [Read more…]
I’m in Madrid at the ESMO Congress, “the European ASCO.” (ESMO is the European Society for Medical Oncology; ASCO is the American Society of Clinical Oncology, and its annual conference is huge, as is ESMO’s – over 18,000 attendees.)
Yesterday I led a session titled Meaningful patient involvement in clinical trial endpoints, and a couple of slides stopped me in my tracks. (If you don’t know the term “endpoints,” see discussion below. In short, it’s what they decide to measure, to see if a treatment is effective.)
The first slide here (click it to enlarge) points out a disconnect: the yellow triangle shows that today, patients are mostly involved toward the end of the process – after someone has decided what should be studied, and designed a trial to do that. At bottom right, in the blue band, we see that in this model the patient’s role is “doing things right.”
But the creator of this slide is German doctor Bettina Ryll (living in Sweden), whose husband died of malignant melanoma. [Read more…]
I’m going to START with three clarifications, because sometimes people don’t read footnotes. :-) Read before proceeding.
Also, regular readers know that as a former cancer patient in New Hampshire, my insurance options were limited, and I chose $10,000 deductible, so all of this will come out of my pocket. As I’ve blogged many times before, this turns out to be a nifty way to discover how the money actually flows in American healthcare, which is usually really hard to find out.
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Below is the pathology report from some biopsies I got in January. The bill is $416 list price; after the usual insurance discount, my balance due is $312.
My questions:
[Read more…]
A new website launched last month. I’m not involved with the organization, but I almost wish I were, because what I’m seeing is what I hope we’ll see everywhere, for every medical need.
The site is InquireHealthcare.org, a project of the non-profit Health Care Incentives Improvement Institute (HCI3). It’s the first time I’ve seen a new term that I love: “consumer-patients.”
(Some activated consumers hate the term “patient” and some activated patients hate the term “consumers.” My own views are in the glossary of Let Patients Help. Here I want focus on what you get when you mix the best of both – because that’s what they’re after on this site.)
It’s got three things I’ve never seen combined: shopping tools, self-assessment tools, and community activist tools. How’s that for a toolbox to create change? (Again, I wish I were bragging about my own work, but I never heard of them until they launched.) Specifically: