e-Patient Dave

Power to the Patient!

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The difficulty of shopping when they hide the facts: that skin cancer RFP in the NY Times

NYTimes Tina Rosenberg clip 4-12-16$5,000-$7,000?  $1200-$1500?  $868?  What should it cost to remove a simple skin cancer? What if you can’t find out?

Long-time readers know that in 2012 I was on high deductible insurance – and I don’t mean Obamacare-style $3,000 deductible, I mean $10,000 deductible. I chose that gladly, because I had laboriously analyzed the five plans available to me. I know insurance is a game of sharing risks, so I analyzed (it took all my Excel skills) and chose.

What happened next is described in a column in today’s NY Times by Tina Rosenberg, Shopping for Health Care: A Fledgling Craft: within months I discovered I had a skin cancer on my face. I became a highly motivated shopper, and quickly discovered nobody could tell me what would be on my bill.

The details are in several skin cancer posts here. But Tina Rosenberg writes about social problems, and I want to draw attention to the nature of this social problem: it withholds power from the person whose health is at stake, and that’s just plain wrong.

Here’s the World Bank’s definition of empowerment, from a January post:
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USA Today article on “secret malarkey” of healthcare pricing

Photo of USA Today article 9-21-2015The medical costs and price shopping story I wrote about last Tuesday appeared today in USA Today: Health care costs are a medical mystery. (Nice play on words – usually “medical mystery” is about diagnosing a disease, and this dysfunction sure could use some sleuthing!)

I’d love to see this coverage taken to the next level. The text and the bar chart talk about the crazy variation from city to city – an angioplasty costs four times as much in Sacramento as in Birmingham – but I know lots of people who just shrug and think “Well, Sacramento must be more expensive.” The thing that really gets savvy consumers going is when the same thing costs wildly more in the same city.

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Article in USA Today soon with my opinion on costs, and online advice

Photo of e-Patient Dave
Photo by Zack DeClerck for USA Today. (Click to link to article)

I was interviewed recently by USA Today reporter Laura Ungar of the Louisville Courier-Journal. The story ran Monday 9/14 in that paper and will be in the national USA Today soon. (I expected it on Tuesday 9/15 but it’s not there.)

The subject is summed up perfectly by the headline: Wildly varied health costs a national mystery.

Regular readers of this blog are familiar with my years-long series of posts Let Patients Help: Cost-Cutting Edition, especially my efforts to shop responsibly to get a skin cancer treated. If you’re not familiar with it, and you have the stomach for it, sit back with a cup of your favorite beverage and start digging.  (For a shorter version, read the final post, which is pretty unsettling.)

Why do I ask you to read it? Because I believe this is important to the future of health(care) in America. We must put an end to this crap. Providers, give us the facts! Tell us what things will cost, so we can decide what’s important to us!

Good providers who are trying to do a good job at a good price simply cannot win our business in an environment that, 9 years after the original article in Health Affairs, is still best described as that article’s title did: “Chaos behind a veil of secrecy.”

Can you believe that this situation is tolerated and nobody is getting busted? As I told Laura in the interview:

There can be no explanation other than some secret malarkey going on. …

I feel disempowered and disrespected, because aside from the incredible cost crunch we’re all experiencing, it’s a downright sin that my family can’t readily find out what the options are and what the costs are.

Remedy: information!

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Six month countdown to Medicare! What do I need to know?

65th birthday cake by Oana Go (Germany). Click to view project on Craftsy.
65th birthday cake by Oana Go (Germany). Click to view project on Craftsy.

Yesterday I blogged about my business’s fifth birthday … and this week, it turns out, marks six months before I turn 65!

And that means I go on Medicare.

I’ve learned enough in these five years to know at least two things:

  • You’re a patsy if you think the American medical system will necessarily take care of you. It might, but if it does, it may be in the process of making itself a boodle of money.
    • Yes, there are many exceptions – individuals and organizations who care and who work hard. But I’ll repeat: you’re a patsy if you sit back and assume the system will take good care of you.
  • When it comes to money in American healthcare, don’t expect anything to be explained clearly.
    • 18 months ago I blogged about a famous policy paper, Hospital Pricing in America: Chaos Behind A Veil of Secrecy by Princeton economist Uwe Reinhardt. That paper was published 8 years ago, and hardly anything has changed. (The title of the article is real and not an exaggeration.)
    • In 2013 I lived the chaos and the veil myself, in my own shopping for everything from CT scans to shingles vaccines to skin cancer treatments. I saw at close range that Reinhardt was not exaggerating, and I blogged it in a series called  “cost-cutting edition.”

There are signs of hope, such as ClearHealthCosts, but although I work for change, I’m not waiting for the posse to save me.:-)  I’m gonna be pro-active, engaged, empowered, responsible! I want to get educated, because I’ll be on Medicare for the rest of my life. And I want to approach the education from the patient’s perspective … not what the system wants to tell me, but what people like me have found necessary.

So, you who’ve been through it: what do I need to be aware of? What choices will I need to make?

I do know these things about Medicare: [Read more…]

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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…]