One of our purposes e-Patients.net is to help people develop e-patient skills, so they can be more effectively engaged in their care. One aspect is shared decision making. A related topic, is understanding the challenges of pathology and diagnosis. Both posts teach about being better informed partners for our healthcare professionals.

I’ve recently learned of an another topic, which I’m sure many of you know: practice variation. It’s complex, the evidence about it is overwhelming, and its cost is truly enormous. I’m no expert at it yet, but I also know it’s important, so let’s get started. Corrections welcome.

Here it is, in  a nutshell:

• Very large parts of healthcare are delivered inconsistently from area to area.
• In other words, the care you get depends on where you live.
  • That’s right; very often, care decisions aren’t based on some objective standard of care. The same patient in a different local area might or might not get a prescription for treatment. Very often.
  • Which one is right? Is one overtreated, or is the other  undertreated?
• This isn’t a matter of economics: it’s a matter of local medical practice.It cuts across all economic levels.
  • That’s why it’s not called discrimination, it’s called practice variation.
• The people involved – the doctors – mostly don’t know they’re doing it.
• Bottom line: depending on where you live, you may be getting care you don’t need – hospitalizations and even surgery.
  • Since both of those carry risks of infection and even death, e-patients need to be aware so they can make informed, empowered choices.

Examples:

• For decades, tonsillectomies were performed in some regions 3-4x more often than in others. (Even between neighboring towns.)
  • Here is a seven page paper from the United Kingdom showing a threefold variation in how many kids got tonsillectomies. It’s from 1938,and Dartmouth researchers found the same in the US in the 1970s and 80s.
  • The end of the report carries the nasty impact: in one year the nation had sixty deaths from tonsillitis, and over 500 deaths from tonsillectomies – most of them children. Unnecessarily dead children because of this issue.
• The same has often been true with hysterectomies. And gall bladder surgery. And coronary bypass grafts. And many other things.
  • A current non-US example: a post on the NPR blog, by Chris Weaver (@cdweaver) of Kaiser Health News: UK citizens in Oxford are 16 times more likely to get a particular type of hip replacement than similar people in London.
• For any given condition, your odds of being hospitalized are often proportional to how many hospital beds are in your area.
  • Yes, that’s true after controlling for demographics, severity of illness, everything.
• At the end of life, your odds of dying in an ICU are proportional to how many ICU beds your region has.
  • I’m not making this up; this is well-vetted, carefully-culled data, controlled for confounding variables. For any given illness, your mother is less likely to die at home – even if she requests it – simply depending on how many ICU beds your local hospitals have.
  • There are tons of data to support this.  It’s been validated and cross-checked every which-way from Sunday, for years and years.

Yes, to a large extent, recommendations for some types of surgery and hospitalization are driven by local superstition and the mere availability of empty beds (or a particular type of specialist).

This is generally not medical plundering. Doctors generally do not know they’re doing this. (I imagine some do, but this is not a matter of rooting out greed – there’s a bigger issue of widespread denial about how things work.)

This is by far the hardest healthcare issue to comprehend I’ve ever seen. Neither the problem itself nor its intractability – its resistance to change –  make any sense to me. Most of the people involved can’t even believe it’s happening – even though they’re doing it, and the evidence is clear.

When that happens, it’s a sure sign we’ve been overlooking something big. And our efforts to argue for change are doomed until we understand the actual situation.

Impact

I see two major impacts.

• Cost of unnecessary hospitalizations.
  • Cost to society
  • Cost to the patient and family for the care
  • Lost income
• Risk of harm, including infection and death.
  • And the cost of those complications.

E-patient takeaways

Smart people have been trying to change this for decades, and it hasn’t changed. While they work on it, the matter is in our hands. In my view empowered, engaged, educated patients need to:

• Realize this happens
• Educate ourselves about the region we live in
  • Information is available about which areas are high-utilization. More on this in upcoming posts.
• Get to work at spreading the word.

As I said, this is all part of a larger issue, SDM – shared decision making, which is a bigtime participatory medicine topic.

Dave deBronkart, also known as e-Patient Dave, blogs at e-Patients.net and is the author of Laugh, Sing, and Eat Like a Pig: How an Empowered Patient Beat Stage IV Cancer and Let Patients Help!