Health and Medical News and Resources

General interest items edited by Janice Flahiff

[Partial Reblog] New series: Understanding and Guiding Medical Research

 

 

 

A patient having his blood pressure taken by a...

A patient having his blood pressure taken by a physician. (Photo credit: Wikipedia)

 

 

 

From the 1 September 2012 post at ePatient Dave

 

Some edits made, and new items added, late the same evening.

I’ve recently learned of some well-intentioned medical research that disturbs me so deeply that I think it’s time to get formal about teaching e-patients and their partners how to detect research that misses its target, even if it’s well intentioned.

Doing this responsibly requires a deep understanding of the purpose of research and its methods. So this is the start of a series in which I’ll lay out what I’ve learned so far, describe the problems and challenges and opportunities that I see, and invite dialog on where I’m wrong and your own experiences as patient or clinician or researcher.

If this succeeds we’ll have a new basis for considering questions of what to do and how to prioritize it, in this era of change in medicine – not just in research but in all of medicine, as we work on reducing our spend. My goal in the series will be to be as clear in my writing as I can, while being as verifiably accurate as I can, given that I’m no PhD or Pulitzer laureate. Critique and correction are welcome.

This first post is an introduction, with background reading.

Context: Patient Engagement

The context for this series is patient engagement: patients shifting from being “compliant” cars in a medical car wash to being responsible and engaged.

Empowered, engaged patients take responsibility for their health and their care. One aspect is being responsible for understanding, as best we can, the evidence that a recommended treatment is right for us. Sometimes it’s pretty simple, sometimes not; but the higher the stakes get, the more important it is.

With respect to research, there’s a big challenge: sometimes the published evidence sucks – even though it got through the peer review process and was approved by a big-name journal.

Of course not all evidence sucks. But if you’re considering whether to be cut open or eat chemicals (meds), you have a choice: trust blindly (“whatever you say, doc”) or take responsibility for understanding as much as you can.

As we’ll discuss, one big reason blind trust fails is that the evidence your doctor gets isn’t necessarily great, and most clinicians aren’t rigorously trained in how to scrutinize it. (They too are largely trained to trust the journal process.) So this is for them too.

Intended audiences

  • Patients and caregivers – the people on the receiving end of the treatment; the ones who make the decision to accept treatment.
  • Clinicians, for two reasons:
    • In a participatory relationship, the patient and clinician need to be on the same page regarding the basis for decisions, or one will think the other’s crazy
    • As I said, in my experience most clinicians haven’t been rigorously schooled in the weakness of the info they were taught to trust. (This isn’t an insult; see homework below.)
  • Health policy people (government and non-profits), because they need to be firmly grounded in reality, or they can’t possibly make policies that work in reality (eh?)
  • Insurance companies (commonly euphemized as “care plans” or just “the plans”), who decide what will get paid for.  (I know some insurance companies don’t mind paying for stuff that doesn’t work; they basically get a commission on all spending. But others do care what works and what doesn’t – some even have staff who help patients understand the options! They need to be well informed too.)
  • Others, I’m sure.

This will make some people unhappy.

It’s the unhappiness that comes from realizing the world isn’t what you thought it was. And the unhappiness that comes from realizing you have to adjust.

But ladies and germs, disconnects like that are what keep a dysfunction in place and make problems intractable. So, comfortable or not, let’s get on with it. The unhappiness I anticipate:

  • Some clinicians don’t welcome questions from their patients. (Others do.) In my personal experience most of the ones who object don’t realize how weak the evidence is.
    • I hope they’ll remember what I learned in school: all science must be open to new information. (As SPM co-founder and ACOR founder Gilles Frydman said in 2010, “All knowledge is in constant beta.”)
    • I know clinicians have many pressures including short appointments. This doesn’t have to be done by an MD; in my view of the future, every “medical home” will have coaches who can help assess published material.
  • Some patients really don’t want to hear that the science they depend on – which has indeed produced miracles – has also produced crap sometimes. They especially don’t want to hear that clinicians – their clinicians, who they know are good people – aren’t perfect.
  • In general, everyone wants certainty – doctors and patients alike – so it’s unsettling to know you can’t have it. (Even the best science has a chance of errors, and all science is subject to correction.)

Important: This is not a “we reject science” series.

  • love science. I personally am alive because of great medical research that created a harsh treatment delivered brilliantly by great clinicians at Beth Israel Deaconess in Boston. I love the training and clinical experience that made them able to save my life!
  • It included great laparoscopic surgery and orthopedic surgery developed by great skilled scientists and delivered by skilled, adroit surgeons & teams. Hooray for science!
  • But in the end, science knows that there is no certainty. They’re doing the best they can amid uncertainty. Heck, I myself live in uncertainty:
    • The best evidence (which is not great) says there’s a 50% chance my cancer will return, which would likely kill me
    • At diagnosis the evidence said I had 24 week median survival
    • On the flip side, the treatment that did cure me usually doesn’t work.

Bottom line: There Is No Certainty.

The art of designing, conducting and reporting research includes dealing accurately with this issue.Whatever you read, there’s always a chance it’s wrong.

In my view, the ultimate responsible patient understands this, accepts the uncertainty (as best a human can), and responds by saying “Okay, what are the options? And what are the chances they’ll work?”

If you fully understand that much research is shaky and deserves questioning, you can skip to the end and wait for round 2.  If not, read these past posts, because if you don’t realize there’s weakness, you have no reason to learn what comes next.

Here’s your homework.

Past posts establishing the need to be responsible for our decisions

These posts are from e-patients.net………
Click here for the rest of the post

 

 

 

September 7, 2012 - Posted by | Educational Resources (High School/Early College(, health care | , ,

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