For Patients

Looking for a patient community? The world doesn’t yet have a great searchable database, but some of us have started lists. Here’s my start – contribute anything more you find!

An engaged patient plays an active role in his or her care. Or, as e-patients.net founder “Doc Tom” Ferguson said, “e-Patients are Empowered, Engaged, Equipped and Enabled.”

We who’ve become e-patients don’t wait for our providers to tell us everything; we get it in gear, we ask questions, we do what we can to help.

Don’t think you’re qualified? Consider the advice on the magnet at right:

Trust yourself.
You know more
than you think you do.

Radical new advice? No, it’s the opening line of Dr. Spock’s Baby and Child Care, first published sixty years ago, in 1946.

Convinced, but not sure where to start? As time goes by I hope to develop tutorial materials. If you have a project, or requests or ideas, contact me. It starts with this:
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Understanding what we read about health information

To take Dr. Spock’s advice one step further, you may not be a health professional, but you’re probably capable of understanding a lot more than you think. I’m committed to gathering and sharing as much as I can to help with that.

As you educate yourself, either through medical publications or through the mass media, it’s important to know that in both cases, some of what gets published is high quality but a lot is not, and you can detect the difference.

• A piece may be written from a biased perspective (even plain old paid endorsements)
• It may be fair but written imprecisely,
• It may have been written brilliantly but edited in a way that leaves the wrong impression. (Some editors are well trained but make mistakes; others aren’t scientifically trained.

In any of those cases, the words that reach your eyes may lead you astray. And when your health is at stake, the last thing you need is bad advice from a channel you thought you could trust.
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e-Patient Skill 1: Wise up about health news.

A great resource is Health News Review. Managed by Gary Schwitzer, a journalist with terrific medical experience, the site reviews health news coverage with clear comments that make it easy for you and me to learn how to read carefully and spot important missing information.

Modeled on Media Doctor Australia, which spawned Media Doctor Canada, Health News Review is also a great learning resource for writers, editors (and even bloggers!) who want to improve their science writing.
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e-Patient Skill 2: Wise up about the statistics you read. Learn how to interpret them.

When we’re in a crisis it can be hard to hear “We just don’t know what your odds are.” That can lead us to latch onto any available number, but it may or may not be useful information.

Statistics can be misleading. Sometimes it’s intentional (the old “lies, damned lies, and statistics” thing), but e-patients also need to wise up about interpreting statistics that are published with the best intentions.

See, the whole purpose of statistics is to give us useful insights into the unknown, by looking at things that happened in the past. It can work, if you have no better information and if the current situation is a good match for how and when the study was done. Those are the factors you need to look for.

In my own case, I read that the median survival time for people in my condition was 24 weeks (5-1/2 months). Does this mean “they gave me 24 weeks to live”? No.

• It means that in whatever study they reported, the middle patient died in 24 weeks.  It tells us nothing about any other patient.  They might all have died in 24 weeks, or everyone beyond the middle patient might still be alive today. You can’t tell, from the information given.
• The next problem was that although the study was the most recent published data, the circumstances were already obsolete. It takes years to design a study, start it, and watch people get treatment and then live or die. This is especially challenging when treatments are rapidly evolving: the most useful information may not have been published yet. And you may be able to help find it.

As yet another dimension, remember that statistics apply to populations, not individuals. Want proof? Consider this: the average person has one ovary. That’s absolutely true – but it gives you no useful information about any individual.

Here are some of my past posts on statistics:

• Making sense of health statistics – discusses a terrific 40-page article about how even writers, policymakers and even physicians(!) often misconstrue published numbers. The article’s long-ish, the post isn’t.
• Evidence-based medicine (“EBM”) – a topic every e-patient needs to understand, for what it is and what it isn’t. EBM is an important response to research that showed wide variation in how often various procedures were done. (Hysterectomies were one example that particularly turned my stomach.) Today the gold standard is to make care decisions based on evidence. This is good but it has its limitations.

And I’d be remiss if I didn’t cite the granddaddy of all patient-empowerment stats articles, The Median Isn’t The Message, by famed scientist Stephen J. Gould. Gould outlived the “median survival time” for his mesothelioma (eight months) by 20 years, eventually dying of something else – in other words, the disease didn’t kill him at all.

Personally, I’ve outlived my median survival by a factor of 5.8. So far.

Get educated, get engaged, get empowered. Get E.