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!

DrSpockAn engaged patient plays an active role in his or her care. Or, as 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:

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.

e-Patient Skill 1: Wise up about health news.

A great resource is Health News Review. healthnewsreviewManaged 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.

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.

7 comments to For Patients

  • Tami Boehmer

    This is excellent information, Dave. I encourage my readers to not pay attention to statistics because they don’t apply to the individual and have referred to the Stephen Gould article, too. Too many people follow doctors’ orders when it comes to death sentences. They do more harm than good.

  • Kathryn Fell

    What is the name of the cancer wbsite you mention in your talks

  • Karen von Winbush

    Dear Mr. deBronkart:

    I am a silent member of the Society for Participatory Medicine (i.e. I listen to the discussions more than speak.) But the information you have provided here is so well timed for me to stumble upon. I hit this email to review instead of another and what was a rather down day, brighten. Thank you very much for the resource information.

    Sincerely, Karen

  • naetgirl

    There is an area of growing concern: people who have gluten and or casein and or lactose sensitivities who are living in group homes, retirement homes and those who are hospitalized for various reasons. For the most part, institutions, public and private are subjecting their clients to foods that are contrary to their special dietary needs.

    Additionally, those who subscribe to nutritional supplements, complementary medicine or holistic therapies often lose access to these therapies once they enter institutions at any level.

    I would appreciate being directed to any groups, associations, blogs etc that are focusing on advocacy for choice in healthcare. Thanks very much. naetgirl

  • Wendy

    I was recently referred by a neurologist for cognitive testing. I have been suffering for nearly 10 years from a 24/7 headache with sudden onset (New Daily Persistent Headache). The cognitive tester had me also fill out a PAI. I shouldn’t have. She then went through my medical history and came up with a diagnosis of “Somatic Disorder” because over the years I periodically explored treatments from many sources. Her assessment included words like “delusional”, references to my “vague” and “minor” complaints, “exaggeration of complaints and problems”, and that my “few close relationships may revolve around her somatic preoccupations.” These conjectures are completely false. She did not discuss this with me in person. She put these statements and a diagnosis in a report and MAILED IT TO ME. After seeing other providers (primary/chiropractors/neurologists), I am writing a rebuttal for my medical records, however she did not and will not include a copy of the PAI I completed–and from which she drew most of this damaging analysis, saying she will release it only to treating psychologist. I am not seeing a psychologist as I don’t need one (I have a pain counselor, that is all I need). How can I put on the pressure to get a copy of MY PAI?

  • […]           E-patient Dave deBronkart embodies all this. He describes himself as “a voice of patient engagement. He survived cancer in 2007, wrote a book, and became an advocate for health care that recognizes the wired patients’ new role. His web site has a helpful list of links. He is a mad tweeter, lives In New Hampshire and is in big demand on the health care speakers’ circuit. From his site: […]

  • […] this post to talk about the origin of the slogan and a little bit of my good friend Dave. Dave deBronkart (@epatientDave), an American kidney cancer survivor and a well known health activist in […]

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