Warning: Do not read The Decision Tree unless you’re ready to make some kind of change in your life.
Thomas Goetz catalogs the recent advances (and setbacks) in medicine & personal health, but also maps out the possibilities for how things could get better. He does this so convincingly that you can’t believe it’s not already taking root: clear labeling on drugs & food, passive tracking of our exercise routines, open access to our health data.
There are enough lessons for self-improvement in the book that I found myself comparing it to What to Expect When You’re Expecting, but since Goetz focuses on the big picture (prevention, diagnosis, disease management) it is more like What to Expect When You’re Expecting a Long Life.
Unlike the pregnancy bible I read 10 years ago (and more than once threw across the room), Goetz doesn’t preach from a lofty whole-grain pulpit. He doesn’t think we should ask people to do more, nor should we scold people for every mistake they have made, but rather we should give them tools to make better health choices.
For me, it sparked a renewed interest in tracking my own health. I’m not going all Quantified Self yet, but I am interested in a few key variables, like how far I run, my weight, and my cholesterol levels. And yep, I’m just writing things down, as Amy Tenderich recently wrote. That’s participatory medicine, too.
Readers of this blog are probably familiar with many of the companies and studies Goetz profiles in the book: the Framingham Heart Study, CureTogether, PatientsLikeMe, Nike+, 23andMe. I learned new things about each one and now have better talking points when I’m explaining Health 2.0 to newcomers. In fact, I got the feeling that this was a reason why Goetz wrote the book: for all those public-health nerds and personalized-medicine geeks who wish they could explain to people why it is just so awesome that we can calculate our risk for heart disease or cancer. You know how MDs are always asked for cocktail-party diagnoses? This book is for all the MPHs who stood nearby wishing that someone would ask them for on-the-spot health advice.
If I’ve sparked your interest in the book, check out the following:
Brian Ahier’s review: Data not drugs
Kent Bottles’s review: Check Lists & Decision Trees v. Spontaneity & Imagination
Short video introduction: The Argument for Better Health, in 3 Minutes & 53 Seconds
So, I have to say it. I am really, really worried about what appears to be a deterministic vision of health, at least in the video about the Decision Tree.
It’s all about “we can control our health, if we chose”! That, to me, a long term witness of the stories of cancer patients, is a horrible lie and an even more dangerous concept.
It is very easy for those who do not have weigh problems to blame obese people. In a few years it becomes very easy for society to blame ALL obese people for their health problems. Just as society has made all lung cancer patients pariahs because “they caused their cancer”. Except that for most smokers the damage was done before society knew how dangerous tobacco is. And except for all the lung cancer patients who have never smoked. And except for all the smokers who couldn’t stop.
People do not chose to be sick or healthy. Even those who are sick due to lifestyles gone horribly wrong. As is becoming clearer every day most obese people have not become obese by choice. Assigning blame, the way the video (and I assume the book) seem to do, may be a great disservice.
Understanding health issues and believing that once you understand them they are actionable is, IMHO, a jump many in the new “data is king” religion are doing, long before we even start to understand what data can really do for us.
It reminds me a lot of the debate that took place years ago when the proponents of the deterministic, linear vision of genetics were fighting those who believed in the central importance of epigenetics. And just a few years after the human genome got sequenced we are now going back to the importance of epigenetics in medicine.
All I can say is: Read the book, don’t judge it by the 3 minute video.
As I wrote above, Goetz doesn’t preach or claim you can “control” your health outcomes – he offers great stories and a new take on an old way of thinking about how to make health decisions.
Hello Gilles –
Like you, I’m generally suspicious of the rhetoric that offers quick fixes and simplistic solutions to health. The video is a mere teaser, a 3-minute provocation for a 300-page argument. In addition to noting the opportunities of engagement – what might be called “control” – the book goes to great lengths to tease out the challenges of engagement.
For one thing, I look at research that shows how dangerous it can be to send people into the wilds of the Internet without guidance or direction. And I look thoroughly at how a simplistic conception of health information leads to the obesity crisis you rightly note. In short, if we simply wag our fingers at people and shake science in their faces, that will get us nowhere.
Rather, what I attempt to do in the book is to explain how to connect information with behavior, and how targeted information can engage people far better than generic information. That engagement creates what researchers call a sense of “control” – and that control can be a powerful tool in turning momentary action into sustained lifestyle changes.
But I must say I disagree with you when you say “people do not choose to be sick or healthy.” This, to me, perpetuates a dangerous sort of passivity, where we are but subject to fate’s whim. In fact, we do have a great deal of influence over our health – it’s ours, after all – and we can make all sorts of choices that will hurt or help our health. These may not be easy choices or involve easy changes, but we do play a role. And when we recognize that and take advantage of that, research has shown that, on average, our results tend to improve. Not for everyone, certainly, but for many.
Needless to say, this is why I wrote the book – and I can only hope that others don’t assume that the book and the video are one in the same. If you read the book, you’ll find to your surprise that we’re pretty much on the same page.
Okay, I haven’t read the book. I saw the video. Yep, great stuff for those who aren’t sick, who have preventable health issues, who can avoid stress in their jobs, etc. etc.
I am so sick of people telling me what the “right” way to eat is or that I need to exercise… not an option for someone with asthma and a massive history of asthmatic bronchitis. But the little decision tree I clicked for weight (just out of curiosity) only asks if you are WILLING to exercise. It doesn’t ask if there is a reason you don’t (oh, can’t breathe…).
Similarly, as a cancer survivor, most statistics are already useless for me. And then I wonder, does anyone really know what food does to body chemistry? There are so many conflicting reports… and if anyone tells me butter is inherently bad, again…
Did you know that if you avoid carbs almost entirely you can eat enormous amounts of protein and fat and improve your blood work vis a vis cholesterol? I’ve done it. Does that make sense? Does the food pyramid make sense? Does avoiding butter really make sense?
I may read the book; I may not. I am sick of people telling me that ultimately it’s my fault if I’m sick. And gaining less than a year of additional life by getting screened for hypertension (adds 139 days, apparently) seems just ridiculous. Do we want to live forever, or do we want to enjoy the life we live?
I’ve been screened and medicated for mild hypertension. I do go to doctors and have tests. I think the best thing I could do is minimize stress…good luck with that in my workplace.
Sorry for the rant, but this touched a (raw) nerve.
Terrific note, Deborah. I run into things like this sometimes when I speak (or write), and it’s important to be aware of how things land.
Question: did anything in this discussion (here) suggest the asthma IS your fault?
I hear you clearly about the general-public statistics being useless for you.
Ooooh – you liked my rant! :-)
In answer to your question, nothing suggested asthma is my fault. But nothing asked why I can’t exercise, since exercise is the way to longer life… and certainly something I don’t do much of these days.
Curiously, I went on a blues cruise and danced a lot (exercise) and didn’t have breathing difficulties. Maybe the solution to asthma is to move to a ship in the Caribbean? It came back when I returned home, alas. Hello, nebulizer.
Hi Deborah – I hear you on the “right” way stuff: I go to great lengths in the book to explain that this isn’t a one-size solution. Nor is the book all about prevention – though that’s where many of us can make some better health choices. Indeed, the last third of the book is about cases like yours, where people are navigating their way through treatment without any clear path, nor a perfect outcome.
What I do say is that it’s never too late to try to engage with our health, and to try to find a way to a good decision. It sounds like you’re already trying your darnedest, and I won’t pretend that there’s any single answer. One reason healthcare is frustrating is it doesn’t always reward effort; uncertainty means bad things can happen even when we do everything right.
But lots of people have stopped trying, or they don’t know where to start – and that’s where I hope the book can offer some guidance. Not answers, but guidance.
Thomas,
as you can see with Deborah’s reaction you have certainly hit a raw nerve. Or to be more accurate the 3 minutes video has hit the same raw nerve for both of us. Since I have been working with Deborah for at least 13 years, I find it interesting that 2 cancer online communities experts have the same reaction. There is something not right about that video! But you can rest assured I’ll read the book if I have the opportunity.
Now, reading your comment back on Brian Ahier’s post, I can say that I COMPLETELY agree with this statement: “The basic idea I’m trying to communicate is that engagement is essential to the process, whereever it begins – when people engage with their health, and do the hard work of using relevant information, they are much more likely to make better decisions and have better health.” And I’m sure that Deborah will also agree.
It is this essential idea that pushed me to create ACOR in 95 and then to advocate for the need for the Journal of Participatory Medicine after saying to many researchers at the NCI and NIH that we must actively work to foster the scientific assessment of the networked patient importance.
But, please, let’s remember that people get sick and die in many cases due to circumstances they cannot control. Forgetting that will remove the essential empathy in medicine and wil have dire consequences for the society as a whole.
Just have a look at this.
Gilles – FYI – I can’t link to your “just have a look at “… it won’t open.
I didn’t mention this in my post, but Dave and Gilles already knew I was a long-time patient/acor listowner and had a great deal of familiarity with the issues.
I know the value of having information and of good communication with medical professionals. The value of fighting for what you need. The question is: why I should have had to fight?
And as Gilles said – many people get sick due to nothing they did. I am one of them (I think). The ovarian cancer patients on my list often try to significantly influence future outcomes with food choices, or – even more – wonder what caused them to get diagnosed with cancer.
Bad luck and timing was the cause, I think, for the most part. Possibly bad genetic material. There’s nothing I could have done differently with regard to cancer.
Gilles – thanks for the considerate reply. And fwiw, you don’t need to remind me that people get sick & die due to circumstances beyond their control. I, like many people, have my own experience with just such stuff.
It’s the stuff that inspired the book, in part.
I think anyone who puts a little effort into their health and fitness will probably do just fine with the current system. With that said, it helps if labels are more clear and spell out the nutritional value. Perhaps McDonalds and groceries stores should require a label similar to that of cigarette packs on certain food labels. THIS CHEESESTEAK MAY BE HARMFUL TO YOUR HEALTH.
Thomas,
Now that I have had the time to read the book, I have to congratulate you! The book creates a good map of the emergent world of activated patients. That 3-minutes marketing video really doesn’t do justice to the book.
That is not to say that I agree with everything you wrote :-) I still say there is a bit too much determinism for my own taste. And, IMO, there is too much focus on data collection and not enough about the incredible power of the narrative, these 2 points being clearly related. It is pretty clear that you underestimate the power of classic online communities to promote the dissemination of scientific information and the acceleration of the research enterprise.
But I would really strongly recommend the book to someone who wants to learn about the effect of the network on self-help.
thanks, Gilles. I hear you on the power of narrative – I agree it’s an essential component of creating engagement. the trick is to have them both!