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.

It’s the stuff that inspired the book, in part.

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.

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.

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.

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.

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.

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.