I went on the journey, lived to tell about it, and now I’m telling others what they can do. Gilles built the road on which I traveled.

As our respective comments often show, I know what it’s like to be in that pipeline, gathering information, speaking up, and making choices. Gilles knows what it took to create the infrastructure I’m talking about.

He’s not a statue kind of guy (at least I don’t think he is), but there’s a statue of him in my mind. And if I were starting a project to create something in this arena, I’d sign him up as an advisor in the “What’s it gonna take to make this work?” department. See above for one example.

Hell no!

1. Never avoid empowering people.
2. Who are you/we to tell people what they should do? (Seriously.)

I’m seeing that there’s a meta-level of empowerment, perhaps supporting people in seeing that they even have a right to want something in the first place.

I’m writing in a hurry here so maybe this is off, but the image that keeps coming to mind every time I think about patient empowerment is what happened with women ~40 years ago. My high school athletic director *quit* when Title IX was passed, and at the time a lot of girls said they didn’t know what the big deal was - sports belonged to boys, they felt. (Many others felt differently of course.)

My commitment is that people know (I mean really know) they have a choice and they can take action. Beyond that, though, if an informed empowered person chooses to live fast (or ugly) and die young (or ugly), who am I to say they’re not allowed to?

Last year in my crisis I was sometimes clear that I had a choice about whether to let myself die or not. It didn’t take me long to make my own decision about that but I did know I had the choice.

I know that research is being conducted to try to address the potential for higher compliance in populations of informed patients. We know that a higher level of health literacy is associated with more knowledge of diseases and self-care, better self-management skills, higher medication compliance rates, lower rates of hospitalisation and better health outcomes. I have never read that empowered patients are worse patients. On the contrary! Well, in fact, I am sure they are worse patients if they are treated by mediocre doctors or any doctor unable to adapt to this new health world order.

Is the alternative in that scenario that we avoid empowering people so that we can make sure they always do what their doctors tell them?

Ted

It may be hard to imagine that this would be permissible - extremely humbling with regard to one’s commitment to save the world. What do you think?

So talk to me about high blood pressure. Take a look at what we’re planning and give me some ideas about how to involve expert patients and each other in achieving good control and preventing heart attacks, strokes, and kidney disease. Only 35 % of people have good control, even though we have the ability to control it 100 % of the time. My feeling is that there’s a lot more to it than prescribing a medicine and telling patients to take it.

Something tells me we can do better with the help of patients,

Ted

the “just like mine” is not enough. What Dave did not mention is that the value comes from the informed conversations with people dealing with a similar condition. That’s why you always need the help of an expert and completely engaged patient to start and manage a high quality online community. I think the same will apply to your CHF project. You will get a totally different level of quality feedback from an expert patient because that patient has already been thinking about many, if not most, of the issues related to his/her care and has reached a high level of digital health literacy.

I cannot BELIEVE that nobody has yet programmed a computer to do such a simple yet vital thing. And from a Web 2.0 business perspective it would attract gobs of traffic because its members would naturally keep coming back.

Anyway: as far as I’m concerned, for less-common cancers ACOR is the answer. (I presume there are large communities for common cancers like breast and lung, though I haven’t checked.) But for non-cancers, not so. Like, I have a relative with a thyroid issue and another with an orthopedic issue; they asked me where to find a peer community, and I was stumped.

Why shouldn’t every patient in the world be able to find one?

You are ramping up my energy to include some sort of “just like mine” component to the Connectivity for Californians with chronic illness work - it should be more than connect me to my doctor (even though that’s important too), thanks a ton,

Ted

I’m increasingly intolerant of the insistence of MD presenters to stick to the latest statistically validated numbers even when those numbers are out of date (not based on today’s treatments). If they would just ask any empowered patient “What do you WANT to have answered,” they’d hear: “What do do I do now??”

You’ll NEVER get that from a peer-reviewed journal, but you can get direct answers from people in your shoes.

There’s a story that when DocTom Ferguson was invited to talk to first graders, he asked in advance what they’d like to hear about. (Yes, first graders!) Lots wanted to know about stethoscopes, so he brought stethoscopes for everyone; one girl wanted to know about blood, so he brought a microscope and slides.