Involving Patients: Her (Diana Forsythe’s) paper should be inscribed on cubicle walls…

…of all those who aspire to develop online systems for patients. – Chapter 2 – e-Patients

It’s not a norm (yet) in medicine to involve patients in the process of care or in improvement of the system. What that means for me and others like me is that we’re going to get lots of “why?” questions about this in everything we do. Most (let’s say, all) of them are going to be intelligent, rational ones, from people who want to improve our health system.

Some of the questions are coming from myself to myself, most recently in the context of the project I am developing with California Healthcare Foundation. I think it’s really important to involve a person (patient, employee, participant) in designing the work, and that I should observe them managing their condition in their native environment (in this case high blood pressure). I recently had to remind myself, “I just gave a presentation on 5 1/2 reasons why patients and families should be involved in their care. I know why.”

Well-timed support from colleagues helps too – enter Susannah Fox, one of my favorite patient empowerment observers and informers, who referred me to this article by Diana Forsythe about a migraine headache patient education software system that was designed by physicians, programmers, and ethnographers, to empower patients with headaches.

If you don’t have access to the article through your institution or purchase it from the link above, there’s a brief summary of it in Chapter 2 of e-patients. In her journey, Ms. Forsythe discovers that a planned intervention to empower patients has the strong potential to disempower them, by connecting patients to information “needs” developed by physicians and programmers only, and not needs stated by others involved in care, including the patients themselves, nurses, and other caregivers.

I added this to what I was asked/told at the Health 2.0 conference in San Diego in March : “Why are current applications only about one to one relationships – patient to doctor?” and realize that’s the “why?” that’s really important. Since it’s a reality that people are as likely to trust someone “just like me” as much (if not more than) their doctor, both have to be brought into the picture. Which means both need to be involved in designing the system.

On the topic of computer programmers, it might be tempting to interpret the story in the article as evidence that software engineers cannot express their coding (or other) creativity and need to be handed specific things to code. What I’ve seen in my own work is that the opposite is more effective – bringing more of the specialized team members into the patient experience is better rather than more shielding from it.

There’s an important clue about this – it’s noticed that several project team members have significant experience with migraines as patients but do not bring these experiences into their professional roles on the project.

Everyone has something meaningful to contribute if they understand (and observe) the customer’s experience, and it’s the role of project leaders to create an environment where this happens.


Ted, it's not just that people are just as inclined to trust someone "just like me" – it's that someone whose @$$ is on the line "just like mine" is a lot less likely to have their head stuck up the same place regarding what's important.

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.


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,


Glad to hear that, Ted. One thing the e-patient world REALLY needs is a go-to portal on how to find the "just like me" communities. I have that as a dream, but if someone else wants to create it, fine with me! Same for my "med minder" pill organizer idea.

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?


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.

Superb addition, Gilles. You put your finger on something that was bothering me about some "like me" communities that I've seen: sometimes they seem to consist of confused crowds. Thanks.

Allright gentlepersons,

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,


Here's a puzzlement to ponder: what if a given person says "Yeah, I know – whatever" and really doesn't care? Are we/you/us-all willing to empower people so much that we even let them choose when they can ignore their doctors?

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?


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?


There is unfortunately nothing new about the non-compliance issues raised by Dave. It is and always was an intractable issue. Patients have always had the possibility to not listen to the doctor's prescriptions for better health.

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 that we avoid empowering people

> so that we can make sure they always do what their doctors tell them?

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.

This exchange has led me to notice something that I always knew, and which is very much worth highlighting.

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.

Thank you so much for the Diana Forsythe reference – I don't know how I missed that body of literature, but it's good stuff and brings together quite a few of my interests (ethnography, informatics, med ed, sociotechnical issues, patient-centeredness).

I also just wanted to give you a general shout-out: love what you have to say!

Hi Jillian,

Thanks for the comment and the awesome shout-out! I like to keep a good foundation of these going for the challenging times :). Ethnography rocks,


Ted Eytan, MD