Chapter 12 of Randy Pausch’s best-selling book The Last Lecture opens with a classic anecdote of what it looks like when an empowered patient practices participatory medicine with an equally participatory care team:

CT scans revealed I had pancreatic cancer, and it would take me just ten seconds on Google to discover how bad this news was. Pancreatic cancer has the highest mortality rate of any cancer; half of those diagnosed with it die within six months, and 96 percent die within five years.

I approached my treatment like I approach so many things, as a scientist. And so I asked lots of data-seeking questions, and found myself hypothesizing along with my doctors. I made audio tapes of my conversations with them, so I could listen more closely to their explanations at home. I’d find obscure journal articles and bring them with me to appointments. Doctors didn’t seem to be put off by me. In fact, most thought I was a fun patient because I was so engaged in everything. (They didn’t even seem to mind when I brought along advocates – my friend and colleague Jessica Hodgins came to appointments to offer both support and her brilliant research skills in navigating medical information.

E-patient / participatory principles spotted in action here:

  • Being actively engaged in your care
  • Getting in action to find out everything you can
  • Not being afraid to asking questions
  • Not being afraid to hypothesize – to wonder what might be going on
  • Doctors who like patients being engaged in their case
  • Bringing along advocates
  • Doing additional work outside the appointments (so not all of your wondering takes up the doctors’ time)

I don’t know if Randy Pausch even knows the terms “empowered patient” or “participatory medicine.” My point is just that this is a perfect illustration of what participatory medicine looks like, on the hoof.

I invite everyone – bloggers and guests – to post similar anecdotes of participatory medicine spotted “in the wild.” Stories like this help everyone recognize what we’re talking about. (Counter-examples are welcome, too, to show what it looks like when participation is discouraged!)

  • Susannah’s 3rd example reminds me of an important and completely unreported aspect of participatory medicine. Many, many times patients or caregivers act as information proxies, transferring important clinical information from a specialized medical practice to a less knowledgeable one. I am quite sure no study has ever analyzed the transformative potential of this simple activity but anecdotal evidence shows it is very real. As usual for internet mediated transformations of the healthcare system the cost is either nil or very small and the impact can be profound.

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  • Wouldn’t it be wonderful for there to be a curriculum in patient & family participation in medical schools/residencies, too. In my training I was never taught participation or non-participation, just through example that non-participation was the norm. Norms can be changed, as you’re demonstrating.

    Participation can also extend to improving not just a person’s care, but the system around it. For an example, we invited one of our members to participate in an improvement activity, and blog her experiences about it.

    -Ted

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  • So how does one start to develop such a curriculum? To whom do you go, if you want to propose such a thing, or offer a curriculum?

    This isn’t the same as that, but: last October, when I attended a “patient day” at a KCA (Kidney Cancer Association) conference, I was pretty grossed out to realize that it wasn’t at all a patient-centered day – it was a 100% doctor-centric day, with all the good presenters doing their best to present what THEY think & talk about, instead of just asking the consumer (the patient) what THEY’d like to see.

    I went home and drafted a curriculum outline of my own, things I wished *I* had heard immediately upon diagnosis. From my journal, 10/27/07:

    • Cancer is no longer a death sentence. 
    • The importance of your attitude and feelings 
    • Understanding the statistics you read 
    • Creating a support community of your family 
    and friends 
    • Taking care of the caregiver 
    • Online resources-not just medical information, but social resources too 
    • Advocating for your own care

    I sent it to the KCA, explaining why what doctors want is valid but isn’t the same as what patients want. I even offered to develop the content for them. No reply.

    Mind you, this was three months before I’d ever heard the expression “e-patient.” So you can see why I jumped out of my skin when I discovered this site in January – it was quite a case of finding people who were already talking a language I thought I alone was speaking.

    SO, it’s with some seriousness that I ask, how does one go about getting a curriculum into existence?

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  • Ted,

    I am fascinated by the idea of a participatory medicine curriculum. I spoke with some people at one of the country best school of public health about such a curriculum a couple of months ago and think there was some real interest. In order to make this a success you need to find a really forward looking medical school and an equally forward-looking school of health communication, ready to work on developing this curriculum of a different kind.

    I am also communicating with an organization setting up the first curriculum of health advocacy. So, there is definitely some activity in the direction you are considering.

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  • This reminds me of what I wrote about on http://www.IxCenterBlog.org a couple weeks back about my experience with my son’s asthma attack. Going through the experiences ourselves is definitely the best way to learn about it–even though we would never wish it on ourselves or anybody else.

    It also reminds me about the challenges of communicating what we mean by “participatory medicine”–or for that matter “information therapy” (Ix) or “shared decision making” (SDM). That was the subject of the most recent IxCenter white paper, which attempted to bring some ideas to that conversation. Getting over the semantics and communicating about better communication is something we still need to figure out better.

    Lots of innovative ideas for how to advance participatory medicine will be shared at our 7th Annual Ix Conference, “WIxRED: Next-Generation Patient-Centered Care.” Among other things, I’m particularly looking forward to hearing from some “real patients” who will be there to share their stories.

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