Randy Pausch, empowered patient / participatory medicineComments on: --

By: Joshua Seidman

Joshua Seidman — Tue, 13 May 2008 20:20:51 +0000

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.

By: Gilles Frydman

Gilles Frydman — Tue, 13 May 2008 03:29:50 +0000

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.

By: Dave deBronkart

Dave deBronkart — Mon, 12 May 2008 22:21:40 +0000

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?

By: Ted Eytan

Ted Eytan — Mon, 12 May 2008 21:05:51 +0000

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

By: Gilles Frydman

Gilles Frydman — Mon, 12 May 2008 16:12:39 +0000

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.

By: Susannah Fox

Susannah Fox — Mon, 12 May 2008 14:55:32 +0000

Here are some of my favorite stories from a survey of ACOR members which we conducted in preparation for E-patients With a Disability or Chronic Disease:

"After diagnosis it seems everyone has the same experience of shock, dismay, etc. Having the ability to speak with others who have experienced the same thing is invaluable. My greatest fear was dying at 46, not seeing my kids get married, and not seeing and holding my grandkids. I guess I automatically assumed the worst, but I think most of us do. Talking to others who have received the same treatment and are surviving fine 10 to 12 years later really gave me hope. Suddenly the diagnosis didn't mean I was going to die young, and I found out that my particular type of leukemia is not only highly treatable, but also has a fantastic cure rate. I went from being anxious and depressed to being hopeful, and that change has made all the difference."

"After my hysterectomy, I went for post-op. The gyn who performed the surgery had a pathology report and read the diagnosis (low malignant potential) without explanation, and glossed over it. I went home and immediately searched the term on the internet. Imagine my surprise when the first site in the list was the cancer center at UPenn! Nothing like diagnosing YOURSELF. The doc never mentioned the C word. Through further study, I found [an online cancer group], who sounded the battle cry: ‘Get thee to a gyn-onc.’ That was nearly 8 years ago."

"I wasn't sure whether or not something I was experiencing was a side effect of treatment, or possibly a symptom of a different illness. I asked my doctor and he didn't think it was a side effect of the treatment, so I looked through the archives of an online community and found someone else had asked the members about the same issue. I learned that many others had the same side effect and their doctors told them how to avoid or care for it. I showed my doctor printouts from the online forum and he was appreciative of receiving the information and said he'd share it with his associates in case anyone else had been asked about it."

"I have seen pictures of other people suffering from my same disease. A picture is worth a thousand words. I have never seen another person who has my disease face to face."

"I have too many stories to recount. My wife was paralyzed from a plasmacytoma wrapped around her spine. This happened gradually, while we were under the care of a hematologist, oncologist, and other doctors. We went from specialist to specialist and it wasn't until she was unable to stand that one finally did the full MRI of the spine that should have been done to start with. They had done MRIs but all too low. Recently on the list a new person described his wife’s symptoms. They were identical to what my wife's had been. I advised him to demand a FULL MRI of the spine and they found a plasmacytoma on her spine. They caught it in time to avoid the paralysis my wife has suffered. I feel good about that."

That last comment always makes me catch my breath -- "I feel good about that." I should say so.