For the last several months, at least since Amy Tenderich, Jane Sarasohn-Kahn, and I served on a panel for the California Commonwealth Club, when people have suggested I read this book or that book, I have said, “Amy Tenderich’s book is at the top of my list, that’s what I’m reading next.”
And I stuck to that promise.
Why? The medical literature I read usually talks about patients (people) in the abstract/third person, which is great for focusing on the science (sort of, I’m not sure anymore), but maybe not the art. That and the fact that before Amy, Jane, and I went on stage, I noticed that Amy checked her blood glucose and had a protein bar ready to go in preparation for our hour-long discussion. There are things I am not going to understand about patients’ health experiences if I don’t listen to their experiences to start with.
I decided to combine the reading of this book with 2 experiments for myself. One, to use Twitter to write notes to myself about the book, two, to complete a board certification module for my specialty (Family Medicine) after reading the book. For the first experiment, there’s a good record of the first several chapters here. Part way through I thought that this was probably not as relevant to people following my Twitter feed as me, so I stopped. I would do it again, though, because the notes are helpful, maybe from a different account.
As you can tell from the linked notes on Twitter, I enjoyed the book and think it added a lot to my knowledge. Believe it or not, there are some details about some of the things we do as doctors that are not really explained to us except in the experiential part of doing what we do, such as how to organize the care of a condition, from the big picture. The authors laid that out extremely well using the diabetes health account concept. Diabetes was never taught to me that way – it was kind of a jumble of all the different diseases a patient can get and how to prevent them, not about how to organize and focus efforts. Leave it to a patient to do that because they don’t just have to tolerate having these conditions – they live with them.
I also noticed that a book written for and by patients doesn’t start with pharmaceutical therapy, it starts with knowledge, which may be the opposite way health care thinks about approaching condition management. I have to further celebrate Amy’s approach to thinking about diabetes in non-militaristic terms. The war analogy is pervasive in health care management (“front line staff,” “triage”) and I think it sets up the wrong type of relationship behavior with patients behind the scenes. It is great to see a patient confirm from their experience that it sets up the wrong type of relationship behavior with their condition:
People often refer to experience with a disease as a battle, such as “her battle with cancer..”…We think think this reference is wholly inappropriate for diabetes – one of the few chronic diseases with which patients have the power to both feel physically well day to day, and to live a long and healthy life….If you think of your diabetes as a battle, you’ll always be stuck in a miserable war. Make peace with your diabetes, and you’ll be at peace with yourself.
(let’s also stop using battlefield terms behind the scenes, we are not at war with patients, we are at peace with them)
As helpful as this book is, I think there’s great potential for a sequel (with Amy’s perspective). There’s new information about the value of home blood pressure monitoring, and new ways to check for retinopathy that don’t require a trip to the eye doctor. In addition, there’s now information about some of the newer drugs mentioned that may cause their harms to be underemphasized in the book. And I think Amy would be well suited to expand on some of the Web tools that are out there, including her very own, Diabetes Mine, and how they are helpful, from the patient perspective.
These are minor critiques, and actually not critiques of Amy, because it’s the job of doctors to have the most up-to-date information (and provide it to patients) in actual health care experiences. This brings me to a closing thought, which is that reading about the work of Amy and other leaders like her makes it clear that Health2.0 is not about shifting the power away from anyone, it is more about valuing the contribution of each role. As Amy and I discovered after our talk at the Commonwealth club (“you mean, you didn’t know the answer to that question either?”), neither of us is the true expert on everything, but we are both necessary, and I think it’s very valuable for a health professional to know how necessary the patient is by listening to their experiences.
Now that Amy has done a great job (truly!) in making it clear what someone with diabetes needs to focus on most, my follow-up is to look at some of the online tools available to help with that. Amy’s approach seems to lend itself well to a tool for health that’s as straightforward as mint.com is for finances. I will write on that in a future blog post.