Recently I was in D.C. at the Health Datapalooza conference giving a presentation on Pictal Health, the company I’ve been starting to help patients visualize their health journey so they can communicate better with their doctors. After I finished talking, someone stood up and asked, “are you worried about the quality of information that patients give you, since they’re known to be poor historians?”
I’ve gotten this question many times recently. And my answer is: no, I’m not worried about the quality of information I get from patients, and furthermore I don’t believe in poor historians. Let us discuss.
First, a little background on how I work with people. To start with, I take as much time as needed (usually multiple hours) to listen to their whole story, ask questions, and take lots of notes. The story often unfolds over multiple conversations, and my role is to capture all the details and organize them. Next, I create visuals to represent what they’ve told me; then finally, I prep the patient on how to print and use these visuals effectively in their next appointment.
In short, I’m building a visual health history based completely on patients’ memories and (sometimes) their personal records.
It’s true that people have a hard time remembering everything that happened over the span of their life, at least at first. Their stories are often meandering; they jump back and forth in time and from topic to topic. As we talk, my job is to stick with them and take copious notes, which I will sort out and organize later. Sometimes people give me conflicting information; was the surgery in 2007 or 2008? Did you take the drug for 10 or 12 years? We talk it over and they usually come up with the right answer — or close enough.
‘Close enough,’ you say?
Yes — I don’t care if the information behind these graphics is 100% accurate. It’s the patient’s best approximation, after they’ve thought about it and talked with me for many hours. When events happened 10 or 20 years ago, often the patient is the only source of information; there is usually no electronic record going back that far, and doctors’ offices are only required to keep health records for a certain number of years (in Michigan, where I’m from, it’s 7; in Vermont, where I live, it’s 10 years.)
What’s worse: for a patient to bring a well-thought-out graphic that represents their whole story, to the best of their knowledge, or for them to show up to an appointment as a ‘blank slate’ and try to tell their story without any prompts?
I don’t believe that patients are poor historians. I’ve found in fact that they are good historians, as they narrate their life and their past, and this is what has enabled me to create such detailed health history graphics. It’s natural that these stories need time to emerge and take shape. Humans, at least most of us, are not able to chronologically and methodically recite detailed, complex events from their past. Even if they did, the humans on the listening end would have a difficult time building a picture in their minds — thus Pictal’s graphical approach.
One more thing — there are people who struggle with cognitive or memory issues that make it difficult for them to focus or recount information from their past. I’ve worked with some of them, and in these situations I’ve often relied heavily on a caregiver to fill in the gaps. I wouldn’t label this type of person a poor historian; I’d simply say they need help and additional time to articulate their story. And as the listener, it’s my job to help them construct that story, no matter how organically it emerges.
Here’s my stance: instead of a huge population of poor historians, what we have is a poor healthcare system and poor processes that do not allow enough time for people to be completely heard.
What do you think? Drop me a note in the comments.
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