I’m visiting yesterday and today with some marvelous kindred spirits: Health Literacy Missouri (Twitter @HealthLitMo, Facebook). Their thoughts are very aligned with participatory medicine. It’s like we’ve been ships in the night – not crossing in the night, but sailing in parallel. And now we meet.

They’re a small non-profit in St. Louis, just 18 months old, and they’re doing rock’em sock’em great work at developing what I think is a key part of participatory medicine: patients’ comprehension of relevant health information, and their competence at doing their part in a participatory relationship.

For instance, here’s a (poor cell phone) snapshot from a great training they did this morning to introduce the new “Straight Talk With Your Doc”© patient instructions they’re working on:

It was taken during a “train the trainer” role play – a doctor and patient in an appointment, with a small group huddled around, observing and discussing. The doc was speaking a bit rapidly and in ordinary doctor-speak – a bit over the head of many patients. The patient (without any training!) was responding, empowered: “Could you slow down? I want to understand.” “Will I be on this medication forever?” etc. The slide says “Empowering Patients: A Health Literacy Toolkit to Engage Community Groups.”

I love what I’ve seen so far of “Straight Talk With Your Doc.” Even the brochure about it is extraordinarily clear in its writing. “Clear” doesn’t mean dumbed-down – it’s just plain good writing, good use of language, just plain competent.

And clarity is essential if we want to put knowledge – power and responsibility – in the hands of patients and families.

Gaps and Overlaps: Participatory Medicine and Health Literacy

One thing we’re exploring here is that our movements have a lot in common – empowering, enabling and educating patients so they can be engaged in their care. But they’re different: their Wikipedia page defines health literacy as “an individual’s ability to read, understand and use healthcare information” (that’s my idea of literacy), but continues “… to make decisions and follow instructions for treatment.” Aha: they include shared decision making (about which we’ve blogged), but beyond that it’s about “compliance” – following instructions.

In contrast, participatory medicine (Wikipedia) emphasizes networked patients as drivers  of their health. Clearly such patients need health literacy as part of their skills, so everything HLM is doing is relevant to participatory medicine; and, there are differences. Here’s hoping we do more together!

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