I was recently interviewed by PJ Mierau, founder of the PatientCritical coop in Canada, for his podcast. PJ came up with a new metaphor for how patients handle varying amounts of information, when their abilities or their capacity (due to illness) may vary: it’s a Web principle called “responsive design.” Below are some notes on that, and on patient co-ops. Here’s the episode, and here’s a rough outline:
- 2:45: It used to be that useful information was only available to people with special training; patients could know nothing esoteric. That’s no longer true.
3:30 The most difficult speech I ever gave – Jerusalem, 2011, speaking to Israeli doctors and lawyers. “Any doctor whose sense of self-worth depends on knowing everything is in big trouble these days. It’s no insult if a less trained person has seen a paper you haven’t. But there’s still no substitute for the physician’s training and years of clinical experience to put it in perspective.”
- 9:45 Sara Riggare’s great “one red dot” graphic, illustrating how her time with doctors is one hour out of the year; the rest of the year she’s self-managing her Parkinson’s, so their job is to help her do that – when they’re not around.
- 14:30 How the rate of change has accelerated insanely, which means things may no longer work the way they really did work in the past. (My favorite example is that a generation ago it was really hard for patients to access good medical information, but today we can, which truly changes what’s possible. That’s important!)
- Around 15:00 Responsive Design (see below)
- Around 22:00 how individual patient needs can change which treatment is the right choice. Often there is no single right answer. Get involved!
- Around 24:00: paternal caring (with the best of intentions) – paternalism is not always inappropriate! But when it’s used at the wrong times, it holds back progress.
- Around 26 minutes: the familiar “new dance steps” metaphor for changing relationships. (See the BMJ “tango” cover, “Embracing patient partnership” – from 1999!)
- Around 28: dealing with docs who don’t want patient input – “Be empowered enough to know what’s important to you,” and act accordingly (including “the magic incantation”)
- Around 31: the evolution of medical science and certainty – barely becoming scientific around 1900, then getting more scientific throughout the 20th century. And, now that the era of blockbuster drugs has ended, it appears patient contributions and preferences may be comparably important in further advances in best care.
- 34:40 “If [health] data is extracted from us and sold, and we’re not paid, we are literally being treated like livestock.” Think about that.
About responsive design (aka adaptive design)
Skip this section if you already know the subject. Responsive design is how web designers learned to cope with the reality that screen sizes are no longer predictable, the way computers used to be: today a website has to work on tiny screens and on big monitors and everything in between. Obviously, on a tiny screen you can’t see as much at the same size, so a website designed responsively will put less stuff on a tiny screen. And this involves making lots of decisions about what’s most important as capacity varies.
The Starbucks example shown here is a good illustration: see how things move around, shrink, or even disappear depending on capacity. This Google Image Search shows lots of other visualizations.
The same thing happens when a person is unwell. If your mind’s “screen” is reduced because of illness, too little sleep, malnutrition or anything, it affects how much you’re able to manage – so decisions must be made. What do you and your clinicians decide to prioritize?? Fascinating to ponder.
(Yes, I can imagine thinking to myself, “Whoa, my screen size is seriously shrinking. I better rethink things.”)
About patient-owned co-ops
There’s been a really interesting development in the patient world: patient-owned cooperatives are starting to spring up. I can’t speak for everyone, but having seen patients worry for years about getting paid by industry for our contributions, it’s just really interesting that these co-ops are starting.
I belong to one, Savvy Coop (Twitter @Savvy_Coop), started by my now-friend Jen Horonjeff. And recently I was interviewed by PJ Mierau, founder of the @PatientCritical coop. Look at these objectives, from their About page:
PROPOSED FOR 2017-2018
• Curated Resource Hub
• Audio interviews, stories & commentary
• National/provincial policies & working groups
• Members-only forums & events
• Member-approved petitions & position statements
• Patient scholarships to attend healthcare events
Really interesting, as I say – they’re organized and owned by patients with extremely modest funding (PatientCritical is $20 for a lifetime share, Savvy is $34, and each has mechanisms for people who really want in and really can’t pay), and focused 100% on what the patient members think is important. In Jen’s case, SavvyCoop collects “gigs” – paid participation in surveys, focus groups, etc.
Coops are distinctly different from traditional patient associations, whose purpose can too easily (and understandably) become “keep our own salaries funded, or we’ll be unable to do anything else.” Note, I didn’t say disease associations are corrupt – just that there’s an inherent tension in their setup, which does indeed sometimes lead to conflicts. In any case, in a co-op the priorities are set by the member-owners, not by executives.
And to put the icing on the cake, some coops (including Savvy, not PatientCritical) are declared to be money-making organizations, so as with a co-op grocery story, any profits that accumulate will go back to the members (aka the owners). (#GoCoops, says Jen! The movement is not just in healthcare.)
Meanwhile, Patient Critical accepts no outside sponsors. To ensure their focus on patient-centered advocacy, members’ lifetime membership fees alone fund co-op advocacy, creation of health literacy resources, podcasts and other outreach efforts.
In short, by law, patient-owned co-ops are beholden to nobody but their owner-members, which plays out in different ways, but in every case that’s really significant. It’s a real change.
As I say, keep an eye on co-ops – and keep an eye on how you do “responsive design”