Lesser of Two Evils or the Greatest Shot at Progress? You Decide.
If you’re current on the national conversation about patient engagement and participatory care, that is, including patients in shared decision making about their health you’ve probably read about (or if you’re lucky, seen) Dave deBronkart. If that doesn’t ring a bell, you might know him by his superhero name ePatient Dave (@ePatientDave). Among other things, Dave advocates tirelessly for patients to have a voice in the decision-making and delivery of healthcare. His career, pre-advocacy, was in corporate marketing and many of his ideas ring true to someone who understands consumer behavior, retail environments, and customer loyalty (said another way, everything healthcare needs to embrace).
“If people are not going to have access to their information then of course they are not going to be useful partners to their clinicians” opined Dave deBronkart in an interview last year with Healthcare Informatics.
So, why aren’t people going to have access to their information? Whose fault is that? Whose job is it to fix that (if, in fact, it needs fixing)? Who else should have access to that data? Opinions abound on the answers to those questions, but they’re indeed complicated. Actually, they’re constantly overcomplicated with policy and fear and what-ifs that lead to inaction. I guess the big question is whether it’s better to not do something and avoid potential issues or do something and address issues as they arise.
Let that linger for a minute…it’s important.
My team and I work with HIEs and related providers & networks to help achieve what we’re all hoping to achieve; better health through higher quality care at lower costs [insert magical unicorn here-it just feels right]. Stay with me on this one…The daily deal-breaker here? Consent to share medical information! Seriously, this is a misunderstood issue! In my last post, I complained that perfection can kill progress but in practice, even once you’ve arrived at good-enough, consent can be a killer to an otherwise well-intentioned healthcare ecosystem. Stepping off my soapbox, I had a thought…
I tossed out an idea to a colleague of mine. Instead of waiting for lawmakers on capital hill to figure this out, let’s create a completely voluntary database to track National Universal Consent or the desire for Open Medical Information (Does OMI = TMI?).
I know, I know. It can’t work. It’s been tried. My insurance will be cancelled. If not, my premiums will increase 400%. My employer will fire me. My spouse/S.O. will leave. My dog will probably run away. Cats and dogs will live together — mass hysteria!!!
Joking aside, someone who I love and trust dearly pointed out that there’s plenty of precedent for corporations to act in badly when data suggests that doing so will save the bottom line. She cited large numbers of insurance companies pulling out of Florida in the wake of Hurricane Andrew as data suggested more disaster was likely in the seasons ahead. Indeed, we make decisions both corporate and personal based on the available data at hand, and also within our own societal, legal, ethical, and yes, financial beliefs. When something happens as it did in Florida, how do we respond? With a bottom-up, grassroots, consumer led outcry against evil corporations? Maybe top-down regulatory, punitive legislation from government? Perhaps a mix of both?
Getting back to the National Universal Consent or Open Medical Information models I’m suggesting that we create a mechanism for people like me and ePatient Dave (and I bet, many others) to sign up and say “use my data, share my data, learn from my data, cure me, cure him, cure us, let’s actually make this better and put down the fear that the sky is actually going to fall.”
What would actually happen? Would my health insurer double my premiums or drop my coverage? Would my employer decide to fire me? Would my neighbor not let her kids play with mine? Would it create a black market for good and services that I need to treat my [whatever]? Would we spend lots of time ideating lists of really bad things happening without evidence that bad things would, in fact, happen?
Or should we boldly go ahead and do things like that, accepting a few truths? Truth one: this won’t work for everyone (but it will work for lots of us. Millions? Tens of millions?) Truth two: Some dirtball somewhere will exploit it (That’s only true of every industry on the days that end in Y. No real worries there). Truth three: the unknown is scary as hell.
Which is the lesser of two evils? Doing nothing out of fear, or doing something with potential risks and solving the problems that arise along the way? Which is the greatest shot we have at progress in healthcare and health IT? You decide.
