|Yesterday at TEDxSV Thomas Goetz, executive editor of Wired Magazine and author of The Decision Tree, talked about a concept where individual decision-making will become paramount in health.For the past year, I've been working on a concept that explains how we might harness individual decision-making choices, and the control someone has over them (real AND perceived). I realized as I looked back through emails and blog posts that I've failed to clearly define this so others can get to work using it. I'll keep this blog post clear and concise in style, rather than verbose and metaphorical, in the hope that it will lead to an acceleration in how we talk about healthcare reform and 'meaningful use' of individuals' health data. The theory is something I'm calling Choice/Control Aware Care, and I believe it is the second generation of Participatory Medicine.It was born on the floor of @susanlindsey's kitchen when @mdbraber was visiting Maryland over a year ago. He and I were talking about how people make choices as patients, and what we might feel like we have control to decide when we're stuck in the hospital. My argument, which was illuminated using a whiteboard and some fruits, veggies, and tubs of markers (hey, I work with what I've got), is that people have far more choice and control over things in the healthcare system than we currently let on.For one, a person can always choose NOT to adhere to treatment...to refuse medicines, refuse a transfusion, etc. This is the 'null decision,' or 'do nothing.' WHY a person chooses the 'null decision,' for personality reasons, due to religious beliefs, or just plain old fear doesn't really matter (although it's an interesting research question for later) - what really interests me here is that people who choose the 'null decision' in health KNOW or perceive that they have some sort of limited control over what happens to them in the process of care delivery, if not over the outcomes themselves. This brings me to the second important tenet in Choice/Control Aware Care: we have more control (real AND perceived) in the healthcare system than is currently communicated to us by care providers.In addition to the "null decision" or 'do nothing' approach (which often happens in palliative care and end-of-life medicine including Hospice programs), there are a whole host of potential decisions - a smorgasboard of personal choices - that a person might make if the care conversation illuminated them.I have come to believe over the past year designing software programs that a more robust conversation and analysis of choices and control is absolutely necessary in order to incentivize healthier decisionmaking and measure how our connectivity in social networks helps illuminate choices others have made (as well as their 'contagious' influence on our own lives as detailed in the book "Connected").I've grown very, very tired of hearing policy makers and healthcare executives, in addition to healthcare bloggers, spout platitudes about how we get people to 'get healthy.'The short answer is this - we don't.They do. WE get them to be 'not sick' (hopefully). If we can accept our OWN lack of control over outcomes, then we may begin to accord individual decision-making (cognitive reframing and all those other nifty neuroscience tie ins we currently discount in health) the import it is due.This focus on individual, EVERY DAY decision making (and how these small microchoices add up over time to health or the lack thereof) is ABSOLUTLY necessary in order to revolutionize our healthcare system from one focused on 'sick care,' or the singular distribution of resources we bring to bear to encapsulate and 'cure' or 'fix' an episode of illness or injury, to 'well care,' or preventive medicine, which connects these currently disparate episodes across a person's lifeline and illuminates their past decision-making history to elucidate future potential solution sets from which they may choose. While that sounds a bit complex, the truth about Choice/Control Aware Care as a theory is almost embarrassing - it's so blindingly simple someone, surely multiple 'someones' in the healthcare system should have thought of it before, and burnt midnight oil to bring it into practice in strategic planning. And maybe they have, but if so, I haven't heard them actively building processes and products and connecting people to measure individual decision-making in health and how it impacts a person inside and outside the healthcare system. This is not a stroke of genius. Not even close. The Choice/Control Aware Care theory is based upon a concept so small (literally and figuratively), so clear that IT IS ALREADY present in our everyday lives. And it's not hard to use. To the contrary. It's so blindingly easy to understand that when I talk about it at events, peoples' response is often "yeah, but doesn't everyone already know that?"I'm talking about "microchoices." As soon as I explain it using a few analogies, it becomes apparent that everyone understands the concept of making small choices in the now, choices like "should I eat the cookie or the carrot sticks? Walk or drive the kids to the bus stop this morning?" Everyone also seems to understand that there are many of these microchoices we have control over, and that we can bend the potential set of choices based upon our subjective desires about how we wish to live (and die). I'd like you to think for a minute about the micro 'set' of decisions you've already made today - a rainy Sunday here in San Francisco - that add up to macro impact your health.Here's an example of what I'm talking about, using what I've done so far today:|
1. Slept in. Decided to grab 5 extra hours of shut eye instead of working on http://getuapandmove.me business plan, Kisaut Fellow "Redefining Patienthood" project, or going for a run (although I'll probably do some of those later today). I needed to help correct the deficit, and so granted myself this luxury.
2. Ate a pear and drank some kefir for breakfast. Not the french toast smothered with maple syrup I wanted using leftover french baguette dad @litomikey left behind when he drove to the airport this morning. Feel light, good.
3. Washed breakfast down with some black tea and honey instead of coffee and Splenda.
4. Cherrypicked the bits of semisweet chocolate out of the bag of trail mix dad left in the fridge. Resisted, however, the chocolate dipped biscotti. Threw that bag away.
5. Made conscious effort to drink 2 whole 8 ounce glasses of water.
6. Brushed teeth. Felt guilty for not flossing. Put floss on store list on fridge. And so on. See what I mean? And that's just for the 2 hours I've been awake today. If I took that list into my docs office she'd think I'm absolutely nuts. But those decisions, and how I make similar or different ones day after day this week, this month, this year, and so on, has a GREAT impact on my overall health and happiness. Our only challenge is to learn how to harness the cumulative effect of small, everyday choices - "microchoices" - for incentivizing healthier decision-making in each individual, n=1 sample size. The great news is that we *can* absolutely measure these sorts of things. One Eureka moment for me was joining the #quantifiedself Meetup group here in San Francisco. There people meet to talk about tracking personal biometrics - or "me-trics" they find relevant like sleep quality, REM, food intake, stress, etc. And it is interacting with these personal tracking pioneers that drove me to explore my own solution sets of potential health decisions on a daily basis. Make no mistake - health isn't just about the decisions you ACTUALLY make. It's also about the delta between the decisions you COULD make, or the things you THINK about doing, and what action you choose to take. As Yoda says, this is about "Do or do not, there is no try."And speaking of scifi, now let's talk about why moving from a focus on macro population health approaches to individual microchoices will lead a revolution akin to what happened in computing in 1971 when ex-Fairchild Semiconductor engineers Marcian Ted Hoff, Stan Mazor, and Federico Faggin created Intel's "computer on a chip" microprocessor. (Sorry, I'm reading David A. Kaplan's book "The Silicon Boys And Their Valley of Dreams", which I highly recommend as a holiday gift for those in health tech). The analogy is almost too strong to be borne. When talented and visionary startup teams in the Valley catalyzed the evolution of microprocessors, computers evolved from closet sized machines like ENIAC locked deep within the bowels of research institutions to smaller buffet-sized affairs.This miniaturization process - as well as an installation of silicon chips into 'smart' calculators - led some to start wondering what would happen when computers could be carried around with us (gasp!) and the brains of the computer would be open to users commands via software interfaces accessible by keyboard command. 1971 is when things got *really* interesting in computers because we acknowledged the power of putting a common chip inside to lead to wireless translation and manipulation of data for task achievement.We are so close in health it's painful. We've already got some wireless health initiatives that are allowing "users" (ePatients) to "interface" with personal health data computations via sites and services like CureTogether.com, Patients Like Me, Daytum.org, Twitter.com (using hashtag/username tracking as variables in our 'me-tric' algorhithms) even a spreadsheet file in Google docs. But we're still missing the programming equivalent of "Intel inside." Where's our health microprocessor? Maybe we won't ever have one. Maybe an individual data bank repository that lies within each individual person is as close as we'll come. But I don't think that's the case. First, we need to establish the 'language' of circuitry for health, the flow of data and rules about how that data transfers and travels. This means, for HIT to have a common 'processing language,' we must create ontologies that translate data to be processed. hData and OMHE are some of the more interesting examples of brilliant engineers working on this problem. That is the health equivalent of the microprocessor.Once we have data standards that let health data be interfaced with via code, we can write software programs that allow 'everyday' users to 'interface' with their own terminal and ask the program to do things like display potential health choices based on their past decision making. NOTE: Believe it or not, the programming solution to organizing this decision-history information is far simpler than anyone's thinking, and yes, Contagion Health is working on it. Those programs are the health equivalent of the keyboard. Then it will get *really* interesting as users start requesting easier access, sharing of information outside their own networks. Oh wait, they're ALREADY DOING THAT. This brings me to my next point. Instead of being at the head of the health computing revolution, Silicon Valley is chasing after the trailing wires ePatients and others are dragging behind us as we flee a closed system with a near uselessly complex interface. So why aren't the best and the brightest working on this? I'm dismayed every time I hear brilliant engineers demonstrate a lack of interest in healthy as a problem to solve. This doesn't mean it's actually boring, but rather that it seems like something we should just let the gray-hairs (sorry to all my gray haired friends for that one) solve or fight over amongst themselves.But this is underestimating the siren call of a problem so audacious that none of the superpowers (Google, Microsoft) have figured it out. First, if greed and rampant ambition drives any of us, then health is the place to let that ambition loose. We have yet to see a personal health software superpower emerge. Imagine what options as employees 1-20 in a company like that would be worth. Second, if hacker humanitarianism drives any of us, then health is the place to let that idealism loose. We have yet to see a personal health company that takes human-human connectivity and control into account during the design phase. Imagine what giving each individual person the access to his or her health and wellness decisions in an easy to use format like viewing a photo album on Flickr.com would do. The next healthcare revolution will not be about macro-machines or population initiatives like broad spectrum antibiotics.Instead, it will be about personalized medicine in it's truest nascent state - what matters to an individual person in his or her daily life?What accounting does each of us need to do to make health/wellness decisions? We need - as so many here in the Valley have told me with little understanding of the issues - the "Mint.com" of healthcare. Yes, that's a vast oversimplification, but a health 'bank' is hardly a new idea, although it *is* a small step in the right conceptual direction. If I haven't grabbed you to whiteboard out choice and control aware care and the Aristotelian evolution of patient activation, this is probably blowing a few circuits.So I'll leave you with a simple question about the choice and control YOU have over your health and how it might impact you when you're inside the healthcare system.How do the things that happen to this person OUTSIDE the hospital setting matter once that person is INSIDE it?Because make no mistake...as my mentor and friend Carlos Rizo says, at some point, every one of us *will* be a patient. The microchoice here is whether or not you will find and join and fund and fight with the companies who will take healthcare from a closet-sized behemoth to something we can use and hold in the palm of our hands. The 'micro-ization of care' is on its way, and the only decision you need to make today is whether or not you will be part of it now, early on, or whether you'll wait to read about it in biographies 20 years out. I suggest you answer 'yes.' Now is the right time to start thinking small. Jen S. McCabe
@jensmccabeCEO/Founder: Contagion Health