What user personas do healthcare technology designers and entrepreneurs have in mind as they create their products? And how often is it the family caregiver of an elderly person?
This is the question I found myself mulling over as I wandered around the Health Refactored conference recently, surrounded by developers, designers, and entrepreneurs.
The issue particularly popped into my head when I decided to try Microsoft Healthvault after listening to Microsoft’s Sean Nolan give a very good keynote on the perils of pilots and the praises of platforms (such as HealthVault).
As some know, I’ve been in search of apps and services that can help older adults and their families keep track of lengthy and frequently-changing medication lists. For years now I’ve been urging family caregivers to maintain some kind of online list of medications, but so far I haven’t found a specific app or service to recommend.
Why? Because they all require way too much effort to enter long medication lists. Which means they are hardly usable for my patients’ families.
Could HealthVault do better? Having heard generally promising things about the service these past several months, I signed up and decided to pretend I was the daughter of one of my elderly patients, who had finally decided to take Dr. Kernisan’s advice and find some online way to keep track of Mom’s 15 medications.
Sigh. It’s nice and easy to sign up for HealthVault. However, it’s not so easy to add 15 medications into the system. When I click the “+” sign next to current medications, I am offered a pop-up box with several fields to complete.
There are two definitions of the word “Hacker”. One is an original and authentic term that the geekdom uses with respect. This is a cherished label in the technical community, which might read something like:
“A person adept at solving technical problems in clever and delightful ways”
While the one portrayed by popular culture is what real hackers call “crackers”
“Someone who breaks into other people computers and causes havok on the Internet”
People who aspire to be hackers, like me, resent it when other people use the term in a demeaning and co-opted manner. Or at least, that is what I used to think. For years, I have had a growing unease about the “split” between these two definitions. The original Hackers at the MIT AI lab did spend time breaking into computer resources… it is not an accident that the word has come to mean two things.. It is from observing e-patients, who I consider to be the hackers of the healthcare world, that I have come to understand a higher level definition that encompasses both of these terms.
Hacking is the act of using clever and delightful technical workarounds to reject the morality embedded default settings embedded in a given system.
This puts “Hacking” more on the footing with “Protesting”. This is why crackers give real Hackers a bad name. While crackers might technically be engaged in Hacking, they are doing so in a base and ethically bankrupt manner. Martin Luther King Jr. certainly deserves the moniker of “protester” and this is not made any less noble because Westboro Baptist Church members are labeled protesters too.
At Health 2.0 we have a natural bias toward the innovator, the entrepreneur, and the developer. Health care is largely broken, and those upstarts have the potential to fix it. But it’s by no means easy. Part of what we’re doing at our upcoming Health:Refactored conference is helping developers get access to APIs and other technical entrees into health care data (such as the SHIN-NY or HealthVault).
But as Paul Levy pointed out in a recent post about Epic’s domination of the large hospital system EMR market, and as Jonathan Bush hilariously detailed in a talk at last week’s TEDMED, health care’s money and data and power are still locked up in huge institutions that don’t have it in their business plans to give up that position — whatever their mission statements might say.
Francois de Brantes’ book The Incentive Cure details in a fun way how hard it is for providers to do the right thing, and how in the absence of changing incentives, most of the things that seem to make sense for better health (like holistic patient management, care variation reduction, better informed patients and providers) actually make worse sense for health care institutions. Which means that the dam is still holding back the torrent of ideas and solutions from innovators, entrepreneurs and developers. We know (broadly) what to do but we can’t do it. It’s the worst of times.
But two things are changing. One is that we at least recognize the problem. The system may be an addict, but it knows it’s one, and so does the taxpayer and the patient. So that first step has been taken. The second change is the flood of new technologies outside of, and now inside of health care, that can help us get through the next 11 steps. Todd Park says this is the best time ever to be a tech entrepreneur in health care. So is this the best of times? Eventually it’s up to all of us to make it so.