In a VRM discussion Doc brought up the idea of VRM, User-centric healthcare
Awesome post from Doc here:
http://blogs.law.harvard.edu/doc/2008/06/24/making-real-health-care-happen/
That discusses some of his recent troubles, his recent post for Linux Journal and how it connects with VRM.
My thoughts:
In a previous life, I worked on a startup called medicalrecords.com. The founder created MedRec after having a medical emergency while vacationing in another country – a situation where he couldnt communicate and they didnt have his information on hand or even accessible. While we felt we had a compelling idea, we were finally crushed by a combination of under-capitalization, the dotcom downturn, HIPPA regs and something that is also facing VRM – *users didnt realize they needed it*.
The problems can be broken down into Behavior/Systems/Tools. The context for medical data ownership and portability wasnt there when we were working on MedRec and it isnt there now (although more are talking about it). Then and now, a certain apathy is present in the userbase that says “well the system/HMOs/My Doctor sucks, what can you do”. Generally-speaking, proactive management of health and wellness isn’t a priority because behaviorally we dont pay attention until we are in a crisis (or think we are about to have one).
Systems-wise, Doctors and Health organizations are under the gun to be profitable, to see as many patients as possible and to get the patient better (not necessarily well) to move them to another part of the healthcare assembly line. If this means taking blood 4 times a day (even if you only need to do it 2x) in order to bill the HMO a little more, the so-be-it. Templates are used to get the best possible outcome out of limited information and time – because doctors dont have the time to spend hours on a specific case. Also liability is a huge issue, and anything they do is looked at under the lens of risk management – they spend so much time playing defense against the user, they dont have enough time to play offense against the condition you are there for. Combine this with government (in my case the US) regulations to protect the consumer from their medical data being mishandled/misused and the system, while working, sure as hell isnt efficient. By making a one-size fits most solution, by ignoring the users who want to opt-in to their lives, they are missing the catalyst for innovation.
As far as tools go, they are out there. IT spending in the healthcare industry is evergreen – as long as that new system can shave a couple cents off of every patient, then it is worth it the investment. “A discount for locking us into your platform/proprietary model? SURE!”. Lock-in, a single “throat to choke”, someone to sue if the system fails is all a part of this. I am sure more and more hospitals and healthcare concerns are using open source for scalability, availability, security and cost – but they dont necessarily subscribe to the F/OSS ethos: users, not believers. We are talking about an industry where door-to-door salesmanship is alive and well (pharma sales reps). A couple of years ago I got to spend a few weeks in FLA while my dad was in ICU with MRSA (a particularly nasty staph infection that only responded to a drug that you can take 7 doses of before it destroys your liver). They had an incredible single-patient-record system, where everything about the patient, from notes, to timing of medicine to test results were available in realtime, as it happend, within their 4 walls. And when you walked out of the hospital *poof* – the data, the history all gone, locked into their machines – unshareable, untransmittable outside of printed or faxed results (believe me, I tried).
All of this – user apathy/lack of understanding the use-case for owning their medical data, revenue and risk management instead of health and patient services as operating principles, government policies that lock in the users without flexibility or customization and a lack of appreciation for a world outside of “lock-in”, and you have a perfect storm of suck-age.
Does VRM apply? Absolutely. User-centricity, control, having a stake in the game (I think health is possibly more important than any other transaction – other than using VRM to find a mail-order-bride of course) along with users and vendors “partying together”(thanks Dave) are all a part of VRM.
Users – need to get more active and engaged. Understand they need more control and then demand more control. Act more like a partner in their own health and less like a consumer of services (insert cathedral-bazaar reference here). Users need to understand how VRM-Health will change the quality of their care (and the care of those they love – healthare is rarely a singular effort – it effects a lot more than just the person who is sick). They need the tools to manage their personal medical record and they need to demand their healthcare providers get engaged
Government will not stay out of the discussion – they have a valuable role to play and the better informed they are, the better it is for the users (both savvy ones and the less-engaged). We will never get away from Legislation, but it can be more user-centric, more opt-in opportunities, more pushes for innovation, more requirements to make users more engaged. The government (Fed, State, Local) is the biggest payer for medical services, and VRM can help improve that situation by reducing friction in the transaction.Govt need to encourage engagement and make incentives for business to be more open
Medical Establishment needs to see value in putting users more in charge. Lots of HMOs offer wellness programs and rebates for things like going to the gym (% off gym memberships if you go x times per month). One or two innovative companies need to begin seeing the user as more of a partner and less of a victim, er, uh, consumer. Hospitals need to make data portability part of the patient bill of rights. Primary care people/orgs need to begin educating users on taking control of the management of their health. They need to start trusting the users more, build open ports into their platforms to support their communities and see HealthVRM as a building block for their business as opposed to a stumbling block