DO IT!  Go get your friends. Let’s make this invitation rewarding to the industry people who invited us.

The link to the survey is at bottom. But first, if you’re not up on what connected health is, get informed. Here’s a start.

The Wikipedia article defines it nicely:

Connected Health is a term used to describe a model for healthcare delivery that uses technology to provide healthcare remotely.

Connected health aims to maximize healthcare resources and provide increased, flexible opportunities for consumers to engage with clinicians and better self-manage their care. It uses technology – often leveraging readily available consumer technologies – to deliver patient care outside of the hospital or doctor’s office.

Connected health encompasses programs in telehealth, remote care (such as home care) and disease and lifestyle management, and is associated with efforts to improve chronic care.”

I’d add that it’s not just about chronic care.  In my grand semi-educated vision, we’d have all kinds of devices:

• My blood pressure machine already has USB and uploads data to my PC. (I want it to have wifi and upload data to my doctor.)
• My bathroom scale should do the same, eh?
• Why not let diabetics’ CGM devices (continuous glucose monitors) should upload their readings into their personal health record?
• Cardiac monitors could do the same. (An example that may or may not be on target is Holter monitors.)
• And so on and so on.

All that data would be online (just like your bank statement) and both you and your consultant/doctor could view it. And clever software could monitor it for you.

A key principle, in my view, is that automation works: things that are automated get done much more reliably than things that I have to remember and “get around to.”

There’s no better example of this in my life than computer backups. Over the years I spent over a thousand dollars on well-intentioned backup devices and software: Zip drives, external hard drives, tape drives. Mind you, I know the right way to do backups (full backup monthly or weekly, incremental in between, blah blah blah) but knowledge isn’t action. (In medical lingo I was a “non-compliant” backer-upper.)

Y’know what works for backup? Carbonite: you start it running and it runs in the background, continuously backing up your data over the internet. So, last November, when we visited a delicious B&B in Provincetown and I just happened to drop my computer on a gorgeous tile floor, I put in a new disk drive and all my data came back. (It took 3 days, but nothing was lost. It worked. I only had to reinstall my applications.)

So I’m like all over the idea of connected health gadgets that gather data and pump them out to elsewhere.

The survey is a dozen questions, and takes 5-10 minutes. You can start it and work your way through and stop and come back later. I did that, to let myself think.

Be aware, this is a business survey, so a lot of the questions about what factors will help or hinder adoption of the technology.  On some, I had to use “Other” and enter “I have no idea” or “There’s no one single cause.” Express yourself!

One last note: the final question is “In what way could Connected Health be most beneficial to you?” It’s an open text box, and you’re invited to type a personal note about your condition or particular interests, if you want. (That topic wasn’t designed into the survey, but they said we could use it that way, if we want.)

The survey starts here.

Thanks to MassMEDIC for including the ultimate stakeholder in the research, and especially thanks to researcher Vaishali Kamat of Cambridge Consultants, who met with me in Harvard Square one rainy Sunday for more than an hour and who returned today, inviting patients to participate in the survey.

DO IT! And go get your friends. Have them study up, think, and respond. Deadline is August 15.

p.s. If you become a Carbonite subscriber, tell ‘em I sent you so I get referral points toward my free toaster. And, be aware that their tech support is, well, offshore: a chat session yesterday started with the rep saying “I will defiantly help you with same.” (I replied “Are you angry?”) (Yes, I did.)  But we eventually got it done.

What is the risk that, as soon as the health care system reform becomes an intense focus of policy (as it is now), more and more attention will get devoted, not to controlling health care spending, but to continuing to spend while finding reasons why what was just spent does not form part of what could/should be reformed? Based on the developments of last 2 weeks, including the huge fight over the real cost of the proposed reform and the continuing discussion over Atul Gawande’s masterful article, “The Cost Conundrum” , my guess is that we are heading straight into Goodhart’s kingdom. Seriously, when was the last time you saw a winner of the Nobel Memorial Prize in Economics make a comment in a blog post about health care?

Discussions about the reform of the system are clearly no longer directed to improve care, outcomes and  patient experience. On the contrary conversations have become almost exclusively about lowered costs. It is as though most of the people involved in thinking about the reform really don’t want to remember that medicine (the topic central to health care reform) is all about you and me, the current and future patients, not about saving an array of professionals whose income has become totally dependent on the accumulated and constantly growing dysfunctions of the system.

Health care reform should start with simply accepting that all human beings have the right to be treated as human beings, in sickness just as much as in health. As long as our bodies remain the best income proxies for millions of Americans whose business depends on extracting as much value from sickness as possible we will have a nasty case of Goodhart’s law and real reform will remain impossible.

Pay attention to how the politicos and the media are churning news, almost non-stop, about how much the reform will cost. Will it be $1 trillion, $1.6 trillion or $3.7 trillion? Ask the average person and they’ll almost certainly look at you with eyes filled with fear and guilt, because everybody knows something must be done but frankly, the more we hear about it the more we experience that it’s just too overwhelming.  We have been spoon fed sophisticated lies for too long. Because we have been used as the proxy source of income for all the participants of Opaque, Inc we have never been told:

• what is the real cost of care for each one of us and,
• how we have been brainwashed to believe that so called unlimited medical choices always result in better outcome.

Attacked by soundbites that include one of the huge numbers, we become paralyzed and unable to start questioning any of the statements made by each of the defenders of the established order, as well all the statements made by politicians who are almost always motivated by undeclared biases.

But when the dust settles, we will be left with one simple question. Are we getting better care than before? My theory is that you cannot reform the health care system as long as you fixate on the system. It is too broken and too dysfunctional for multiple reasons as noted by countless experts. But almost none of these experts live and breathe what the people in this blog are experiencing daily.

Health care is not about money, it is about care. It is not about RBRVS, it is about helping the patients having to make complex decisions about pros and cons of various treatment options. It is not about private insurance vs public plan, it should be about health and wellness. It is not about unnecessary procedures, it is about ending the paternalistic model of medicine. Truly empower the patients and they’ll be able to see through many of the dysfunctions and will force changes faster than any mandated reform.