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The Real Health Care Revolution: Where Are the Pitch Forks and Torches?

Submitted by on September 21, 2011 – 8:39 am11 Comments

 One of the great communications gurus said something to me that I have thought about my six years in and around the online health space:  “It never ceases to surprise me,” he lamented, “common sense just isn’t that common.”

The common sense of our worlds seem clear to me.  Everyone is a health seeker; everyone wants – and now through technology can have at their fingertips – greater control of their lives; that same technology – offering easy information on our terms we can share and extend to our specific conditions, even anonymously – almost seemed be invented FOR health seekers.

And yet in my journey I have had five stunning surprises.

First, no matter how central health is for all of us, we as humans really, in the end, wish to avoid it.  I should not have been surprised – it was prophesized the day we formed HealthCentral.  I received a call from a friend and top executive at WebMD who said, “fantastic!  Welcome to the space where no one wants to visit your sites!”

Based on the common sense I just mentioned, I thought he was crazy.  What is more important than our taking control of our health, and in dire circumstances getting all of the information we can and find people who have been there in order to commiserate?

Then I came to an understanding of the word “compliance” – a terrible word I’ll return to in a moment – but in affect I was shocked to learn how many people not just with chronic issues or mood disorders, but with terminal illnesses not only take “drug holidays” but stopped their treatment out right.  Low and behold, they often act the same way in visiting health sites!

We all have that voice inside that tells us constantly to watch our health, or to do certain things if we or someone we love are in the midst of the battle – but another voice tells us not to define ourselves by it – it’s not that bad, it’s not me, I’m doing fine, I will just will life as I knew it!

Second, for all the talk of empowerment, it really is shocking how much has been beaten into our DNA that health decisions are made by someone else.

Your company chooses your insurer, assuming they offer any; the insurer pushes you towards a doctor, assuming they take it; a doctor pushes your course of action after a 12 minute consultationt, assuming you’ll do what they say.  I exaggerate but not by much.

I remember meeting with the former Secretary of HHS, Mike Leavitt, who told me how he once tried to price shop, apples to apples, a colonoscopy within a few hundred miles of his home.  First and foremost, it was almost impossible to do so.  But when he got a rough approximation over a few hospitals he found a range from a few hundred dollars to many thousands!

I felt his pain a year ago, when I received a check in the mail from my insurance company for $35.  Now I have no idea what that check was for, and the description – some code – offered little condolence.  My mother raised an honest kid – was this a mistake and should I send it back?  Is it possible they owed me more?  I had no clue.  I cashed it.

These stories underscore that the most common sense way of empowerment is to know what you are getting and what it costs – but this dynamic, beyond a co-pay and out-of-pocket deductables, simply doesn’t exist in health!

This highlights my third surprise:  never in the history of business has there been such a massive industry – and industry whose companies affect every life, not some, EVERY – that has as their competitive advantages mastering obfuscation.  Oh others may give them a run for a money.  Spend an hour trying to fathom the 40 pages of papers in your mortgage refinancing today and you know what I mean.  But health – this is in a league of its own.  And the stakes could not be higher.

Fourth, so many parts of the health care industry – now I’m not talking about individual doctors and nurses etc. as we all have ones we love – but as an industry almost has seemed to forgotten that they are helping real people.  The patient, in fact, is lost!

You see it in the choice of words.  This brings me back to those terrible chestnuts: “compliant” or “adherence” – sometimes I feel like a pet dog!  Read the backs of any pharma magazine ad and you wonder if the regulators who compel it had ever been sick a day in their lives.

I have met with dozens of twitterers in pharmaceutical, insurance, hospital and other health companies and I ask them a very simple question – a kind of rorchach test of whether they have lost the patient:  “would you follow yourself if you didn’t work in this job.”  Not one said “yes.”

I don’t get it – after all, every person in the health system is, has been, or will be a patient!  Why is it so hard to BE the patient we seek?  But there you have it.

So — we are at one level resistant to engage in health; so much of the decision making is in other hands any how; the entire industry seems to be based on compounded obfuscation; and the patient gets lost.  All this leads to my final surprise.

Where are the pitch forks and torches?

Where is the “we are mad as hell and we are not going to take it anymore?”

I used to argue that real health care reform will not happen until we all stand up, not allow the forces of obfuscation to win!

We are EVERYONE.  Don’t we outnumber “them?”

Being in the online health world – seeing in the condition specific communities and shared stories that is the backbone of HealthCentral, spending time over the years getting to know so many of you, I began to realize that my question was both an old way of thinking and counterproductive in any event.

While I ring my hands about the nonsense masked as common sense YOU all are standing up quietly and deliberately and taking action regardless of the obstacles – whether driven by anger or invention – is no matter.  We rage at unconquerable, even unknowable Gods.  To what end? Just do!  This is the credo of entrepreneurship that has driven the technological revolutions we so love – there are ALWAYS more obstacles, more reasons why things can’t be done.  The women of men of impact simply say “fine.  You worry about that.  I am going to act.”

You are running a more quiet revolution in our midst, empowered by technology, affectively end-running powers of obfuscation.

You are patient entrepreneurs!

Many of us were proven wrong that great technology would change health and wellness overnight – at the same time the arc of behavior bends towards whether something makes our lives better, cheaper, faster, more beautiful, move fulfilling, more inspired than it was before.  This is the ultimate common sense of any successful innovation or product.

For all the talk of a great technology around patient health records, mobile tools and apps, fantastic new attempts to help us price compare or at least better understand our reimbursements – some  outstanding businesses, others nifty gadgets, others lead balloons – is really moot.  They and more WILL happen, it is not a matter of whether but when.

The rudder for health in the future is what the people in this room represent:  patient entrepreneurship is built upon true patient empowerment, and the transparency, community and action it commands.

Patient empowerment is a terribly tossed around word, but at its essence it meets the three most important needs we all have in a time of health part and parcel, often as important, as the treatment itself.  These needs are:

I am not alone

I’m not crazy.

I can take actions that work because I have seen, shared, connected with, been rallied by people like me who have done the same.

It is the last one in particular that is revolutionary, and what is real — not hype — real empowerment.  I know I can take control or act in a certain way because someone like me did, and succeed.  Again, not just my condition – but ME!  I see this on the health central sites daily.

A 32 year old woman with breast cancer.

An ADD adolescent who thinks he’s a loser

A depressed husband who doesn’t know how to answer his wife’s constant, “what are you depressed about?”

A 55 year old man asking, “should I put my Dad in a nursing home”

In your blogs, in your support, in your tools, in your sharing experiences lies the first steps of control:  we all learn that others just like us regularly fire a doctor, get a second opinion, come back from a drug holiday, talk to a boss about health needs, learn how to tell their children about what they are going through, try a new course of treatment etc.

Shared stories; shared aggregate data of what works or doesn’t; shared recommendations – all equals better outcomes and greater individual control.  This is what will lead to the adoption – no the demand – for the technological innovations that will change the system and get more control.  That is what will drive broader structural change because anyone who cannot stand up to the light shown on upon them will eventually fall.

THAT is common sense.

 

 

For video of the speech, click here.

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