H(app)y Health – But Only if you Fight for It

digital health

Why Health Care Reform Will Spark the Personal Data Economy

Are you aware of what’s going to happen come January, 2014 regarding Health Care Reform?  Picture a windmill-sized fan, a truck full of manure, then crash said truck into said windmill.  The only reason I’ve even investigated how the Affordable Care Act will affect people is because I’m working for a client focused on digital health.  So first – a couple of resources if you aren’t aware of how the Affordable Care Act, aka Obamacare may affect you, here are a few great resources:

-The New York Times’ Series on ACAtheir first piece on a clinic in Louisville is harrowing.
-The U.S. Department of Health and Human Servicesthis is where they explain the ACA Law in detail.
-The Kaiser Family Foundation – Great site dedicated to Health Reform.

I’m still learning about the nuances of the ACA, but one central aspect of Reform is that the health industry (physicians, hospitals) is required to provide digital versions of data from patient visits.  This can be in the form of existing Electronic Health Care Records (EHR’s) or even emails.  Please note I am still learning about the specifics of the Law, but suffice to say we’re moving into an era where doctor’s offices of manilla folders and sticky notes will become a thing of the past.  As a patient or someone who takes care of a loved one who is a patient, you’ll start to be able to access data about you/loved ones that has been locked away in offices, health care facilities, and insurance vaults for decades.

Or, more accurately, you MIGHT be able to.  But probably not.

Here’s where I get mad.  I’m a big fan of people owning their own data.  It’s a core part of what H(app)athon about.  Your identity is intimately tied to your data.  If other people own it or control it, and you don’t have access to it, in one sense other people have a more accurate picture about your identity then you do.  In no instance is this clearer than in the health arena.

Here’s where I want you to get mad.  Righteously mad.  There are people you trust who have your health data.  Like your main doctor.  I have no problem with this relationship.  It’s one on one transactional, you share your intimate health details, your doctor helps you.  But then you take your prescription to your pharmacist.  Maybe you know them, maybe they’re a stranger at a CVS outlet near your house.  The data about your health/visit goes to this pharmacist, your insurance provider, and potentially back to your doctor’s office.  But then you move.  Now you go to a new pharmacist, new doctor, potential new specialists. There are now about a half dozen people or more who have bits of your health-related identity all using disparate ways to store data that probably don’t coordinate with each other. 

Now you’re a patient with cancer, where day-t0-day details (if you’re in the hospital like a close friend of mine who just had a bone marrow transplant), and you’re dealing with dozens of specialists, nurses, on-call doctors, etc.  They each come in with a manilla folder, probably riddled with stickies, all with information (hopefully accurate) about you and your loved one.  Much of it not entered digitally.  Most of it (if entered) that only relates to the specific EHR (Electronic Health Record) of that particular hospital.

Any of my friends in health or digital/health know what I’m describing (not nearly accurately enough).  At whatever level, they’ll sigh, say this is not new information I’m providing, and they’re right.  Complaining about it doesn’t help, it’s just the way things are.  Everyone realizes it needs to change.

Fair enough.  But now I’m going to vent, all due respect to the legion of people working to provide healthcare that benefits patients, and people working to evolve a data-collection system that is literally as modern as Atari (although Atari was still digital, so that’s not the best analogy).

Get Mad Now

Let me help you skip a few steps as you examine Health Care Reform.  First off, you’re welcome to get mad at Obama and make this a political debate.  But I’m not interested in the politics per se.  I’m angry that there are so many players who own patient data who “can’t” reveal it to patients because of archaic, byzantine laws or regulations that may have sprouted from a desire to be good but still boil down to one thing – the data that should be owned by patients is not even AVAILABLE to those patients.

Secondly – this probably goes without saying, but TRILLIONS of dollars are made on the data about patients that is not provided for them to see.  In this sense, there is no impetus for any health care service organizations to be transparent because they’ll lose revenue.  Let me make that simpler – if you get the data about your health that is your natural right, it means certain businesses will feel threatened. 

Where revealing that data to a patient so they can use it to create insights for themselves and their families, and help the other doctors who can help them, I say amen.  And to any organization that feels threatened, I say – deal with it.  Evolve and help the patient, give them their data, or be prepared to be disrupted. And to hear me laughing derisively while your antiquated, potentially mendacious business model crumbles to the ground.

All ye who base your business on owning other people’s data – your time has come to go away. 

The Personal Data Economy

My definition of the Personal Data Economy is pretty simple – any data that refers to your health, identity, or behavior that people are making money off of is at the core of the Personal Data Economy.  The Affordable Care Act is going to expedite the onset of this Personal Data Economy.  Once patients start having any doctor or health care provider in their circle of influence providing more data than they have before (however long this takes) they’re going to realize that other people have their health data and won’t give it to them.  They’ll request data about their health or that of a loved one, and for whatever reason or rule, they won’t be able to receive it.

I feel like this is pretty simple.  A core, inalienable right – data generated about your health, by you or loved ones, should be available to you.  Note I’m not saying people shouldn’t make money off of it – a device or a professional that provides insights about your health is why we go to said professionals.  But when health care providers get data that you can’t see that affects your fiscal life, or more importantly, how you get informed to take care of loved ones –

That is plain and simply just absolute bullshit.  Please note I’ve gone a great number of paragraphs without swearing to this point, which has been a challenge.  But there’s no other word for it.

I don’t want to discuss HIPPA laws.  I don’t want to hear from all the healthcare clients I used to pitch to telling me why the FDA will make this type of data availability impossible for years.  I don’t want to hear how EHR companies don’t make their data available in formats that will be easily readable by other systems so they can be competitive.  I don’t want to hear that most consumers don’t understand about Obamacare and how it will affect them.

I want you to get mad.  I want you to be as livid as I am that the information that literally drives our lives is hidden from us, for whatever the reason.  I don’t want you to be reasonable and take ten years to make this data possible.  I don’t want people to die while we deal with other people’s bureaucracy put in place largely to make sure THEY get paid while millions of hard working Americans can’t afford health care and avoid going to clinics or even the emergency room because they won’t be able to afford treatment. 

I will NOT condone the part of the health care system that benefit more from people staying sick than staying well (this is not the entire portion of the system, by the way but certainly makes up billions of dollars a year in revenue).  I will also not be patient with people who are thinking about how to implement change based on this current, broken model of health care.  This model is broken.  Data has evolved.  It is beyond absurd that the people to whom we entrust our lives don’t have uniform digital systems to help them avoid mistakes, save them time, and most importantly, ensure quality care for patients.  When EVERY Wal-Mart in the world has a POS (point of sale) electronic system that can recognize the QR or RFID codes of boxes shipped all around the world with utter granularity, it is embarrassing, distorted, backward, reprehensible, absurd, and probably even downright evil that we have come to the place where healthcare is where it is today regarding data.

Welcome to 2013.  Get mad about your data.  Want to get in better health?  Learn about ACA now and just start asking this question to ANYONE associated with your health – “Can I please get my records in a digital format, please?”  Or, “Can I have my health data?” Whatever the response – ask the question again.  And keep asking until you get the data you deserve.

Sooner or later your life will depend on it.


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