Hang on to your hats – this one might wade into controversy.

django lincoln caduceus imageAs I write this (3:30pm EST on January 1, 2013), I’m listening to a conversation on NPR about the Emancipation Proclamation, which was signed into law by Abraham Lincoln 150 years ago today. I’m also reflecting on a couple of movies I’ve seen in the last 45 days: Lincoln (over Thanksgiving weekend) and Django Unchained (on Christmas Day).

Is it time for an emancipation proclamation for patients? Or should we just saddle up and have a shootout at the plantation … um, hospital instead?

Too many healthcare transactions are still conducted over the patient’s supine form. Doctors, hospitals, and other entities in the “provider” column horse-trade with health insurers, including Medicare, in the “payer” column. That means that the patient winds up shackled. No say in how much something costs, no real voice (yet) in what happens next, little interest on the part of the two trading entities in clueing us in to what’s happening.

Some of my connections in the participatory medicine/e-patients movement use a driver-rider metaphor for transforming healthcare, with the patient moving from passenger to driver in healthcare. It’s a less controversial/confrontational metaphor than referring to patients as chattel on the medical plantation. However, I’m sticking with that plantation metaphor for the moment, because too many in the provider and payer camps are still viewing patients as meat puppets, not as full participants.

Does healthcare need an emancipation proclamation? Yes. Here’s where the metaphor shifts: let’s not wait for someone to proclaim us (patients) emancipated. Let’s break our own chains, and be our own liberators.

Let’s demand that the providers and the payers give us an equal seat at the table, and then let’s …

LEARN EVERYTHING WE CAN TO BE PRODUCTIVE CONTRIBUTORS TO THE HEALTHCARE SYSTEM.

That last statement is the core of what will emancipate healthcare: patients, providers, payers, caregivers, everyone. Shared decision making – along with “patient-centered”, that’s the new hot phrase in healthcare – can only exist if all parties are able to participate in sharing the decision-making. We must learn how to understand the language of medicine, including research statistics (by the way, many doctors aren’t great at that, either). We must learn to apply critical reasoning to what we see/hear/read in the media about risks and trends in health and disease. We need to work on getting a seat at the research table to give a hard shove in the direction of making clinical research less ivory-tower and more boots-on-the-ground.

Some recommended reading for those who’d like to emancipate themselves:

Society for Participatory Medicine blog

ePatient Dave

Susannah Fox

Dr. Ted Eytan

and our movement’s own Rosa Parks (or, dare I say it, our own Django?):

Regina Holliday

Let’s liberate ourselves, shall we?

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2013: the year of healthcare emancipation?

6 thoughts on “2013: the year of healthcare emancipation?

  • January 2, 2013 at 11:27 am
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    Hi Casey,

    Without saying that I think there should be an emancipation proclamation for patients, when I went to the American History Museum’s exhibit on the emancipation proclamation and the March on Washington, the work we have all been doing definitely crossed my mind.

    Interesting that the photographs I took ( http://www.flickr.com/photos/taedc/sets/72157632400638733/ ) were of the organizing materials used by those for this momentous event. I feel like we have been in some of these momentous events ourselves. Maybe one day there will be an exhibit in the Smithsonian on what we did/saw,

    Ted

  • January 2, 2013 at 2:15 pm
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    From your lips to the ears of providence, Doc! 

    I take hope from your words, particularly since I was just shouting at my radio (another NPR driveway moment) as Atul Gawande recommended all sorts of stuff without mentioning empowering PATIENTS at all, even once. 

    Even to the perceived thought leaders, patients are still meat puppets.

  • January 9, 2013 at 1:47 pm
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    I really agree with everything you are suggesting and want you to know how much I appreciate you taking this on as a cause that is very important to us all.  We need to make the changes or it will never be any different or worse.  Thank you for all you are doing and the sophisticated way you are handling this movement as well.

  • January 9, 2013 at 1:52 pm
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    Just wanted you to know how much I appreciate all you are doing for the rest of us!!!!

  • Pingback:2013: the year of healthcare emancipation? » Steve Mattison, ABR, e-PRO

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