Desperately Seeking a Patient-in-Chief?
e-Patient Dave is at it again. One half of the patient-physician duo I nominated for a 2009 Coolest People in Healthcare award is shaking up the healthcare status quo and calling for a change of leadership. Specifically, he wants to put a patient in charge in D.C., as he expands upon in a post for The Healthcare Blog. What’s most remarkable is I don’t agree with him.
Before you hit the Comment button to blast me, let me explain. I very much agree with his premise, that patients are an incredibly under-utilized resource in healthcare reform. I also agree that patients are treated as a third party external to healthcare’s dysfunctional inner workings, where misguided incentives and questionable outcomes are the rule. I call this phenomenon “The Patient as Pawn Syndrome”, where The Patient is actually code for ‘What’s in it for Me’. Yes, this is how healthcare treats its customers!
As Dave says, “Patients have the most at stake, but they’re invisible in Washington. We need to link them in; we need their passion, their commitment, their very-motivated contributions.” Yes, we certainly do – we desperately need a voice in Washington and in everyday healthcare too. So why don’t I jump at Dave’s conclusion, that we need a social-media savvy Patient-in-Chief?
Well, the answer is in a quote with which Dave closes his post, from Tom Ferguson, MD, founder of e-patients.net: “ … Patient-helpers [don’t get me started on this demeaning name] … will typically know only about their one disease, but since they devote a great deal of time to it, their knowledge within that single narrow niche can be impressive.” Exactly! Is any one patient’s experience exactly like that of another’s? What makes a single patient, expert in only his or her particular health condition, qualified to represent us all? Healthcare, as I can attest from a lifetime of personal and professional experience, is a constant learning curve.
Further, Dave’s article deals with only one half of the equation, medical expertise. Maybe that’s why these folks are considered ‘patient-helpers’ (I’m still feeling nauseated at this degrading moniker.) Healthcare, as many patients are painfully aware, also involves a significant financial realm dominated by complex insurance and provider rules, all stacked against hapless customers. My formula for an empowered patient is one covered on both the medical and financial aspects, whether through personal knowledge or expert guidance. That is Actively Fused’s mission, to empower you.
Clearly a group of empowered patients would have an explosive effect on Washington, D.C. But how to get us there, as no one seems to want to pay us to attend special-interest-laden negotiations? A lobbying group would be just the ticket. So why isn’t there an empowered patient lobbyist organization? I’ve ranted about this before, a while ago. Frankly, the group that comes closest is the National Health Council. But it represents only those with chronic diseases and disabilities, not necessarily episodic patients, and also includes industry heavyweights at the table.
It’s time to stop healthcare special interests using The Patient as their corporate gravy train. We need a strong, united front to put patients first. So I propose we ditch the grand Pooh-Bah of patients. Instead, it’s time for the Patients-in-Chief lobby to start knocking on Beltway doors.
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