{"id":4344,"date":"2010-01-06T02:40:37","date_gmt":"2010-01-06T07:40:37","guid":{"rendered":"http:\/\/pmedicine.org\/epatients\/?p=4344"},"modified":"2015-07-20T13:33:39","modified_gmt":"2015-07-20T17:33:39","slug":"patient-in-chief","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2010\/01\/patient-in-chief.html","title":{"rendered":"The Invisible Stakeholder:
Why America Needs a Patient-in-Chief"},"content":{"rendered":"

The following is the proposal I submitted Tuesday, to speak at O’Reilly \/ TechWeb’s Government 2.0 Expo<\/a>, May 25\u201327 in Washington.
\n______________________________<\/p>\n

The Invisible Stakeholder:
\nWhy America Needs a Patient-in-Chief<\/h1>\n

 <\/p>\n

\u201cThese are exciting and very promising times for the widespread application of information technology to improve the\u00a0quality of healthcare delivery, while also reducing costs, but\u00a0there is much yet to do, and in my comments I want to note especially the importance of the resource that is most often under-utilized<\/strong> in our information systems \u2013 our patients.<\/strong>\u201d
\n<\/em>\u2013 Charles Safran MD, testimony to the House\u00a0Ways & Means subcommittee on health<\/em> [Emphasis added]<\/p><\/blockquote>\n

Quite current, yes?\u00a0 No: Dr. Safran said those words in June 2004.1<\/sup><\/a> And\u00a0not much has changed.
\n
\nMy physician Dr. Danny Sands, mentored by Dr. Safran and colleague Warner Slack MD, heard similar sentiments from them decades earlier. And where are we today? Patients are still untapped, and we have the worst dysfunction in the history of healthcare. Perverse incentives and unintended outcomes are the rule<\/em>, not occasional glitches, as costs spiral up and outcomes don\u2019t.<\/p>\n

As Consumer Reports<\/em> recently said, in the ten years since the Institute of Medicine\u2019s classic report To Err is Human<\/a><\/em> documented as many as 98,000 deaths a year from preventable medical error, \u201cnot\u00a0much has changed.\u201d2<\/sup><\/a><\/p>\n

These are signs of a system that\u2019s governed without input from its customer \u2013 the patient.3<\/sup><\/a> Patients have the most at stake, but they\u2019re invisible in Washington. We need to link them in; we need their passion, their commitment, their very-motivated contributions.<\/p>\n

Patient is not a third-person word.<\/h2>\n

Believe me, this is personal. This application of Government 2.0 isn\u2019t like fixing roads or town meetings. In this one, lives are at stake.<\/p>\n

Yet people talk about it abstractly. After my own near-fatal cancer in 2007, as I began speaking at public events, panelists constantly spoke as if \u201cpatients\u201d were somebody who\u2019s not in the room. When I first spoke I found myself saying \u201cLook, patient is not a third person word! Whether it\u2019s you yourself, your mother, your child, or someone else, the time will come when you\u2019ll be the one at that hospital bed, wondering desperately, \u2018What are we going to do??\u2019\u201d<\/p>\n

But patients are nowhere to be seen at decisive meetings about the future of healthcare. Why?<\/p>\n

Patients have to pay to be heard.<\/h2>\n

And they usually can\u2019t afford to.<\/p>\n

I know it first-hand. Time after time I\u2019ve been invited to speak for patients on Meaningful Use in Washington, or at conferences, and every time they said they\u2019d pay for my travel but not for my time.<\/em><\/p>\n

Of course, policy orbits around those who were at the meetings. How\u2019s that working out right now? ACOR president Gilles Frydman tweeted that in the 576 page proposed CMS rule for meaningful use released last week,<\/p>\n