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The following is the proposal I submitted Tuesday, to speak at O’Reilly / TechWeb’s Government 2.0 Expo, May 25–27 in Washington.

The Invisible Stakeholder:
Why America Needs a Patient-in-Chief


“These are exciting and very promising times for the widespread application of information technology to improve the quality of healthcare delivery, while also reducing costs, but there 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 in our information systems – our patients.
– Charles Safran MD, testimony to the House Ways & Means subcommittee on health [Emphasis added]

Quite current, yes?  No: Dr. Safran said those words in June 2004.1 And not much has changed.

My 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, not occasional glitches, as costs spiral up and outcomes don’t.

As Consumer Reports recently said, in the ten years since the Institute of Medicine’s classic report To Err is Human documented as many as 98,000 deaths a year from preventable medical error, “not much has changed.”2

These are signs of a system that’s governed without input from its customer – the patient.3 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.

Patient is not a third-person word.

Believe me, this is personal. This application of Government 2.0 isn’t like fixing roads or town meetings. In this one, lives are at stake.

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 “patients” were somebody who’s not in the room. When I first spoke I found myself saying “Look, patient is not a third person word! Whether it’s you yourself, your mother, your child, or someone else, the time will come when you’ll be the one at that hospital bed, wondering desperately, ‘What are we going to do??’”

But patients are nowhere to be seen at decisive meetings about the future of healthcare. Why?

Patients have to pay to be heard.

And they usually can’t afford to.

I know it first-hand. Time after time I’ve been invited to speak for patients on Meaningful Use in Washington, or at conferences, and every time they said they’d pay for my travel but not for my time.

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

  • “EHR” (the hospital’s system) appears 1,552 times; PHR (the patient’s) appears 5 times
  • “Eligible Professional” appears 1,540 times; “patient-centered” appears twice.4

It’s doubly ironic because the most motivated patients, the ones with the most at stake (and most educated), are most likely to have financial stress – thus least likely to be able to “take a few days off” to go help in DC.

So ask yourself: when your time comes, do you want a more industry-centered reality, or a more patient-centered one?

This is a crisis. Let patients in.

Government 2.0 needs a social-media-savvy Patient-in-Chief.

For years we’ve wondered how to achieve the benefits of IT in healthcare. Now we’re offering billions in incentives to physicians, and we’re still not sure if they’ll adopt.

But patients are already doing it5 – this is a stakeholder that won’t need incentives. We just need to hook the government up, to harvest those existing conversations and listen to what they want.

I’ll close with another quote:

“Karen represents a new type of patient we’re now beginning to see. She has a sharp intelligence and a great intrinsic curiosity. She knows how to use the internet. And she appreciates both the patients’ and the clinicians’ points of view.”

Patient-helpers like Karen don’t compete with what doctors do at all, Perez-Soler says. “On the contrary, they can be wonderful allies for doctors. She finds the best, high quality online materials for lung cancer, classifies them by topic, and makes them easy for other lung cancer patients to find. It’s a wonderful complement to what we do at our clinic.”

Clinicians must keep up to date on a wide variety of medical conditions while seeing dozens of patients a day. Patient-helpers like Karen will typically know only about their one disease, but since they can devote a great deal of time to it, their knowledge within that single narrow niche can be impressive.

Quite current, yes?  No: this was Tom Ferguson, MD, founder of, writing in the British Medical Journal. Ferguson died in 2006 – and this article was published in November 2000.6

Nine years later, patients are still the invisible stakeholder, costs have risen another 97%,7 and quality is no better. Today more than ever, America needs a patient-in-chief. This talk will say why.
1 Testimony of Charles Safran, M.D., President, American Medical Informatics Association, before the Subcommittee on Health of the House Committee on Ways and Means, June 17, 2004. [back]
2 John Santa, MD MPH, in Consumer Reports, November 2009. [back]
3 I was interviewed in 2009 for an industry study of pending healthcare reforms. The last question was “Which stakeholder has the most to gain or lose from these reforms?” Choices included government, insurers, employers, manufacturers, and providers – not a word about patients. [back]
4 Gilles Frydman (president of ACOR) analysis of CMS document, Twitter, 12/30/09. [back]
5 “The Social Life of Health Information,” Pew Internet and American Life Project, June 2009. [back]
6 “Online patient-helpers and physicians working together: a new partnership for high quality healthcare.” British Medical Journal, November 2000. [back]
7 “Health Care Costs and the 2008 Elections,” page 2. Kaiser Family Foundation, October 2008. [back]


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