Sometimes I hear of patients who believe their physicians dissed a proposed or experimental treatment that’s not understood. (I’m not endorsing wacky treatments here – I’m only talking about uncertainty.) Yet, we’ve always had remedies whose actions aren’t understood; we just know they work. Even aspirin was used for a century without understanding it. And here’s a line I read today:

“Should I refuse my dinner because I don’t understand the digestive system?”

It’s by Oliver Heaviside (1850-1925), about whom Wikipedia says, “Although at odds with the scientific establishment for most of his life, Heaviside changed the face of mathematics and science for years to come.”

The quote is in the Pulitzer Prize winning book The Emperor of All Maladies: A Biography of Cancer, by Siddhartha Mukherjee MD. Emperor is cancer’s “whodunnit” story, centuries of efforts to understand it and treat it. And not in that order.

In the 1900s brutish early treatments (no more sophisticated than leeching) became more scientific. Inevitably some researchers then urged that we not try new treatments on humans until we know exactly what cancer is – basically, don’t move forward until we’ve got it figured out – with confidence. But meanwhile, people were dying.

As I wrote three years ago on my personal blog:

On the fringes of medical knowledge, lives are at stake and medicine doesn’t have the answers yet. What do you do?

In my own case, my oncologist says there’s a 50% chance my disease will return, and there’s no way to predict which one I’ll be.

So we live, with uncertainty.

Participatory patients and physicians alike should accept that medicine is uncertain. Jerome Groopman MD’s excellent How Doctors Think even says 10-15% of all diagnoses turn out to be wrong, on autopsy. Fittingly, his epilogue it written to the (engaged) patient – how to discuss things anew with your doctor when the treatment isn’t working.

Science keeps pushing toward certainty, and disease doesn’t wait. Perhaps if we acknowledged the difficulty of diagnosis, and if more physicians were allowed and willing in our culture to express doubt, patient questions would be welcome and we could work more collaboratively.

By the way, the Wikipedia article on Heaviside has a different version of the quote: “I do not refuse my dinner simply because I do not understand the process of digestion.” Which to believe? Googling says the Wikipedia version is on 1,310 web pages and the book’s version is only on three.

What do you do in the face of uncertainty? How many sources do you check before you decide to move forward?

My original testimony urged a policy of letting patients see their records essentially on demand, not within 30-60 days as currently allowed by HIPAA. To encourage that, I also recommend that we mandate amnesty for errors that are found in the record. I believe no other path can lead rapidly to the goal I think we should all share: to produce better care for patients in hospitals today.

Tonight’s follow-on:
__________

Paul (and all),

Above all, I urge that we be pragmatic. We have a chance to make rules that will, or may not, make a difference in reality. In that spirit:

• Reinforcing today’s other mails, I think it’s vital to underscore what Dr. Koppel’s webcast [RealPlayer video] illustrated: all the potential hazards you listed, and especially the UI and arbitrary hard-coded workflow rules, can get in the way of data quality.
  • To me it was sufficiently scary to realize that if a system was programmed to require 40mg of something, it cannot cope with two 20mg tablets.
  • To patients in hospitals for the next several years, it does no good to rant about this and demand change. As my mentor said, what works is to manage it thoughtfully.
• Regarding implementation & training deficiencies, I emphasize again that regardless of cause, what matters to patients is the gap: being aware of it and doing everything we can to deal with it. Ranting won’t solve it.
• Regarding 5, “patients can find errors” – I want to be careful not to sound like patients are proofreaders for physicians. It might be clearer as “patients can often spot errors” or some such.
  • As I said earlier, we cannot absolutely prevent errors, but we can certainly minimize their impact.
  • Thanks for noting my wish “Let our foremost commitment be: To do healthcare better. Let us work together.”
• I don’t think I see anything in this draft about amnesty for discovered errors. (I see whistleblower but not amnesty.) Without this I don’t think we have a prayer of the industry accepting this, do we?
  • In open item #6 I do see “relationship between incident reporting and liability” but I don’t think that’s an open issue – I think it’s open and shut. As I said on my cover page, “let us do what encourages improvement.” Without amnesty, data transparency will be understandably feared by hospital boards and staff.

Regarding the open issue of extending whistleblower protection to IT safety issues, I cannot imagine an argument against this. Lives are at stake. Who will stand against any policy that will improve our error rate? I know some will, but I think it’s time for both types of “victims” to stand up – and I mean both the patients and the physicians who want better tools. Because as I learn about healthcare, increasingly I find physicians who are frustrated by things that hamper getting their jobs done.

Finally, this all seems especially current with recent news on the patient safety front:

• Paul Levy’s blog yesterday noted that last week the Lucian Leape Institute at the National Patient Safety Foundation released a report saying “medical schools and teaching hospitals have not trained physicians to follow safe practices, analyze bad outcomes, and work collaboratively in teams to redesign care processes to make them safer.” How scary is that?
• Macarthur Fellowship recipient Dr. Peter Pronovost, medical director of Quality & Safety at Johns Hopkins, was in the Times last week http://www.nytimes.com/2010/03/09/science/09conv.html, talking about how arrogance and ego get in the way of adopting methods that have worked in other industries. That’s a huge red flag for health IT.
  • Pronovost is the author of the checklist approach that has massively reduced central line infections. As someone who’s had 28 days of central line insertions, I’m grateful. Yet most hospital still resist this simple, no-cost improvement.
  • Business Week noted that reasons for this failure include “Many physicians do not like being monitored by nurses or otherwise being forced to follow a checklist” and “A wish to avoid standardized tasks and bureaucracy.”

Ironically, this all leads me to think that healthcare is too important to be left in the unconstrained hands of the healthcare industry.

For our own sake, we need to provide guardrails. And the least expensive, most motivated force we can introduce is the patient/family’s eyes, double-checking what’s in the record.
Today. We don’t need to wait years.

“The fundamental problem with the quality of American medicine,” Pronovost said, “is that we’ve failed to view delivery of health care as a science.” Last week in the quality improvement retreat I attended at Beth Israel Deaconess, a resident nailed it: “Boy, if we’re neglecting useful knowledge from other professions, that’s unscientific.”

Thank you again for the opportunity to participate. We can do great things.

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 e-patients.net, 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]}

I’ve just returned from Toronto, where I gave the opening keynote at the Medicine 2.0 Congress. It was titled “Gimme My Damn Data,” which is an unconventional title for an opening address, but I meant it. Here’s why.

A new world of participatory medicine has been growing for years, largely unnoticed. In this new world, healthcare is not a one-way street: empowered patients are engaged in their care, actively collaborating with their physicians, sharing responsibility for their care.

The healthcare providers (doctors, nurses, etc) are still the providers, but the patients share in both the knowledge and the responsibility for how it all turns out.

And, certainly, the decision making.

This requires that patients have access to their medical data. (Whose data is it, anyway?)

As my primary physician Danny Sands, MD MPH, says, “How can patients participate if they can’t see the data?” But in today’s world (America and, I’m told, many other countries), access to our health data is anything but easy.

In the USA the HIPAA act guarantees that we can get it – but it can take months, which is absurd in a crisis. And, law or no law, Deven McGraw of the Center for Democracy and Technology reports that problems with data access are the #5 complaint in the entire Department of Health and Human Services. #3 HIPAA complaint* reported to the Department of Health and Human Services.
* Deven updated this in an email, saying “it’s consistently the third based on this HHS source.”

Clearly, what patients want and are asking for is not an accomplished reality throughout the world today. This is unacceptable. Lives are at stake. I think people – especially sick people – have a right to take their records and seek care elsewhere. (And that’s beyond the basic issue of a person having access to their data on general principle. Imagine if you couldn’t see your banking information!)

Some providers are great about this. My own medical records, which I can read anytime, are on PatientSite at Beth Israel Deaconess. But there’s still no way for me to get all the data out: I can export some information, but not all. And my hospital’s much better than most: most have no way at all to give you your data – except by fax machine.

There are many technical issues to be ironed out, not the least of which is what format the data should be in. I want to participate in projects to make something happen in this area, something all citizens can get their hands on. If you’d like to partner with me on such a project, contact me.

My slides from the talk should be online within a few days. I’m glad to say that my talk was well received, but to a certain extent I was preaching to the choir. We have much work to do.

So yeah, I meant it: give us our data, and I meant it strongly. No kidding: unleash our data!

It’ll take time. Let’s get to work.