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

The following is the proposal I submitted Tuesday, to speak at O’Reilly / TechWeb’s Government 2.0 Expo, May 25–27 in Washington.
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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.
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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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Posted in: policy issues | reforming hc | trends & principles | Why PM

 

 

Comments

44 Responses to “The Invisible Stakeholder:
Why America Needs a Patient-in-Chief”

  1. Paula Jacunski says:

    Absolutely! I would add that we also need a Nurse-In-Chief. Nurses (typically) have a great deal of intimate and long-term contact with their patients and their families. In my work as an inpatient nurse, I live with these patients for a whole shift. They share their frustrations and challenges. Often I follow behind the doctor to explain things to them. Patients often have the impression their doctor is busy, with not enough time to explain, and they “don’t want to bother him/her”. Having been on both sides of the bed, as a patient and a nurse, I want everyone to have a strong patient advocate; frequently that is a nurse.

  2. The Invisible Stakeholder: Why America Needs a Patient-in-Chief. (e-patients.net) http://is.gd/5OLdw

  3. Pete says:

    Great post, interesting thoughts.

    A technical issue: at 98,000 deaths per year, medical error would be responsible for 4% of annual deaths, more than diabetes mellitus, Alzheimer’s disease, and pneumonia. It would be more than double motor vehicle accidents, almost three times suicide, and five times homicide.

    The CDC puts “complications of medical and surgical care” at 2,521 deaths in 2006, which sounds like a lot more reasonable number. Perhaps the IOM looked at places where medical choices could have prolonged the life of an expiring patient and other choices were made, and perhaps, by some criteria, some of those mistakes were errors.

    My only other suggestion is with the metaphor: rather than the “patient-in-chief”, I’d view it more as an enlisted position — sort of a Patient-sergeant-major, using the metaphor of someone who leads from the battlefield and not the bunker. It needs a better name than that….

  4. ePatientDave says:

    @PNSchmidt discusses the "100k deaths from errors" number on Pt-in-Chief post – help, anyone? http://is.gd/5NIqd

  5. I completely agree. The patient has a very vested interest in their own care, but often feels powerless when dealing with the medical system, or even their doctor.

    And its completely true that the input from patients already exists. all over the internet, people are sharing their stories and opinions. We’ve set up a site- http://www.speakhealth.org- that serves as a platform for people to share their ideas about how culture and health relate. Since working on the project, people have been coming out of the woodwork sharing their stories, and their concerns.

    ~c

  6. Great idea from @ePatientDave How about in addition to a Surgeon General, the US appointed a "Patient-In-Chief", too? http://bit.ly/4HSY0K

  7. RT @stupidcancer: @ePatientDave How about in addition to a Surgeon General, the US appointed a "Patient-In-Chief", too? http://bit.ly/4HSY0K

  8. Hi Paula! Yes, nurses can be phenomenal partners. Like anyone else, they can also be a schlumpf – but I know first-hand how great my nurses and nurse practitioners were.

    As much as possible I try to use the term “clinician” instead of “doctors” or other clumsy combinations.

    Agreed too about nurses being watchful advocates.

  9. Pete,

    Good to see you. Re the Institute of Medicine numbers, I don’t know anything beyond the report summary that I linked to.

    Well, I do know this – you cited 2,521 complications of medical & surgical care; the IOM report (page 2) lists these categories, as defined by the legendary Lucian Leape and others, and cites “two major studies” [unnamed] that obviously were done before the 1999 report:

    Diagnostic
    - Error or delay in diagnosis
    - Failure to employ indicated tests
    - Use of outmoded tests or therapy
    - Failure to act on results of monitoring or testing

    Treatment
    - Error in the performance of an operation, procedure, or test
    - Error in administering the treatment
    - Error in the dose or method of using a drug
    - Avoidable delay in treatment or in responding to an abnormal test
    - Inappropriate (not indicated) care

    Preventive
    - Failure to provide prophylactic treatment
    - Inadequate monitoring or follow-up of treatment

    Other
    - Failure of communication
    - Equipment failure
    - Other system failure

    SOURCE: Leape, Lucian; Lawthers, Ann G.; Brennan, Troyen A., et al. Preventing Medical Injury. Qual Rev Bull. 19(5):144–149, 1993.

  10. [...] Article e-Patient Dave, e-patients.net, 6 January 2010 SHARETHIS.addEntry({ title: "The Invisible Stakeholder: Why America Needs a Patient-in-Chief", url: "http://articles.icmcc.org/2010/01/06/the-invisible-stakeholder-why-america-needs-a-patient-in-chief/" }); [...]

  11. Yes, we need a Patient-in-Chief, and I nominate ePatientDave!

  12. Great post! I also nominate ePatientDave!

    I agree – We *need* a patient-in-chief. This is the missing link to organize patients, and ultimately, organizing patients is what’s going to drive projects like speakflower.org and other healthcare reform projects. Having a patient at the helm of these ships will be crucial for patient buy-in. Who’s the boss in healthcare? The patient. Most patients just don’t realize that. Having a leader will help them realize that.

  13. Thanks for the support, all. I don’t know if I’m the one – it’s not my point – but I do know we need one.

    Pete, several others have also mentioned that “patient in chief” may not be the right term. It implies being a commander, which isn’t at all the point. (I hope the proposal text makes that clear.)

    I’m open to other ideas. Last year someone said “Patient General” like “Surgeon General.” Not too catchy, tho, and I like catchy. :–) Other suggestions: Advocate General, e-Patient General ….

    Or hey, in honor of our founder Tom Ferguson, how about Ferguson General? Even sounds sorta like Surgeon General. :–)

  14. The Invisible Stakeholder: Why America Needs a Patient-in-Chief | #hcn #epatient http://ping.fm/ZX5ht

  15. Lee Aase says:

    RT @s4pm The Invisible Stakeholder: Why America Needs a Patient-in-Chief http://bit.ly/663chk

  16. Robert says:

    Glad to see someone finally step up and say that PEOPLE ARE PEOPLE. They’re not numbers or statistics–they mean a heck of a lot more.

  17. Dean Sittig says:

    I am a faculty member at the University of Texas School of Health Information Sciences in Houston, TX. We are working on a proposal to the Office of the National Coordinator for Health Information Technology to create a National Center for Cognitive Informatics and Decision Making in Healthcare. Major goals of our center are to help clinicians to adopt and meaningfully use Health Information Technology (HIT) but also to help patients who use HIT to communicate with their providers, manage their conditions, and receive training and education. As part of this effort we are looking for at least 2 representatives of patient advocacy groups to serve on our Project Advisory Committee. If you know of anyone interested in participating in this way, please have them contact me at: Dean.F.Sittig at-sign uth.tmc.edu
    Thank you so much.

  18. texmed says:

    RT @s4pm The Invisible Stakeholder: Why America Needs a Patient-in-Chief http://bit.ly/663chk

  19. ehealthgr says:

    RT @DrVes: Why America Needs a Patient-in-Chief http://bit.ly/4SGQzN

  20. RT @DrVes: Why America Needs a Patient-in-Chief http://bit.ly/4SGQzN

  21. carlosrizo says:

    RT @medxcentral: The Invisible Stakeholder by @ePatientDave: Why America Needs a Patient-in-Chief | #whyPM #epatient http://ping.fm/ZX5ht

  22. This is a simple, great idea!
    Elaine Schattner

  23. ePatientDave says:

    RT from Weds: My #Gov2 speaker proposal: The Invisible Stakeholder: Why America Needs a Patient-in-Chief http://is.gd/5Xopi

  24. @ePatientDave brilliant – why America needs a Patient in Chief: http://bit.ly/4Hsw93 (we have Poet!)

  25. Robert says:

    Great post! I nominate Joe the Plumber :)

  26. Why we need patient representation in government from @ePatientDave http://bit.ly/4SGQzN #gov20

  27. RT @s4pm The Invisible Stakeholder: Why America Needs a Patient-in-Chief http://bit.ly/663chk

  28. Abbie Citron says:

    RT @s4pm The Invisible Stakeholder: Why America Needs a Patient-in-Chief http://bit.ly/663chk

  29. ePatientDave says:

    @tealou Yes, that's part of what I said in my "Patient-in-Chief" speech proposal http://is.gd/5Xopi (Which got accepted, hooray)

  30. Téa Brennan says:

    The Invisible Stakeholder:<br>Why America Needs a Patient-in-Chief http://is.gd/5NIqd

  31. [...] it be like to have something this in the United States? Is this akin to @ePatientDave ‘s proposal for Patient-In-Chief and could it be a model? See what you [...]

  32. [...] among those with the most knowledge: people with lots of experience as patients. I cited this in my patient-in-chief proposal and a year earlier in my call for a patients’ speakers [...]

  33. [...] people talk about how consumers are the greatest untapped information resource in medicine, but the Pew Internet Project’s research shows that patients and caregivers are [...]

  34. [...] to have patients in all the sessions. Note, though, that they still have to donate their time. As I said in January, I bet this is one of the key reasons our health policies haven’t solved healthcare: everyone [...]

  35. [...] work has already begun. One of my personal favorites is e-patient dave’s catchphrase “Patient is not a third person word” (not sure if he coined this, or merely popularized it… either way, when I say it, I am [...]

  36. bonus bagging says:

    I do agree that america needs a patient in chief. Thanks for the good article

  37. [...] moral or ethical beliefs or belie their training or experience. Instead, it suggests that, to quote e-Patient Dave, “Patient is not a third person word.” Or, as Charlie Safran said in 2004, “I [...]

  38. [...] moral or ethical beliefs or belie their training or experience. Instead, it suggests that, to quote e-Patient Dave, “Patient is not a third person word.” Or, as Charlie Safran said in 2004, “I [...]

  39. [...] moral or ethical beliefs or belie their training or experience. Instead, it suggests that, to quote e-Patient Dave, “Patient is not a third person word.” Or, as Charlie Safran said in 2004, “I [...]

  40. [...] moral or ethical beliefs orbelie their training or experience. Instead, it suggests that, to quotee-PatientDave, “Patient is not a third person word.” Or, as Charlie Safran said in2004, “I want to note [...]

  41. Brian Ahier says:

    Your link to the testimony of Charles Safran to the Subcommittee on Health of the House Committee on Ways and Means is broken. Fixed link is here:

    http://waysandmeans.house.gov/media/transcript/9897.html#Safran

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