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. 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.”

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

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.

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 it – 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.

Nine years later, patients are still the invisible stakeholder, costs have risen another 97%, and quality is no better. Today more than ever, America needs a patient-in-chief. This talk will say why.

1Testimony 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]

Dave deBronkart, better known on the internet as “e-Patient Dave,” is one of the leading spokesperson for the e-Patient movement. A high tech executive and online community leader for many years, he was diagnosed in 2007 with Stage IV kidney cancer, with a median survival of just 24 weeks. He used the internet in every way possible to partner with his care team and beat this unbeatable disease. Today he is well. In 2008 he discovered the e-patient movement, and began studying, blogging, and speaking at conferences, and in 2009 was elected founding co-chair of the new Society for Participatory Medicine. In 2010 he released his first book: “Laugh, Sing, and Eat Like a Pig: How an empowered patient beat Stage IV cancer (and what healthcare can learn from it).” He blogs frequently at e-patients.net.

16 replies »

  1. In my state over 300,000 patients are self insured and for a 50 year old female that costs $640 a month, with a 1000 deductible and an 80/20 split so you are out of pocket almost 8,000 a year before the first dollar of coverage.

    If this was an employer group it would be the largest in the State and able to negotiate the best rates and benefits but instead they get the worst rates and coverage options.

    It is a canard to imply that patients are “consumers” and if you shift costs they would somehow magically be able to tell their doctors what tests and procedures to order. The driver is the providers and health care systems (and insurance companies that feed off all three) not patients.

    It isn’t that patients don’t have a vestsed interest it is that they are the only ones who don’t “profit” off the system.

  2. Couldn’t agree more. The voices of patients generally are unheard when it comes to forming the health policy that controls the system. The 800 lbs gorilla, Medicare, is influenced by what they believe are the stakeholders. Providers, industry, institutions and advocacy groups are all considered stakeholders and have a seat at the table. The void that needs to be filled is a group that effectively represents the patient and e-patient Dave points out that you need to pay to be heard. Raise money to organize and be heard and suddenly the source of the money wants to be heard instead which is the problem with disease advocacy organizations. Until we can find a way to engage patients in the policy debate without conflicts of interest, we will continue with policies driven by special interests.

  3. Be an extremely smart patient. Learn about what is wrong with you and why you are in the hospital, as well what is being done and why. Learn the medical lingo and pay attention. Its not unlike the incarcerated who have to learn the law in order to better advocate for themselves. They become experts. Become an expert in your own case. Don’t be afraid to speak up while hospitalized, despite the fact that not everyone will like it. In fact, many Drs. and nurses will not. A few will appreciate you for it. Don’t check your brain in the admitting office; you may need it more than ever!

  4. Very true, the legislation is going to determine the future of EHR in US healthcare industry.
    I think till today there have been good guidelines and certification provided by the government but there seems to be something missing.
    Today medical practitioners are looking to avail of this federal incentive by trying to comply with the definition of meaningful use but at the same time EHR providers are looking at their own set of profits.
    This misunderstanding is mostly I believe as a result of wrong interpretation of the federal guidelines. The EHR providers need to look at these guidelines from the prospective of the practitioners who deal with different specialties.
    Each specialty EHR has its own set of challenges or requirements which I believe is overlooked by in most EHR vendors in an effort to merely follows federal guidelines. This is resulting in low usability to the practitioners, thus less ROI, finally redundancy of the EHR solution in place.
    I think ROI is very important factor that should be duly considered when look achieve a ‘meaning use’ out of a EHR solution. Though one may get vendors providing ‘meaning use’ at a lower cost, their ROI / savings through the use of their EHR might be pretty low when compared to costlier initial investment.
    I think the federal efforts of providing the right incentives to practices who implement certified EHR’s following the appropriate federal guidelines is a great initiative. But these initiatives without the appropriate infrastructure of good quality REC (regional extension centres) and the use of right tools and services would be of no use.
    What do you all think?

  5. Total agreement with MD as Hell. Even though patients are the lifeblood of the healthcare system, they are not the ones holding the money, so they don’t hold the cards. The insurance companies do…why do you think they have pull in Washington and at every single hospital in the country?

  6. Yes it is time for the feudal mishief in the health care industry to be spent and for the greatest stakeholders in health care- “patients” to be heard and their needs to be considered. Structural changes are needed and on board and committees in hospitals, clinics, nih, etc real people instead of experts should have the power to make decisions about health care. The experts in health care are fat cats who lack critical distance from their ways of doing things and that is why progress is so slow in health care.

  7. I couldn’t agree more. I have been reading information from the Institute of Interactive Patient Care which is focused on research that shows how patient outcomes improve when they are put at the center of health care & given much greater access to education and input. check out http://www.InstituteIPC.org.

  8. We have seen our American people suffer because of a lack proper preventive medical assistance. The poor face the largest strain and are dying from illnesses that we have found cures for. If America is this great industrialized nation that is seen as one of the most advanced, why is it that we are by far the weakest in protecting what makes America so great?: The America people. Why are we the ONLY industrialized nation that has yet to set into place a universal health care system that would benefit this “great nation” tremendously? Its evident to me that the bulk of this problem is the American greed.

  9. Kimberly,
    Appreciate your unappreciated service.
    Reminds me of some paramedic unit personnel in Australia who pick up trauma patients hurt by alcohol intake and related accidents. She was saying that Australian society glamorizes wine and alcohol drinking and to say against it would be a taboo. Yet they are the ones who see what it does to families and innocent. They have seen it and they have nothing best interest in their hearts.
    Dave- A very good article and thanks for espousing the cause of those at the bottom of food chain.

  10. It appears as a nurse I practice in everyone’s backyard. Our culture is driven by the desire for wealth in all aspects of our lives until it comes a time when wealth is unable to keep you from pain or the fear of dying. It is amazing how the patients are invisible to the decion-makers until the decison-makers become the patients e.g. if we really lived in a just world, at some point in time in the life of some CEO of some big health insurance company he/she or a loved one would be admitted to a hospital for an illness (diabetes) he/she is assessed and treated by healtcare professionals but he is unable to ask questions and seek clarification, sent home with a bill over $10,000 (all inclusive of being given insulin, a bed in the hallway, ten hour wait for labs and verification of insurance, lab tests, given a prescription for medication that he can’t get filled once at the pharmacy because its not covered under the plan that he designed of course and to top it all off two days later he’s sent a statement and notices that the plan he so well designed doesn’t cover anything done at the hospital and his insurance is cancelled because of a preexisting codition). Those are just a few of the things the “invisible” experience and for the chronically ill putting a limit on how much a person can utilize within a year is unthinkable because then they will begin to use the ED and that is a drain on resources. I am a virgin to blogging but I wanted to share my thoughts. I hear and see the “invisible” because they are me and I am them. It only takes the right stressor to come along and we have to walk a mile in another’s shoes.

  11. bev M.D.
    I think I practice in your backyard. And by pets I mean patients are treated by their insurance masters like pets are treated by their masters: as the master chooses.
    What did you think I meant?

  12. Well said, Dave.
    MD as HELL, “pets”? wtf???? I hope you do not practice near me.

  13. There should be no debating over our health care. We are all patients. Our costs are too high, insurance companies are making a killing, hospital administrators get paid way too much (more than physicians and other health care professionals), and because of these practices the patients become the victims. The patients are the customers; the customers are always right. Patients beware of your hospital. Hospitals (not physicians) are notorious in placing profits before patients. Hospital administrators are business people (not health care professionals) and they don’t care about our health. Their concern is profit. That’s their bottom line, not making us better. For tips on how to improve patient safety, please visit http://www.LeapforPatientSafety.org. Many thanks.

  14. Dear e-patient Dave,
    You state: ““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.”
    “Safety and efficacy” appears zero times.
    Dave e-pt, we the patients do not need a patient in chief. We simply need the deceit and bullying by the HIT industry to stop and for Congress to recognize that it has been manipulated into paying for medical computers that are meaningfully useful but unsafe.

  15. Patients will never be “linked in” until they are holding the money they spend on healthcare.
    Only then will they have the atention of the providers and the politicians.
    As it is now they are meerly pets.