A patient in chief is what American healthcare needs


“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 recently,

  • “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.

Dave deBronkart, also known as e-Patient Dave, blogs at e-Patients.net and is the author of Laugh, Sing, and Eat Like a Pig: How an Empowered Patient Beat Stage IV Cancer and Let Patients Help!

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  • http://philbaumann.com Phil Baumann

    There’ so much that we can do, and the cost of not doing them is perhaps so great that it’s immeasurable.

    We need providers to become more Web and Tech literate.

    I consider Web illiteracy as costly today as traditional illiteracy – and that cost grows everyday as more and more people incorporate social media as staples of their daily communication: those providers who not only don’t learn about these technologies but also fail to re-think the ways in which they can collaborate with patients will fall behind.

    The most fascinating thing about Technological disruptions are the Ideological ones they generate.

    We not only must understand the Technology: we must question the Ideologies that drive – or stall – medical practice.

    @PhilBaumann

    • http://www.facebook.com/people/Ihsan-Shanti/100001034383174 vinisingh

      “here’ so much that we can do, and the cost of not doing them is perhaps so great that it’s immeasurable.

      We need providers to become more Web and Tech literate.

      I consider Web illiteracy as costly today as traditional illiteracy – and that cost grows everyday as more and more people incorporate social media as staples of their daily communication: those providers who not only don’t learn about these technologies but also fail to re-think the ways in which they can collaborate with patients will fall behind.

      The most fascinating thing about Technological disruptions are the Ideological ones they generate.

      We not only must understand the Technology: we must question the Ideologies that drive – or stall – medical practice.”

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  • http://fertilityfile.com IVF-MD

    The doctor-patient relationship has changed for the worse. In the past, doctors and patients entered into voluntary relationships. The doctor says to the patient, “I will do my best to attend to your medical needs”. The patient says to the doctor, “OK, I will compensate you for your time and energy and I’ll cooperate to help you help me.” With this construct, if either party ever falters in their side of the bargain, the other party has the freedom to first gently give feedback so that changes can be made to improve things. If that doesn’t happen, then either party has the right to leave and divert their resources towards forging better relationships with different providers or different patients.

    Today we have a system where a disinterested third party (politician or insurance company) says to the patient, “Hey, give me your insurance premiums, your vote and/or a chunk of your paycheck and I’ll take care of your medical needs” and then turns around, keeps a fat portion of the collected proceeds themselves for “administrative costs” and says to the providers “Here’s what’s left over of the money. You can have some of it if you take care of these patients”.

    The addition of this third party changes the incentives, the feedback, the level of accountability and the cooperative forces. To make matters worse, it’s often not just a third party, but a 4th party situation where the politicians / insurance companies say to the patient “Hey, I’m taking a chunk of money from OTHER citizen’s paychecks and/or from your boss and I’ll use it to pay still other people to take care of your medical needs.” Each additional layer widens the disconnection between the most important two parties, the provider and the patient, thereby leading to the suboptimal system we have today.

  • http://participatorymedicine.org e-Patient Dave

    Hi IVF,

    I hear you loud and clear – I’ve often wished the middleman would get out of the way and let doctors and patients just do frickin’ healthcare.

    What do you think of concierge / fee-for-service medicine?

    btw, do you see my post as being inconsistent with your comment?

  • http://www.pacificpsych.com/ pacificpsych

    Dave,

    Doctors and patients are on the same side. And they both have no control over healthcare. I agree that patients have no voice. We’re all patients at some point or another, so that basically means that the individual has no voice.

    The people deciding things are for profit insurance company and various administrators and bureaucrats. Nothing is done in a logical manner. Doctors spend most of their day filling out nonsensical paperwork. If they’re self employed but accept insurance, as most do, they spend much of their time chasing after payments. If they’re employed, they are lorded over and often belittled by non medical admin.

    What needs to happen in this country is a return to the sanctity of the physician patient relationship. Along with national measures to create intelligent EMR and accesible databases and access to specialists in any state, without bureaucracy. That’s the key.

    Remove third party intrusion. Allow common sense and technology and entrepreneurship to flourish.

    It’s important to understand that doctors and patients are both trapped together in this mess.

  • http://www.clear-voice.com Lygeia Ricciardi

    Hi Dave —

    Great post. It’s easy to think of patients in the third person–until suddenly you or someone you care about needs help. At which point, of course, you are worried, overwhelmed, and possibly in pain. (And it’s not as if the rest of your life–your job, family, etc just goes away to free up your time… being a patient or caregiver is in itself a new vocation!)

    When you become a patient–or caregiver–it’s all you can do to try to avoid the pitfalls of poor care and navigate the system as best you can. It’s the rare person who steps beyond that to try to fix the system as well–and I agree with you that such people need financial and other kinds of support.

    I know you’ve commented on my thoughts http://tiny.cc/46mpa on how patients need support to engage more publicly in health IT policy especially–a Patient in Chief fits in well with those ideas.

    Thanks to you for continuing to play that kind of a leadership role yourself, despite large obstacles and often minimal financial returns.

    - Lygeia

  • http://gumption.typepad.com Joe McCarthy

    I completely agree that providers and seekers of healthcare would benefit tremendously if the people currently known as patients were more frequently addressed in the second person, more frequently listened to when they speak in the first person, and more generally regarded as first class citizens in the medical-industrial-insurance complex.

    However, seeing “patient-in-chief” reinforces the inadequacy of the word patient to describe those seeking healthcare information and/or treatment. An earlier blog post I read about Regina Holliday’s perspective on the Health 2.0 Conference – an event where I know you were also a first-class participant – prompted me to ask if we need a new word for “patient”. I’m fairly new to the Health 2.0 discussions, so perhaps this is viewed as a non-issue, or a low priority item, but as I noted in my bog post, I do believe that language affects perception (as Frank Luntz has recently demonstrated with “global warming” vs. “climate change”, “estate tax” vs. “death tax” , and “third trimester abortion” vs. “partial-birth abortion”).

    Unfortunately – and I realize this is a big part of the problem – I don’t have a better word to propose, but while I agree with all of your arguments, “Patient-in-Chief” suggests (to me) someone who is supremely patient, nearly the opposite of someone supremely proactive, which is more of what you are proposing.

  • http://participatorymedicine.org e-Patient Dave

    Joe, on the gameboard of healthcare awareness, you indeed skipped way ahead to the semantics issue. Some people feel that “patient” implies a submissive position (I disagree), some feel that “consumer” is more empowering but others feel it’s disempowering, etc etc.

    I said “patient-in-chief” simply because it implies a position of recognized importance, a voice at the big tables – and because it’s catchy. When I first wrote this somebody said “Waddaya mean, In Chief?? You want to be in CHARGE of me??” Hardly.

    It’s a subject that can consume people forever, and maybe we should go deep on it within the Society for Participatory Medicine. (Disclosure: I’m voluntary co-chair.) They/we use the p-word in the definition of that discipline:

    Participatory Medicine is a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.

    “Encourage and value” swings both ways. I don’t understand why someone would stay with a physician whose style doesn’t match their own – if they’re able to move. And that brings us back to the commonly disempowering aspect of having insurance companies in the middle.

    — As I said above, I’m curious what people think about concierge medicine, aka “direct pay.”

  • epatientgr

    congratulations Dave! you hit right! this is an excellent post that I will use in my blog today reporting from the 2nd Conference on Digital Health in Athens, Greece.

    The participants in their great majority were representatives of the IT companies, of public Information Society authority, while I participated not in my professional capacity, but as a BrCa & Patients Rights Advocate. The public authority and company reps spoke about the current state of affairs in Hospital Management Systems applications and mentioned more than once that they had conferred with the “users” of the system.

    So, at the Q&A sessions I addressed the following question to the public authority reps: In your presentations you referred to “users” with whom you have conferred during the planning period. To which users are you referring? I don’t believe you referred to patients and patient orgs because I would know.
    The answer was: NO, we referred to health professionals and hospital admin staff. Why should we involve patients? What patients have to do with a HMS?

    I retorted: Patients and more exactly users of healthcare systems, have a lot to do, not only because they should know how and when they are invoiced by healthcare providers, but also because they can be instrumental in the design of such systems and sub-systems e.g. EHR, e-prescription, e-appointment, etc.

    Another panelist answered: I don’t believe patients and patient orgs are interested in these issues!!!. This is a technical issue!!!…

    You have guessed right what was my explosion. So your post comes at the right moment as a supporting document for reporting on this conf.

    Thanks Dave!

    • http://participatorymedicine.org e-Patient Dave

      Are you saying Europeans at this conference believe citizens (patients) don’t want to be actively involved in their health? Have they seen the reports from Health 2.0 Paris?

      • http://epatientgr.wordpress.com epatientgr

        Exactly, European public servants entrusted with the design and implementation of the HMS don’t think patients have anything to do (aren’t competent) with these systems and moreover, they also THINK patients DON’T WANT to get involved.

        I also touched during the break with some of the panelists the issue of health and digital literacy and stressed the need to educate health professionals, patients and health providers admin staff. As long as these groups are illiterate, they will resist change or will not get engaged. Pointed also that it is the Health Ministry’s duty to engage all stakeholders into a disussion on what is e-health, what ehealth means for each, what is at stake for each. Without both health & digital literacy education and real and sustained engagement efforts, new HMSs are destinated to failure (docs already refuse to use pc to fill in EHRs, nurses claim it’s the job of docs, etc.)

        • http://participatorymedicine.org e-Patient Dave

          As you probably know, the mood in the US government is changing to be much more patient oriented. THIS IS CONSIDERED AN EFFICIENCY ISSUE: patients CAN do something useful to reduce costs and reduce pressure on doctors.

          Email me if you want to discuss further …

  • http://twitter.com/pnschmidt pnschmidt

    Great post. Patients and “the system” have different goals: patients want the best results and “the system” wants predictable results. Metal-on-metal (and ceramic on ceramic) total joint replacements, deep brain stimulation for Parkinson’s disease, and for many other therapies both the best and the worst results are achieved with the same therapy. In general, the healthcare system avoids such therapies because in our system of calendar-based follow-up, it is important to be able to ensure that, in say 6 months, the likelihood of an emergent complication is minimal.

    (Note that I refer to “the healthcare system,” including insurers, payers, and providers, as patients purchase their care from insurers and that care is delivered by providers. A physician’s actual customer is the insurer, not the patient.)

    Patients, however, are often willing to take risks that the system would never allow. Beyond controlled clinical trials, we see people with sufficiently bad allergies have infected themselves with hookworms. People with neurodegenerative disorders will fly overseas for absolutely bogus stem cell therapies. People suffering from debilitating, incurable illnesses have long been targets of fraud involving the sale of hope, when the system had none to offer.

    Even within semi-mainstream alternative medicine, there are serious dangers. A Brazilian fruit known as Graviola or Soursop is used as a remedy for a number of conditions but has recently been established to be a neurotoxin.

    It is critical that we include patients in designing the system of the future as we need to ensure that healthcare is delivered in a system we all can happily consider closed — without need of seeking care outside the system where patients are often considered victims. We need to balance safety, efficacy, and hope as we reform care.

  • http://paynehertz.blogspot.com Payne Hertz

    The idea of greater patient input into the medical system is a good one on paper, but it is difficult to see how that would be achieved, particularly if the more powerful players in the system are uninterested or hostile to that input. I don’t agree that we need a “patient-in-chief” so much as a greater willingness by doctors to realize that the patient-in-chief is the person sitting on the other side of the desk from them. Different patients have different concerns, and there is no one patient point of view out there that can be represented by a single individual. Even if it were possible for a single individual to somehow represent the collective wishes of the majority of patients, who is to say he or she would do so? The same “perverse incentives” that distort the rest of the system might influence our PIC as well. Who is to say that the PIC would not just become a rubberstamp for everything the system does whose sole role is to give the system the imprimatur of “patient” acceptance? Would he or she be a national version of the “patient advocates” (aka hospital apologists) employed by hospitals everywhere?

    Medical societies need to develop some mechanism to run their flights of fancy by the patients who are going to be effected by them rather than using trial and error for everything they do. Very often, treatment guidelines are not governed strictly by science or the best interests of the patient, but by the self interest of doctors, or the demands of government or insurers. Ultimately, the purpose of a medical system is to provide medical care to patients. That has to be its first priority. But in our system, patient needs are often the last priority, after profits and regulatory capture. All this “get government out of the way” stuff is not about empowering patients, but giving doctors and hospitals greater control with less accountability. Greater control by doctors means less, not more, autonomy for patients. As it is, patients are powerless to do anything in the system other than to refuse suggested medical care, and they are sometimes punished for doing that. Our primary influence comes in educating each other, not in influencing the nature of the system. Money talks, and it is difficult to imagine that money will pay anything other than lip service to patient advocates who have no teeth.

    I would prefer to see something like a national patient union where we can actually exercise some clout over the system, and where we have real influence in determining how medical care is to be delivered and how it is to be paid for, not just the politicians, doctor groups and insurance companies.

  • bw

    A patient-in-chief? A national patient union? It is ridiculous that such things are needed! Believe me when I say that I completely understand the need for such things, but that the individual is so lost in this current system as to need a multitude of people with different complaints, beliefs, and prejudices to band together to have a voice loud enough to be heard is signal to me that we need to start over. Each individual person needs to be at center stage making decisions, not a group that may not represent their individual problem.
    Investigate and encourage the low-overhead, budding cash practices that are springing up all around the country. Have insurance companies deal directly, and have accountability, from their consumers–you and me–instead of the wheeling and dealing that goes on in back rooms with ‘your interests in mind’.
    Look into it, and if you like what you see, mobilize your numbers and support behind that system. Only then will things change.

    • Jennifer E

      I joined one of the direct pay demonstration projects – Qliance here in Seattle and I paid over $1000 for a year of access to primary care.

      Although the visits were longer it was the same outdated none evidenced based care that most of us get elsewhere.. After a couple of hundred dollars of baseline lab tests (few of which are evidenced based for my age) and 2 visits over the course of a year my health was no better.

      What it really seemed to be was a way to increase the income of the primary care doc, At 1000 per patient and a panel of 600 patients the gross is over 600k. The staff was minimal and the MA didn’t even know how to take a blood pressure so I hardly see this as the future of medicine unless you want some patients to get concerige care and the remaining ones to be pushed to the other docs who already have over 1500 patients on their panels.

      This is a piece meal approach to a systemic problem. Although an individual could buy their way out of the health care mess it won’t result in higher quality, more effective, patient centered care for everyone (which I hope is the goal?)

  • http://participatorymedicine.org e-Patient Dave

    bw, I hope it’s clear from my post and comments that I think the system would work better if, indeed, individual patients and individual physicians were free to do business with each other – to simply “do healthcare” together.

    At present all of us are bound up in a reimbursement system that’s largely run from Washington, and that’s why I think it’s a potent place to seek short-term interventions.

  • http://paynehertz.blogspot.com Payne Hertz

    Another problem of course is that under the current or any forseeable system, freeing doctors and patients to “do healthcare” together does not in fact increase patient autonomy an iota. It might enable the doctor to be more flexible or aggressive in his approach, or it might enable doctors to be more dismissive and haphazard as they no longer have to fear as much oversight.

    As an example I have fibromyalgia and just learned about a study suggesting that Naltrexone in low doses might reduce pain and fatigue for fibro patients. If i had any autonomy at all, I would have already gone to the drug store, bought the drugs and started the therapy the day after I learned about it. As it is, I cannot get this med without a prescription, which means I now have to wait until I see my doctor in two months and try to persuade him to try me on an unproven therapy. My odds of success in this are almost nill, so I will probably have to spent a lot of time and money “doctor shopping” to find a doctor willing to try this, or wait months or years until it becomes an approved therapy. This same pattern of begging, pleading and doctor-shopping is something I’ve had to engage in to get the tests I feel I need as well.

    True autonomy would mean I don’t have to go to a doctor at all unless I wanted to or really needed his advice. As it is I am forced to play this tiresome game of convincing a god that a pathetic mortal like me might know something he doesn’t. “Doing healthcare together” is often a coercive and counterproductive experience I’d prefer to avoid altogether.

    • http://participatorymedicine.org e-Patient Dave

      I hear you, Payne, when you say you want complete autonomy, perhaps in what some people might call a totally libertarian way: full authority and full responsibility. (I hope nobody will yell at me for saying “libertarian” – I’m no expert on the subject.)

      I guess I still wouldn’t agree that that’s “no autonomy at all.” I get your point; but in my view it’s a spectrum.

      I get just as irritated when a doc is told no by an insurance clerk as when a patient is told no. Personally (and this is off topic for the current post), I think the biggest transformational force will be when everyone involved has full visibility into options, costs, and outcomes, and has full mobility to vote with their feet.

      • http://paynehertz.blogspot.com Payne Hertz

        Why does increased patient autonomy have to be coupled with full responsibility? Or rather, why don’t we demand the same for doctors? The reality is there is a reason we have so much involvement by government and insurance companies in the decisions of doctors. It is because they are forced to be involved. It is estimated that fraud in the system may be as high as $250 billion a year. There is an epidemic of malpractice and deaths due to medical error, hospital infections and adverse effects of drugs—some 250,000 deaths a year and 2 million injured. There are tens of thousands of unnecessary surgeries performed every year, and millions of unnecessary tests and prescriptions, all of which increase deaths, injuries, risks and costs with little or no benefit for patients. Doctors and hospitals rarely if ever acknowledge any responsibility for any of this let alone make any serious attempt to deal with these problems. It is always somebody else’s fault. Given the failure of doctors and hospitals to take responsibility for their multiple failures, can the government and insurance companies really afford to give doctors and hospitals a blank check for anything they want to do? It sucks that legitimate doctors aren’t being reimbursed for legitimate medical procedures. No one should be expected to work for free. But they have themselves to blame for that, yet they blame everyone else. Many doctors endlessly preach the gospel of “personal responsibility” for patients even going so far as advocating punishments for patients who exercise their right to decide what they will and will not do with their own bodies, yet they expect complete autonomy with zero responsibility and accountability for their screw-ups, profiteering and fraud.

        The fact is, you cannot have a free market system for medical care. Our system is a classic example of market failure in that the market always creates perverse incentives for doctors and hospitals to behave in a way that is contrary to the interests of patients and society. The rent-seeking, profiteering, fraud and corruption that plagues our system will always be there so long as there is a profit to be made from engaging in this conduct. The rest of the world has wised up to this fact and nationalized their health care systems, with the results being cheaper, safer, more effective and universal medical care. The wheel has been invented, it is round, and it works better than what we have. Keeping the system running on log rollers because it benefits the log roller industry is insanity, and I think we as patients need to be careful about aligning ourselves with the dreams and schemes of those in the system whose primary goal is not to improve outcomes for us, but to increase profits while eliminating what few checks and balances the system has.

  • http://fertilityfile.com IVF-MD

    True. Third (and fourth) parties have intruded into the traditionally-sacred patient-doctor relationship and are seeking to intrude more and more. It’s interesting the general agreement among the public, here on this post and out in the real world, that many people relish the idea of politely telling bureaucrats to keep their hands off of healthcare, but yet they continue to vote for politicians whose actions are in line with growing the power of government more and more. What ways are there to shift the balance towards more patient and doctor autonomy in decisions with less of the decisions being made by politicians, lawyers and corporations? Any ideas?

  • Sherry Reynolds

    Thankfully there are systems that put the patient first that already exist. Here in the other Washington we have Group Health Cooperative that is owned and run by its 580,000 members. Not only do they already have a robust EHR with full patient access (not just email and appts but you can see your lab results in real time not after making a request or waiting 4 days).
    Over 30% of all visits are done virtually and they have invested in the resources to move their entire family practice to the medical home model which focuses on outcomes not on how we can bill more per visit.

    Although individual patient stories and advocates can be powerful and transformation what we really need are patient centered design principals and values embedded in the health care systems and tools that we create. We already are doing that here in the other Washington. Come and visit us.

    (Disclosure I do not work for Group Health but I used to).