Saturday, January 10, 2015

Lightning goes to ground

I respect and admire Lucien Engelen, the spirit behind the REshape Center for Innovation at Radboud University Medical Center in the Netherlands, so when he recently posted an article entitled, "10 TED talks that change(d) healthcare," I was intrigued.  Who doesn't love TED talks, after all?

But then I concluded that he was off base.

Not because the talks aren't great.  They are great.  They are stimulating, well presented, thoughtful, and challenging.

But they have not changed health care.  Look through the talks and see what's imagined in them. Now, compare them to what's happening on the ground in most places.

(By most places, I am talking about the economically developed countries.)

What we see in those countries is the presence of two inexorable forces.  One force comprises underlying demographic factors.  The old are living to an ever-older age and are putting unprecedented demands on the health care system as we take care of their chronic and acute illnesses.  Meanwhile, the next generation (the Baby Boomers) have entered the age of hospitalization, compounded by an extremely high level of entitlement.  ("I hurt my knee playing soccer.  I need to be able to play as soon as possible.  I demand an MRI and arthroscopic surgery to repair that rip.") And, finally, the next generation is characterized by a sedentary lifestyle, which has and will lead to obesity, diabetes, and the sequelae of those diseases.

Meanwhile, in the face of this demand, pharmaceutical and technology companies invent new diagnosis, treatments, equipment, and supplies.  They seek to grab their portion of the growing health care budget.  Very few of their inventions, whether efficacious or not, lower the cost of health care.  They tend to be additive.  (And, by the way, many are not efficacious.)

So what we find around the globe is a persistent growth in health care expenditures.  Because there is a limit to society's ability to absorb such expenses, the costs are being pushed down--step by step--to those least able to seek alternatives, the general public.

Daniel Palestrant, the highly thoughtful CEO of Par80, has recognized this phenomenon and has likened it to Benjamin Franklin's most important invention, the lightning rod:

In this country, when it comes to healthcare, lightning has indeed struck.  Like a bolt of lightning hitting a colonial building (which were largely made of wood), the energy must find a path to ground as quickly as possible, scorching everything on the way down.  The question isn’t whether it will find ground, it is only how much collateral damage it will do as it gets there.  The healthcare crisis is lightning hitting our society.  If it isn’t managed carefully, it will burn down the house.

As healthcare costs have exploded, the cost and responsibility has been shifted from private companies paying for employee benefits, to physicians, to insurance companies, the American taxpayer, and most recently, the Chinese (who we have been asking to lend us the money to pay for these costs).  In turn, each of these parties has now found a way to either defer the liability or signal they are no longer willing to finance the effort to sustain the status quo.

Lightning grounds when costs and responsibility are shifted back to the only remaining entity….the patient.  That’s where we are heading.

Daniel offers a hopeful prediction:

It’s not all bad, though.  Directly engaging consumers in their own healthcare will inevitably lead to two trends:

Disintermediation - As the lightning accelerates, it will look to cut out as many intermediaries as possible.

Price to Value - Once consumers are more responsible and accountable for the cost and manner of their own care, it will become more likely that healthcare goods and services will be priced on relative value, rather than an arbitrary value set by a third party.

Well, maybe. I think that some consumers will have those opportunities, but I think that most will not.  Taking just one recent item, the trend to high deductible health plans, we already see the growth of inequity based on income.  Lower wage people choose the high deductible plans to reduce their monthly premium, but then they systematically choose to avoid spending more of their disposal income by deferring or avoiding appropriate medical care.

As the Institutes of Medicine recognized years ago, a health care system that is not equitable is one that fails.

I bet if we surveyed the viewers and listeners of TED talks, we would find a bias towards higher educated and wealthier people.  Sure, they're really excited about the ideas Lucien proclaims as changing the system in the direction of higher quality, greater safety, and lower costs.  And sure, many firms in the marketplace will aim their products and services to those groups.  How much will trickle down to the rest of society?

My fear is that what trickles down will not be the innovations that bring about higher quality, greater safety, and lower costs.  What makes me pessimistic?

Frauds already abound, attacking the economically weakest in society.  As Al Lewis, Vik Khanna  and Shana Montrose have documented, the so-called wellness industry has started to impose its own form of tax on the health care system.  In cahoots with the HR departments of firms that have pushed deterioration of employer-sponsored plans, the wellness companies offer a "goody bag" of options that appear to help you save money on your premiums.  Well, that's the first step.  The next step is that you get penalized if you don't "comply" with the wellness plan your employer has chosen.  Who won't be able to comply with the exercise and diet programs?  I'm willing to predict it will be disproportionately the lower wage earners.

On this blog, I've documented aspects of how direct-to-consumer approaches have empowered medical device companies to charge consumers for unnecessary costs.  I've pointed out how the medical-industrial-government complex aids and abets such practices through opaque rate-setting and rule-making procedures highly influenced by those same companies.  When those higher costs get passed along directly to consumers, they act as a regressive tax on those with lower incomes.  When they get passed through indirectly through Medicare, they end up stretching the government's budget.  Searching for budget relief, CMS engages in arbitrary penalties for failure to meet arbitrary quality metrics.  Which organizations tend to do worse on those metrics and pay the penalties?  The hospitals serving the lower income portions of society.

Let's look at other industries that have moved in the directions predicted by Daniel for health care--disintermediation and price-to-value--like finance and banking and telecommunications..  While we can point to overall societal gains in each of these fields, the predominant part of the value obtained from these structural changes has tended towards the wealthier components of society.  Why should we expect health care--which is intensely more complex than any of those other sectors--to behave otherwise?

I don't offer these thoughts out of some socialist desire or expectation.  I offer them to remind Lucien and others that their job isn't done until or unless there is a greater democratization of the benefits of all those innovations.  That democratization will not arise from lovingly produced TED talks viewed by the elite in society.  It will require a movement from the patient advocacy world.

That world, however, remains inchoate.  Many patient advocates arrive to this field as a result of personal injury to themselves or a loved one.  They are not trained in the skills needed to build coalitions.  They are on their own, without sufficient resources to get their own word out, much less have the time and energy to meet with other and build a national movement.

There is no established organization in America or, from what I have seen, other countries that has devoted itself to the promotion of a vibrant, widespread patient advocacy movement.  Those that might have done so have shied away from this kind of engagement--perhaps because they know that any movement so constituted will be unpredictable and beyond their control.  Yes, some hospitals seriously try to engage patients in a clinical partnership, using advisory councils and the like, and these efforts are useful.  But they only go so far in that they are islands of activity with little or no crossover beyond the catchment areas of each hospital system.

Years ago, I came to know a wonderful man, V.B. Mishra, who was engaged in trying to stop the pollution of the Ganges River.  He decried the lack of political support for this effort, saying, "The river needs its Gandhi." Well, the truth of the matter is that Gandhi's and Mandela's and M.L. King's come along very seldom and usually only in times of great change and crisis.  During most times, it is not a single leader who brings about change: It is a coalition of many local leaders who figure out how to join hands and bring persistent pressure on the body politic.  Until the patient advocates figure out a way to create that coalition, the lightning will go to ground in a manner that many of us will consider inequitable and inconsistent with the objectives of political stability and economic prosperity for all.


Anonymous said...

The part about the advocates as a result of injury is dead on right. We actually have talked about it on other forums, as several groups but NOTHING that is a unified national group with power/teeth to do something.

The problem is how we can get one. Being a CEO of a major corporation, any ideas?

Kathleen Kubit said...

From Facebook:

As I read thru this well-written & informative article, I was reminded of how frustrating it is to be a cost-conscious patient/consumer. Having to pay out-of-pocket, I would ask what a procedure cost & would be routinely denied information. The insurer could not advise me as they couldn't guess what a doctor would order; the Dr's office couldn't provide quotes as they don't get involved in what things cost; the hospital finance dept couldn't tell me what procedures cost, again, because they don't know what a Dr. would order. This run-around happened repeatedly over the past few years. Tough to be a self advocate when you are denied basic information - hard pressed to think of other industries that can get away with denying consumers pricing information.

Dave said...

Excellent post, Paul. There's no doubt there's a big challenge. I'd add a couple thoughts to give some optimism...
1. Looking to the incumbent, volume-incentivized organizations for a way out of this immense predicament seems futile. In contrast, I see MD-entrepreneurs leading emerging organizations that are making a dent in out-of-control spending (and sub-par outcomes) in Medicare, Medicaid, and the private sector (employers & unions). Iora Health, ChenMed, CareMore, Qliance, etc. Google "Marcus Welby/Steve Jobs Solution to the Medicaid-driven State & County Budget Crisis" or "Hot Spotters Sequel: Population Health Heroes" for how it's being done. I'd love it if those (and other) orgs scaled faster but they are growing pretty rapidly with tremendous results.
2. I agree with your statement "During most times, it is not a single leader who brings about change: It is a coalition of many local leaders who figure out how to join hands and bring persistent pressure on the body politic." I'm attempting to catalyze a movement of this sort. There is some traction in Seattle to make this happen. I think of it as the healthcare equivalent of developing the Rosetta Stone. Healthcare is massively complex but there are ways to chip away at it. We can use some techniques that borrow from the open source movement as well as crowdsourcing (a la Wikipedia).

The TED Talk that had the most profound impact on my thinking is Bill Gates' talk on how state budgets are being devastated by healthcare costs. In turn, that it devastating education (he gives a Mass. example of the implications of it). Follow the link near the start of the Marcus Welby article to watch it. The way I think of it is there is a "bandit" (healthcare waste/overuse) that is stealing from citizens, state budgets, corporations, etc. The challenge is getting individuals to join in common cause to fight the "bandit". Unfortunately, the dysfunctional dynamic where the health insurance company is an adversary doesn't help this cause. This is a key reason I believe "Negaclaims" (another term you can Google) is one way for this dynamic to be altered for the good of individuals, insurance companies and more.

Bebe said...

There are movements afoot -- and the established powers work hard against them. When I was a freshman at Vassar College, every female student was given a copy of the book Our Bodies, Ourselves -- it was a feminist health care empowerment manifesto. If we all learned about reproductive and sexual health, we would be empowered over our health. In the NY Times magazine at the end of the year, there was a brief article on Shirley Temple Black and her role as a patient advocate for women with breast cancer. In her time, it was standard practice for physicians to make the decisions for women -- and many received radical mastectomies whether then needed them or not. She insisted that she have the choice over what happened to her body. She would make the decision about what type of surger after she received the results of a biopsy. She encouraged other women to be empowered decision makers over their own health. I saw this empowered approach when my sister went through breast cancer treatment a few years ago. She was a scientist and reviewed the literature on her condition. Her oncologist used a shared decision making approach to planning her care. If consumers knew the outcomes of many surgical procedures, they might think twice about them. Consumer empowerment starts with good information, and access to it.

Initial Truth said...

The premise that TED Talks change health care is absurd. TED Talks may forecast change brilliantly or suggest changes incisively, but they don't actually change facts on the ground unless those with the power to make change adopt their suggestions.

Imagine Barack Obama giving a brilliant speech about health reform -- but without being president or having a Democratic Congress as president. Or MLK Jr.'s "I have a dream speech" as a TED talk.

You get the point. Visionary speeches can lead to change. TED talks are not exactly a grassroots change venue -- even if streamed for free.

JeanneFromClearhealthcosts said...

Great piece, Paul. Couldn't agree with you more. We think there's hope, though.

We see great promise in coming together over calls for full-on transparency, of prices and outcomes. The web has brought transparency to car sales, airline ticket sales and real estate sales. Once they were all opaque, closed markets, where power brokers talked of "proprietary information" and refused to disclose (or were unable to disclose) important information for consumers. That all changed, and it's changing now in health care -- partly because the rise of high deductibles has left so many people with "gotcha" bills and/or delayed or forgone treatments because of the money, and partly because the system is so darned broken.

Our California PriceCheck project, in partnership with KQED public radio in San Francisco and KPCC public radio in Los Angeles, is about to be replicated in other cities. We see a consumer revolution taking place, and we are showing a clear path to help make change happen. It's a great place for journalists like us to be, also: making change happen, shining a light on good and exposing bad, helping people. What more could a journo want!?

Here's the Harvard Business Review piece i wrote about our PriceCheck project.
And here's our partner's piece in JAMA Internal Medicine. It was accompanied by a positive editor's note.
Viva transparency!

Marjolein Schouten ‏@schoutenmar said...

From Twitter:

Great blog Paul! Unless patient advocacy is approached with true view on equity, lightning will strike

Steven ‏@sjallder1 said...

From Twitter:

Fantastic post Paul! You are exactly right to make this point...

Adrian Gropper said...

Thank you Paul. The "medical-industrial-government complex" has decades of experience in how to suppress advocacy and disintermediation. Secrecy and lack of transparency is core. Transparency of cost and quality are shunned at every turn. Risk-bearing private payers have secret contracts with risk-bearing private providers. The EHR software doctors are mandated to use for decision support and analytics is secret. Patient data useful for outcomes and learning is shuttled around secretly without patient access or consent through invisible data brokers under the pretense of de-identification. State surveillance is added on layer by layer through All Payer Claims Databases, Prescription Drug Monitoring Programs, Health Information Exchanges, which just like the private data brokers, are inaccessible to the individual citizen or our would-be advocates.

Our medical-industrial-government complex is propped up by secrecy at every turn.

MightyCaseyMedia said...

You nail it right here: "That democratization will not arise from lovingly produced TED talks viewed by the elite in society. It will require a movement from the patient advocacy world."

The issue is getting the patient community recognized as more than just revenue units, or time/schedule slots. Expert patients are already redesigning the system in small heat points here and there. The real tipping point will be reached when our ideas are given equal weight as those originating from folks with MD and MPH after their names ...

Tone said...

Consumer engagement leading to disintermediation and price-to-value shopping hits several other barriers in addition to income inequities:

1.) Shopping/negotiation is often done when the consumer is weakest: in pain, at risk of losing their life, acting as a proxy for a loved one who is suffering, or with a sword of Damocles (real, imagined, or physician induced) hanging over them. Under these circumstances free market principles no longer operate. Put a gun to my head and ask how much I'll pay for you to drop the gun.

2.) Information is incomplete and often biased. Studies too often grind their sponsors' axe, or are simply not conducted because the potential outcomes do not benefit anyone who might be a sponsor.

3.) Medicine is incredibly complex. Value, risk, and probabilities in consumer medical choices are often ill informed. Consumers have great difficulty weighing these in a medical context simply because they have not accumulated years of education and practice in every medical specialty. One can argue that consumers successfully negotiate and purchase many things which they don't understand: TVs, computers, higher education, etc... However, for these items, the downside risks are small compared to shopping for medical treatment. Buy a crappy TV... it fails and we've lost our purchase price. Buy a crappy medical procedure and you're dead, maimed, or simply sicker than when you started.

nonlocal MD said...

Thoughtful analysis, and even more interesting is how the commenters see in it their sub-issue of choice, which is varied. That very lack of laser focus may be part of what is preventing anything from changing, given the stiff resistance from the status quo'ers.

Barry Carol said...

The lack of price transparency remains a huge problem, especially for hospital care, both inpatient and outpatient. The confidentiality agreements between insurers and providers that preclude disclosure of contract reimbursement are probably the primary impediment to progress. For drugs bought at retail pharmacies or from PBM’s by mail, patients can find out what drug prices cost and what their copays will be ahead of time.

Separately, I wonder how much unnecessary or, at best, marginally useful care primary care doctors could stop if they were paid better and could spend more time with each patient. There might be far less need for specialist referrals and more time to explain what care the patient needs and doesn’t need and why. I also wonder just how much of our healthcare bill is attributable to defensive medicine and how much to unreasonable patient expectations compared to other developed countries.

e-Patient Dave said...

This is the first of a couple of comments. This one's on my first impression (your lede); your core point (lightning/ground) will come later.

This is such a rich discussion - you've managed to draw attention and response from people all across the awareness spectrum about what it takes to create change, and that's no mean feat.

As one of the TED speakers cited in that article, and someone whose life (saved by great medicine) is now devoted to changing medicine, I want to point out that in one sense, you're arguing about an important semantic issue in Lucien's headline.

> They have not changed healthcare

Of course not! Nothing big, nothing cultural, changes that fast. (My talk is the oldest in Lucien's bundle, and it was less than 4 years ago.) So, since you're thoughtful, I guess your saying that can only be intended to awaken another wave of uninformed people who think medicine must be doin' pretty well these days. (Right? You don't think anyone really thinks medicine has changed, right?)

Or maybe you're again getting in the face of the healthcare "leaders" who say THEY are doin' just fine. A tiny number of them are, but both our cost figures and our accidental-killings figures say that in general they're not.

But let's talk about the PROCESS of culture change. I know something about this, because for the past five years I've done almost nothing for income except speak at conferences, preparing intensely for each speech with my hosts/sponsors, and listening sharply for how my thoughts are received. (And I've learned a lot from your blog, before and during that period. As you know, I wrote about your blog from my bed in your hospital.)

After ~400 events in those five years, my perception (not "the truth," just my perception) is that several key obstacles hold back change (in addition to money's iron grip). Among them:

- Invalid or expired beliefs about what's possible and what's not. Most of Lucien's talks address our beliefs about what's possible. His headline didn't say that. When someone thinks something's not possible, of course they won't pursue it, so this is a Big Deal Issue.

The "what's possible" factor is precisely why my work focuses not on verifiable truths like "hospitals hide that they're accidental killers" or "overall, we're not getting anywhere" - my work as a change agent focuses on the "what's possible" point: "Let Patients Help," implying "it's a mental error to think patients have nothing to offer." My TED Talk ended with that chant.

- Failure to include the ultimate stakeholder in discussions about how it's working out and what should be changed. I just want to choke people who promote events that they say include "all stakeholders" that don't involve the party with the most at stake - the person who's being cut open, aka "the patient" (and their family etc). Conferences and policy meetings need to subsidize patients for their time at such meetings, or we will continue to have policies that were obviously created without the most affected person.

(Sub-note: Lucien is the one who therefore created his #PatientsIncluded policy - he won't attend any event, even as a paid speaker, that doesn't subsidize patient participation.)

- Lack of any market mechanism that lets the ultimate stakeholders vote with their feet if service, quality, and/or price suck. As time goes by I see this as one of the biggest impediments to change, because crappy providers experience no consequence.

I haven't thought this out, but here's a question to ponder: how does this differ from the crappy quality and service that was experienced by people in the old Soviet economy? I don't know; just asking.

And that leads to the lightning/ground issue, which I'll address later on.

Paul Levy said...

Good stuff, Dave, but don't forget to address my main point about creating an effective coalition of patient advocates.

e-Patient Dave said...

Sure, Paul - don't have to tell ME that - got any advice on how to do that? I mean, concrete, specific advice? I'm all ears! (I have some ideas but as you know, I've never been an org builder / team builder.)

e-Patient Dave said...

p.s. You hit the nail on the head with the word "effective." Doing that requires understanding what the obstacles to change are. As you know, these are big system dynamics / complex systems issues, so "effective" depends on some pretty deep thinking. Otherwise we'll end up with yet another generation of frustrated patient change advocates.

I believe - really, seriously - my three boldface points are among those factors.

JeanneFromClearhealthcosts said...

Speaking of the Soviet economy:

Dave's comment reminded me of a 5-minute Ignite I did about the health care industrial complex and the Soviet Union, where I used to live.

This may fall into the category of things you remark upon, Paul, for not actually changing health care.

But! Sometimes revolutions are not actually organized, yet they take place anyway.

Lucien Engelen said...

Thank you Paul (and others for the comments).
Of course TED talks do not change healthcare. Even-though i titled the post "...change(d) healthcare.." is of course is about the content and topics that they address. Paul takes another approach about WHAT is needed as a whole for a sustainable change in healthcare, and that's fine. Welcome in my (daily) world in our Center for healthcare innovation ;-)
Furthermore (and of topic of my blogpost) we like to think we really DID change healthcare for our patients at Radboud University Medical Center. Besides incorporating patients in every policy decision by our patient advisory council, and even a separate Children's Advisory council, we incorporate them in research, education and the (recent) change of the curriculum for medical students that we ignite this september. Also as Dave said with our #patientincluded act we were able to address and inspire others to join us in conferences and even the BMJ in medical publishing And THAT was my intend with the blogpost about the TED talks, the topics at present inspire people to take action, to inspire others, and to hang in there. Because changing healthcare is a though job, as in the other comments has been re-identified.

Paul Levy said...

Exactly. What Lucien and his colleagues have done at Radboud is exemplary.

My point is that is remains one of few such examples.

I understand, as noted by several people, it takes time to make a revolution more widespread. But I am impatient.

I believe the movement could be accelerated if there were a greater coalition among the patient and family advocates, but that, itself, has been slow to arise for reasons I've noted. Among other things, there is a need for capacity-building among that group.

Pat Mastors said...

Paul, we’ve been working for the past year to build exactly the kind of coalition you describe, for all the reasons you so eloquently outline, at the Patient Voice Institute (

PVI’s goal is to democratize health care—to give every patient a voice, and 
to integrate the patient voice fully and functionally into the health care ecosystem by:
• Giving all patients and families tools to share and improve their health care experiences, while collectively driving quality improvement as a market force. Among these tools, PVI is developing a “Trip Advisor” for the patient experience (similar to in the UK), harvesting stories by email, text field, letter, and voice mail and in several different languages, sharing distilled results on our website.
• Serving as the ‘go to’ resource for patient speakers, advisors, and experts. Ensuring that articulate, compelling patient speakers, panelists and contributors, trained in weaving the Patient Voice Principles (Safety, Dignified Human Interaction and Access to Meaningful Data) into their authentic stories, can be easily found and engaged by the nearly 150,000 hospitals, medical facilities, and health agencies in the U.S.
• Driving momentum of national patient engagement movement. Intriguing and enticing people of all demographics, literacy levels, languages and cultures to activate and engage as patients, through use of creative strategies, initiatives and outreach. (Our new website will offer much better information and greater function).

You’ll see from our senior advisors and broader advisory board that we have diverse but strong advocates pulling on the oars of change. We’ve talked to S4PM, CU Safe Patient Project, CFAH, WEGOHealth and other advocacy organizations whose missions are aligned, to figure out how to best harness our collective momentum. (Any group we've failed to reach out to is a function of resource limitations—we invite all to connect with us!) The common understanding is that “we must hang together, or surely we will hang separately”.

It will take champions, alliances and funding to accomplish these ambitious goals, and we’re hard at work on that. But the questions that propelled us at the outset are the same ones I ask now: “if not us, who? And if not now, when?”

Pat Mastors