tag:blogger.com,1999:blog-32053362.post8880128289310940141..comments2024-03-18T06:27:51.599-04:00Comments on Not Running a Hospital: Lightning goes to groundPaul Levyhttp://www.blogger.com/profile/17065446378970179507noreply@blogger.comBlogger21125tag:blogger.com,1999:blog-32053362.post-28308149626771699782015-01-13T11:58:17.621-05:002015-01-13T11:58:17.621-05:00Paul, we’ve been working for the past year to buil...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 (patientviceinstitute.org). <br /><br />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:<br />• 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 iwantgreatcare.org in the UK), harvesting stories by email, text field, letter, and voice mail and in several different languages, sharing distilled results on our website.<br />• 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.<br />• 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).<br /><br />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”. <br /><br />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?”<br /><br />Pat Mastors <br />Co-Founder<br />PatientVoiceInstitute.orgPat Mastorshttps://www.blogger.com/profile/12572742020333587763noreply@blogger.comtag:blogger.com,1999:blog-32053362.post-88720397972021216552015-01-13T03:48:45.615-05:002015-01-13T03:48:45.615-05:00Exactly. What Lucien and his colleagues have done...Exactly. What Lucien and his colleagues have done at Radboud is exemplary.<br /><br />My point is that is remains one of few such examples.<br /><br />I understand, as noted by several people, it takes time to make a revolution more widespread. But I am impatient.<br /><br />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.Paul Levyhttps://www.blogger.com/profile/17065446378970179507noreply@blogger.comtag:blogger.com,1999:blog-32053362.post-30834472703708481092015-01-13T02:21:40.713-05:002015-01-13T02:21:40.713-05:00Thank you Paul (and others for the comments).
Of c...Thank you Paul (and others for the comments).<br />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 ;-) <br />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 https://www.linkedin.com/pulse/20140618060741-19886490-britisch-medical-journal-bmj-is-patients-included. 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.Lucien Engelenhttps://www.blogger.com/profile/13016774801989739206noreply@blogger.comtag:blogger.com,1999:blog-32053362.post-83615606232865612972015-01-12T12:10:14.058-05:002015-01-12T12:10:14.058-05:00Speaking of the Soviet economy:
Dave's comme...Speaking of the Soviet economy: <br /><br />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. <br /><br />This may fall into the category of things you remark upon, Paul, for not actually changing health care. <br /><br />But! Sometimes revolutions are not actually organized, yet they take place anyway. <br />http://youtu.be/czcXoN92WKYJeanneFromClearhealthcostshttp://clearhealthcosts.com/noreply@blogger.comtag:blogger.com,1999:blog-32053362.post-57336657607919696372015-01-12T12:07:17.291-05:002015-01-12T12:07:17.291-05:00p.s. You hit the nail on the head with the word &q...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. <br /><br />I believe - really, seriously - my three boldface points are among those factors.e-Patient Davehttps://www.blogger.com/profile/16381434866099596466noreply@blogger.comtag:blogger.com,1999:blog-32053362.post-85528423155155752012015-01-12T11:58:23.319-05:002015-01-12T11:58:23.319-05:00Sure, Paul - don't have to tell ME that - got ...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 Davehttps://www.blogger.com/profile/16381434866099596466noreply@blogger.comtag:blogger.com,1999:blog-32053362.post-72218132178717355232015-01-12T11:46:26.721-05:002015-01-12T11:46:26.721-05:00Good stuff, Dave, but don't forget to address ...Good stuff, Dave, but don't forget to address my main point about creating an effective coalition of patient advocates.Paul Levyhttps://www.blogger.com/profile/17065446378970179507noreply@blogger.comtag:blogger.com,1999:blog-32053362.post-49016390604427134022015-01-12T11:43:27.515-05:002015-01-12T11:43:27.515-05:00This is the first of a couple of comments. This on...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.<br />________<br /><br />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.<br /><br />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. <br /><br />> They have not changed healthcare<br /><br />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?)<br /><br />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. <br /><br />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.)<br /><br />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:<br /><br />- <b>Invalid or expired beliefs about what's possible and what's not.</b> Most of Lucien's talks address our beliefs about what's <i>possible</i>. 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.<br /><br />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.<br /><br />- <b>Failure to include the ultimate stakeholder in discussions</b> about how it's working out and what should be changed. I just want to <i>choke</i> people who promote events that they say include "all stakeholders" that don't involve the party with the <i>most</i> 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. <br /><br />(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.)<br /><br />- <b>Lack of any market mechanism that lets the ultimate stakeholders vote with their feet if service, quality, and/or price suck.</b> As time goes by I see this as one of the biggest impediments to change, because crappy providers experience no consequence. <br /><br />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. <br /><br />And that leads to the lightning/ground issue, which I'll address later on.e-Patient Davehttps://www.blogger.com/profile/16381434866099596466noreply@blogger.comtag:blogger.com,1999:blog-32053362.post-31126910416262043242015-01-11T20:15:51.942-05:002015-01-11T20:15:51.942-05:00The lack of price transparency remains a huge prob...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. <br /><br />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.<br />Barry Carolnoreply@blogger.comtag:blogger.com,1999:blog-32053362.post-17494026810639648642015-01-11T14:00:07.235-05:002015-01-11T14:00:07.235-05:00Thoughtful analysis, and even more interesting is ...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.nonlocal MDnoreply@blogger.comtag:blogger.com,1999:blog-32053362.post-3252882721868129322015-01-11T12:40:34.118-05:002015-01-11T12:40:34.118-05:00Consumer engagement leading to disintermediation a...Consumer engagement leading to disintermediation and price-to-value shopping hits several other barriers in addition to income inequities:<br /><br />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.<br /><br />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.<br /><br />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. Tonenoreply@blogger.comtag:blogger.com,1999:blog-32053362.post-36727047307109911352015-01-11T11:58:20.667-05:002015-01-11T11:58:20.667-05:00You nail it right here: "That democratization...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."<br /><br />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 ...MightyCaseyMediahttps://www.blogger.com/profile/15676994193165585448noreply@blogger.comtag:blogger.com,1999:blog-32053362.post-71385322237888090062015-01-11T11:55:49.626-05:002015-01-11T11:55:49.626-05:00Thank you Paul. The "medical-industrial-gover...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.<br /><br />Our medical-industrial-government complex is propped up by secrecy at every turn.Adrian Gropperhttps://www.blogger.com/profile/14435645301228523460noreply@blogger.comtag:blogger.com,1999:blog-32053362.post-84269707399178898822015-01-11T11:28:42.521-05:002015-01-11T11:28:42.521-05:00From Twitter:
Fantastic post Paul! You are exactl...From Twitter:<br /><br />Fantastic post Paul! You are exactly right to make this point...Steven @sjallder1noreply@blogger.comtag:blogger.com,1999:blog-32053362.post-75385404644488265702015-01-11T11:27:45.898-05:002015-01-11T11:27:45.898-05:00From Twitter:
Great blog Paul! Unless patient adv...From Twitter:<br /><br />Great blog Paul! Unless patient advocacy is approached with true view on equity, lightning will strikeMarjolein Schouten @schoutenmarnoreply@blogger.comtag:blogger.com,1999:blog-32053362.post-11464641891160543632015-01-11T10:53:01.260-05:002015-01-11T10:53:01.260-05:00Great piece, Paul. Couldn't agree with you mor...Great piece, Paul. Couldn't agree with you more. We think there's hope, though. <br /><br />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. <br /><br />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!? <br /><br />Here's the Harvard Business Review piece i wrote about our PriceCheck project. https://hbr.org/2014/11/its-absurd-that-health-care-costs-are-so-confusing <br />And here's our partner's piece in JAMA Internal Medicine. http://archinte.jamanetwork.com/article.aspx?articleid=1935935 It was accompanied by a positive editor's note.<br />Viva transparency!JeanneFromClearhealthcostshttp://clearhealthcosts.com/noreply@blogger.comtag:blogger.com,1999:blog-32053362.post-89231080000510164792015-01-11T10:22:22.295-05:002015-01-11T10:22:22.295-05:00The premise that TED Talks change health care is a...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.<br /><br />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. <br /><br />You get the point. Visionary speeches can lead to change. TED talks are not exactly a grassroots change venue -- even if streamed for free.Initial Truthhttps://www.blogger.com/profile/03118768451371607255noreply@blogger.comtag:blogger.com,1999:blog-32053362.post-87957460020064126702015-01-11T10:05:29.862-05:002015-01-11T10:05:29.862-05:00There are movements afoot -- and the established p...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. Bebehttps://www.blogger.com/profile/08525534028343948664noreply@blogger.comtag:blogger.com,1999:blog-32053362.post-19615950373386686912015-01-11T09:55:22.053-05:002015-01-11T09:55:22.053-05:00Excellent post, Paul. There's no doubt there&#...Excellent post, Paul. There's no doubt there's a big challenge. I'd add a couple thoughts to give some optimism...<br />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.<br />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). <br /><br />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. Davehttps://www.blogger.com/profile/04377557996598577175noreply@blogger.comtag:blogger.com,1999:blog-32053362.post-57842820353605638042015-01-11T01:31:56.126-05:002015-01-11T01:31:56.126-05:00From Facebook:
As I read thru this well-written &...From Facebook:<br /><br />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.Kathleen Kubitnoreply@blogger.comtag:blogger.com,1999:blog-32053362.post-38783608156452606022015-01-10T20:25:17.639-05:002015-01-10T20:25:17.639-05:00The part about the advocates as a result of injury...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. <br /><br />The problem is how we can get one. Being a CEO of a major corporation, any ideas?<br />Anonymousnoreply@blogger.com