Last week, Facebook’s unprecedented stock price collapse triggered by concerns over personal data privacy, as well as same-day commentary regarding GlaxoSmithKline’s investment in 23andMe to gain access to its customers’ genomic data, reignited a national dialogue vis-à-vis our rights to our data, especially our health data. Three years ago, our nation’s first National Coordinator for Health IT foresaw an impending “gold rush” for valuable personal health data. Myriad headlines such as Bloomberg’s “IBM Buying Truven for $2.6 Billion to Amass More Health Data” proved him right and fueled this national dialogue.
However, there has been far less discussion about the flip-side of this coin: accessibility of knowledge gleaned from people’s data, by the people whose experiences contributed to its development and the people who need it to save lives. Policymakers have noted that, “We must develop a communications system so that the miraculous triumphs of modern science can be taken from the laboratory and transmitted to all in need.” Unfortunately, that statement, attributed to Senator Lister Hill and inscribed on a wall inside the U.S. National Library of Medicine (the world’s largest biomedical library), was made in 1965! That predates by a year Dr. Martin Luther King Jr.’s observation that, “Of all the forms of inequality, injustice in health is the most shocking and inhuman.” Indeed, inequitable access to knowledge, resulting from society’s failure to realize Senator Hill’s vision over half a century later, exacerbates such injustices while costing lives.
THCB isn’t a traditional newspaper or a traditional press outlet. But we do report on news and policy and we do host opinions from across the political and policy spectrum. Trump’s attacks on the press as “enemies of the people” and purveyors of “fake news” are the exact equivalent of the attacks on the press from totalitarian regimes down the ages. It pains me that we have to use any space or take any of our readers’ time to say this, but a free press is perhaps the most important bastion of democracy and freedom. It’s beyond belief that an American President is saying what Trump says. But his words have real consequences–journalists are regularly killed in Russia, Turkey and many other countries. The threats and language that are the precursors to that violence are starting to happen here too. So today, inspired by the Boston Globe, THCB is one of thousands of traditional and new format media outlets standing together to say that enough is enough. Trump must stop his rhetoric and decent people must oppose what he says as loudly as they can.
Happy 15th birthday THCB! Yes, 15 years ago today this little blog opened for business and changed my life (and at least impacted a few others). Later this week we are going to celebrate and tell you a bit more about what the next 15 years (really?) of THCB might look like. But for now, I’m rerunning a few of my favorite pieces from the mid-2000s, the golden age of blogging. Today I present “Health Care = Communism + Frappuccinos”, one of my favorites about the relationship between government and private sector originally published here on Jan7, 2005. And like the Medicare one from last week, it sure holds true today. Matthew Holt
Those of you who think I’m an unreconstructed commie will correctly suspect that I’ve always discussed Marxism in my health care talks. You’d be amazed at how many audiences of hospital administrators in the mid-west know nothing about the integral essentials of Marx’s theory of history. And I really enjoy bring the light to them, especially when I manage to reference Mongolia 1919, managed care and Communism in the same bullet point.
While I’ve always been very proud of that one (err.. maybe you have to be there, but you could always hire me to come tell it!), even if I am jesting, there’s a really loose use of the concept of Marxism in this 2005 piece (reprinted in 2009) called A Prescription for Marxism in Foreign Policy from (apparently) libertarian-leaning Harvard professor Kenneth Rogoff. He opens with this little nugget:
“Karl Marx may have suffered a second death at the end of the last century, but look for a spirited comeback in this one. The next great battle between socialism and capitalism will be waged over human health and life expectancy. As rich countries grow richer, and as healthcare technology continues to improve, people will spend ever growing shares of their income on living longer and healthier lives.”
Actually he’s right that there will be a backlash against the (allegedly) market-based capitalism — which has actually been closer to all-out mercantilist booty capitalism — that we’re seen over the last couple of decades. History tends to be reactive and societies go through long periods of reaction to what’s been seen before. In fact the 1980-20?? (10-15?) period of “conservatism” is a reaction to the 1930-1980 period of social corporatism seen in most of the western world. And any period in which the inequality of wealth and income in one society continues to grow at the current rate will eventually invite a reaction–you can ask Louis XVI of France about that.
But when Rogoff is talking about Marxism in health care what he really means is that, because health care by definition will consume more and more of our societal resources, the arguments about the creation and distribution of health care products and services will look more like the arguments seen in the debates about how the government used to allocate resources for “guns versus butter” in the 1950s. These days we are supposed to believe that government blindly accepts letting “the market” rule, even if for vast sways of the economy the government clearly rules the market, which in turn means that those corporations with political influence set the rules and the budgets (quick now, it begins with an H…). Continue reading…
So The Health Care Blog (which I like to think of as the first proper health care blog whatever Jacob Reider says about his Docnotes which started in 1999!) is 15 yrs old this month. This is the start of our little anniversary celebration. We are going to be running some of the earlier classic posts. The very first post on “What’s wrong with Medicare” still rings true- Matthew Holt
For the first post, don’t expect a big essay despite that subject line. It came up because while I was away from the US for the first part of this year, yet another incarnation of NME or HCA — the two original for profit hospital chains of the 1970s that amalgamated into Columbia (now calling itself HCA again!) and Tenet — got caught with its hand in the cookie jar. You’ll remember NME getting bad press and worse in the 1980s for imposing unwanted inpatient stays on “psychiatric patients”. After that NME morphed into Tenet. Columbia of course said that “health care had never worked like this before” and they were right — to the extent of the upcoding and fraudulent billing going on in its hospitals in the mid 1990s. I remember one cover of Modern Healthcare in which Tenet’s strategy was encapsulated as “We’re not Columbia”. Apparently only slogan deep. Last week they settled with the state and feds in California due to massive amounts of upcoding and worse at Redding Medical Center. Several other settlements are pending.
The New York Times’ description (registration req’d) of the level of unnecessary surgery at the Redding Medical Center is quite shocking. But I do recall Alain Enthoven at Stanford telling me in 1991 that one third of carotid andarterectomies in California were found to be counter-indicated after chart review. Why were they done? Well everyone — surgeons, hospitals, supplier– made money by doing them. Given the imbalance in knowledge between a patient and a doctor, it’s not too surprising that a very aggressive surgeon can do way more than he or she should. Medicare is still basically a fee-for-service program with very little oversight, and so this type of thing is going to go on and on. And it has been going on for a while, as this partial list of whistlebower suits shows. Enthoven’s view was that everyone should be put into competing managed care plans which would act as patient (and payer) sponsors, and look after the money better than the government could. It didn’t happen that way, and the backlash against managed care’s ham-fisted attempts to do so ensured that most health plans gave up on trying to control what providers did. Medicare never really ever tried, as all its internal review cases were co-opted by providers. Its only weapons were inquisitions and indictments from the FBI and others well after the fact. Eventually Medicare will have to have more controls, but that will need reform as well as more money. I’ll talk more about this when I get to drug coverage later this week. Suffice it to say, don’t hold your breath.
Meanwhile, Uwe Reinhardt says in the NY Times article that (despite Wall Street’s desires) hospitals “can’t be a growth industry like some Internet company”. Well maybe not a “growth” sector, Uwe, but look at Yahoo’s stock price in 2000, Tenet’s this year, and tell me that you’re not getting some of that Internet fever coming back!
How are teens and young adults engaging with digital health? Results of a national survey asking just that were released today by Susannah Fox (Former CTO at US Dept of HHS) and her research partner, Victoria Rideout.
You can check out the full report of the findings here, but I spoke with Susannah in April, just as she and Victoria were starting to draw some insights from their work.
Hearing her talk about the survey at this stage of synthesis is not only unique (most researchers won’t talk until the findings are published) but more so because it adds a layer of understanding to the final results now that they’re here.
We get her candor about how teens and young adults are a wildly viable – yet very overlooked – market for digital health…
We see how she’s trying to formulate a much larger hypothesis about what healthcare can learn about social media from a generation that has never lived without it and, more importantly, view it as having a positive impact on their well-being…
And, probably most inspiring to me, we see an approach to health data that stands out for its warmth. For it’s love, really. In a world of big data and clinical trials, it’s endearing to hear from someone who is taking a more anthropological approach and who has fallen absolutely, head-over-heels in LOVE with the personal side of her dataset.
As we all clamor for a patient-centered end, we’d be remiss to underestimate the value of a human-centered starting point. Watch Susannah Fox for a strong model of how this can be done in health research.
Filmed at Health DataPalooza, Washington DC, April 2018. Find more interviews with the people pushing healthcare to better tomorrow at www.wtf.health.
The focus on the CMS rules on information blocking continues on THCB. We’ve heard from Adrian Gropper & Deborah Peel at Patients Privacy Rights, and from e-Patient Dave at SPM and Michael Millenson. Now Adrian Gropper summarizes — and in an linked article –notates on the American Hospital Association’s somewhat opposite perspective–Matthew Holt
It’s “all hands on deck” for hospitals as CMS ponders the definition and remedies for 21st Century Cures Act information blocking.
This annotated excerpt from the recent public comments on CMS–1694–P, Medicare Program; Hospital Inpatient Prospective Payment Systems… analyzes the hospital strategy and exposes a campaign of FUD to derail HHS efforts toward a more patient-centered health records infrastructure.
Simply put, patient-directed health records sharing threatens the strategic manipulation of interoperability. When records are shared without patient consent under the HIPAA Treatment, Payment and Operations the hospital has almost total control.Continue reading…
I’ve humbly realized that doctors aren’t always indispensable. When I was three, a compounder – a doctor’s assistant – allegedly saved my life. Dehydrated from severe dysentery, I was ashen and lifeless. My blood pressure was falling and I would soon lose my pulse. I needed fluids urgently. An experienced pediatrician could not get a line into my collapsed veins. When hope seemed lost, his compounder gingerly offered to try, and got fluids inside my veins on the first attempt. My pulse and color returned and I lived to hear the tale from my mother.
So, on a recent trip to India, I was intrigued by Birju, a compounder in my ancestral village in Bihar, who the villagers revere like a doctor. After assisting a city physician for ten years, Birju had started his own practice. He has no formal training in healthcare. Even his education was partial – he left school at fourteen to help his father, who also was a compounder.
I wanted to see Birju practice his craft. So, I visited his clinic which is actually a shop. Birju sells stationery, conveniences such as shaving foam, and medications, which was just as well, as I needed Imodium to calm my angry Americanized bowel.
This is the second of two posts from the Society of Participatory Medicine about the important policy issue regarding portability of our medical records. The first provided background, with link to a PDF of the comments SPM submitted, largely authored by Michael Millenson, who provides this essay for context.
The Trump administration is proposing to use a powerful financial lever to push hospitals into making the patient’s electronic medical record interoperable – that is, readable by other care providers – and easily available to patients to download and organize via an app.
The possible new mandates, buried in a 479-page Federal Register “Notice of Proposed Rule Making” from the Centers for Medicare & Medicaid Services (CMS), could become part of hospital “conditions of participation” in Medicare. That means if you don’t do it, Medicare, which accounts for about a third of an average hospital’s revenues, can drop you from the program.
In a comment period that closed June 25, we at the Society for Participatory Medicine registered our strong support for taking the administration rhetoric heard earlier this year, when White House senior advisor Jared Kushner promised a “technological health care revolution centered on patients,” and putting it into practice. The American Hospital Association (AHA), on the other hand, while professing its support for the ultimate goals of interoperability and patient electronic access, was equally strong in telling CMS it was going too far, too fast and with too punitive an approach.
This is the first of two posts from the Society of Participatory Medicine about an important policy issue regarding portability of our medical records. The second part will be published tomorrow and is written by Michael Millenson, who did the lion’s share of this work, as noted below.
Our Society’s Advocacy and Policy chair Vera Rulon @VRulon has submitted our comments on the proposed rules that have been discussed at great length on social media.
These regulations are a big deal for participatory medicine – they’re the successor to the Meaningful Use rules that have governed patient access to their chart, among other things. The regulations do this by altering how a hospital gets paid based on how well their data moves out of their computers. We want this; we believe it is essential in enabling patients and families to achieve the best possible care. (More on this in Millenson’s companion post.)
Not surprisingly, some hospitals don’t like new rules that affect how they get paid, and have lobbied heavily to NOT be required to give us our data. Some observers say there are ulterior motives – for instance see these 30 seconds of Yale cardiologist Harlan Krumholz at Connected Health 2016, on how a health system CEO told him flat out:
Poverty is known to be an important determinant of a person’s health and longevity. A person’s zip code is more relevant than genetic code. Does a physician’s zip code – that is where they were born and raised – have an effect on where they practice? Specifically, do rural born and raised physicians return to their rural roots? The story of Prashant, a physician raised in rural Bihar, India, is instructive.
When I first met Prashant, he was a second-year medical student in Patna Medical College and Hospital. Patna is the capital of Bihar, and Bihar is one of the poorest states in India.
Prashant brimmed with idealism and vigor. “I’ll practice in Purnea one day and serve the poor villagers,” he told me in broken English.
Prashant comes from a family of Bihari farmers who are also affluent landowners. He grew up near Purnea, a fourth-tier town in Bihar surrounded by villages. Visiting these villages is like stepping into a time machine – you can see people travelling by bullock carts but using mobile phones.