OP-ED

OP-ED

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The Evolution of Facebook’s Privacy Policy

Screen Shot 2015-08-12 at 1.31.08 PMToday a new online journal, ‘Technology Science’, went live. Harvard Professor Latanya Sweeney is the Editor in Chief and Publisher. The project is funded by the Ford Foundation.

Harvard researchers used Patient Privacy Rights’ Privacy Trust Framework to measure, describe, and rate Facebook’s changes to its Privacy Policy through the years.  Their paper is listed second on the Technology Science homepage. Download free at: http://techscience.org/a/2015081102/

According to this new research paper, we know MORE about whether Facebooks’ Privacy Policies actually protect privacy (or not) than we do about US health-related or healthIT corporations.

Why is research on the effectiveness of Facebook’s Privacy Policies relevant to the US healthcare system?

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Iflying cadeuciin the world of medicine, blood clots during hospitalization have become synonymous with imperfect care. As many as 600,000 patients per year experience a blood clot, and more than 100,000 die as a result, accounting for between 5 and 10 percent of hospital deaths. Regulatory agencies have taken clots as signals that safety and quality have been compromised, and have instituted significant financial penalties on physicians and hospitals for these “preventable events.”

In reality, clots aren’t always as preventable in real-world practice as they are in theory. Blood clots happen even under conditions of perfect, best-practice patient care, which should be seen as testimony to the limits of penalty schemes aiming to improve the quality of care. These penalties should be re-examined.

In a study recently published in JAMA Surgery of 128 blood clot or venous thromboembolism (VTE) cases, my team found that nearly 50 percent of the cases reviewed at The Johns Hopkins Hospital were not actually preventable. In fact, these patients received perfect care by all objective measures — all appropriate preventive measures were taken, including the prescription of the ideal medication and assuring that every dose of medicine was administered. Yet the blood clots still occurred, and the hospital was still financially penalized.

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Screen Shot 2015-07-16 at 11.29.19 AM

Arthur C. Clark and Stanley Kubrick predicted supercomputers more intelligent than humans.  In 2001: A Space Odyssey, the HAL states, with typical human immodesty, “The 9000 series is the most reliable computer ever made… We are all, by any practical definition of the words, foolproof and incapable of error.” Forty years later, IBM’s Watson pummeled humans in Jeopardy – a distinctly human game.

Watson is a big shot oncology fellow at MD Anderson – he is already impressing nurses and the attendings.  The supercomputer presented patients in the morning rounds, parsed data within seconds, and made few mistakes. The real oncology fellow, the human I mean, flabbergasted by the efficiency of his binary colleague, relayed to the Washington Post, “Even if you work all night, it would be impossible to be able to put this much information together like that.” Watson doesn’t have to worry about duty hour restrictions.

CEO of IBM, Ginni Rometty, claims that Watson 2.0 will interpret medical imaging like a radiologist.  In its third iteration, the supercomputer will “debate and reason.” Why hire radiologists who sap productivity with lunch breaks and sleep?  Watson will never complain about the dearth of vegan food in the cafeteria, never get tired, and – best of all – never whine about Medicare reimbursement cuts.

But forgive me for snoring at night without fear of the Robo-Radiologist. The reasons are simple.

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GundermanAs kids growing up in the Midwestern United States, my friends and I loved baseball.  We spent many hours each summer day playing the game, and when we weren’t out on the sandlot, we were reciting the stats of top players, arguing the merits of our favorite teams, and trading baseball cards.  Baseball is more than America’s pastime.  It is a sport on which millions of Americans have cut their athletic teeth, laying a lifelong foundation of physical fitness and instilling important lessons about competition and character.

Imagine my distress, then, in beholding the state of major league baseball in 2015.  Stalwart players such as Carlos Gonzalez of the Rockies and Robinson Cano of the Mariners have been posting career-worst numbers, and even a venerable team such as the Boston Red Sox, which boasts the fourth-highest payroll in all of baseball, is stuck in last place in its division.  And this problem of poor performance is not a fleeting phenomenon.  Consider the Chicago Cubs, who have the worst home field record of any team over the last 50 years, and haven’t won a World Series since 1908.

Clearly, the best interests of our youth, the American public, and baseball fans everywhere are not being well served by our current largely unregulated approach to baseball quality.  Poorly performing players are appearing in game after game, and losing teams keep showing up on opening day season after season.  This isn’t just a matter of pride.  The economic implications of Major League Baseball are huge – the Los Angeles Dodgers have a payroll of nearly $300 million, and the New York Yankees franchise has an estimated worth of over $3 billion.  Something has to change.

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Digital DoctorFollowing the recession, the Obama administration sought shovel-ready projects.

One unlikely shovel wielding aggregate demand was health information technology. The Health Information Technology for Economic and Clinical Health (HITECH) Act passed in 2009 directed 5 % of the stimulus towards digitizing medical records.

Computerization of medical records doesn’t induce the images of public works as building freeways during the Great Depression does, but the freeway is a metaphor for exchange of information between electronic health records with the implication that such an exchange is a public good and so government intervention is justified.

Robert Wachter, voted the most influential physician by Modern Healthcare, sums the optimism and frustration with the electronic health record (EHR) in Digital Doctor – which stands to be a classic.

It was Bush Jr., not Obama, who started the digitization. Seeking bipartisanship after the war in Iraq, Bush was inspired by his closest ally, Tony Blair, who was wiring the National Health Service (NHS) – a $16 billion initiative which has since failed, spectacularly.

Bush founded the Office of National Coordinator of Health Information Technology (ONC) and appointed David Brailer – a physician, quant and entrepreneur – as head. Brailer wanted interoperability so that hospitals shared information. It is because of interoperability that we can use our debit cards in New York and Singapore. The market must agree on a common language, such as the TCP/ IP for the internet, to achieve interoperability.

Patients suffer when systems can’t talk. Were patients, not a third party, bearing the full costs of care – a free market – they might have forced hospital information systems to talk. Rightly or not, healthcare is not a free market and hospitals have little motivation in making cross-talking simpler.

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Joe FlowerThe collision between the “volume-to-value” movement and the pharmaceutical and biotech industries over the next few years will have a powerful impact on them and on the healthcare industry and on us as customers, patients, and payers. 

On the one hand, pharma is perhaps the part of the healthcare industry least exposed to direct price regulation under the Obama reforms. The actual costs of pharmaceuticals have been rising as a percentage of what people spend on healthcare, and are seen as the part they have the least influence on. At the same time, many new drugs for cancer and other life-threatening diseases have come with astonishingly high price tags, often not fully covered by insurance (due to the high deductibles and co-pays of the new plans), and with few ways for regulators or the market to push back on them. The public perceives these huge price tags as threatening people with a Hobson’s choice of bankruptcy or death. In the volatile political atmosphere of the 2016 elections, this leaves the pharmaceutical industry highly exposed to political attack and actual new price regulation.

On the other hand, the pharmaceutical and biotech industries also potentially offer some of the best answers to bringing the cost of healthcare down through the use of personalized medicines, smart medicines, new methods of administration such as implants, as well as the possibilities glimmering at us from recent research of real breakthroughs in such important chronic disease areas as Alzheimers, diabetes, addiction, behavioral medicine, and functional medicine. For the most part, though, these answers remain potential. We will not see them adding to the “value” side of the equation until they become fully integrated into a system that is at risk for the health of its customers and using every trick in the handbook to bring those costs in line.

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flying cadeuciiLast Friday ONC (the Office of the National Coordinator for Health IT) released a long-awaited Report On Health Information Blocking. The ONC blog capsulizes the report:

Health information blocking occurs when persons or entities knowingly and unreasonably interfere with the exchange or use of electronic health information. Our report examines the known extent of information blocking, provides criteria for identifying and distinguishing it from other barriers to interoperability, and describes steps the federal government and the private sector can take to deter this conduct.

We were struck with two major reactions to the ONC Info Blocking Report:

  • It’s a solid double: it does a credible job of recognizing that the major problems of interoperability and blocking are not technical or due to a lack of standards, but rather due to business practices and business models. The report also proposes a baseline of potential solutions.
  • It’s not a home run: the report misses the opportunity to describe a comprehensive approach to combat information blocking.

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Adrian GropperAt a time when patients, physicians, and even congress are all clamoring for the interoperability we were promised with the HITECH incentives, the principal EHR vendor organization has figured out yet another way to add to their barricades. HIMSS has just released their “Recommended Identity Assurance for Patient Portals” provide cover for more impediments to the patient’s right to access our own health information.

The parallels to voter ID initiatives is striking. A self-assembled “HIMSS Identity Management Task Force” decides to invent a security threat that is undocumented and then propose a self-serving solution. I had the privilege of witnessing this process first hand.

The use of HIPAA as a barrier to patient access is well known. Almost all of us, as patients, have experienced denial of access to our own health information “because of HIPAA”. This misinterpretation of the law is so pervasive that the Office for Civil Rights, in September 2013, issued a right to access memo  that articulates the patient’s right to an electronic copy of her record and to have that record sent to someone else. Later, in comments designed to encourage adoption of the Blue Button initiative, the Office for Civil Rights made clear that the patient’s right of access included the right to insist on transmission of the record by insecure means if that was what they wanted. (By the way, how many of you have actually received a useful Blue Button file from private-sector hospital?)

18 months and maybe $15 Billion of HITECH incentive payments after the OCR memo, the EHR vendors have come up with their interpretation of the HIPAA patient right of access. I urge all of you to read the 3-page HIMSS recommendation and try to understand what this means to you as a patient.

Secure and privacy-preserving patient identity is currently under consideration by the IDESG Healthcare Committee https://www.idecosystem.org/group/healthcare-committee. On this page you will find the contact info for the leadership and I hope you will send your comments and even consider participating. Or, just comment below.

Adrian Gropper, MD is the CTO of Patient Privacy Rights.

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Screen Shot 2015-04-06 at 7.20.19 PMDr. Samuels’ day-long training experience is unfortunate, but it’s only the opening chords of a much longer symphony of time commitments required by electronic medical records (EHRs).  Many studies document the extra time that EHRs impose on doctors and patients. Research in U.S. hospitals and medical offices suggest that these systems can add a half-hour or much more time to a day. A study by McDonald et al (2013 JAMA Internal Medicine) found EHRs added 48 minutes/day to ambulatory physicians, and Hill et al found that in a large  community hospital emergency room 43% of all physician time was spent entering data into the EHR. This almost doubled the time spent caring for patients, and tripled the time needed to interpret tests and records. (Annals of Emergency Medicine, 2014).

Some of that extra time is spent with clunky interfaces and  hide-n-go seeking for information that should be immediately available, such as arbitrary or unexpected  presentations of data, e.g., having to find a patient’s history by clicking on her current room number, or lab reports that may be arranged by chronology, by reverse chronology, by the lab company, by the organ system, by who ordered them, or by some informal heading, such as “blood work” or “tests” or “labs.”  Then there’s the constant box clicking (or what clinicians call “clickarrhea”).  EHRs also send thousands of usually irrelevant alerts that desensitize doctors to legitimate clinical recommendations.

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https://twitter.com/mcuban/status/583468799145349120

To his credit, Mark Cuban, engaged on Twitter in response to my post.

Mark, I’m sorry I had to leave Twitter abruptly. My wife threatened to kill me and then divorce me – in that order – if I didn’t get off Twitter instantly and get the groceries.

However, I caught the tail end of the Tweets. I’ll do my best to respond.

1. “Why is this contingency all radiologists?”

Mark wondered why everyone on a thread about overtesting were radiologists. It would be a great question if radiologists, who deal with testing, overtesting, limitations of testing, harms of testing, benefits of testing, appropriateness of testing, in other words the science of testing, would be offering advice on financial planning or offering the White House advice on their ISIS policy.

I can do no better than quote @jeffware.

“Exactly Mark – why are the Drs. who specialize in testing trying to explain the dangers of overtesting?”

That was a rhetorical question. But there are some entrepreneurial radiologists who are licking their lips at the epidemic of overtesting. I can hear them say “Mark and acolytes, bring it on.”

To wit, overtesting is better business for us. So our objection is not financially motivated. Let me make this even clearer. The more blood tests and genomic tests the “must prove that I’m healthy” brigade have, more $$$ for radiologists.