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Above the Fold

A New Data Sharing Architecture for Medicine

Feb 19, 2016• 1

By BEN HEYWOOD

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Introduction: Dave Chase and Leonard Kish have been crowdsourcing 95 Theses for a New Healthcare Ecosystem. They have also asked those leading the development of the new ecosystem to offer insights into their own take on each of the theses. This is the first installment from Ben Heywood, Co-founder and President, PatientsLikeMe (PLM). Dave and Leonard believe the recent moonshot for cancer proposed by vice-president Joe Biden, highlighting the need for more data sharing, and the related uproar over research data sharing from the NEJM editorial, show that the need for a new architecture and a new ecosystem, based on sharing, all the more immediate. PLM, as one of the first successful peer to peer health data sharing applications, may serve as a model.

Thesis # 5. Ben Heywood:

A new science will arrive at evidence-based understanding of what works through a great wealth of shared longitudinal health data captured through mobile devices, sensors and health records. This science will be mindful of the concept of transforming Data, to Information, to Knowledge, to Wisdom.
Ben Heywood, Co-founder and President, PatientsLikeMe

If we’re going to talk about evidence-based understanding in the context of a reinvented and redefined health system, we need to first reassess what we mean by evidence, and redefine how we understand it.

When most people think of medical evidence, they think of carefully controlled studies in peer-reviewed journals. The “pyramid of evidence” runs from animal studies and editorials through case series and clinical trials, all the way up to systematic meta-analysis. There’s an emphasis on clinical trials, and it’s strong. But the pyramid reflects a very black and white view of the world—good quality evidence exists, or it does not.

In reality, the evidence we rely on to practice medicine every day is a lot more ambiguous, and grey. Physicians and patients make crucial decisions on the basis of limited evidence and incomplete records. They do so for comorbid or “hard to reach” populations that never take part in research in the first place.

Electronic Health Records: From Ebola to Zika, Fighting the Last War

Feb 17, 2016• 5

By SHIRA FISCHER

flying cadeucii When I showed up at the obstetrical urgent care unit at Brigham and Women’s Hospital, the care I received was swift and appropriate. I saw a nurse quickly and a doctor soon after. They asked relevant questions and immediately put a plan for further evaluation in place. Only then did the nurse turn to the computer to enter everything into the electronic record. As she worked her way through the required documentation, she asked several more questions. Any allergies that weren’t already in the system? Surgeries she should note? And, of course, importantly, had I been to an Ebola-infected country recently?

In September 2014, Texas Health Presbyterian Hospital missed acting upon the fact that a patient had just returned from West Africa, even though it was documented in his record. He came down with Ebola, but wasn’t treated with appropriate precautions, and many patients and staff were put at risk. The hospital was publicly criticized for its behavior. The hospital administration responded by blaming its electronic health records (EHR), since the system didn’t bring the travel history to the forefront as part of the doctor’s workflow. Since then, hospitals have scrambled to systematically screen for the often-fatal virus that took more than 10,000 lives in the past three years. Hospitals have incorporated a relevant screening question into their EHR, like the one I was dutifully asked during my recent urgent care visit. A win for technology and public health?

Why We Have so Little Useful Research on ACOs

Feb 16, 2016• 16

By KIP SULLIVAN

flying cadeucii Our country urgently needs research on the impact of “accountable care organizations” on cost and quality. The ACO has been the establishment’s great hope for health care reform since the concept was invented at the November 9, 2006 meeting of the Medicare Payment Advisory Commission. If ACOs are not going to work, we need to know sooner rather than later.

Although it’s been almost a decade since the ACO concept was invented and six years since Congress endorsed it, we know remarkably little about ACOs. What little reliable research we have was done on CMS’s ACO programs, but even that research is woefully incomplete. As for the ACOs set up by state Medicaid agencies and insurance companies, we know almost nothing.

Yes, I know, we have a few dozen papers telling us where ACOs are starting up, whether physicians or hospitals are “leading” them, and whether their managers tells pollsters they can “monitor care across the continuum” and “have programs in place to reduce hospital admissions,” etc. But we have no idea what ACOs do for patients that non-ACO providers do not do.

There are two reasons for this information vacuum. The first is the definition of the ACO. ACO proponents have never defined the ACO; they have told us only what they hope ACOs will do (they tell us they want ACOs to “hold providers accountable”). The second problem is the cavalier attitude toward evidence with which ACO proponents and analysts approach ACO research. Until the US health policy community addresses these problems, the dearth of useful research on ACOs will continue.

In this comment, I will describe these twin problems – the amorphous, aspiration-based definition of ACO, and the casual attitude toward evidence exhibited by ACO proponents and analysts. In Part II of this series I will illustrate these problems with a report on ACOs financed by the Robert Wood Johnson Foundation. The report, entitled “Accountable Care Organizations: Looking back and moving forward,”http://www.chcs.org/media/ACOs-Looking-Back-and-Moving-Forward.pdf was released last month by the Center for Health Care Strategies. In Part III I will argue that the vague definition of ACOs and the cavalier attitude toward evidence exhibited by ACO proponents is a result of a permissive culture that evolved first within the managed care movement and then spread throughout the American health policy community.

Why I Don’t Believe In Science

Feb 16, 2016• 14

By MICHEL ACCAD, MD

A few days ago, cardiologist and master blogger John Mandrola wrote a piece that caught my attention. More precisely, it was the title of his blog post that grabbed me: “To Believe in Science Is To Believe in Data Sharing.”

Mandrola wrote about a proposal drafted by the International Committee of Medical Journal Editors (ICMJE) that would require authors of clinical research manuscripts to share patient-level data as a condition for publication. The data would be made available to other researchers who could then perform their own analyses, publish their own papers, etc.

The ICMJE proposal is obviously controversial, raising thorny questions about whether “data” are the kinds of things that can be subject to ownership and, if so, whether there are sufficient ethical or utilitarian grounds to demand that data be “forked over,” so to speak, for others to review and analyze.

Now all of that is of great interest, but I’d like to focus attention on the idea that conditions Mandrola’s endorsement of data sharing. And the question I have is this: Should we believe in science?

Mandrola’s belief in science must assume that medical science can reveal durable answers, truths upon which we can base our clinical decisions confidently. He comments:

I often find myself looking at a positive trial and thinking: “That’s a good result, but can I believe it?”…Are the authors, the keepers of the data sets, telling the whole story?

Marijuana Know-Nothingism

Feb 16, 2016• 6

By TERRY M. BENNETT, MD

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I had a call from a newspaper the other day asking my opinion on the use of marijuana in children as in anyone under 21 years old, either for recreational purposes, or for medication purposes. I might have, if I had had the opportunity to think about it, countered with the question, how about “safe Johnny Walker for children?,” because we have been to this rodeo before.

The drinking laws in almost every state bar young people from consuming alcoholic beverages until they are 21 years old.

The reasons for that proscription date back many generations of young humans, back into prehistory, even before there were written records, probably, and most likely are based on empiric observations of youthful behavioral deficits continuing throughout the adult lives of the young people who began drinking heavily well before they were 21.

Let me make the point that it is critically important for a society that demands that as its young people mature, they be psychologically and physiologically prepared to move into leadership positions, to make informed and effective parenting decisions, and that they be unlikely to make uninformed, defective or damaging decisions. In societies that allowed drunken youngsters free reign, it was noted even that upon reaching “maturity” that these early experimenters were quite immature, and that their judgment was suspect, and that the tasks assigned to them were either poorly done, or not done at all, that lifetime damned foolishness was a clear and present hazard in early onset drinking populations.

Unicornius Gorus – Theranos and Zenefits

Feb 15, 2016• 2

By FRED GOLDSTEIN

The Lab test reinvented – Theranos

So I have to ask Theranos; which lab test have you reinvented? Is it the one where you do a full blood draw and send it off to UCSF to pay way more than the amount you charged the patient? Is there something in that business model I am not getting? Or did you reach back to the old “I’ll make it up in volume” approach.

The Nation’s First Modern Benefits Broker – Zenefits

And you Zenefits, if your idea of “Modern Benefits Broker” is that they are not licensed to sell insurance, I think I’ll go for the pre-modern broker.Yes I know, I’ve heard it soooooo many times, all it takes is a bit of silicon valley whiz bang and the whole world will be better, take that unique bravado and creativity and apply it to healthcare, change the world.

Only one small problem; as Esther Dyson said at Health 2.0 many years ago and I’m paraphrasing from memory:

I’ll come back in two years and most of you won’t be here, why because you don’t understand healthcare. You can build all the great systems you want, but if they don’t work in healthcare, because you don’t understand it, you’re done.

Dear Madam/Mister Future President

Feb 15, 2016• 25

By MARGALIT GUR-ARIE

As I am writing this, you don’t yet exist, and I hope you never will. As I am writing this, at least half a dozen people are still standing in the quadrennial jousting tournament we call elections. Elections in America is that brief and fleeting period of time when Washington DC turns its gaze to the rest of the country feigning passionate interest in our lives. This time around America is staring back at you in seething anger. In the olden days, this would be the proper time for tar and feathers, for pitchforks, and for burning you in effigy. Nowadays, this is the time for Twitter trolling and lack of what you call decorum in public discourse. Like all well fed, self-described benevolent aristocrats in the past, you seem surprised at our indifference to your accomplishments, and shocked at our plebian preference for rough and tumble champions of our own choosing.

The Trump Healthcare Interview

Feb 14, 2016• 14

By IAN MORRISON

Donald Trump is leading in the polls and could become the Republican nominee and maybe even President. He has not been specific on healthcare. I asked Scottish-Canadian-Californian healthcare futurist Ian Morrison to conduct an interview with Trump, figuring that Morrison would have an in with Trump given Trump’s praise for Scottish and Canadian healthcare. Not entirely coincidentally Ian is my old boss & mentor and will be a keynote speaker at this Fall’s Health 2.0 conference–Matthew Holt

Ian Morrison: Thanks for making time Mr. Trump, I was asked to interview you on healthcare because I am Scottish and your mother was a Scot.

Donald Trump: Yes she was, a beautiful person. I love Scotland. I own Turnberry, the best golf resort in Europe. I built a magnificent new course near Aberdeen. The Scots love me, I get along with the Scots.

Morrison: Actually, Mr. Trump, with all due respect, they think you are a bit of an asshole and were offended when you told them not to build a wind farm off shore from your new golf course because you thought it would spoil the view for your American visitors.

Trump: (Angrily). Look, the problem with the Scots is they don’t win any more. When was the last time you won…Braveheart, right? When was that 1800 or something?

Morrison: 1305

Trump: See. Losers for 800 years. So don’t talk to me about the Scots winning.

Morrison: So why did you point to Scotland and Canada as good examples of healthcare.Continue reading…

How to Calculate a VOI or ROI (if any) on Wellness

Feb 13, 2016

By TOM EMERICK

In the era in which wellness vendors were still claiming an ROI on wellness (and more and more are not), I asked a number of them how they calculated the ROI. Not one calculated the ROI in a way that a steely-eyed CFO would endorse.

Below is a partial list of costs wellness vendors should be considering, but rarely if ever do consider. If you have a wellness program and want to look for an ROI please start with this list:

Wellness vendor fees

Communication costs

Investments in materials (i.e. Fitbit) and facilities (i.e. onsite fitness centers)

The cost of biometric tests and health assessments

Accolade flying flag as patient advocates

Feb 12, 2016

By MATTHEW HOLT

I have spent years whining that no one is doing a good job helping people navigate through the maze of health care. And a survey out last week from my old firm Harris paid for by Accolade confirms that people need help. Doctors don’t and can’t do this. 71% of people said they trusted their doctors, but only 16% said their doctors had time to understand their life circumstances. Yet last summer a touted Silicon Valley startup called Better failed to make a go of a service doing just that.

Somehow Accolade seems to be threading this needle. They’ve raised more than $125m (including another $30m late last year beyond what I discuss in this interview). While they’re helping patients they’re charging their employers and insurers for the service. Late last summer I met Accolade’s EVP Amy Loftus. In this interview she explains what they do, and how it works.