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Medicare Holds Out Promise of Health Record Access Revolution

By MICHAEL MILLENSON

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.

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Health in 2 Point 00, Episode 37

Jessica DaMassa asks me about the American Well mega funding round, Cerner investing in Lumeris, and the new NHS England app. Which naturally descends into a conversation about England’s chances in the world cup semi-final tomorrow!–Matthew Holt

SPM’s comments on important proposed CMS interoperability rules

By E-PATIENT DAVE DEBRONKART

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:

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Social determinants on becoming a physician

By SAURABH JHA

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.

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Health in 2 point 00, Episode 36

Back in the US of A to celebrate the nation’s birthday, Jessica DaMassa asks about Amazon buying Pill Pack, GE spinning off its health division, and what Rock Health and Startup Health’s numbers say about health tech investment–Matthew Holt

The Past, Present and Future of Health Care

OK, so it’s a tad of an ambitious title… but it was a talk that I gave in Finland last month. I had fun looking at the development of health and technology and suggesting a structure for the future. Plus I got to tell my Neil Armstrong joke. The talk was part of the Upgraded Life Festival in Helsinki and you can see some of the other speakers videos on their channelMatthew Holt

Why I Tattooed My Health Data Over My Heart | WTF Health with Casey Quinlan

WTF Health – ‘What’s the Future’ Health? is a new interview series about the future of the health industry and how we love to hate WTF is wrong with it right now. Can’t get enough? Check out more interviews at www.wtf.health

How can patients help usher in a better future for healthcare? Start speaking up. LOUDLY.

In this WTF Health interview, meet one of health’s most outspoken patient advocates, Twitter voices (@mightycasey) and podcasters, Casey Quinlan of Mighty Casey Media, who talks about her patient journey as a cancer survivor — and why the awful experience led her to tattoo a QR code linking to her electronic medical record to her chest.

Casey’s ‘physical political protest’ is tied to her passionate views about the lack of data liquidity in healthcare and how patients suffer as a result. She’s launching a new “If-You’re-Selling-My-Health-Data-Cut-Me-In” Movement and weighs in on why more patients aren’t clamoring after their health data to push real change in the healthcare system.

Filmed at Health Datapalooza in Washington DC, April 2018.  

Stay Out of my Wellness

By VA WEST HAVEN COE CLINIC

On a sunny New England morning at a secluded guest house with a perfectly manicured lawn, medical residents, each with their own brightly colored yoga mat, were getting ready to assume the downward dog position. They were on an annual retreat organized by their residency program to promote wellness. One embraced the opportunity with delight, smiling through every pose.  Another grimaced  as his back spasmed. And yet another wandered off towards a lake to find his own kind of respite.

Physician wellness has become something of a buzzword in recent years, and rightfully so considering that the rates of burnout and suicide within medicine are rising. Individual residency programs have found burnout rates between 55% and 76%. Such burnout erodes well-being over time and may be contributing to suicide, which is now the second leading cause of death among residents nationwide. In 2014, the suicides of two medical interns in New York prompted the American College of Graduate Medical Education to take action. A series of initiatives to combat burnout were rolled out, including the consideration of wellness in its review of residency programs during site visits. In 2017, emergency medicine physicians convened the first Residency Wellness Consensus Summit to devise a module-based curriculum on wellness. Hospital systems have attempted to respond as well, through the hiring of chief wellness officers.

It is unsurprising that the medical community has taken such an analytical approach towards diagnosing burnout, much as we do with other diseases, in search for a cure. But perhaps such a prescriptive approach fails to capture the highly individualized and somewhat abstract concept of wellness. The reasons for resident burnout are personal and vast. Decreased wellness has been attributed to the lack of time for self-care, inadequate sleep, social isolation, negative work environments, excessive paperwork, long work hours, poor relationships with colleagues, and insufficient mentorship, among others in a lengthy list. Any attempt to standardize the definition of wellness should be met with caution.

So how do we as a society go forward in ensuring our resident physicians are well?Continue reading…

Sending the Questions to the Data

As hospitals and practices form accountable care organizations, they will accelerate their efforts to build healthcare information exchanges and novel analytics that support community-wide lifetime care rather than siloed episodic care,   This requires “freeing the data” from the EHRs, hospital information systems, and laboratories in which it resides.

There are two basic ways to analyze data for a panel or population.

1.  Send the data from multiple sources to a central repository for analysis.

BIDMC has partnered with the Massachusetts eHealth Collaborative on such an approach to build a quality data center supporting its ACO strategy.

2.  Send the question to the data.

The new federal Query Health initiative is a standards-based approach that enables standardized questions to be sent to multiple federated databases without moving the data itself.

In Massachusetts, we’ve implemented such an architecture in two ways.

I2B2/Shrine which links together the Harvard hospitals (and many other sites nationwide) with query tools supporting clinical trials and clinical research.

MDPHNet, an ONC funded Challenge grant which sends questions to data sources,  answering public health questions.

MDPHnet is being developed under contract with the Massachusetts eHealth Institute to implement a secure web-based query tool which enables predefined and ad hoc queries to be sent to participating sites, including selected practices within the Mass League of Community Health Centers and potentially, Atrius Health.

Queries are executed locally, securely returned after optional review, and then presented to the requester and displayed in a variety of ways – heat map, histogram, table etc.  Results contain no patient-identifiable data.  Data holders control authorization of requesters and their specific query capabilities.

The current focus for predefined reports is syndromic surveillance (Influenza-like illness) and chronic disease surveillance (diabetes).  It can also support other uses, such as pharmacovigilance and quality measurement.

MDPHnet uses PopMedNet open source software developed by the Harvard Medical School Department of Population Medicine at the Harvard Pilgrim Health Care Institute, with support from AHRQ and FDA. Lincoln Peak is co-developer.

There is great synergy among i2b2, PopMedNet and MDPHnet, since they use a common architectural approach. Query Health incorporates PopMedNet in its design.

MDPHnet uses the Electronic Health Record Support of Public Health (ESP) common data model.  ESP  was developed by the HMS/HPHCI Department of Population Medicine with support from a CDC Center for Excellence in Public Health Informatics.

The Massachusetts League of Community Health Centers transforms data from their clinical data warehouse into the ESP format. Commonwealth Informatics supports the process as needed.  Additional participants will extract data from their EHR and put it into the same schema (ESP) with help from Commonwealth Informatics.

MDPHnet can be readily expanded to cover other datasources such as the I2B2 nodes which are hosted at over 60 sites nationwide.

Over the next few years I believe that for many use cases we will be sending questions to the data instead of sending the data to centralized registries.    I2B2,  MDPHnet, and Query Health will show us how.

John D. Halamka, MD, MS, is Chief Information Officer of Beth Israel Deaconess Medical Center, Chief Information Officer at Harvard Medical School, Chairman of the New England Healthcare Exchange Network (NEHEN), Co-Chair of the HIT Standards Committee, a full Professor at Harvard Medical School, and a practicing Emergency Physician. He’s also the author of the popular Life as a Healthcare CIO blog.

Money, Medicine and Ethics

The American College of Physicians has published their updated manual on ethics for physicians and the following passage is causing quite a stir:

Physicians have a responsibility to practice effective and efficient health care and to use health care resources responsibly. Parsimonious care that utilizes the most efficient means to effectively diagnose a condition and treat a patient respects the need to use resources wisely and to help ensure that resources are equitably available.

On the right, American Enterprise Institute scholar Scott Gottlieb writes “Parsimonious, to me, implies an element of stinginess, and stinginess implies an element of subterfuge.” (Quote of the Day in American Health Line.)

On the left, Aaron Carroll writes:

I would fight tooth and nail to get anything — and I mean anything — to save [his own child]. I’d do it even if it cost a fortune and might not work. That’s why I don’t think you should leave these kinds of decisions up to the individual. Every single person feels the way I do about every single person they love, and no one will ever be able to say no. That’s human.

Similarly, I don’t think that it’s necessarily fair to make it a physician’s responsibility. I also want my child’s doctor to fight tooth and nail to get anything that might save my child. Many times, physicians have long-standing relationships with patients. Asking them to divorce themselves from the very human feelings that compel them to do anything that might help their patients is not something that I think will necessarily improve the practice of medicine. They also should be human.

So whose job is it? Well, mine for instance. That’s what I do as a health services researcher. That’s what policy makers should also do….

That’s a roundabout way of saying that only the government can ration care the right way. Here is Don Taylor’s (Incidental Economist) take on the subject.

My view: people in health care have become so completely immersed in the idea of third-party payment that they have completely lost sight of the whole idea of agency.

[youtube]http://www.youtube.com/watch?v=BQMI7TksYo0&feature=player_embedded[/youtube]

This game of life I play
Living and dying with the choices I made

Can you imagine a lawyer discussing the prospects of launching a lawsuit without bringing up the matter of cost? What about an architect submitting plans for a building but completely ignoring what it would cost to build it?  Outside of medicine, can you imagine any professional anywhere discussing any project with a client and pretending that money doesn’t matter? Of course not.

Then what is so special about medicine? Answer: the field has been completely corrupted by the idea that (a) patients should never be in a position to choose between health benefits and monetary cost, (b) doctors shouldn’t have to think about such tradeoffs either, (c) in order to insulate the patient from having to choose between health care and other uses of money, third-party payers should pay all the medical bills and (d) since no one else is going to think about what anything costs, the third-party payer is the only entity left to decide which services are worthwhile and which ones aren’t.

To appreciate how doctors could do the same thing other professionals do in advising patients on how to spend their own money, take a look at the graphic below. These numbers are several years old and there may be more recent studies, but the graphic will serve our heuristic purpose. Armed with this information, what would a responsible doctor tell her patient about Pap smears and how often the patient should get them?

Source: Tammy O. Tengs et al., “Five Hundred Lifesaving Interventions and Their Cost-Effectiveness,” Risk Analysis, June 1995.

 

Note that getting a Pap smear every four years (versus never getting one) costs $12,000 per year of life saved, when averaged over the whole population. What the responsible doctor should say is, “In the risk avoidance business, this is a really good buy. Based on choices people like you make in other walks of life, this is a good decision. This type of risk reduction is well worth what it costs.”

What about getting the test every three years (versus every four) or every two years (versus every three)? Here the doctor should say, “Now we are moving toward the upper boundary of what most other people are willing to spend to avoid various kinds of risks. So at this point, serious thought needs to be given to whether the test is really worth what it cost.”

How about getting the test done every year (versus every two years)? Here the responsible doctor will say, “This is definitely a bad buy (unless there is some specific indication). The cost of an annual Pap smear in relation to the amount of risk reduction achieved is way outside the range of choices most people make with respect to other risks.”

Notice what is going on here. The responsible doctor, functioning as an agent of a patient who is not familiar with the medical literature and who is not skilled at evaluating risks or trading off risk reduction for other uses of money, advises her patient in these matters. She helps her patient manage both her health and her money — because both are important.

When Dr. Carroll says “I’d do it even if it cost a fortune and might not work,” I am sure he is being sincere. But I am equally sure that is not how he normally makes decisions. It is in fact easy to spend a fortune to avoid small-probability events. The EPA makes the private sector do it every day. But if an ordinary family tried that, they would end up spending their entire income avoiding trivial risks. And that is not what normal people do.

Here is another example of a money-is-no-object-no-matter-how-improbable-the-prospects-if-life-and-death-are-at-sake choice. This is Zeke Emanuel, writing in The New York Times the other day:

Proton beam therapy is a kind of radiation used to treat cancers. The particles are made of atomic nuclei rather than the usual X-rays, and theoretically can be focused more precisely on cancerous tissue, minimizing the danger to healthy tissue surrounding it. But the machines are tremendously expensive, requiring a particle accelerator encased in a football-field-size building with concrete walls. As a result, Medicare will pay around $50,000 for proton beam therapy for a patient with prostate cancer, roughly twice as much as it would if the patient received another type of radiation.

Emanuel claims there is no evidence the treatment works for prostate cancer — so the therapy is a waste of $25,000. Is he right? I don’t know. If you’re paying the extra $25,000 out of your own pocket, listen to what the doctors at Mayo have to say (in favor of its use) and then listen to what Emanuel has to say and make up your own mind.

Bottom line: helping patients manage their health dollars as well as their health care should be what doctoring is all about.

John C. Goodman, PhD, is president and CEO of the National Center for Policy Analysis. He is also the Kellye Wright Fellow in health care. His Health Policy Blog is considered among the top conservative health care blogs where health care problems are discussed by top health policy experts from all sides of the political spectrum.

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