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Repair and Reboot

I told you so.  I also told the POTUS in my open letter, but he did not read it. 

Who could honestly believe the nation would support dumping coverage for 22 million people?  As David Leonhard wrote recently op-ed in the New York Times: “They [Republicans and President Trump] had only one big weakness, in fact: They weren’t dealing in reality.”  When faced with reality, it is interesting what a few good Senators with a conscience will refuse to do. 

Success is never attained by taking shortcuts.  We do not need reform of health care; we need to reboot the entire system.  Special interests do not belong in the picture.  They are incompatible with developing innovative solutions that place profits on the back burner.   Congress is making this too difficult.  They need to roll up their sleeves, go back to the drawing board, and start again.  My suggestions:

Step 1:  Every member of Congress should participate in a mock hospital admission as a patient, starting with presentation to the ER, being poked and prodded, having surgery if necessary, and staying overnight to recuperate.  After your experience, you should be provided a “bill” on your way out the door and pay the balance by cash or check. 

Step 2:  Go see your own primary care physician for two reasons.  The first is to have an annual exam and to connect with your constituents in the waiting room, solicit their comments, thoughts, or suggestions, and converse with office staff to understand their perspective.  The second reason is to elicit feedback directly from your primary care physician.  Listen for groundbreaking solutions to the perplexing boondoggle of caring for greater numbers at a lower cost.

Extra credit:  Follow a primary care physician in a Health Professional Shortage Area (HPSA) for three days.  Listen, engage, clarify, empathize, and most importantly absorb how monumental this undertaking of reforming health care will be. 

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This EHR Mess We’re In

Dr. Matthew Hahn blogs about the current state of today’s EHR’s and rightly points out many of the same reasons that I have identified in my previous posts:

  1. The negative impact of Meaningful Use (MU) since 2009
  2. Poor usability of EHR’s

There are several other important concerns that have been left unanswered by our current Health IT offerings.

  1. Patient privacy and control of their health records
  2. Interoperability

Government Pipedream?

The solution Dr. Hahn proposed is one that hinges on the hope that government will abandon MU (unlikely given this political climate), and create a whole new EHR development program based on a national competition and then for the government to subsidize the cost of that winner EHR for physicians to use.

Subsequently, this national competition will engage physicians so that they have control over their destinies in designing the EHR of their dreams.  But is it realistic to hope that government will support such an endeavor?  Although I’m a believer that government should and ought to play a role in setting fair rules and be accountable to the public (for the many and not the few) and not to be overrun by lobbyists and those with the most money and influence who can rig the system, I doubt this solution will see the light of day with our currently polarized politics and the continued, large influence of big money interests in government today.

Movements as Inspiration

Here is my proposal that leverages existing platforms and technologies (but that most physicians may not be aware of) without hoping for the government to intervene today (or yesterday).  Only until a community of patients, physicians, and developers that have a common goal of creating an EHR that works for both physicians and patients, that we ultimately compel the government to support (financially) the further development and adoption of this type of system.  Those who have studied previous movements (such as the LGBT social movement, thee Civil Rights movement, and the women’s suffrage movement) took a group of like-minded individuals from different walks of life who struggle together, make their voices heard, participate, and ultimately control the cultural narrative to the point that government had no choice but to abide to the sea change that has already taken place.  This is where physicians and patients have to start.  And we have the tools to start the change as we see fit.

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Digital Health Marketplace: Facilitating Rapid Technology Adoption and Spurring Growth in New York City.

$200,000 in Awards to Health Tech Companies and Pilot Partners for the 4th Class of Digital Health Marketplace

Six winners were awarded of a total of $200,000 in grant funding through Digital Health Marketplace.

Digital Health Marketplace, a New York City Economic Development Corporation (NYCEDC) program, powered by Health 2.0, connects health technology buyers with market-ready sellers through biannual matchmaking and by providing grants to offset the cost of piloting their technologies in healthcare institutions. The program has provided over $2,500,000 in grant funding over the course of 3 classes. This year, the fourth class of Digital Health Marketplace winning pilots are anticipated to impact over 6,000 patients in New York City throughout the next year. The technologies span from care coordination platforms to patient engagement systems to devices.

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How Much Is That CAT Scan in the Window?

Who knew healthcare could be so complex? The GOP proposal for health care reform rests on health savings accounts and high deductible health plans.   The basic premise is that price opacity, and deep pocketed third party payers drive up the cost of health care.   Giving patients dollars in health savings accounts they control should make them price sensitive, and thus help reduce the cost of healthcare.  A recent analysis by Drs. Chandra and others provides an interesting perspective on the matter.

The researchers took a large self insured firm that required all of its employees to switch from an insurance plan that provided free healthcare to a nonlinear, high deductible plan.  The switch worked.  Health care spending was significantly reduced, but the concern was the mechanism by which spending was reduced.  One would like to believe spending reductions related to price shopping, so patients were getting the same services just for cheaper.  Unfortunately, it appeared that consumers reduced all spending regardless of whether it was worthwhile or not.  Deciding what is worthwhile in healthcare is a complicated business that I will leave for another day but I agree with the general contention of the paper – giving a patient control over health care dollars does not make for a smart price shopper.

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How Insane Could This Get?

At long last, the Senate is poised to begin voting today on a measure to repeal and/or alter portions of the Affordable Care Act.

Much remains in flux regarding process and the substance of what will be voted on.   According to multiple media sources today, Senate leaders latest strategy is to hold a vote on a narrower piece of legislation than those circulated in recent weeks.

The substance of such a measure—if indeed, it exists and is submitted for a vote—is unclear as of this posting.  But it reportedly could contain just a repeal of the ACA’s individual and employer mandates and a few of the law’s taxes, such as the one on medical device companies.

This narrow, or “skinny,” bill would not have any provisions pertaining to Medicaid.

The idea, apparently, is to pass this initial piece of the puzzle—to get things going—and then to take up the larger and more controversial issues that have so deeply divided the Republican caucus.Continue reading…

ONC Interoperability Meeting Raises More Questions Than Answers

ONC’s first public event under the new administration was very well organized and run. Eight leading health information exchange incumbents were able to describe their current approaches and plans, the patient advocate position was clearly stated, and a nice synthesis of the issues raised by the trusted framework approach to interoperability was prepared by a consulting organization. Much to ONC’s credit, they went out of their way to provide access and public comment to an extent that is unprecedented in my experience. Slides and recordings will be posted soon and a 30-day comment period runs through August 24. Kudos to ONC.

The proceedings raised a lot more questions than answers and, from my perspective, call into question the whole approach to interoperability that we’ve inherited from the HITECH-era ONC.

  • Algorithmic (and coercive) patient identity matching has no solution in sight
  • Interoperability between HIPAA and non-HIPAA entities has no solution in sight
  • Different frameworks with different governance principles can only interoperate at a lowest common denominator, frustrating both clinicians and families
  • Identity proofing of patients confuses pretty much everyone
  • All agree that accountability is important but nobody proposed how patients can hold anyone accountable for anything
  • Incumbent systems are built around clunky document exchange instead of modern APIs and API Task Force principles
  • There is no consensus on who will pay the rent the health data brokers are seeking
  • Patient access is an afterthought for most of the data brokers and no solution seems to be in sight
  • The 21st Century Cures goal of a Longitudinal Health Record was not mentioned by anyone at all

By contrast, in the patient perspective presentation by Cynthia Fisher, we heard a call to turn the interoperability problem on it’s head: to start with the patient and caregiver not the provider and EHR vendor. “We paid for it already…we own it and should have it”, she said.

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Health + Design, Refactored

Health care providers love to vaunt the unique and subtle needs of patients. How many ads have you heard from cancer centers or health clinics touting their flexibility and showing grateful, tear-flecked patients?

But key aspects of our health care systems turn out to be rigid and heartless in practice. Despite the compassion of individual staff, our organizations tell patients in dozens of ways that they are widgets on an assembly line:

  • We force patients to come early for every appointment and fill out the same paperwork each time with information they have given before.
  • Patients traverse long, crowded corridors from one station to another, asking at each station for information they don’t get and never knowing how long each stop will take or how many more stations remain on their Kafkaesque journey.
  • Patients rush to undergo batteries of mysterious tests, sometimes repeatedly, only to wait long periods to hear the results.
  • We refer them to specialists who, it turns out, can’t see them, or who issue contradictory opinions without coordination.
  • After frustrating and unsuccessful attempts to learn the costs of procedures in advance, they receive cascades of arcane bills and watch their funds bleed out to charges that bear little relation to their experience in the clinic or hospital.

More fundamentally, our field has stuck to a cycle of diagnosis and treatment that leads to people suffering through death in a welter of tubes and IVs, while 28% of all Medicare costs are incurred in the last six months of life. Pharmacologist Jay Gupta claims that nearly 50% of all seniors in the US take a medication that is not clinically necessary. This is expensive, debases their health, and leads to greater risks of adverse reactions.

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Giving Cancer Hell

There are 80,000 new cases of primary brain tumors diagnosed every year in the United States.  About 26,000 of these cases are of the malignant variety – and John McCain unfortunately joined their ranks last week.  In cancer, fate is defined by cell type, and the adage is of particular relevance here.

Cancer is akin to a mutiny arising within the body, formed of regular every day cells that have forgotten the purpose they were born with. In the case of brain tumors, the mutinous cell frequently happens to not be the brain cell, but rather the lowly astrocyte that normally forms a matrix of support for brain cells.  Tumors made up of astrocytes are called astrocytomas.  Classification schemes for brain tumors in the era of molecular subtypes has grown enormously complex, but a helpful framework is provided by the appearance of these tumors under a microscope.  Grade 1 tumors are indolent, with little invasive capacity, while Grade 4 tumors are highly invasive, marked under the microscope as dense, sheets of cells that can even be seen to grow their own blood supply.  Senator McCain has a grade 4 astrocytoma, otherwise known a a glioblastoma (GBM) – the worst kind.   Social media from all sides of the political spectrum lit up with well wishes – with most casting the disease as something to be defeated.

Others within the medical community took a different take.

Mehreen is right.  GBM is a deadly disease,  the 5-year survival rate for patients with GBMs is <3%.  The majority of GBM patients live less than a year.  Yet, the medical community of neurosurgeons and oncologists that treat these tumors go to battle with these tumors.  Why?

I asked a very busy neurosurgeon this same question.   I asked him what he told patients. He told me that he never mentions the word cure.  There is no cure.  The goal is to manage the disease and buy more time.

Median survival for GBM is measured in weeks, not years.  Do nothing, and expect 14 weeks; combining surgery, radiation therapy, and chemotherapy may give you 45 weeks.

chart

What we describe is median survival, of course, and as Stephen J Gould eloquently put in his diatribe against statistics in cancer – the median is hardly the message.   The oncologist you want is the one who doesn’t tell you about median survival when breaking the news to you of your cancer – she implicitly understands each GBM has a different path.  Here are three such paths.

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Winners Announced: RWJF Choosing Care Challenge!

Ever step out of your doctor’s office feeling overwhelmed and instantly forget all of your doctor’s instructions? Instinctively, you look down to your phone to check your texts and emails–wait, no. Instead, you look down to your phone and see that your doctor has asked you to get an X-ray and you need to pick up your Advair prescription. You can see your options for local imaging centers and pharmacies, and what they will cost you, based on your specific insurance plan and location, right on your phone before even getting home. Well, that’s new.

The days of being rushed out of your doctor’s office and forgetting your care plan are over, thanks to the Choosing Care Challenge sponsored by the Robert Wood Johnson Foundation. The challenge, launched at Health 2.0’s Wintertech on January 11th, 2017, encouraged the development and advancement of technologies that help patients and providers identify and locate prescriptions, imaging labs, and specialists, all to fit an individual’s specific needs. Participants were equipped with resources such as APIs and data from PokitDok and Vericred. With over sixty initial Phase I applications, solutions ranged from chatbots, to web platforms and AI apps. The applications were reviewed by a panel of expert judges and narrowed down to five finalists, each awarded $5,000 to further develop their solutions.

For Phase II of the challenge, each of these five finalists were required to prove that their app or tool is more effective than the others. They displayed the app or tool and how it would be used in a short video, and provided the working solution itself for the judges to interact with in real time. The judges evaluated each submission based upon the following four criteria:

  • How helpful is the solution to patients?
  • How strong is the solution’s potential for scalability?
  • How effective is the UI/UX design for user friendliness?
  • How impactful is the solution for patient-specific needs?

The challenge prompted participants to “make it simple,” and that they certainly did. Phase II winners made health care decision-making especially simple.

Taking home first place, with a grand prize of $50,000, is (drumroll please) Stroll Health (@StrollHealth). Also a previous winner of Traction 2016, Stroll has built a seamless web platform that enables health providers to send patients directly to local imaging centers and specialists, and helps to manage prescriptions. Stroll’s easy-to-use platform provides automatic referrals, prior authorization and real-time scheduling. For the challenge, Stroll expanded their platform to include hundreds of thousands of specialists and more than five thousand prescriptions across the nation. Let Matt and Jordan walk you through the platform themselves in this video.
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I Finally Understand US Health Policy

The following exchange occurred during an interview of President Trump with journalists of the NYT:

HABERMAN: That’s been the thing for four years. When you win an entitlement, you can’t take it back.

TRUMP: But what it does, Maggie, it means it gets tougher and tougher. As they get something, it gets tougher. Because politically, you can’t give it away. So pre-existing conditions are a tough deal. Because you are basically saying from the moment the insurance, you’re 21 years old, you start working and you’re paying $12 a year for insurance, and by the time you’re 70, you get a nice plan. Here’s something where you walk up and say, “I want my insurance.” It’s a very tough deal, but it is something that we’re doing a good job of.

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