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Year: 2017

ONC Interoperability Meeting Raises More Questions Than Answers

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By ADRIAN GROPPER, MD

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

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By ANDY ORAM

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

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ANISH KOKA, MD

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!

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By CHELSEA POLANIECKI

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

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By UWE REINHARDT

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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Watching Trumpcare Die

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By KIP SULLIVAN

It’s hard to know what “Trumpcare” is, but whether it’s “repeal” or “repeal and replace with something terrific,” it was and is going to fail. It was either going to fail to be enacted by Congress, or if it was enacted, it was going to set off such a bipartisan backlash it would be repealed, either by a chastened Republican Congress or a new Democratic Congress and president.

The reason Trumpcare was doomed was that health care is not like global warming or police shootings or use of military force in foreign countries: It is an issue a large majority of Americans agree on, and it is an issue voters can assess with their own eyes in their own kitchens.

Republican voters are almost identical to Democratic voters in what they want in a health care system. They want comprehensive coverage, low out-of- pocket costs and affordable premiums, freedom to choose their own doctors (they could care less about freedom to choose between Aetna and Humana), and freedom from interference by bureaucrats (be they public or private). Obamacare became a liability for Democrats because the public clearly perceived that the ACA could not meet those requirement for millions of Americans. The public now clearly perceives Republicans want to enact legislation that would be even worse than the ACA.

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SMACK.health — the new way to think about health tech

By MATTHEW HOLT

I’ve also been having a bit of fun with creating a new site called SMACK.health, which uses the new .health domain extension. Well you knew you needed both a new definition to replace the fuzzy term “digital health” and .com is so 1999! But what am I talking about when I use the term SMACK.health, and why? I was asked to write a piece about technology in health for USA Today spin-off, and I’ve repurposed it here to celebrate the official .health launch.

There’s a big change coming to our health care experience — driven by technology. Health care is moving from a point-in-time event to one of continuous care. Think of your last doctor’s visit. You probably had a few minutes with a rushed clinician and were sent on your way. The next steps, such as correctly interpreting the instructions, getting prescriptions filled and figuring out next steps was left largely on you. Yet, most conditions, like diabetes, heart disease and asthma, require continual monitoring and management to avoid painful and costly complications. In fact, what happens outside the doctor’s office is more important than that meeting in it.

A new way

Relying on the old point-in-time interventions doesn’t work. To this point, most hospitals and doctors have only had information tools that record what they did in the visit or during the procedure. Instead, SMACK.health technologies will enable clinical teams to perform continuous care. SMAC stands for Social & Sensors, Mobile, Analytics and Cloud. These are the underlying technologies behind what we now use every day — Skype, texting, WhatsApp, iTunes, Facebook, Google, Amazon, et al. To reach patients wherever they are, thousands of relatively new companies are building similar technologies and services that will help a combination of today’s clinicians and tomorrow’s automated artificial intelligence systems manage patients — and help patients manage themselves. And hopefully they’ll be doing it with a big dose of empathy — hence our adding the “K for Kindness” to the SMACK.health lexicon.

Information influx

The other big change is going to come in what we use those technologies to do. For sure, patients are already way, way better informed than they were 15 or 20 years ago. They can access great content online, including information shared by other patients on sites like PatientsLikeMe, MedHelp and Smart Patients. Patients and their caregivers will use those tools to be better informed about their care and inform each other and their clinicians. But that’s not all. We are already seeing services like American Well, Teladoc and DoctorOnDemand (sometimes provided by current health insurers and hospitals) enabling video visits. A whole range of cameras, sensors and medical tools will make those services, and a host of others, better able to connect patients with clinical solutions.

What’s next

We are also going to use new technology to diagnose and treat. Computer algorithms from companies like PhysIQ are already remotely reading abnormal heart rates via disposable patches. Soon, a range of devices will be in the bathroom reading your spit, poop, blood, breath and vital signs. Companies like Philips and Nokia and startups Kinsa, uBiome and CloudDX are bringing them to market. They’ll first be used by the sickest patients, but soon they’ll be mainstream consumer goods. Finally, mental health, physical therapy and more are already being delivered by avatar-based artificial intelligence like Ginger.io and Reflexion Health.

The health care system faces huge changes adapting to the realities of these new technologies. But when it does, it will improve the experience for patients and clinicians. And it will bring patients and society better health outcomes.

Matthew Holt is the publisher of THCB and Chair, Health 2.0 Conferences

Is Trumpcare Dead?
Was It Ever Really Alive?

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By JOHN IRVINE

Senators Mike Lee and Jerry Moran said yesterday that they would not vote for the Better Care Reconciliation Act, effectively killing the legislation.  As anybody who has been following this story would have predicted, President Trump reacted publicly on Twitter on Tuesday morning, vowing to let the ACA marketplace collapse and then rewrite the plan later.

Senate Majority leader Mitch McConnell attempted a quick punt this morning, calling for an immediate Senate vote on the House bill, a trick card that if it worked, would give Republicans two years to work things out.

Unfortunately for McConnell, it probably won’t.

The White House sees the failure as saying more about the political establishment in Washington than itself, which shouldn’t be all that surprising. Caught up in the drama of the Watergate-Russia emails-Trump family narrative, major media outlets like the Washington Post and the New York Times see a historic defeat rather than a temporary setback. That may or may not turn out to be true. Predictably, conservative commentators and the alt-right believe the defeat says more about the mainstream media and the Deep State than it does about the Trump Presidency. For their part, Democrats clearly think they have found their issue and can be expected to continue to exploit it using legislative Viet Cong tactics (attack on social media, melt into the jungle, lob snarky public Molotov cocktails) to punish Republicans and keep the story on the front page.

One thing is clear. Instead of repealing and replacing Obamacare, the GOP now has to rewrite and replace its own plan. Doing that would be difficult under the best of circumstances, but in the current climate in Washington it is difficult to see how it would be possible without a major shift in the political landscape.

All of this is bad news for hospitals and health plans and a frightening development for consumers, although not the really bad news some had feared. The President’s threat to let the insurance marketplace die and then “figure it out” sounds good as a rallying cry to the troops on social media, but is not the kind of thing that investors and CEOs like to hear.  Realistically though, at this point everybody knew that the uncertainty would likely continue through the year (best case) or a year or longer (worst case) as the gridlock in Washington plays out. As depressing and frustrating as it is that the uncertainty will continue, by this point the industry is used to it. Insiders will continue to look for ways to minimize risk and for business opportunities to capitalize on the uncertainty.

Trump’s plan to allow the insurance exchanges to collapse is the kind of confrontational talk Trump and his advisors relish. In theory, the idea could work. There are in fact signs that it already is, as major insurers leave the marketplace and consumers hesitate before committing to expensive insurance policies.  In reality, however, the collapsing exchanges will create a political crisis that is even worse than the current one for the administration, with news cycle after news cycle dominated by stories of terminally ill cancer patients and parents with children with horrible diseases and no insurance coverage. At this point, it will be difficult for the party doing the collapsing to point at the other side and say “It was them. They did it!”

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Parsely Health Interview & Job Ad!

By MATTHEW HOLT

A little while back I caught up with former Health 2.0er Robin Berzin. (I first ran this video interview on Facebook). She’s a functional medicine doctor and now CEO of Parsley Health, a direct pay/concierge functional medicine clinic that also uses lots of new health tech. It’s operating in New York, Los Angeles and San Francisco. Robin has an interesting model and is also looking for help. (And I’m running this ad for love not money!) Any MDs out there wanting to try a new route, see her blurb below the interview.

Parsley Health is hiring top primary care doctors at its centers in NYC, SF, and LA. At Parsley Health we practice whole-person Functional Primary Care focused on nutrition wellness and prevention along with advanced diagnostic testing. In addition we are building a groundbreaking new technology platform for primary care and offer both virtual and in-person services. If you are a physician and are looking to join a collaborative modern practice please visit our job description here or email your CV to jo**@***********th.com. Preference given to board-certified internal medicine and family medicine trained MDs with additional training in functional medicine. Additional clinical training available.

Regulatory Capture Tests the New Administration

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By ADRIAN GROPPER, MD

The bipartisan 21st Century Cures Act charges HHS / ONC to deal with two issues that previous laws (HIPAA and HITECH) and the Obama HHS left in-progress: information blocking and longitudinal health records. ONC needs to deal with these two issues at a time when there are calls to delay or rescind some Meaningful Use regulations, in an administration that does not favor regulations, with some vendors already starting to ship Meaningful Use Stage 3 EHR products, and while the budget for ONC is still undetermined. ONC can’t be too careful.

Judging by the agenda, the July 24 21st Century Cures Act Trusted Exchange and Common Agreement (TFCA) Kick-Off Meeting is a step in the wrong direction. Listening to the “health IT stakeholders” is a prescription for advancing the interests of the health IT stakeholders instead of dealing with patients and physicians as the stakeholders. Framing the issue as “National Trust Frameworks and Network-to-Network Connectivity” is a recipe for continued ineffective interoperability as the “stakeholders” line up for another round of regulations that promote rent-seeking middlemen with catchy names like Direct Trust, and CommonWell.

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