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Tag: Judy Faulkner

If data is the new oil, there’s going to be war over it

By MATTHEW HOLT

I am dipping into two rumbling controversies that probably only data nerds and chronic care management nerds care about, but as ever they reveal quite a bit about who has power and how the truth can get obfuscated in American health care. 

This piece is about the data nerds but hopefully will help non-nerds understand why this matters. (You’ll have to wait for the one about diabetes & chronic care).

Think about data as a precious resource that drives economies, and then you’ll understand why there’s conflict.

A little history. Back in 1996 a law was passed that was supposed to make it easy to move your health insurance from employer to employer. It was called HIPAA (the first 3 letters stand for Health Insurance Portability–you didn’t know that, did you!). And no it didn’t help make insurance portable.

The “Accountability” (the 1st A, the second one stands for “Act”) part was basically a bunch of admin simplification standards for electronic forms insurers had been asking for. A bunch of privacy legislation got jammed in there too. One part of the “privacy” idea was that you, the patient, were supposed to be able to get a copy of your health data when you asked. As Regina Holliday pointed out in her art and story (73 cents), decades later you couldn’t.

Meanwhile, over the last 30 years America’s venerable community and parochial hospitals merged into large health systems, mostly to be able to stick it to insurers and employers on price. Blake Madden put out a chart of 91 health systems with more than $1bn in revenue this week and there are about 22 with over $10bn in revenue and a bunch more above $5bn. You don’t need me to remind you that many of those systems are guilty with extreme prejudice of monopolistic price gouging, screwing over their clinicians, suing poor people, managing huge hedge funds, and paying dozens of executives like they’re playing for the soon to be ex-Oakland A’s. A few got LA Dodgers’ style money. More than 15 years since Regina picked up her paintbrush to complain about her husband Fred’s treatment and the lack of access to his records, suffice it to say that many big health systems don’t engender much in the way of trust. 

Meanwhile almost all of those systems, which already get 55-65% of their revenue from the taxpayer, received additional huge public subsidies to install electronic medical records which both pissed off their physicians and made several EMR vendors rich. One vendor, Epic Systems, became so wealthy that it has an office complex modeled after a theme park, including an 11,000 seat underground theater that looks like something from a 70’s sci-fi movie. Epic has also been criticized for monopolistic practices and related behavior, in particular limiting what its ex-employees could do and what its users could publicly complain about. Fortune’s Seth Joseph has been hammering away at them, to little avail as its software now manages 45%+ of all encounters with that number still increasing. (Northwell, Intermountain & UPMC are three huge health systems that recently tossed previous vendors to get on Epic).

Meanwhile some regulations did get passed about what was required from those who got those huge public subsidies and they have actually had some effect. The money from the 2009 HITECH act was spent mostly in the 2011-14 period and by the mid teens most hospitals and doctors had EMRs. There was a lot of talk about data exchange between providers but not much action. However, there were three major national networks set up, one mostly working with Epic and its clients called Carequality. Epic meanwhile had pretty successfully set up a client to client exchange called Care Everywhere (remember that).

Then, mostly driven by Joe Biden when he was VP, in 2016 Congress passed the 21st Century Cures Act which among many other things basically said that providers had to make data available in a modern format (i.e. via API). ONC, the bit of HHS that manages this stuff, eventually came up with some regulations and by the early 2020’s data access became real across a series of national networks. However, the access was restricted to data needed for “treatment” even though the law promised several other reasons to get health data.

As you might guess, a bunch of things then happened. First a series of VC-backed tech companies got created that basically extract data from hospital APIs in part via those national networks. These are commonly called “on-ramp” companies. Second, a bunch of companies started trying to use that data for a number of purposes, most ostensibly to deliver services to patients and play with their data outside those 91 big hospital systems.

Which brings us to the last couple of weeks. It became publicly known among the health data nerd crowd that one of the onramp companies, Particle Health, had been cut off from the Carequality Network and thus couldn’t provide its clients with data.

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Health in 2 Point 00, Episode 107 | SoftBank Money, Judy Faulkner’s Letter, & Practice Fusion Gossip

Today on Health in 2 Point 00, we have SoftBank Money! I managed to beat Chrissy Farr to this piece of gossip by about 3 weeks, but digital pharmacy startup Alto raises $250 million from SoftBank. Medloop raises 6 million euros doing communication with patients, and mental health startup Spring Health raises $22 million as well. Turning to the EMR drama, I also give a rundown on Judy Faulkner’s letter, and explain the cautionary tale that is Practice Fusion & the Purdue opiate promotion. —Matthew Holt

Strategic Interests and the ONC Annual Meeting

By ADRIAN GROPPER, MD

The HHS Office of National Coordinator (ONC) hosted a well-attended Annual Meeting this week. It’s a critical time for HHS because regulations authorized under the almost unanimous bi-partisan 21stC Cures Act, three and a half years in the making, are now facing intense political pressure for further delay or outright nullification. HHS pulled out all of the stops to promote their as yet unseen work product.

Myself and other patient advocates benefited from the all-out push by ONC. We were given prominent spots on the plenary panels, for which we are grateful to ONC. This post summarizes my impressions on three topics discussed both on-stage and off:

  • Patient Matching and Unique Patient Identifiers (UPI)
  • Reaction to Judy Faulkner’s Threats
  • Consumer App Access and Safety

Each of these represents a different aspect of the strategic interests at work to sideline patient-centered practices that might threaten the current $Trillion of waste. 

The patient ID plenary panel opened the meeting. It was a well designed opportunity for experts to present their perspectives on a seemingly endless debate. Here’s a brief report. My comments were a privacy perspective on patient matching, UPI, and the potential role of self-sovereign identity (SSI) as a new UPI technology. The questions and Twitter about my comments after the panel showed specific interest in:

  • The similarity of “enhanced” surveillance for patient matching to the Chinese social credit scoring system.
  • The suggestion that we already have very useful UPIs in the form of email address and mobile phone numbers that could have been adopted in the marketplace, but are not, for what I euphemistically called “strategic interests”.
  • The promise of SSI as better and more privacy preserving UPIs that might still be ignored by the same strategic interests.
  • The observation that a consent-based health information exchange does not need either patient matching or UPIs.
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A Letter to Ms. Judy Faulkner & Mr. Tommy Thompson

By GRACE CORDOVANO PhD, BCPA

Being a patient or a carepartner can be a lonely, powerless place.

There’s no high powered legal or lobbying team to help support you in your or your loved one’s health care journey. There’s no PR team at your beck and call. There’s no advisory board, no executive committee, no assistants, no chatbots or AI-powered technology coming to the rescue. There’s no funding or a company sponsoring your efforts.

There’s no course in how to be a professional patient or carepartner.

There’s no one there in the stillness and dark of the night, when you are in the quiet of your thoughts, the privacy of your personal space, where there are fleeting moments that you don’t have to be strong and courageous. There is no one there to console you, support you as you lay there willing to make a deal with the devil for the slightest glimmer of hope, the slightest bit of clarity, or slightest bit of peace.

As a the carepartner to a loved one who is sick or disabled, many wouldn’t second guess charging head first through a thousand wielded swords if it meant a hope or a cure.

As an advocate, the majority of the work you do is self-created, self-supported, and unpaid. A calling. An undeniable, magnetic force that pulls you in because you cannot turn a blind eye no matter how hard you try. Because you cannot bear witness to human suffering and not do anything. Because you’ve been there and you can relate to another’s pain, grief, and sense of hopelessness and it is unacceptable to not help ease the heaviness of another’s burden.

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In Defense of Epic. No, Really!

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Today THCB is delighted to feature an excerpt from Robert Wachter’s much-talked about new book “The Digital Doctor: Hope, Hype and Harm at the Dawn of Medicine’s Computer Age (McGraw Hill, 2015). If you enjoy this piece, be sure have a look at the director’s cut interviews Wachter did for the book with Atul Gawande: “Computers Replacing Doctors“,  and John Halamka: “Black Turtlenecks, Data Fiends & Code.” — John Irvine

That Epic would find itself labeled a monopoly is in itself an extraordinary turn of events. In 2000, after 21 years in business, the company had only 400 employees and 73 clients, and did not appear on a list of the top 20 hospital  EHR vendors. Its big break came in 2003, when the 8 million–member Kaiser Permanente system selected Epic over two far better known competitors, IBM and Cerner. The cost to build Kaiser’s electronic health record: $4 billion.

Today, Epic has 8,100 employees, 315 clients, and yearly revenues of approximately $2 billion. The system is now deployed in 9 of the US News & World Report’s “Top 10” hospitals. In 2014, the company estimated that 173 million people (54 percent of the U.S. population) had at least some medical information in an Epic electronic record.

Epic Founder and CEO Judy Faulkner’s vision, built on several central tenets, has been vindicated many times over. The first principle was that the winning EHR vendor would be the one that solved the most problems for its customers.

While Apple’s App Store has made a modular environment seem feasible and even desirable, most healthcare decision makers want a single product that does everything they need right out of the box (physician notes, nursing notes, drug ordering and dispensing, billing, compliance, and population health) and does those things everywhere, from the newborn nursery to the urology clinic to the ICU.

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The Story Behind the CommonWell Story

Arguably, the biggest news story coming out of HIMSS last month was the announcement of the CommonWell Health Alliance – a vendor-led initiative to enable query-based, clinical data sharing. So much has been written about CommonWell that there is little need to rehash what has been said before.

What has not been said, or at least has been sensationalized nearly to the point of irrelevance is the whole controversy surrounding Epic and how they were not invited to join the CommonWell Alliance until after the announcement. None other than Epic’s own founder and CEO, Judy Faulkner, has gone on record stating the Epic was unaware of CommonWell prior to the announcement. Faulkner has gone on to question the motives of CommonWell, in an effort to subvert it, in her highly influential role on the Dept of Health & Human Services HIT workgroup committee.

That was the last straw.

It is one thing to moan and groan at the HIT love fest that is HIMSS, where vendors commonly discount the announcements of competitors. But it is quite another thing to be a part of a highly influential body that is defining nationwide HIT policy and make the same claims over again, especially when they are frankly not true.

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