Epic Systems and some 60 hospital chains oppose medical data sharing rules supported by Apple and others

About 60 health systems are siding with Epic CEO Judy Faulkner, who is urging hospitals and clinics to take a stand against the Department of Health and Human Services rules designed to make it easier to share medical records data with patients and apps. Technology companies like Apple, Alphabet and Microsoft have taken the opposite stance and support rules to modernize medical data sharing.

Christina Farr for CNBC:

medical data sharing: Judith Faulkner, CEO of healthcare IT giant Epic Systems. (Source: Epic Systems)
Judith Faulkner, CEO of healthcare IT giant Epic Systems. (Source: Epic Systems)
Epic Systems CEO Judy Faulkner recently urged some of the largest health systems in the country to sign a letter opposing proposed rules designed to make it easier for patients to obtain their medical information and share it with apps…

The letter, which was obtained by CNBC, was addressed to Department of Health and Human Services Secretary Alex Azar and opposed proposed rules designed to help medical information flow more easily between health systems and patients. The rules also aim to make clinical data accessible through application programming interfaces (APIs).

Epic, which is privately held, sells its electronic medical record software to hospitals across the country and is one of the largest health-technology companies in the U.S. An Epic installation is a major undertaking and can cost upwards of $1 billion for a major health system to implement…

A spokesperson for HHS told CNBC that it did indeed receive the letter. “We appreciate all stakeholder feedback as we continue to finalize the rules,” they said. “Our ultimate goal is to ensure that patients are able to easily access their electronic medical records.”

MacDailyNews Take: If the Department of Health and Human Services wants to achieve their ultimate goal, they will ignore Epic Systems which seems to see a threat to its very (overly) profitable business model from an actual system that allows patients and providers to securely obtain and share medical records; a major, and costly problem (in both money and lives), among many, that exists in healthcare today. Right now, in 2020, it’s still common for health systems to only make health data available via a CD-ROM or fax! Some patients are denied access altogether. It’s ridiculous. Some companies, like Apple, want to fix this problem. Other companies want the status quo to remain and the big profits that come along with it.

It’s past time for this mess to be modernized, as long as Apple-level standards on privacy and security can be achieved since this is obviously sensitive data and maintaining privacy is of the utmost concern.

One of the biggest issues in healthcare in the U.S. today is that there is no “Quartberback” – someone running the effort, coordinating the various specialists, making sure everyone is on the same page with the treatment plan(s), drug interactions, allergies, etc. A “playbook” showing the full picture of the patient’s health data would be very useful – and let the disparate medical personnel each quarterback on their own. Hopefully, Apple can step in, build, and fulfill this need with the company’s vaunted security and privacy.MacDailyNews, August 22, 2016

17 Comments

  1. In this day it is asinine that every time I see a new doctor or medical facility I have to spend 15 – 20 minutes (sometimes more) filling out multiple forms about my medical history. Every doctor and medical facility — with the appropriate access and authority granted by me — should have access to my full medical history. All doctors and medical facilitys should have access to a shared data set.

    Yes, the privacy features and security on such an extensive data base would have to be extreme, and your files would have to include a verifiable log of every person and organization that viewed or touched your files. Insurance companies would NOT have direct access to all of it — just limited sets for procedure verification purposes and only under the tightest authority by me.

    It can be done. It just won’t be a trivial task.

    Any company that is against this concept is just trying to protect their proprietary turf. Period.

    1. I see this from both sides: I am a patient in a practice that uses Epic, and my wife is a medical provider in the practice as well. These days she is more of a data entry clerk than medical provider. She is perpetually behind in her documentation and in danger of losing pay over the issue because she believes her work is to care for the patients she sees not to meet some asinine documentation requirement to qualify for medicare payment.

      In the old days, she could dictate a quick note that would be transcribed and added to the patient’s record, fill out a quick billing form, and move on. Now every visit must have all the boxes checked again for the record to be considered complete, even if the old issue was resolved two years ago.

      In short, programmers are making medical decisions rather than your provider.

      1. WRONG! Its Health software systems such as Epic that is the problem, NOT the solution! I still cannot get any medical records from our largest healthcare provider BJC in the St. Louis area due to their use of Epic! However, I can get medical records from other healthcare providers such as Mercy and others who either don’t use Epic or have their medical records in both Epic and another system that will share to Apple’s Health system. I am really thinking about BOYCOTTING any healthcare provider that DOES NOT provide my records to Apple’s Health system. I think EVERYONE should do the same!

      2. Programmers are not making decisions in health records, but insurance companies and data silo companies are making money off of the patient. This is an epic stall (pun was intended, sadly) on the part of EPIC but the ability for me to see, download an analyze my bloodwork for the last 8 years is fantastic and I can demonstrate to my lates doctor what has worked for my T2D and he doesn’t have to pretend to read the last visit record in the 9.73 minute mean face time interaction with me. HIPPA is about data portability not just privacy—if a patent’s data is so private that the patient can’t see it it isn’t privacy it is censorship.

      3. Healthcare orgs are critically dependent on Medicare and Medicaid dollars to survive. The EMR vendors have no choice but to design and implement software that meets Federally-mandated requirements in order for their customers to receive payment for services. Focus your dissatisfaction on the people in the District of Columbia, the people responsible for the problem.

  2. Who is Judy Faulkner? Chances are, you don’t know her — but her politically connected, taxpayer-subsidized electronic medical records company may very well know you. Top Obama donor and billionaire Faulkner is founder and CEO of Epic Systems, which will soon store almost half of all Americans’ health information.

    If the crony odor and the potential for abuse that this “epic” arrangement poses don’t chill your bones, you ain’t paying attention.

    As I first noted last year before the IRS witch hunts and DOJ journalist snooping scandals broke out, Obama’s federal electronic medical records (EMR) mandate is government malpractice at work. The stimulus law provided a whopping $19 billion in “incentives” (read: subsidies) to force hospitals and medical professionals into converting from paper to electronic record-keeping systems. Penalties kick in next year for any provider who fails to comply with the one-size-fits-all edict.

    Obamacare bureaucrats claimed the government’s EMR mandate would save money and modernize health care. As of December 2012, $4 billion had already gone out to 82,535 professionals and 1,474 hospitals; a total of $6 billion will be doled out by 2016. What have taxpayers and health care consumers received in return from this boondoggle? After hyping the alleged benefits for nearly a decade, the RAND Corporation finally admitted in January that its cost-savings predictions of $81 billion a year — used repeatedly to support the Obama EMR mandate — were, um, grossly overstated.

    Among many factors, the researchers blamed “lack of interoperability” of records systems for the failure to bring down costs. And that is a funny thing, because it brings us right back to Faulkner and her well-connected company. You see, Epic Systems — the dominant EMR giant in America — is notorious for its lack of interoperability. Faulkner’s closed-end system represents antiquated, hard drive-dependent software firms that refuse to share data with doctors and hospitals using alternative platforms. Health IT analyst John Moore of Chilmark Research, echoing many industry observers, wrote in April that Epic “will ultimately hinder health care organizations’ ability to rapidly innovate.”

    Question: If these subsidized data-sharing systems aren’t built to share data to improve health outcomes, why exactly are we subsidizing them? And what exactly are companies like Faulkner’s doing with this enhanced power to consolidate and control Americans’ private health information? It’s a recipe for exactly the kind of abuse that’s at the heart of the IRS and DOJ scandals.

    As I reported previously, a little-noticed HHS Inspector General’s report issued last fall exposed how no one is actually verifying whether the transition from paper to electronic is improving patient outcomes and health services. No one is actually guarding against GIGO (garbage in, garbage out). No one is checking whether recipients of the EMR incentives are receiving money redundantly (e.g., raking in payments when they’ve already converted to electronic records). And no one is actually protecting private data from fraud, theft or exploitation.

    But while health IT experts and concerned citizens balk, money talks. Epic employees donated nearly $1 million to political parties and candidates between 1995 and 2012 — 82 percent of it to Democrats. The company’s top 10 PAC recipients are all Democratic or left-wing outfits, from the Democratic Congressional Campaign Committee (nearly $230,000) to the DNC Services Corporation (nearly $175,000) and the America’s Families First Action Fund Democratic super-PAC ($150,000). The New York Times reported in February that Epic and other large firms spent hundreds of thousands of dollars lobbying for the Obama EMR “giveaway.”

    Brandon Glenn of Medical Economics observes “it’s not a coincidence” that Epic’s sales “have been skyrocketing in recent years, up to $1.2 billion in 2011, double what they were four years prior.”

    It’s also no coincidence, as a famous Democratic presidential candidate once railed, that the deepest-pocketed donors “are often granted the greatest access, and access is power in Washington.” That same candidate, Barack Obama, named billionaire Democratic donor Faulkner as the only industry representative on the federal panel overseeing the $19 billion EMR “incentives” program from which her company benefits grandly.
    Townhall, Michelle Malkin, May 22, 2013

  3. The Department of Health and Human Services, is that organization from the same government of the same country that gave us the FBI? The same FBI that gave us 17 errors and omissions in order to conduct surveillance on a presidential campaign worker thanks to a secret FISA court warrant issued under false pretenses? If HHS wants to list an outliine for medical sharing by private companies, fine, but otherwise, HHS must not have any further involvement where partisan government misfits have ANYTHING to do with medical records, access to and transmission of, that they can abuse! The career bureaucrat is never to be trusted ever again!

  4. Let’s look at this from a tech perspective. The “database” has become the most important aspect of the Internet and technology in the past 10 years. Traditionally the corporations own your data. For example, Google owns your browsing data and Amazon owns your purchasing data. All of this information is stored on servers which they own . . . Contrast that with the blockchain concept that one sees with Bitcoin. Blockchain has a distributed ledger in which your data is shared across the network, and verified by multiple computers. It is not stored on a single server . . . If you are Epic Systems, a blockchain model of data storage is an existential threat to your existence. Currently, Epic has a monopoly on health data, and a monopoly on hospitals . . . as blockchain and other new tech models arise, we are going to see monopolists like Epic use their financial resources and political connections to stop any change.

  5. Thank you, MDN, for keeping the discussion on topic. The issue is whether patients should control their own medical data or let some faceless government or corporate beancounter control it.

    1. Funny enough, in this case you have the “faceless government” bureaucrats trying to give YOU more control over your own records over the opposition of “corporate beancounters.”

  6. As a person who recently benefited from the ability of one hospital system to access my records from another hospital system, both happen to be running Epic, I am incredibly grateful for the ability for this to occur. The Rand study is wrong in my case. Having the old information was extremely beneficial to the medical staff. There is no way I could give them the detail that was included in the information they were able to obtain and in the timely manner in which they obtained it. I have no idea exactly why Epic is reluctant to allow the transparency that Apple is seeking. However, from talking to hospital personnel it seems there is already programs that allow data from one system to be used by another system.

    By the way, for those of you who seem to have insecurity issues, Judith Faulkner is a well respected WOMAN and has built a very successful company producing a great product. She has grown the company organically by turning profits back into development and growth and has refused numerous times to sell the company believing it is best to be privately owned and not under pressures of stockholders.

  7. I’ve been practicing medicine for over 40 years, so I’ve gone through a lot of iterations of the electronic health record. Paper records were generally terrible. You couldn’t read them and every practitioner had their own way of documenting, which may or may not have made sense to another doctor reviewing the records. One thing electronic records have accomplished is the collection of a huge amount of data on a more systematic basis. In the past, some practitioners wrote detailed notes, while others used a lot of personal shorthand, and everything in between. One problem with the current system is every vendor has designed their own database and they don’t talk to each other. Another is the user interface, which is varies from awful to a real nightmare. What good does a neatly printed report do if you can’t read it because it’s in 6 point type? I’d love to see Apple design its own health record and price it reasonably. Talk about disrupting an industry.

  8. I had my annual CT Scan last month and recently picked up a CD with the images from the scan. Next stop was to drop it off at the local VA Clinic for downloading it into their system. Sadly they had to sed the CD to their Regional office for “security reasons” so in a week or two it will be mailed back to me. Electronic movement would have been far better.

    I do recognize that Medical Systems are going to be massive. It’s not simple building of a few databases. But there is no excuse to not have consistent approaches throughout the nation. One set of treatment codes is a simple example. Consistent codes for various medical conditions is more complicated as there are a lot of levels & combinations – but it can be done to a single standard.

    Drug modules would probably be one of the most difficult, buy national chains have been investing in those for years.

    The issue is to legally require all systems to provide access for patients. providers and other systems. That provides an environment where Apple and other companies can develop Appa for their users. In that can, there needs to be strong privacy laws so shoddy apps are rejected.

  9. My previous medical group, Sharp Healthcare sends all of my medical information to the Follow My Health App (FMH) or it’s available online . They even added historical data from 40 years ago.. I moved out of their coverage area my current provider Isn’t as complete but my current data is available in the Health4ME app and online. It is not as complete as the medical group farms out lab work to LabCorp (who have their own app and website).
    When I moved in August of 2018, there was some initial filling out forms but now they have it all online for the different locations. A bladder issue, right shoulder ACL tear, AFib problem, Doctors visits, visits to urgent care and I didn’t have to fill out any paperwork except for admission forms in the emergency room. I’ll be making an appointment with my PCP online today. On the 19th, I will be seeing my cardiologist to be cleared for surgery on my hand. Through this I will not have to fill out any forms.
    It can be done.

  10. There is a lack of interoperability between systems like Epic and Cerner, etc., but there are vendors springing up to help move this data between incompatible systems. I’m sure that brings its own set of problems, as well…

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