Health Records Firm Epic and About 60 Client Hospitals Object to Data Sharing Rules Supported by Apple

[guzhogi]

I want to make sure any system is reliable, accurate & preserves patient privacy. If they can do this, I'm all for letting patients have access & control over their medical records. I just wonder how much of the proponents/opponents are doing it just based on maximizing profits, and not for the benefit of the patients? While financial stability and some profits is good, profits shouldn't come at the expense of patient health & freedom.

 

[AlanShutko]

I want to make sure any system is reliable, accurate & preserves patient privacy.

Well, right now... Zero out of three ain't too bad?

 

[mannyvel]

EPIC is worried because once you have interoperability you have a way to easily migrate data from one system to another, which makes it easier to move away from EPIC. Anything that makes it harder to move away from EPIC isn't in EPIC's best interest, so they're obviously opposing it. That's an existential threat, because EPIC is so ingrained that getting away from it would be close-to-impossible.

In a way, they should be pushing the rule, because easy data sharing increases the barrier to entry for competitors. And EPIC is so dominant that having to do an HL7 export to fifty different mobile endpoint implementations would be a blocker for most small companies.

That said, there are costs involved in making your EMR data accessible to third-parties. Besides the obvious security issues (you have to open a hole to the internet for your EMR, patient passwords, etc), there's also a potential non-trivial IT project of figuring out what in your highly customized EPIC solution should be exported.

 

[Swift]

This has nothing to do with HIPPA. The patient can share whatever medical history of theirs they want.

Do you know how much medical data you generate? Among how many separate stovepipes? I could give consent to my physician to see every record he finds relevant. Very useful or even life-saving when you're in Emergency.
[automerge]1581013089[/automerge]

Data is a jewel in the patient data industry. And the data companies don't want to share the wealth. Not for free, that is. Most large hospital systems (including the ones using EPIC, the largest company, I believe) have a means of giving the patient a data package in PDF format. This sounds like economic resistance to me.

Interoperability is always resisted by monopolists.

 

[Elyzien]

Epic is just protecting their income stream.

 

[IIGS User]

Epic! Sit down! Shut up!! Nobody likes you!

I disagree.

I'm both a heart disease patient and transplant listee with a provider using EPIC as their software. I have their app on my phone, and my Apple watch. I am very pleased with the user interface, availability of test results, ability to track changes in results, and manage my appointments and procedures. Most of my communication with my doctors is though the app or online portal offered by the provider (one of the best hospitals in Philadelphia are, where I live). Renewing my prescriptions is easy, and transmitted to my pharmacy electronically. I'm very happy with the service provided.

I recently noticed a blurb in my provider's portal about accessing records from other providers electronically, but nothing has gone "live" yet. I admittedly use one provider for all my testing and procedures. Not only because of the absolute trust I have in my provider (I've been in so many hospitals in the Philly area the past year, I could write a Zagat guide of them) but also due to my transplant listing (liver). Having all my records in one place, in the format my provider expects is important. To the point where when I get my MELD labs updated, I know the score by the end of the day.

As a patient, I'm very pleased with the software, it's interface, and how it communicates with my mobile devices....

 

[eawmp1]

As a physician and a transplant patient the medical record should belong to the patient. My information should not be owned piecemeal by the various places where I’ve sought out medical

Providers and facilities should (with patient approval) be able to view and add information to the global record.

As to the person above who lives his experience with Epic, it is moot if he is out of his service area or has an acute illness and is transported to the nearest hospital (even if out of network). There are hundreds of EMRs and few talk to each other.

I image a world where, after breaking a leg at the Great Wall and receiving care, 2 days later at home your local orthopedist, with permission, can review the treatment (automatically translated if necessary), view the X-ray, and modify or continue the treatment plan immediately. Throw in AI to ensure appropriate treatment, referral to in network rehab, and medication side effect and interaction monitoring.

The medical and financial benefits would be astounding.

 

[AlanShutko]

That would be wonderful! Right now, I question why my doctors bother to keep medical records, considering there is no practical way for me to get ahold of them from one provider and take them to another. (In theory, I could request them in writing, possibly pay some fees, and hopefully get them in 60 days or so. In practice, every time I go to a new provider I have to give them my entire medical history from scratch.) I can only conclude that they may be useful in a lawsuit, but not for my health care.

 

[bbednarz]

As a physician and a transplant patient the medical record should belong to the patient. My information should not be owned piecemeal by the various places where I’ve sought out medical

Providers and facilities should (with patient approval) be able to view and add information to the global record.

As to the person above who lives his experience with Epic, it is moot if he is out of his service area or has an acute illness and is transported to the nearest hospital (even if out of network). There are hundreds of EMRs and few talk to each other.

I image a world where, after breaking a leg at the Great Wall and receiving care, 2 days later at home your local orthopedist, with permission, can review the treatment (automatically translated if necessary), view the X-ray, and modify or continue the treatment plan immediately. Throw in AI to ensure appropriate treatment, referral to in network rehab, and medication side effect and interaction monitoring.

The medical and financial benefits would be astounding.

The implementation of a system like this would be so insane though. I love your idea, but implementing that sounds like the hardest task that has ever been undertaken since the moon landing.

 

[V_Man]

deletef
[automerge]1581026777[/automerge]

As someone who has dealt with Epic on several levels... they are only interested in their own profits. After all, they and Cerner pushed meaningful use 1 and 2 through the government which was basically a public subsidy of their platforms. And, yes, it will take >$1B to implement Epic on a large scale hospital system. Plus a great deal more after the sale as you are required to pay maintenance.

As another said, Epic is all about locking people into their system. They actively encourage facilities to throw out any Vendor that isn’t a secret partner.

Before others say that Cerner is behind FHIR and both do HL7... Those standards are really suggestions and no two facilities implement them the same way and there’s a great deal of confusion and disagreement on even where to put certain info.

Kinda sounds like Apples business plan lol

 

[dsut4392]

As someone who has managed the implementation of a large EMR system, I can see why the likes of Epic are resisting this. The difficulties of data migration are a massive part of the cost and risk associated with moving between different EMR systems. In our case the cost of data migration (20 years of data from a legacy system without a proper data dictionary) was over 5% of the total 5-year cost of our product - just on the vendor side, excluding resources on our side. Any framework that makes it easier for patients to extract structured data would be even more valuable at the back end, and would have an enormous impact on vendor lock in.

 

[Ronlap]

Data is a jewel in the patient data industry. And the data companies don't want to share the wealth. Not for free, that is. Most large hospital systems (including the ones using EPIC, the largest company, I believe) have a means of giving the patient a data package in PDF format. This sounds like economic resistance to me.

I use 3 medical networks all of which are on EPIC and somehow Apple health manages to link to them and share data.

 

[unplugme71]

As a user of the various systems I can say that sharing data is a good thing. I fear data breaches, but I have a greater fear what these companies are doing. They will not allow data to be shared as it makes it easier for doctors to move to other systems. I recently tried to move systems (I use Practice Fusion) and it was close to impossible for me to do so.

I’d give up some privacy if companies can make better medicine.

 

[Winni]

This is where Apple could do well to lobby. They don't have any other choice.

It's actually a good thing when a tech giant like Apple does not easily gets its way.

I can only recommend this book to everybody:

THE AGE OF SURVEILLANCE CAPITALISM

SHOSHANA ZUBOFF

 

[jtwurth]

For crying out loud...This screams against all things HIPPA stood for!
Especially when data breaches are still common place.
Its no wonder these companies resist.

No, not really. The Health Insurance Portability and Accountability Act give you control over access to your medical records, the ability to insure it is correct, and know who has seen it. Your information can still be shared under specific guidelines which includes you giving your consent to sharing it.

And not to be pedantic but the acronym is HIPAA.

 

[marvin_h]

What are you talking about? It doesn’t sound like you read the article at all, it has nothing to do with your conspiracy theory.

Sounds like the OP is noting that better more transparent accessible healthcare records tend to produce better healthcare outcomes, whether Via preventions or cures.....which undermines medical industry profits. Sick people are more profitable than healthy people.

 

[AlanShutko]

I use 3 medical networks all of which are on EPIC and somehow Apple health manages to link to them and share data.

Sure. Means each health system paid Epic for the work.

 

[PickUrPoison]

Sounds like the OP is noting that better more transparent accessible healthcare records tend to produce better healthcare outcomes, whether Via preventions or cures.....which undermines medical industry profits. Sick people are more profitable than healthy people.

What? Did you read the OP?

What does Epic wanting to protect their over-priced, poorly performing EMR product have to do with early detection of illness? OP implied “the medical industry” would rather let more easily treatable issues evolve into bigger problems later, just to make money off surgeries and drugs.

Keeping people alive into their 80s and 90s gives big healthcare all the revenue the system can possibly fork over. It’s not necessary to conspire to make patients sicker in order to jack up revenue.

None of the biggest healthcare providers joined Epic in their objection to more transparent, accessible healthcare records. The healthcare providers that treat the vast majority of Americans disagree with Epic and welcome the proposed changes.

How does that support OP’s contention that “the medical industry” isn’t interested in early detection? Epic is looking out for Epic. That’s it, nothing more. No conspiracy to push needless medication or surgeries 🙄

 

[checksandbalances]

I'm not a fan of data blocking, but also not a fan of companies that invade our privacy. Silicon Valley playing the white night is more than disingenuous. Apple is the least open company - consider what they would say if they were required, say, to provide an API to iMessage. They have their own screws so you can't open their products and won't sell parts at a fair price to repair shops.

Health records firm Epic Systems and some 60 client hospitals are objecting to a proposed U.S. government policy that would make it easier for patients to share medical records data with apps, an initiative supported by Apple and other tech companies (via CNBC).

Proposed by the Department of Health and Human Services (HHS) in 2019, the modified data sharing rules would allow patients to share private clinical data from their healthcare providers and make it more accessible to health apps via APIs.

Currently, patients often have difficulty trying to obtain their information, with clinical data stored on physical media and processed through medical record software marketed to hospitals by the likes of Epic. According to one report, an Epic installation can cost upwards of $1 billion for a major health system to implement.

Yet in a letter to the HHS Secretary Alex Azar, Epic and signatories argue that the pending initiative on interoperability will be "overly burdensome on our health system and will endanger patient privacy."

Instead, Epic's letter recommends changes to the proposed rules, including extra clarity around health information related to family members and a longer timeline for the "development of new technology required by the rule," up from 1 year to 3 years.
A spokesperson for HHS told CNBC that it had received 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."

Some health IT experts told the news outlet that the letter has not been signed by some of the largest health systems in the Epic ecosystem, and called their absence "significant."
Apple, Microsoft and Google recently joined a call with non-profit Carin Alliance to discuss ways to get the rule finalized. As noted by CNBC, the tech firms favor the rules, partly because greater interoperability between systems that store medical records could help them move into the $3.5 trillion health care sector.

Apple has progressively worked to break into the health industry in recent years. At the beginning of 2018, the company launched a Health Records service to increase the portability of health records and make them available across participating hospitals and clinics. The idea was to allow patients to download their health records to iOS devices and then easily share them with other practitioners.

By August of the same year, Apple's Health Records feature allowed iOS users to access their medical records from more than 75 different hospitals and medical providers in the United States.

Article Link: Health Records Firm Epic and About 60 Client Hospitals Object to Data Sharing Rules Supported by Apple

 

[spullum]

Epic is SKYNET. It made a few people in Madison billionaires, and created havoc, confusion and dismay among hospitals across the US.

I am a physician, and I still use paper charts. My colleagues envy me, and my patients love that I pay attention to them instead of a laptop.

If medical records are to be electronic, they need to be patient-centric; practitioners/providers/etc. should then be able to use a license to securely access the patient's database. Each entity having their own system that can't interact with each other is at best a disaster, a huge waste of time and money, and a major source of "physician burnout." I have seen electronic notes go on for 18 pages, crammed with utterly useless BS. My average office visit note is two pages, legible (using Dragon Dictate Medical for Mac- thanks for dropping support for that, Nuance!), and is quite comprehensive.

Hey Apple, I would love to consult with you....

Funny, I think physicians can be digital AND pay attention to their patients. If there's garbage in the notes, digital or paper, then train folks on how to take notes. Tech. isn't the problem here. It's the tool.

My first time with EPIC/MyChart was at Duke University Hospital. Here was one place I had all of my test results, billing, and records, that I could take with me and share with others from my phone and the web. It was magical.

Yes, absolutely LEGALLY FORCE Epic to share everything with all health care providers via APIs and fight them like U.S. vs. Microsoft When/If they don't, please, but no, don't argue for paper charts. There is nothing good about paper. Faxing my hundreds of pages of records to my new doctor was fine, except they didn't or couldn't read the copies. They didn't use Epic at the time (they do now). Paper gets lost.

I just love the experience of calling a doctor's office and getting a call back... or not /s.
With MyChart, I can message my doctor anytime and they actually respond to me in a timely manner.

Yes, in 2020 all medical records need to be electronic, yes I agree with you they all need to be patient-centered, but no I don't want to see one super-database because it just makes a large target. Data-sharing across systems when needed or requested is good enough.

Nothing against you as a physician, but I wouldn't go to any new medical practitioner that didn't have a digital messaging and records system to which I had full access to my doctors and my stuff ever again.

 

[msp3]

>Health records monopoly upset at opening up the market to competition and letting patients access their own records and do with it as they see fit

Gee I wonder what they could possibility be worried about...

 

[DblHelix]

Why does it matter to them? It is not their data. The data is my body and belongs to me to be shared however I see fit.
[automerge]1581114055[/automerge]

Funny, I think physicians can be digital AND pay attention to their patients. If there's garbage in the notes, digital or paper, then train folks on how to take notes. Tech. isn't the problem here. It's the tool.

My first time with EPIC/MyChart was at Duke University Hospital. Here was one place I had all of my test results, billing, and records, that I could take with me and share with others from my phone and the web. It was magical.

Yes, absolutely LEGALLY FORCE Epic to share everything with all health care providers via APIs and fight them like U.S. vs. Microsoft When/If they don't, please, but no, don't argue for paper charts. There is nothing good about paper. Faxing my hundreds of pages of records to my new doctor was fine, except they didn't or couldn't read the copies. They didn't use Epic at the time (they do now). Paper gets lost.

I just love the experience of calling a doctor's office and getting a call back... or not /s.
With MyChart, I can message my doctor anytime and they actually respond to me in a timely manner.

Yes, in 2020 all medical records need to be electronic, yes I agree with you they all need to be patient-centered, but no I don't want to see one super-database because it just makes a large target. Data-sharing across systems when needed or requested is good enough.

Nothing against you as a physician, but I wouldn't go to any new medical practitioner that didn't have a digital messaging and records system to which I had full access to my doctors and my stuff ever again.

Same. I am with UC Davis and Stanford before now and both do it well. My results are in my apple health app within a few hours of their app. I get a notice. My doctor responds in line in the app. Specialist follows up in app. If I go somewhere new I can show or share my results instead of waiting on the red tape. They even logged in and were able to pull my health records from Stanford.

 

[AlanShutko]

Sadly, each of my doctors have their own silo online or nothing at all.

 

[drewsof07]

The implementation of a system like this would be so insane though. I love your idea, but implementing that sounds like the hardest task that has ever been undertaken since the moon landing.

HIE's are already common aggregates for a few standardized health record elements (allergies, prescriptions, medical history, and recent lab results). It's not unreasonable to think this could be applied to that level using international coding/nomenclature standards.

 

[QuarterSwede]

It actually has everything to do with HIPAA. As the law stands now, I, as a patient, will be able to request access for Some Indy Developer's App. While my protected health data is required to be stored in a HIPAA complient manner, once I give that data to the 3rd party app, that app is not covered by HIPAA laws, can store my data in a non-secure manner, or even sell it to 3rd parties.

This is the commercialization of health data, and will absolutely be taken advantage of by enterprising companies.

They’re objecting to sharing data not it being altered.