Apple to Participate in Meeting Advocating for Better Patient Access to Health Info

[MacRumors]

Representatives for Apple and Microsoft will be participating in a meeting with the Carin Alliance that's focused on making it easier for patients to access and share their medical information, reports CNBC.

The meeting will focus on efforts to push a rule change proposed by the Department of Health and Human Services that would promote medical data interoperability.

Ricky Bloomfield, a member of Apple's health team who formerly served as Duke University's Director of Mobile Strategy, will participate in the meeting by phone, according to a list of attendees published today [PDF].

Those who are in support of the change want to modernize patient access to data, as it continues to be common for medical facilities to provide health records via CD or Fax, which makes it difficult for people to switch providers and healthcare systems. From a PDF describing talking points for the meeting:

It's imperative to note how important and time sensitive aggregated health information across multiple provider and health plan systems can be for patients going through catastrophic events. This information is essential for patients as they consider options such as treatment planning, consenting to surgical procedures, exploring and enrolling in clinical trials, and matters of continuity of care, examples including expediting an urgent second opinion, appealing insurance denials for standard of care treatments prescribed by patient's board-certified physicians, as well as having all pertinent information when it comes to advance care planning, palliative care, and matters of end of life. Data access is a matter of patient safety, better outcomes, improved costs, and often life or death.

Apple has been working to make health data more accessible for patients with its Health Records feature that is designed to allow iOS users to access their medical records from participating hospitals and medical providers. Apple has partnered with hundreds of providers in the United States, allowing iPhone users to sync their medical data to the iOS Health app.

Article Link: Apple to Participate in Meeting Advocating for Better Patient Access to Health Info

 

[thefourthpope]

Done safely, this would be a complete positive for patients and many providers. Transferring health data between providers is challenging — with some good reason, given the sensitive information involved — but can absolutely be improved.

 

[Doctor Q]

A tip from Apple:

Set up your Medical ID in the Health app on your iPhone​

This is information you want to have available to medical workers in an emergency.

One of the fields is Blood Type, but don't worry if you don't know your blood type. You'll almost surely be tested before getting a transfusion anyway. But you could ask what blood type you are the next time you get a blood test, and fill it in later.

 

[JosephAW]

I'm assuming if you put all your medical records on your iPhone that you can opt out syncing it to the iCloud since Apple revealed that they will not encrypt your data on the cloud but will provide it to requesting law enforcement.
Next step will be for employers or insurance companies is to force Apple to release medical data stored on a person's icloud account in order to decline employment or insurance due to medical data on their iPhone devices.
Some employers required social media access of their accounts before employment.

 

[Mr. Wonderful]

The proposed rules basically opens up your medical records to be shared indefinitely. This isn't a move to "improve sharing" or "empower patients". It's a move to force health care providers to provide Silicon Valley and any company that just so happens to make an app access to your patient data so that they can profit off it or face massive fines.

 

[JohnStrass]

....
Next step will be for employers or insurance companies is to force Apple to release medical data stored on a person's icloud account in order to decline employment or insurance due to medical data on their iPhone devices.
Some employers required social media access of their accounts before employment.

Its called 23 and me. People are giving their dna Even if YOU have mot given your dna to be sequenced, a few of your relatives have ...
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HIPAA mandadet ” interoperability” of reconrd. The industry did mot like that so they defined it as the ability to export a pdf.

 

[Swift]

With iCloud, people seem to forget that your iPhone backup can be encrypted if you back up to the Mac. And iCloud is quite safe, as long has you give it a randomized password. Not the four character passcode. No, the backup isn’t encrypted, but they have to balance that because most people would be much more likely to scream if they lose their pictures than if they’re not secure. They haven’t budged vis à vis the threat of à State that spies on you.

 

[cashville2400]

I am not trusting Apple with ANY medical records! Pics, okay, yeah. I have been married longer than digital cock pics have been a thing so I am good, but I am not sharing too much medical info with Apple. To each their own though.

 

[iGeneo]

I'm assuming if you put all your medical records on your iPhone that you can opt out syncing it to the iCloud since Apple revealed that they will not encrypt your data on the cloud but will provide it to requesting law enforcement.
Next step will be for employers or insurance companies is to force Apple to release medical data stored on a person's icloud account in order to decline employment or insurance due to medical data on their iPhone devices.
Some employers required social media access of their accounts before employment.

Health data is encrypted on the device, Apple has zero access to it, and any encryption key that they have would not access it

 

[nEtEnEmy]

Epic Systems Advises Hospital Execs Against Interoperability Rule
Judy Faulkner believes the proposed rule will result in app makers gaining access to patient data without consent.

Epic Systems Advises Hospital Execs Against Interoperability Rule

Judy Faulkner believes the ONCs proposed rule will result in app makers gaining access to patient data without consent.

ehrintelligence.com

 

[martyjmclean]

The implementation of MyHealthRecord is flawed, but the concept is brilliant. Every country should develop something like it, just better.

 

[1345873]

Done safely, this would be a complete positive for patients and many providers. Transferring health data between providers is challenging — with some good reason, given the sensitive information involved — but can absolutely be improved.

Then the question is how, if you're dealing with a secretive non-transparant firm as Apple.

Besides technical safety there are some domains that needs to be adressed:
1. doctor / patient privilege (this information does not go anywhere else)
2. transparancy (where/what did go right/wrong, who needs a compliment/is to blame)
3. portability (need to transfer (my) data to competitive system)
4. ownership (where is my data, who does it manage)
5. accountability (who can I sue?)

These are not challenges for Apple, just read their privacy agreement. There's no urgency to publish leaks of any sort but a tendency to hide and repair. Apple is a secretive, non-transparant firm (which makes great hardware btw) which has no place (besides the hardware) in de medical world. (as are the likes -google, amazon, aso)

Trust, truth and accountability are the main drivers in the medical world. Not solely profit, profit and profit.

 

[newyorksole]

I am not trusting Apple with ANY medical records! Pics, okay, yeah. I have been married longer than digital cock pics have been a thing so I am good, but I am not sharing too much medical info with Apple. To each their own though.

Just a question, why not? Is there something specific you’re trying to hide? Or is it just the principle of not over sharing with tech companies?

I just don’t see a need for concern considering Apple’s track record. And if there was a compromise of data, what would that do to you?

Idk. Just curious Lol.

 

[Glockworkorange]

Healthcare is a mess. I would love for Apple to be able to help straighten it out, but I would be truly surprised if they can do that.

 

[1345873]

Just a question, why not? Is there something specific you’re trying to hide? Or is it just the principle of not over sharing with tech companies?

I just don’t see a need for concern considering Apple’s track record. And if there was a compromise of data, what would that do to you?

Idk. Just curious Lol.

Because there is no place needed for Apple to be inbetween the patient (you) and your physician? Because not everything needs to be listened in (remember HomePod?) and yes there needs to be privileges without a third party present. Medical data needs to be independent, there's allready too much industry busy manipulating patient treatment / results, no need for more. Do you trust Apple with your data, apply for a job, get rejected. The wondering why should not cross any suspicion of Apple having looked in your medical file.

So in short should Apple have the my data? For storage perhaps, but not for analyzing any of it, this is privilege to my and my physician and should never be subject to Apples (or other) changing privacy agreement. Apple (and others) allways tried to lock you in without the option for transporting your data to competitors.

No one wants to hear about your recent STD's but if they do, you know why this should have been only your private part/information.
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Healthcare is a mess. I would love for Apple to be able to help straighten it out, but I would be truly surprised if they can do that.

Healthcare is cautious, conservative, transparent, not wanting to harm you..

 

[dogslobber]

Just, no. The last thing we need is some tech or ad company misusing private medical data which should not be used by anybody for any reason other than medical only. Any company that says anything about protecting privacy blah de blah are liars and will screw everybody over. This is one data breach waiting to mess the world up yet again. Keep parasites like Apple, Google, FB, et al, away.
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Done safely, [...]

You can't do it safely. Any company that says otherwise are lying to you as there's another data breach to be had. I'd say until Apple is financially liable for each medical leak to say $1m per record then just no. If a company will not put up such a guarantee then their 'safety' is a joke.

 

[Glockworkorange]

Just, no. The last thing we need is some tech or ad company misusing private medical data which should not be used by anybody for any reason other than medical only. Any company that says anything about protecting privacy blah de blah are liars and will screw everybody over. This is one data breach waiting to mess the world up yet again. Keep parasites like Apple, Google, FB, et al, away.
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You can't do it safely. Any company that says otherwise are lying to you as there's another data breach to be had. I'd say until Apple is financially liable for each medical leak to say $1m per record then just no. If a company will not put up such a guarantee then their 'safety' is a joke.

I'm fine with it---medical records are an absolute mess.

Anything to uniformly silo them digitally would be appreciated with appropriate privacy protection.

Why do you feel your records and sufficiently protected right now? Just a year or so ago and entire hospital was shut down by ransomware and I think they were using Windows XP!

I know it's not the same thing and I know that it's not every provider; however, the point is many provider records keeping is antiquated and open to hijinks.

I'm sure there would be granular controls with the ability for folks like you to opt out if uncomfortable.
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Because there is no place needed for Apple to be inbetween the patient (you) and your physician? Because not everything needs to be listened in (remember HomePod?) and yes there needs to be privileges without a third party present. Medical data needs to be independent, there's allready too much industry busy manipulating patient treatment / results, no need for more. Do you trust Apple with your data, apply for a job, get rejected. The wondering why should not cross any suspicion of Apple having looked in your medical file.

So in short should Apple have the my data? For storage perhaps, but not for analyzing any of it, this is privilege to my and my physician and should never be subject to Apples (or other) changing privacy agreement. Apple (and others) allways tried to lock you in without the option for transporting your data to competitors.

No one wants to hear about your recent STD's but if they do, you know why this should have been only your private part/information.
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Healthcare is cautious, conservative, transparent, not wanting to harm you..

"So in short should Apple have the my data? For storage perhaps, but not for analyzing any of it, this is privilege to my and my physician and should never be subject to Apples (or other) changing privacy agreement. Apple (and others) allways tried to lock you in without the option for transporting your data to competitors."

I don't think there would be anything forcing you to do anything--I'm sure there will be opt out provisions.

As far as Healthcare being conservative, cautious, whatever....I disagree.

I am an attorney and spend a lot of time issuing subpoenas for records, dealing with providers and reviewing records. In my experience, health care records are an absolute mess. The idea there is some pristine, caring, conservative and protective system in place for your records or your treatment and care is a fantasy. Instead, there is widespread incompetence, laziness, greed and a whole host of issues.

 

[Marzzz]

It absolutely amazes me that the sources for "improving" medical care are always politicians, healthcare conglomerates and large software/tech firms. It's never doctors and nurses. btw- EPIC is "Skynet"

 

[happygodavid]

Geez, people, take off your tinfoil hats.

As someone who has been bouncing between 15 different doctors over the past couple of months, having countless tests done for various issues, I will WELCOME an integrated, platform-agnostic database/piece of technology that shows every doctor, nurse, and yes, insurance person who needs said info, all the pertinent information related to my medical history. I am sick (no pun intended) of having to set up accounts and download apps for every hospital, imaging service, doctor's office, and clinic. They're all trying to make it easier by creating their own app, but keeping track of everything that's been done is a logistical nightmare, not to mention inefficient when it comes to relaying data between medical entities. In short, there's no centralized database they can all share. It's like passing an amendment to the Constitution for these institutions and people to have quick access to all my medical history... If tech companies can come up with a way to make all of the above easier, I'm on board 100%. And yes, it will be secure. The paranoia over stolen personal data will likely ensure privacy and security remain a top priority.

Okay fine, keep your tinfoil hats on.

 

[Marzzz]

I will WELCOME an integrated, platform-agnostic database/piece of technology that shows every doctor, nurse, and yes, insurance person who needs said info, all the pertinent information related to my medical history.

Actually, that's the problem right there. Instead of each healthcare "entity" having their own system in mass multiples, any software solution should be patient-based. Back in the day if you went to the hospital, there would be one chart for you, and anyone involved in your care (MDs, RNs, etc) would make entries into it- you wouldn't have a separate chart for each physician/nurse/etc.

There needs to be a system that is patient-centric, and then any treating entity would have to (securely?) sign in and make entries as needed. Unfortunately, the only thing I can see that would be able to manage such a system is either the government, or a large enough 3rd party. Pick your poison...

 

[Digital Dude]

A tip from Apple:

Set up your Medical ID in the Health app on your iPhone​

This is information you want to have available to medical workers in an emergency.

One of the fields is Blood Type, but don't worry if you don't know your blood type. You'll almost surely be tested before getting a transfusion anyway. But you could ask what blood type you are the next time you get a blood test, and fill it in later.

1. To make your Medical ID available from the Lock screen on your iPhone, turn on Show When Locked. In an emergency, this gives information to people who want to help.
2. 
   

3. A tip from Apple:
   
   

   Set up your Medical ID in the Health app on your iPhon​

   
   This is information you want to have available to medical workers in an emergency.
   
   One of the fields is Blood Type, but don't worry if you don't know your blood type. You'll almost surely be tested before getting a transfusion anyway. But you could ask what blood type you are the next time you get a blood test, and fill it in later.

   I must be missing something because I followed the directions as written on the Apple support page but I can't find how do you select... MEDICAL I.D. 'Show When Locked'

 

[dogslobber]

I'm fine with it---medical records are an absolute mess.

Anything to uniformly silo them digitally would be appreciated with appropriate privacy protection.

Why do you feel your records and sufficiently protected right now? Just a year or so ago and entire hospital was shut down by ransomware and I think they were using Windows XP!

I know it's not the same thing and I know that it's not every provider; however, the point is many provider records keeping is antiquated and open to hijinks.

I'm sure there would be granular controls with the ability for folks like you to opt out if uncomfortable.

I don't know whether my records are or are not protected at the hospital right now. What I do know is that letting tech and ad companies near medical records will totally make them NOT protected. If you trust tech and ad companies then that's your problem to deal with. I know that tech and ad companies are not competent enough to ever be able to offer any type of protections. As I said previously, let them indemnify themselves to $1m per record per leak then we can talk about it until then. Until then keep these parasites away, and no opt-out is not the way to do it. Let people who don't value their privacy opt-in to any non-indemnified scheme.

 

[incoherent_1]

Everyone should have the *option* of transferring all medical data in a standardized format to a device of their choice.

 

[zinacef]

1. To make your Medical ID available from the Lock screen on your iPhone, turn on Show When Locked. In an emergency, this gives information to people who want to help.
2. 
   
3. 
   I must be missing something because I followed the directions as written on the Apple support page but I can't find how do you select... MEDICAL I.D. 'Show When Locked'

After you click on Edit (#4 in the instructions), you'll see a screen that offers you the toggle of Show When Locked....

 

[Glockworkorange]

I don't know whether my records are or are not protected at the hospital right now. What I do know is that letting tech and ad companies near medical records will totally make them NOT protected. If you trust tech and ad companies then that's your problem to deal with. I know that tech and ad companies are not competent enough to ever be able to offer any type of protections. As I said previously, let them indemnify themselves to $1m per record per leak then we can talk about it until then. Until then keep these parasites away, and no opt-out is not the way to do it. Let people who don't value their privacy opt-in to any non-indemnified scheme.

Oh, the lawsuits that would happen for unauthorized release of records would be stellar. Big bucks.