Waiting for clinical results may be a thing of the past.

[Guest]

Early research on Apple's Health Records service suggests patients generally like it

Source: https://www.cnbc.com/2019/01/13/researchers-release-the-first-data-on-apple-health-records-adoption.html

 

Quote

Researchers at the University of California San Diego Health, one of the first health systems to integrate with Apple's health service, spent a few months surveying patients about the technology, and published the results of their research on Friday in the Journal of the American Medical Association (JAMA). UCSD is among dozens of hospitals working with Apple, letting any patient with an iPhone use the health app to view their labs, charts, immunizations and more.

This means access to their own database, which is updated right from the machines used to measure to measure the data. Hospitals have live records of clinical data, mainly for use by doctors to standardise practice and conformation of practice. Patients now have access to a sample of this data collated and converted into information for their use. Very cool and useful. 

Quote

For its research, the hospital sent an anonymous online survey to 425 patients who activated the app in 2018. Of the respondents, 96 percent said they could easily connect their data, 78 percent were satisfied with the service, and 90 percent said it improved the process of sharing their personal health information with friends and family. Less than half saw an improvement across all three vectors.

The researchers also shared that by late 2018, the health system had "hundreds of personal health record users who have downloaded thousands of clinical results."

 

"We had a high response rate, with some positive responses, but these were also early adopters," Longhurst said in an interview.

Hospitals have historically had major challenges with getting patients to use electronic systems to check their medical information, because the technology tends to be poorly designedand hard to use.

Well, quite a lot of the problems tend to stem from that doctors are not quite up to speed with digital technology. Thats generally not what they study, so they need a better implementation of information. There have been numerous strides here in NZ, but Apple's Health app is a good solution for a ubiquitous approach. 

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Longhurst's team says it might be the right time for technology to make real progress, and Apple has a distinct advantage because it's devices are so popular.

Ultimately, though, Longhurst said Apple has to prove to the masses that it's product is "useful, sustainable, scalable, and actually improves health outcomes."

Information regarding standardisation of clinical outcomes ultimately improves patient outcomes. We can then know the right treatments for the patients and apply it to standard practice. Now if only there was a way to enforce standard practice. 

 

My opinion: Best thing since sliced cheese. Hopefully Android users will soon have the same access to Apple's database (One database is a lot better than two in this scenario, not an Apple vs Android thing - Apple has the edge by far when it comes to health. If we have two data sets, particularly with data from phones, this could mean duplicates if people have two phones. You might be thinking that in this regard Apple's health is taking information from the hospital database, but the health app also collects data on the Activity app, such data is also wanted - and would be centralised in Apple's Health app). If we can finally get a good data set like this, with live information feed, it will be very beneficial for research. Such a huge leap. 

 

[EDIT]

So this would also might mean that if you go in for a blood test or urinalysis etc then the results would be on the Health App asap, and you would not need to go in or ring to access. Very important and key for quality of care. 

[imreloadin]

Using an app to view HIPPA protected information...what could possibly go wrong?

[RollinLower]

as cool and innovative as this is, i think it is still kinda creepy Apple has to be involved. why not make a universal health app that anyone with a smartphone can use? the tech is obviously there.

now Apple has all your medical records! i would rather have a third party handle sensitive data like that.

[strajk-]

Why lock it down to a platform?
Why not make an open standard for something important like this?

They can still profit from it even if they do not lock it down.

 

As someone that was born as a Situs Inversus Totalis, suffering from Kartagener Syndrome that is slowly destroying my lungs, including several other diseases due to lack of oxygen in blood, it seriously pisses me off.

 

If it is really as great as survey's say, then lets hope it gets implemented in a wide range, including opening it up for other platforms, this is a godsend for people like me.

[Guest]

4 minutes ago, strajk- said:

Why lock it down to a platform?
Why not make an open standard for something important like this?

They can still profit from it even if they do not lock it down.

Health is an industry sadly, big Pharma companies make more money than Apple will ever see from this (especially in America). Apple's devices are more secure and more people have them. It's much easier for a trial to start with iOS than with Android, but it probably won't be locked down. Apple has already invested a lot in medical applications for their devices, and they are quite accurate, so it makes sense there too. Once Android phones catch up and we can get accurate enough information, then it would get support - and I'm sure it will. 

 

[ARikozuM]

45 minutes ago, imreloadin said:

Using an app to view HIPPA protected information...what could possibly go wrong?

2FA, biometrics, etc. are hitting more and more devices every year. This would also be a good opportunity to ensure that every doctor can access a patient's records without having to send out extensive paperwork. It cuts down on time spent waiting, increases security if the file access is temporary rather than permanent, allows records to be kept electronically with physical paperwork uploaded and then destroyed properly, and gives patients access to otherwise insecure and bulky paperwork. 

 

Also, my doctor has access to my Apple Health data. He sees my activity, how often I exercise, my heart-rate, sleep behavior, etc. I see this as a tool whose benefits outweighs all of the risks.

 

Hell, if the US acts on single-payer health-care, we will end up needing to consolidate all files anyways. It would certainly make things easier if you're sent to the ER and any doctor can pull your records with just a driver's license or SSN. 

[RejZoR]

What could possibly go wrong. Hint, everything. Especially in USA where insurance companies are the greediest shit I've seen to date. In my country we still have it pretty alright and you aren't denied medical bills coverage because of 700 billion denial reasons they list somewhere. If communication will be strict doctor-patient, then great. But if anyone in the middle like Apple or insurance companies would have global access to data somehow, that would be freaking awful.

[Guest]

1 minute ago, VegetableStu said:

HAHAHAHAHAHAHAHAHAHAHAHA *checks queue number* HAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHA

In modern institutes, this means once they have your information ready, you will be able to access it. Information is not data and treatment queues will not be affected.   Queues for treatment are dependent of availability of doctors, treatments and service availability (I.e. theatre rooms) in DHBs. 

[Guest]

2 minutes ago, RejZoR said:

What could possibly go wrong. Hint, everything. Especially in USA where insurance companies are the greediest shit I've seen to date. In my country we still have it pretty alright and you aren't denied medical bills coverage because of 700 billion denial reasons they list somewhere. If communication will be strict doctor-patient, then great. But if anyone in the middle like Apple or insurance companies would have global access to data somehow, that would be freaking awful.

All doctors have access to your records, that’s important. For instance if someone is investigating whether a pancreatic cancer is amenable to any therapy, they could look up in a global Apple Database to see if any patients with pancreatic cancer have seen remission. They would then be able to see what treatments or contions the patient had that allowed the remission of the pancreatic cancer and then go on to develop into a treatment. That’s how many treatments are made. Humans are so diverse, and that is why this research will be so beneficial. Patients records are not just for patients, and you can choose who sees your records as appropriate.

 

In New Zealand we also have something called ACC. This means when you have an accident, you may be liable for state insurance, effectively. Patients claims are assessed with their records to see if their claim is valid, your (the patients) previous medical history, current treatments and claim will be sent to and cross referenced to random allocated doctor, as well as scientist for specific (Such as whether a dose of radiation caused infertility, a physicist will be referenced as well as a radiational oncologist.)

 

Your medical records are very valuable to you, and research. You are important, and this data is extremely important. Without knowing it, you could be the cure for a horrible condition that you may develop. 

[Guest]

6 minutes ago, VegetableStu said:

yeah that was me being obtuse (oh god the chair waiting times ,_,)

You are very acute

[Thaldor]

I still don't like at all. Our current society just isn't ready to try anything like this at all especially if it's done and governed by company or companies. And it's just not only that the system will be extremely expensive and wether it's Microsoft with their Project Bali or Apple they are not doing it for the good of mankind but for money and so there will be a catch (wether it's company selling your data or it's locked down to certain devices in one way or another). It's not also that the system would need to be 110% open so it's not just iDevices that can use the system and only iDevices that can add data to the system, but everything now and in the future, and that is one HUGE thing that Apple will never do (or if that miracle happens the "experience" will be very limited without an iDevice and there will be a ton of brakes in the place because you are not using an iDevice).

 

One of the biggest things is the legality. It's not that the developing company was incompetent that it took Finland around 10 years to make this kind of service (kanta.fi) where every person and their doctors can access medical info and which also handles our electronic prescriptions. Most of that time went to build the security so that person cannot see anyone elses medical info even by accident (except if one is a carer for another) and that doctors, nurses, polices, IT crew and anyone else cannot access ones data without it being relevant to treat that person or with that persons permission. Also there is a quite a lot proofing around and loging because it's kind of important that there isn't prying eyes and that if someone (mainly a doctor, nurse or police) was to access their neighbours data without permission or need that there would be a mark and that someone could be punished for that. That is kind of the short list what Finnish law requires and that's only Finnish law, something global should take into consideration every countrys laws and that is quite good case of problems, for example if it was for tax information you only need to take something like Finland and UK and you have quite a big bucket of worms because in UK it's extremely important that only relevant people see how much single person earns and how much that person has money, in Finland go to the tax office and you can ask to see anyones (and I mean Anyones) tax records including how much they have earned and all that is included.

 

But even that is quite tiny and easy problem to solve compared to the technical side. Funny thing about medical databases is that there's really no standards anywhere and as healthcare has quite a lot of money there's also just huge number of different systems. It's already quite a job to make two different databases compatible so that third database can access both of them, with this kind of job that is going to require making a software that can access at least something like 50 databases which all are more or less independently developed.

 

Oh! And there's also that sporttracker data, that's going to be fun to see someone make possible, you could just as well try to put Samsung, Google and Apple in to a same room and ask them to agree on something as one (yep, never going to happen in our lifetimes). Just for example, if you have and iPhone, get ready to sell your kidney for that Apple Watch because there is going to be so much headache with any other smartwatch (notifications don't work and basicly anything that requires access to anything outside the watch makers own app doesn't work because that's how open iOS is), and if you don't have an iPhone, don't even dream about Apple Watch, it's more than locked to iOS and if you don't have that you could just as well buy a normal non-smartwatch. So, yeah, I think the world is as ready for global iHealth as it's ready for alien invasion.

[mr moose]

We already have something similar going into practice here.

 

https://www.myhealthrecord.gov.au/

 

you can choose what information is viewable from it. E.G you can put a password on certain files and you can give your doctor the password.

 

The only thing I don't like about it is pharmacies can see it (I don't know the implications of that) and it's opt out, it should be opt in.

 

 

 

 

[noir]

3 hours ago, RorzNZ said:

All doctors have access to your records, that’s important. For instance if someone is investigating whether a pancreatic cancer is amenable to any therapy, they could look up in a global Apple Database to see if any patients with pancreatic cancer have seen remission. They would then be able to see what treatments or contions the patient had that allowed the remission of the pancreatic cancer and then go on to develop into a treatment. That’s how many treatments are made. Humans are so diverse, and that is why this research will be so beneficial. Patients records are not just for patients, and you can choose who sees your records as appropriate.

 

In New Zealand we also have something called ACC. This means when you have an accident, you may be liable for state insurance, effectively. Patients claims are assessed with their records to see if their claim is valid, your (the patients) previous medical history, current treatments and claim will be sent to and cross referenced to random allocated doctor, as well as scientist for specific (Such as whether a dose of radiation caused infertility, a physicist will be referenced as well as a radiational oncologist.)

 

Your medical records are very valuable to you, and research. You are important, and this data is extremely important. Without knowing it, you could be the cure for a horrible condition that you may develop. 

This did not answer his concern however.

As stated above, if the insurance companies are able to get their hands on this data you'll be much worse off.

[Trixanity]

This is already a thing. It all depends on the digital development of your country or health care. I can do this right now.

[Thaldor]

2 hours ago, mr moose said:

The only thing I don't like about it is pharmacies can see it (I don't know the implications of that) and it's opt out, it should be opt in.

In Finnish version of this pharmacies can only see your prescriptions which is probably the most useful part of the whole thing because now doctors can write prescriptions through phone in some cases (like renewing long time prescriptions if nothing really hasn't changed or ordering new medicines if the patients status is well known, basicly cases where going to see a doctor to get a prescription is basicly just waste of time). Basicly everyone sees what they need to see like pharmacies don't see why you have been prescripted something and hospital receptionists don't see your full history, but only your reserved time and the doctor and probably in some cases what you have told them to reserve that time.

[mr moose]

3 minutes ago, Thaldor said:

In Finnish version of this pharmacies can only see your prescriptions which is probably the most useful part of the whole thing because now doctors can write prescriptions through phone in some cases (like renewing long time prescriptions if nothing really hasn't changed or ordering new medicines if the patients status is well known, basicly cases where going to see a doctor to get a prescription is basicly just waste of time). Basicly everyone sees what they need to see like pharmacies don't see why you have been prescripted something and hospital receptionists don't see your full history, but only your reserved time and the doctor and probably in some cases what you have told them to reserve that time.

My only concern is sometimes here in Australia pharmacists try to be the doctor when you get a new script filled.  I don't mind them questioning a drug that might react with another drug you are on,  or a script that should have a repeat or be on a lower dowse for an initial, but sometimes they ask you what its for and then proceed to tell you how to take it,  like fuck man the doctor just told me why and how and it's even printed on the label.  I don't need to have this conversation in front of other customers. 

[Thaldor]

5 minutes ago, mr moose said:

My only concern is sometimes here in Australia pharmacists try to be the doctor when you get a new script filled.  I don't mind them questioning a drug that might react with another drug you are on,  or a script that should have a repeat or be on a lower dowse for an initial, but sometimes they ask you what its for and then proceed to tell you how to take it,  like fuck man the doctor just told me why and how and it's even printed on the label.  I don't need to have this conversation in front of other customers. 

That sucks. Sometimes it's quite a good thing to live in the worlds #1 nanny country, took couple of years of armwrestling by pharma companies that Finnish pharmacians can recommend their customers alternative prescription drugs as long as the effective ingredient, dose and usage are the same and the price is lower. The normal shelf stuff is free to be marketed and recommended to the heavens, but prescription stuff is quite tightly regulated and if you go against those regulations you soon find yourself one pharmacy poorer.

[mr moose]

 

1 minute ago, Thaldor said:

That sucks. Sometimes it's quite a good thing to live in the worlds #1 nanny country, took couple of years of armwrestling by pharma companies that Finnish pharmacians can recommend their customers alternative prescription drugs as long as the effective ingredient, dose and usage are the same and the price is lower. The normal shelf stuff is free to be marketed and recommended to the heavens, but prescription stuff is quite tightly regulated and if you go against those regulations you soon find yourself one pharmacy poorer.

Australia is similar, the pharmacist asks you if you want  cheaper version, the cheaper version has to be identical it's usually just made by another company.  And technically they are not allowed to advertise prescription drugs but they are starting to, just not by name.  That is something I wish they would tighten up on. ads and specials for the doctors sure, just don't advertise to the general public, they are stupid enough as it is without telling doctors what medication they need because they saw it on tv.

[captain_to_fire]

4 hours ago, RorzNZ said:

Your medical records are very valuable to you, and research. You are important, and this data is extremely important. Without knowing it, you could be the cure for a horrible condition that you may develop. 

Current topic in Bioethics which includes the different privacy laws in some countries regarding healthcare data. It’s a shame that many doctors are afraid of technology. Sure computers can be remotely hacked but breaking a locked file cabinet is easier. 

 

23 minutes ago, mr moose said:

but sometimes they ask you what its for and then proceed to tell you how to take it,  like fuck man the doctor just told me why and how and it's even printed on the label.  I don't need to have this conversation in front of other customers.

Because just like nurses, pharmacists catch doctor mistakes and prevent them from killing their patients. Aside from shitty handwriting doctors do, they sometimes forget drug interactions that can null the effect of each drug or have interactions that are life threatening. Also, that is their job to educate the masses about drugs and how to take them because there are doctors who don’t talk to their patients in layman’s vocabulary. 

[mr moose]

2 minutes ago, captain_to_fire said:

Because just like nurses, pharmacists catch doctor mistakes and prevent them from killing their patients. Aside from shitty handwriting doctors do, they sometimes forget drug interactions that can null the effect of each drug or have interactions that are life threatening.

 

33 minutes ago, mr moose said:

My only concern is sometimes here in Australia pharmacists try to be the doctor when you get a new script filled.  I don't mind them questioning a drug that might react with another drug you are on,  or a script that should have a repeat or be on a lower dowse for an initial, but sometimes they ask you what its for and then proceed to tell you how to take it,  like fuck man the doctor just told me why and how and it's even printed on the label.  I don't need to have this conversation in front of other customers. 

We already have a system in place in Australia where pharmacist can see your prescription history when they dispatch your script, so they don't really need to ask for that reason.  

 

2 minutes ago, captain_to_fire said:

Also, that is their job to educate the masses about drugs and how to take them because there are doctors who don’t talk to their patients in layman’s vocabulary. 

 

I don't know how they train doctors in your part of the world, but in 43 years I have yet to encounter one that doesn't advise how or why to take a prescribed medicine.

 

[EstonianTech]

Looks like Apple is building a wall again...

[Sauron]

8 hours ago, strajk- said:

Why lock it down to a platform?
Why not make an open standard for something important like this?

Because Apple is not above profiting from your health issues.

8 hours ago, strajk- said:

If it is really as great as survey's say, then lets hope it gets implemented in a wide range, including opening it up for other platforms, this is a godsend for people like me.

Many countries already do this with systems commissioned by the government, sadly not the country of Freedom^tm

9 hours ago, RorzNZ said:

access to Apple's database (One database is a lot better than two in this scenario, not an Apple vs Android thing - Apple has the edge by far when it comes to health. If we have two data sets, particularly with data from phones, this could mean duplicates if people have two phones. You might be thinking that in this regard Apple's health is taking information from the hospital database, but the health app also collects data on the Activity app, such data is also wanted - and would be centralised in Apple's Health app). If we can finally get a good data set like this, with live information feed, it will be very beneficial for research. Such a huge leap.

Hang on, everyone only needs their personal database entry... which doesn't depend on the plaftorm. The only advantage to having a unified database is allowing hospitals to update that information easily. Who provides the database is irrelevant.

 

The "activity" data ought to be separate, and require you to have a dedicated app... which you may or may not need or even want. I'm not sure what data doctors may be looking for, but for any serious illness I'm sure you'd need far more specialized tools than what a phone can provide, even if paired with a glorified fitness band.

[Guest]

2 hours ago, Sauron said:

 

Hang on, everyone only needs their personal database entry... which doesn't depend on the plaftorm. The only advantage to having a unified database is allowing hospitals to update that information easily. Who provides the database is irrelevant.

Hospitals do have a unified database, but there is no common personal database between android or Apple.

2 hours ago, Sauron said:

The "activity" data ought to be separate, and require you to have a dedicated app... which you may or may not need or even want. I'm not sure what data doctors may be looking for, but for any serious illness I'm sure you'd need far more specialized tools than what a phone can provide, even if paired with a glorified fitness band.

Activity is the name of the app, which is standalone but sends data to the health app. TheApple Watch is one of the most accurate monitoring devices for heart rate, ecg etc. The health app is not a detection tool. When Google invests into health as Apple does, we might see this change, but right now there is no competition. 

[Thaldor]

3 minutes ago, RorzNZ said:

-snip-TheApple Watch is one of the most accurate monitoring devices for heart rate, ecg etc.-snip-

Ask anyone who actually knows about metering heart rate and you will find very different answer. Any wrist mounted device is adequite at best at heart rate metering and should be used for only approximating it because so many different things affect the metering (you can quite easily fool any wrist meter by simply tapping your your hand so the skin moves a little, also for more accurate metering you would need to tighten the wrist strap so the watch doesn't move at all which quite soon becomes irritating especially if you sweat). There's a reason why sport watches support and most of them even recommend using chest mount heart rate meter and hospitals use the fingertip clip.

[Guest]

10 minutes ago, Thaldor said:

Ask anyone who actually knows about metering heart rate and you will find very different answer. Any wrist mounted device is adequite at best at heart rate metering and should be used for only approximating it because so many different things affect the metering (you can quite easily fool any wrist meter by simply tapping your your hand so the skin moves a little, also for more accurate metering you would need to tighten the wrist strap so the watch doesn't move at all which quite soon becomes irritating especially if you sweat). There's a reason why sport watches support and most of them even recommend using chest mount heart rate meter and hospitals use the fingertip clip.

I say it’s accurate because I know it’s accurate.