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Original poster
Apr 12, 2001
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Less than twenty-four hours after Apple unveiled ResearchKit, the open source medical framework had received thousands of sign-ups, according to Bloomberg. The report claims that Stanford University researchers awoke on Tuesday morning, the day after Apple's "Spring Forward" media event, to discover that 11,000 people signed up for MyHeart Counts, a cardiovascular disease app built using ResearchKit.
"To get 10,000 people enrolled in a medical study normally, it would take a year and 50 medical centers around the country," said Alan Yeung, medical director of Stanford Cardiovascular Health. "That's the power of the phone."
ResearchKit is an open source software framework aimed at revolutionizing medical studies by making them more readily available to millions of iPhone users worldwide. When given permission, the framework uses the iPhone's various sensors to collect user data such as weight, blood pressure, glucose levels and asthma inhaler use, information that Apple hopes will open up new possibilities for researchers.

ResearchKit-800x633.png
Apple will also enable users to answer surveys and input data directly from ResearchKit apps, although researchers caution that information collected from an iPhone user may be misleading due to various potential flaws. For starters, the report claims that iPhone users are more likely to have a graduate or doctoral degree than Android users, and the demographic differences can allegedly skew the results.
"Just collecting lots of information about people -- who may or may not have a particular disease, and may or may not represent the typical patient -- could just add noise and distraction," said Lisa Schwartz, professor at the Dartmouth Institute for Health Policy and Clinical Practice, in an e-mail. "Bias times a million is still bias."
Meanwhile, an iPhone user simply hitting a button by accident or giving his smartphone to someone else can also result in misleading data. Nevertheless, there are issues with data collected through traditional clinical trials as well, and ResearchKit allowing people to engage in medical research more easily is still valuable and, as Apple claims, could transform the way that medicine is approached forever.

Article Link: ResearchKit Receives Thousands of Sign-Ups Following Launch
 

nad8e

macrumors regular
Jul 17, 2008
151
2
Colorado
I'm not sure 99% really have any clue just how powerful and amazing the Apple Watch is going to be, when integrated with this type of capabilities!
 
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technosix

macrumors 6502a
Jan 13, 2015
929
11
West Coast USA
One things for certain, there's plenty of very motivated people making apps and accessories as fast as possible. First Mover Advantage cannot be underestimated :)
 
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2457282

Suspended
Dec 6, 2012
3,327
3,014
A co-worker of mine quickly downloaded the Asthma related app. I do think that as disease or condition specific research apps come out, people will sign up. If an app comes out for something that I have or am interested in, I will sign up for sure.
 
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kmj2318

macrumors 68000
Aug 22, 2007
1,638
634
Naples, FL
I'm assuming most of these people are Apple fans just wanting to see the app. Can anyone just use these apps even if they don't have the disease?
 
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Max Davidse

macrumors newbie
Mar 11, 2015
1
0
US Only

One thing I find really sad about this, is that Apple promoted the 700+ million iPhones the've sold as a way of indicating the scale of this initiative, but at the same time limits participation to the US. As a Dutch citizen I cannot download the apps in the app store. I know this might change "in the future", but still...
 
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mattopotamus

macrumors G5
Jun 12, 2012
13,930
4,488
One thing I find really sad about this, is that Apple promoted the 700+ million iPhones the've sold as a way of indicating the scale of this initiative, but at the same time limits participation to the US. As a Dutch citizen I cannot download the apps in the app store. I know this might change "in the future", but still...

marketing is all about skewing those numbers
 
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xero9

macrumors 6502a
Nov 7, 2006
859
481
One thing I find really sad about this, is that Apple promoted the 700+ million iPhones the've sold as a way of indicating the scale of this initiative, but at the same time limits participation to the US. As a Dutch citizen I cannot download the apps in the app store. I know this might change "in the future", but still...

Didn't realize that.. Restricting things like Apple Pay, iTunes Radio, etc make sense (even though it still annoys me), but this doesn't really make sense. Okay, so it's US hospitals conducting the research, but wouldn't more data be valuable?

Seems silly.. Especially like you pointed out, they boast about the number of iPhone users being so high. True, there are probably still a ton of US iPhone users (I'm not sure if the total of all other countries vs the US is higher or lower), but obviously more world-wide
 
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Rogifan

macrumors Core
Nov 14, 2011
22,312
28,058
I'm not sure 99% really have any clue just how powerful and amazing the Apple Watch is going to be, when integrated with this type of capabilities!

Exactly. And makes the media meme that Apple dropped Heath stuff in favor of bling sound ridiculous.
 
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shiseiryu1

macrumors 6502a
Sep 30, 2007
534
294
iPhone vs Android Users

"iPhone users are more likely to have a graduate or doctoral degree than Android users"

Haha! Well, I guess if you want to have indigent people included in your medical studies Android will just have to make their own version of ResearchKit. :p
 
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eac25

macrumors regular
One thing I find really sad about this, is that Apple promoted the 700+ million iPhones the've sold as a way of indicating the scale of this initiative, but at the same time limits participation to the US. As a Dutch citizen I cannot download the apps in the app store. I know this might change "in the future", but still...

Didn't realize that.. Restricting things like Apple Pay, iTunes Radio, etc make sense (even though it still annoys me), but this doesn't really make sense. Okay, so it's US hospitals conducting the research, but wouldn't more data be valuable?

Seems silly.. Especially like you pointed out, they boast about the number of iPhone users being so high. True, there are probably still a ton of US iPhone users (I'm not sure if the total of all other countries vs the US is higher or lower), but obviously more world-wide

Don't know this for sure, but the restriction may relate to the HIPAA rules in the US associated with the flow of private medical data and/or similar/related laws in other countries. The legislative landscape for health-related information is bound to be quite difficult to navigate, especially when taken at an international scope...
 
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Tycho24

Suspended
Aug 29, 2014
2,071
1,394
Florida
One thing I find really sad about this, is that Apple promoted the 700+ million iPhones the've sold as a way of indicating the scale of this initiative, but at the same time limits participation to the US. As a Dutch citizen I cannot download the apps in the app store. I know this might change "in the future", but still...

Sooooooo.......
Before this, did a lot of medical research done in the US include Dutch citizens?? *confused*
 
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guzhogi

macrumors 68040
Aug 31, 2003
3,252
1,197
Wherever my feet take me…
Not to be a Debbie Downer, but I'm a little worried about privacy issues.

Also, what happens if someone decided to sign up for one of these things, and then changes his/her mind? Can he/she opt back out of the research?
 
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ttss6

macrumors 6502
Mar 28, 2014
333
58
California
As an iPhone 6 Plus user, I just like feeling like the everyday activity I'm doing can be recorded and possibly help researchers better treat or even cure people with some of those diseases or disorders. Even if the data is a bit skewered since it is currently only iPhone 5S, 6, and 6 Plus accessible, I'm sure they can still get some kind of useful info.
 
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ck2875

macrumors 65816
Mar 25, 2009
1,001
2,634
Brighton
Not to be a Debbie Downer, but I'm a little worried about privacy issues.

Also, what happens if someone decided to sign up for one of these things, and then changes his/her mind? Can he/she opt back out of the research?

Yeah, I was curious about how all of this worked so signed up for the Stanford MyHeart one since it's the only one I qualified for (since all it requires is that you wear an activity tracker for 7 days).

Basically you are presented with the privacy disclosure info before signing up, a copy is emailed to you, and there is an option on whether you want to share your info with only Stanford or allow Stanford to share your info with other researchers. They also give you the information on how to contact Stanford if you have any questions.

After you're confirmed, you can go to your profile within the app, and change the sharing options, review the consent forms, remove the app's Health Kit permissions, and optionally leave the study if you want.

The app is protected by Touch ID and passcode on the user end.

You have to put in your full name to be able to consent to the study, but on their end, your name is removed and replaced with a number so people viewing the data don't know the name of the individual. If you're truly concerned, I don't see why you couldn't use a fake name.

They also ask for your weight / height / sex, and what time you wake up and go to bed. It asked for the first 3 digits of my zip code so that they would be able to classify the data by region

The app asks to use GPS because at the end of the 7 days there is a 6 minute walk test where it uses the GPS to estimate how far you walk in 6 minutes.

It seems fairly legit.
 
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unplugme71

macrumors 68030
May 20, 2011
2,827
754
Earth
Didn't realize that.. Restricting things like Apple Pay, iTunes Radio, etc make sense (even though it still annoys me), but this doesn't really make sense. Okay, so it's US hospitals conducting the research, but wouldn't more data be valuable?

Seems silly.. Especially like you pointed out, they boast about the number of iPhone users being so high. True, there are probably still a ton of US iPhone users (I'm not sure if the total of all other countries vs the US is higher or lower), but obviously more world-wide

What they could do is divide the database between US and International and then compare the two data points.

I know the reason they choose US is because it is common to know our culture, diet, medicines, and overall healthcare.

Taking results from another country may not reflect the same causes that US-based people may have. There's so many strands of viruses that finding a cure for one may not work for another country.
 
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kcmac

macrumors 6502
May 22, 2002
464
2
This is ground breaking and perhaps the most important unveil of the keynote. No doubt some new rules and guidelines will need to be established from the traditional methods. If I was a researcher I would be licking my chops. And kudos to Apple for making this open source.
 
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neuropsychguy

macrumors 65816
Sep 29, 2008
1,443
2,514
Also, what happens if someone decided to sign up for one of these things, and then changes his/her mind? Can he/she opt back out of the research?

Any study affiliated with a university/medical center has to have IRB (Institutional Review Board) approval. Part of this is to ensure that participants are appropriately informed about risks and benefits. There is always a disclaimer about being able to withdraw from any study at any time for any reason. If the consent form does not have this in it, do not sign. If that's ever the case, contact the IRB for the university/hospital running the study (but it won't get past IRBs in the first place without it).

If you want to withdraw, contact the researchers. You can tell them whether or not they can use what data they already have. That means you can tell them you don't want them to use any of your data and they have to destroy it.

/I'm a scientist at a university.
 
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MeFromHere

macrumors 6502
Oct 11, 2012
468
16
One thing I find really sad about this, is that Apple promoted the 700+ million iPhones the've sold as a way of indicating the scale of this initiative, but at the same time limits participation to the US. As a Dutch citizen I cannot download the apps in the app store. I know this might change "in the future", but still...

Why do you say Apple is limiting participation to the US? Typically the app owners decide which country-specific stores to off the apps in.
 
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0003462

Suspended
Dec 17, 2013
179
208
For all the people complaining that it's US-only, it's being made international in time. Read the original press release.
 
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Robert.Walter

macrumors 68000
Jul 10, 2012
1,676
1,856
One thing I find really sad about this, is that Apple promoted the 700+ million iPhones the've sold as a way of indicating the scale of this initiative, but at the same time limits participation to the US. As a Dutch citizen I cannot download the apps in the app store. I know this might change "in the future", but still...

Apple will have to adapt to the different regulatory environment in the EU and that will take time; it could also be one reason Apple open source shared it.
 
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