Thousands have already signed up for Apple’s ResearchKit medical studies amid bias criticism

“Stanford University researchers were stunned when they awoke Tuesday to find that 11,000 people had signed up for a cardiovascular study using Apple Inc.’s ResearchKit, less than 24 hours after the iPhone tool was introduced,” Michelle Fay Cortez and Caroline Chen report for Bloomberg. “‘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.'”

MacDailyNews Take: Make that “the power of the iPhone.”

“With ResearchKit, Apple has created a pool of hundreds of millions of iPhone owners worldwide, letting doctors find trial participants at unprecedented rates. Already five academic centers have developed apps that use the iPhone’s accelerometers, gyroscopes and GPS sensors to track the progression of chronic conditions like Parkinson’s disease and asthma,” Cortez and Chen report. “At the same time, other researchers caution that potential flaws in the information gathered through ResearchKit may make the data less useful… For starters, the average iPhone user is more likely to have graduate and doctoral degrees than the average Android user, and has a higher income as well, according to polling company CivicScience Inc. Those sort of demographic differences could skew the findings from a study.”

MacDailyNews Take: No worries: Apple’s ResearchKit is open source. Soon enough, even the less educated, poorer, shorter, unhealthier, and far less charitable fragmandroid sufferers will be able to populate the left side of the bell curve with their data (from cheap crappy sensors and all; good luck trying to account for that).

“Yet the iPhone also helps address a problem that standard trials often encounter: People enrolled in studies often falsely report their activity to researchers. By using its internal components or secondary devices connected wirelessly via Bluetooth, the iPhone can silently measure users’ behavior, without relying on them to keep track or be honest about what they’re doing,” Cortez and Chen report. “‘People don’t want to say they did zero exercise — they want to say they did something.’ Stanford’s Yeung said. ‘They don’t really tell us the truth.'”

“Many concerns about ResearchKit — such as whether the patient sample is representative — are issues with traditional clinical trials as well, said Todd Sherer, CEO of the Michael J. Fox Foundation for Parkinson’s Research, which has collaborated with nonprofit group Sage Bionetworks on one of the apps,” Cortez and Chen report. “The Parkinson’s app had 5,589 consenting users by Tuesday morning, according to Sage. Sherer said he didn’t know the cost of developing the app, but the foundation’s biomarker study, a traditional trial with almost 800 participants over five years, has cost about $60 million.”

MacDailyNews Take: Yeah, the app didn’t cost $60 million.

Read more in the full article here.

MacDailyNews Take: Once again, Apple makes the world a better place.

Related articles:
Apple’s open source ResearchKit will change the world for the better – March 9, 2015
Apple debuts ResearchKit, giving medical researchers the tools to revolutionize medical studies – March 9, 2015

24 Comments

  1. It’s being claimed the iPhone studies only target the rich and not the sub-Saharan population. Not only there but, how many deep Amazonian tribesmen carry iPhones. I’m pretty sure they can only afford Android smartphones. That’s where Google is starting Project Loon.

    /s

    Anything Apple does is going to meet with heavy criticism because so many people believe that Apple only serves the rich which makes Apple as a company, appear less noble than Google.

  2. Geez Bloomberg writers, at least signup for a study and see what they require, then cancel it after a week. I signed up for the Stanford study; Ischemic Heart Disease is Ischemic Heart Disease no matter what kind of cell phone you carry. I’m really beginning to hate tech writers, such a stupid lot.

    1. You and I both. Most technology writers are salivating idiots, second-rate geeks, and suffer from a mix of ADHD and kleptomania when it comes to things shiny and new and technical. They are sad human beings who mentally have little purpose in life except to run the hype treadmill and never question the vacuous nature of their writing or their lives.

  3. “other researchers caution that potential flaws in the information gathered through ResearchKit may make the data less useful… For starters, the average iPhone user is more likely to have graduate and doctoral degrees than the average Android user, and has a higher income as well”

    So, those attributes – better education and income – are automatic qualifiers of diseases affecting ones cells? So, educated rich people aren’t at risk? What bunk! Actor Christopher Reeve’s wife Dana Reeve, was talented, good education I’d imagine, definitely had a good income and a non-smoker to boot yet all that did nothing to protect her from being afflicted with lung cancer and dying from that! Bottom line, disease does not discriminate! What was that line from Mr. Murdoch to Mr. Hockley in the movie Titanic… “Your money can’t save you anymore then it can save me!”

    I’d think mere numbers alone would help researcher’s studies and that’s a good thing. Thank you Apple, ResearchKit and to those who already signed up for studies!

    1. You may call it bunk, but being better educated and having higher income does indeed alter your risk for various disorders and conditions. This may not be directly – take home pay doesn’t alter your genes, but low SES is associated with increased exposure to environmental toxins, poor nutritional health, reduced medical care, etc. All of which may alter genes (or their expression), and are associated with increased disease risk and burden. This is not to say that I’m not fully supportive of researchKit – I fully embrace it and am looking to include it in my own research, but this demographic information is important (and at least needs to be documented and controlled for).

      1. How would demographics characterize Steve Jobs, I wonder? He dropped out of college, but didn’t need a Masters or Doctorate degree to be highly intelligent in the world of business that allowed him to become extremely well to do. Sadly, it didn’t stop pancreatic cancer from afflicting him? What did he do or didn’t do that possibly opened himself to it versus another demographic of more educated, less successful people; less educated, less successful people; or more educated, more successful people? The only thing going in Steve’s favor was his money that bought him a little more time. Other than that, his money couldn’t save him, like it couldn’t save Murdoch. If money, education, living in a gated community or penthouse floor versus the wrong side of the tracks are all that one needs to have a better chance at avoiding risk factors for various disorders, conditions or disease, then I am with you. However, again, disease does not discriminate!

        Being poor and not having a college degree does not mean one can’t have pride in themselves and make wise decisions that can give them just as good a chance as someone as renowned as Steve Jobs or Dana Reeve. So again, I’ll say bunk to what researchers would denote as an asterisk to explain away why some people who are better educated, more successful, and have a better living standard and quality of life in every aspect like Steve, can be afflicted as those who are not better educated, more successful, and do not have a better living standard and quality of life.

  4. Bias my ass.
    I’m middle class, my daughter is 20 and has even less money but knows the difference between great tech and crap tech. So she saved and scrimped and bought an iPhone 6 with her own money.

    The wife and I are using old iPhone 4S. Once we get some extra cash, then we’ll upgrade to a used 5s.

    These so called tech writers seem to forget the varying entry levels for an iPhone. You can get a new one free with a 2 year contract. FREE. What part of free do they not understand?
    Just more of the same hit pieces being pushed out there by the other phone companies.
    Hell, go on Craigslist and find a huge amount of used iPhones at any price point and go with Ting Cellular if you are really cheap.

  5. This is why they invented biostatisticians. There will be issues with biased sampling (more problematic for some conditions than for others) and with some wonky sensor data. But with time to sort those issues out, the advantages of the huge numbers of new participants are sure to lead to important insights. This will be a new kind of “big data” medical research. it won’t replace smaller-scae trials with more careful sampling and measurement, but it will have its place.

    1. Greg, if you watched the keynote presentation, Apple was very explicit that the company would collect ZERO data from apps developed using ResearchKit. All data between the user and the university/hospital/organization that is conducting the medical trials stays only between those two parties.

      To repeat: Apple will not “spy” on anyone participating in clinical trials via these apps. The company will not see any participants’ health data.

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