“iOS apps already help millions of customers track and improve their health.With hundreds of millions of iPhones in use around the world, we saw an opportunity for Apple to have an even greater impact by empowering people to participate in and contribute to medical research,” said Jeff Williams, senior vice president of operations, told the crowd at Spring Forward Event, 2015.
“Research is to see what everybody else has seen, and to think what nobody else has thought” –Albert Szent-Gyorgyi
Well, unlike market research carried out to come up with an innovative solution to consumers trivial needs/desires, medical research is carried out to come up with a medical solution to problems affecting living organisms within each participating research sample as well as worldover human beings in general. The plain fact that the test participants include me, you and our personal medical data and reports, in itself rings “CAUTION” alarms over the idea of participating in a medical research. Adhering to these subconscious danger alarms we smartly recline from participating and sharing our personal medical data, in order to avoid misuse of the same. But it’s time we wake up to our consciousness and ask ourselves “ Am I calling in danger for myself or contributing towards a healthy tomorrow by participating in a medical research?”. You will hear a still small voice happily thank God saying “I’M A CONTRIBUTOR TOWARDS A HEALTHY TOMORROW”.
We don’t realise that our subconscious danger alarms is actually posing great danger for medical researchers. Medical researchers worldover face few vital problems that slowdown or at times completely stop their research works. These problems mainly include i) Lack of required participation/adequate samples, ii) less access to required quantity of quality data, iii) infrequency in data acquisition and iv)one-way communications. Apple Inc. rightly understood these problems and willingly blend their technical specialisation with the medical research specifications and bring forth the “Research Kit”.However, Will this Research Kit meet all medical research concerns without any ethical or practical concerns?
Research Kit – a Practical Reality or a Technical Fantasy in the name of Medical Aid in a Practical World ?
Research Kit theoretically sounds very promising platform to aid the medical researchers and to break the stereotyped one-size-fits all medical approach. But we desire that you do not go by the hype of it rather critically analyse to realize for yourselves whether this research kit is a Practical Reality or a Technical Fantasy? Besides threats stemming out of privacy concerns or hacking problems, the following few concerns are also yet to be explained by Apple:
- Global iOS standing – Only 14.8% of global smartphone users currently run iOS, which is the only operating system on which Research Kit apps can be built. And that’s actually down a bit from 2013,according to IDC. A whopping 81.5% of global smartphone users run Android. So why didn’t Apple tie-up with Google if they genuinely intended to aid medical research by enabling access to higher number of medical volunteers?
- Percentage of iPhone Users who are eligible to volunteer in medical researches- over 60% of American teens own an iPhone, so do they suffer from Parkinson, cancer, etc? not necessary! And that’s the hitch: minors aren’t supposed to take part in medical studies without parental consent. But who will monitor this?. It’s easy to lie about your age online.
However, according to Sage Bionetwork’s Chief Commons Officer, John Wilbanks “We are less worried about fraud and trolling and impersonation because there’s a fair amount of work involved in being in this study, and doing it just for fraudulent purposes is kind of a strange behavior,” he says. “People might do it for shits and giggles for a week or two, but I can’t see someone doing voice testing and gait testing for 52 weeks when there’s no sort of public pay off.”
- Lack proper timely two-way communication options – as of now the medical Research Kit enables only collection of data via survey and semi-controlled activity-based tasks. But no option for participants to clarify their queries on the go is addressed in this Kit.
- Diseases vary by Income – for instance, people with lower socioeconomic status are more likely to develop heart disease compared with their wealthier counterparts. These lower socioeconomic people have reduced chance of owning an iPhone, which contradicts the expectation raised by Apple to deliver thousand plus research volunteers. Thus, not necessary that you own an iPhone but suffer from the specific research diseases.
- Inevitable need of owning an iPhone – is a great concern. The participants directed from clinics across for research need not necessarily own an iPhone. Now, if clinics extend to offer iPhones for rental basis, the question is will it be feasible to do so? and how many iPhones will each clinic buy and rent out ?. However, this concern is just a matter of time, with the Research Kit being made open to anyone to access the code and create apps.
- Will it justify the research rule of moving from “Specific-to- General” – I doubt the extent to which such a platform can bring out a generalised research result and report. Is it practical to generalise on the symptoms and effectiveness of a treatment figured out based on approximately say 2000 iPhone users in the urban and sub-urban areas? Will the sample taken in from iPhone users alone be able to provide informations capable of generalised quality reporting?
- Ethical Challenge – if a minor suffering from Asthma own an iPhone and be part of the Asthma study without parental consent, it might in future lead to ethical challenges for the app developers for the plain fact that minors without parental consent is not allowed to participate.
At the end of it all if we observe and not judge, Apple has initiated in all good sense, to innovatively and smartly help Researchers by developing such a platform. Besides,
- Asthma Health app, developed by the Icahn School of Medicine at Mount Sinai and LifeMap Solutions,
- Share the Journey app, developed by the Dana-Farber Cancer Institute, Penn Medicine, Sage Bionetworks and UCLA’s Jonsson Comprehensive Cancer Center,
- MyHeart Counts app, developed by Stanford Medicine,
- GlucoSuccess app, developed by Massachusetts General Hospital, and
- Parkinson mPower app, developed by Sage Bionetworks and the University of Rochester, currently available on App store in U.S.
Research Kit as an open source platform will be provided from next month.
Just like every coin has two sides, its up to each Medical Institution and each iPhone users to decide how they will develop their app and whether they want to participate via iPhone respectively. Research Kit definitely is a great idea and one with great scope to be improved upon. Like medical researchers hope the best out of this, being a typical person qualified in Marketing I hope to see iPhones being marketed at affordable prices and cover more participants by making available iOS to more and more people. Well it would be the least I can hope and maybe the best Apple could think forward on to enhance their aid to medical research.