Apple Prenotatissimo Research Kit: a success with many doubts
Research Kit is the heart at the last appearance of Tim Cook’s keynote
Before talking about the new MacBook and the price of Apple Watch, Apple CEO has unveiled what is the new program group for medical research.
The argument intended to return to the bench, because the issue is extremely sensitive and data treated too important to not merit a detailed investigation.
After a few hours of the announcement, the first effects: Research Kit seems to be a success right from the start, but at the same time they stand right away some doubts only a further work of communication and transparency will unravel.
Bloomberg said that since the early hours user participation in research projects undertaken was the insignia of enthusiasm: 11 000 volunteers would already enrolled in a program of studies for cardiovascular problems, something that by normal means imply the effort to at least 50 medical centers coordinated. “That’s the power of the phone,” glosses the medical director of the Stanford Cardiovascular Health, praising so the idea of Apple.
Research Kit is an open source platform that allows medical research to recruit volunteers for simple tests that can be performed in contact with your smartphone: the data are collected (with the promise of maximum protection of privacy), filtered, and come to researchers without going through Apple: Apple claims that it has no direct benefit from the data management which relies on the voluntary framework. The strength of the project lies in the involvement: the search is no longer a relationship between doctor and guinea pig, but it becomes a dialogue in which the parties have the same potential and in which the “patient” expresses its willingness in exchange of information and tools that can be useful to his uncomfortable condition.
The strength of large numbers, however, is hard to ignore: if thousands of people rely on the project in just 24 hours, means that there is still a need to Research Kit which is offering an answer. If the needs of medical research and the pulses of users are a point of contact in the framework of Cupertino, inevitably institutions that will invest will find new resources to draw on for their research activities.
doubts remain and the first concerns the goodness of data
A cornerstone of medical research is in the quality of data collection, sample selection, careful analysis of the methods and processes.
- Can a medical research base their assumptions and their checks on a non-controllable instruments not certified, through a panel not selected?
- Can a test be valid when relies largely of their quality on the attention of the user (which is, however, more stimulated by different impulses, ie the reaction to their discomfort)?
- How could affect the psychological biases that a tool like Research Kit requires tester , potentially invalidating the entire data collection process?
- How are sincere responses of a patient who, far from taking direct responsibility for their own problems, will always tend to confuse this reality instead of providing an undeniable truth questionnaire proposed?
A number of doubts of great importance, in short, lies on the Research Kit questioning their goodness as a tool for medical research: too much background noise to thinking of holding data really useful for research. Although in theory may be all very positive, in short, a more careful examination of the mechanisms highlights dangerous cracks that seem to invalidate the idea.
In the analysis of Bloomberg the more pragmatic conclusion is that Todd Sherer, CEO of the Michael J. Fox Foundation for Parkinson’s Research: Research Kit can not replace traditional methods, but it can still be an important compendium that operates in the role of complementarity. Neither a promotion nor a rejection: you must be fully aware of what you can get with Research Kit, how much data can be impure and how uncontrollable external conditions may invalidate the collection.
Doubt more insidious about privacy
The darkest shadow that stretches on Research Kit is the one that stems from the analysis of the Consumerist, that anonymity would not really guaranteed. First, the mechanism: apps rely on Sage bionetwork their data, which will be anonymized before being sent to those who manage the app. At the same time, however, is granted permission (via an optional opt-in / opt-out) to assign data to other “qualified researchers”: what are the skilled researchers and what the purpose of this transfer of data is not clear .
The high economic value of the data available to the biomedical research requires a reasonable doubt preconceptual: it was all done in the best way in order to take advantage of Research Kit both medical research and not a forest of private entities that feed the growing value in the sector?
And finally a doubt pushed to the extreme leads to questionable whether a search system uncontrolled, unmediated by institutions, in which researcher and guinea pig are in contact Direct and so poorly regulated and verified aside the consequences of short-term, one wonders if it is bringing the system to derail the long-term consequences not easily predictable
The advantages that shine in the early hours obscure doubts, making weak arguments of critics in favor of the persuasiveness of excited.
The issue is too important to be superficial
It takes discipline and awareness.
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