Health and lifestyle apps: Enhencing quality of life, improving medical research. On the downside: shaky and unsafe programming, aiming at controlling lifes, fostering trade of private data, supported by lawmaker’s games. Feeling gloomy about the self-determined future.
My talk at ESOF 2016 in Manchester, UK, session „Should we trust the eDoctor?“
Great future for sick people, indeed. Medical apps used for prevention, diagnosis and treatment of diseases are admittedly utmost beneficial. Especially for patients with chronic diseases and also for collecting data for medical research in order to improve treatment and health care.
However, there is much more out there today. Health claims are covering also apps relevant to lifestyle, fitness and well-being, the „non-medical“ apps. People use them in order not to become ill, as a kind of prevention. However, the borders between medical and non-medical health apps are fluent.
Sensors become ever smaller and more efficient, devices become tinier. As the internet is available everywhere, the digital giants – Google, Apple, Microsoft or IBM – as well as a wealth of startup companies and programmers see great opportunities to earn money. It’s basically the data they are after, gained by the apps which they make freely availabe in the app stores. Around 400.000 apps around health, fitness or wellbeeing can be found in the depositories.
In order to keep pace with the stream of ever increasing big healt and wellness data and to get the most out of them, the digital giants even started to hire well known leaders from distinguished research institutions.
You all know that apps and computer programmes are still put together quite sloppy, customers misused as beta-testers. Virtually every day an update naggs you.
So the questions are allowed: How technically secure and trustworthy are the apps? How technically secure are the cloud storages holding the data from the apps, considering the careless routines of most programmers?
Numorous hackadons showed us how easy it is to hack many of the software functions of which the vendors want us to trust and on which a broad number of communitiy services are dependent.
Even apps developed for serious medical purposes fail to reach basic security recommendations. The company Esecurity tested 140 of such medical apps developed by clinicians and medical researchers. In 80 percent of them the experts could read out the login data. In 75 percent they could even manipulate the data, for example blood suger values.
But much more dramatic are the findings of a German study in the realm of mobile consumer wellness apps. The experts found that quality apps, which can indeed deliver valid information and which work reliable, are very seldom. Even worse: Many of the applications can confuse the users, give them wrong information or convey a totally wrong sense of security.
As a consequence a new ailment has been named: »Cyberchondria«, which is seem to be of growing concern among many healthcare practitioners. It is the obsessive tracking of ones health conditions which increases bodily anxieties.
Privatisation of Data
In a comment, which appeared on 21th July 2016 ago in »Nature«, John T. Wilbanks and Eric J. Topol, warned that the move of the high-tech giants into health may widen social inequalities and harm research unless people can access and share their health data voluntarily. Topol is professor of genomics at the Scripps Research Institute in La Jolla. Wilbanks is chief commons officer at Sage Bionetworks in Seattle, a non-profit organization that promotes open science and patient engagement in research. – Besides: Wilbank’s former boss is one of those leaders who left for the digital giant Apple.
The privatisation of data by the internet companies is the biggest concern for the autors. Ending up in the cloud stores of the big companies, the infomation is closed for research. They mention Google, which partnered last year with the Mayo Clinic to curate health-related facts. This knowledge was plugged into the search engine’s smart search algorithm in order of deliver users more relevant and supposedly more accurate information whenever symptoms or conditions are hacked into the search engine. This service, the authors write, will only enhance Google’s — and only Google’s — ability to conduct an unprecedented level of information retrieval for health – which for many ailments may replace visits to the doctor.
But patients can only be empowered if they are able to easily send the information to their own health provider or any analyst they want. When allowing privatisation of health data, there is always the danger that companies are able to trade people’s disease profiles, even unbeknown to the patients.
But also health insurances are queuing up for data. They say, unhealthy living people are a great financial burdon for society. The argument encounter the open ears of politicians. But to be honest, no group is more expensive to society than the healthy and slim non-smokers. They live many years after they retire, becoming also an economic burden to society.
In the European general health insurances systems healthy people are charged according to their income, whether they are fit or chronically ill. But in fact, the insurers start to offer apps aiming at controlling their clients lifes. The more walking, the more bonus points can be earned, easily summing up to a couple of 100 euros per year. This is a true discrimination of people refusing to share their health or disease data. However, politiciens have a different logic. For them a bonus system is not discriminating and not contradictory to the principle of solidarity.
To be honest, the European Union already installed directives to protect people’s digital information from becoming exploited for commercial or other purposes. And also a mechanism called RRI is evolving, Responsible Research and Innovation.
Politics and Lawmaking
It is good to have regulations. But regulations and laws can easily be changed. Although we are said to live in democratic societies in Europe, we are all very aware that our politicians like to negotiate new rules in the dark without involvement of citizens and without transparency – which is in total contradiciton to what they publicly claim and ask for.
So the question is allowed and may be discussed elsewhere: Can we really trust the legislators that they are willing to keep personal health data secured over a long time?
We have already a number of examples where personal health data have been shared with the industry unknowingly of the patients. They were relly surprised, when pharmachetical companies contacted them in order to ask them to participate in medical tests. As a recent example from Danmark show, even the doctors did not know that some administrations used the data of their patients.
The European Commission touts a lot for citizens participations in Horizon 2020 projects. But can we really the politicians? Jean-Claude Juncker, Presiden of the European Commission was honestly open on that: „When it becomes serious you have to lie“, and „I am for secret, dark debates“.
Or consider the number of criminally convicted politicians. Of the 4000 candiates standing for the Swedish parliamentary election last September, 200 were were criminally convicted – that are 5 percent. I guess this is not different in other countries.
But there is a fourth level that want to mention: The paradigm change due to digital health and wellness.
Here I may refer to Carl Cederström, Associate Professor in organisation theory at the Stockholm Business School, and his latest book „The Wellness Syndrome“ with André Spicer.
He is of the opinion that health nowadays is not any more a question of personal well being or personal wishes. It is more a request of employeers and the society. It turned into a moral category: Healthy people are good, unhealthy are bad.
Think of all the smoking scientists like Albert Einstein, chain smoker J. Robert Oppenheimer, Edwin Hubble, Sigmund Freud, and the intelectuals Jean-Paul Sartre, Albert Camus and Hannah Arendt. Formally they were probably critizised because of their habit, but their characters are still admired.
Due to the Quantified Self community and the wellness movement, not habits are condemned any more, but the personalities with certain habits. That is the pradigm change.
The essence of my thoughts: The citizens in solidarity with trusted and truely independent researchers have to gain back control over their health data – and thus the control over their body, life and thinking.
However, the move has to come from bottom up. As I said, political decisions, adminstrative rules, as well as legislation, technology and business models move so fast that it is probably a danger to leave the responsibility for our data to them.