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Your Data or Your Life? Towards the Acceptance of Digital Technologies and Data in Medicine

There is currently a heated discussion going on in Europe, and particularly here in Germany, about the use of COVID-19 digital tracing apps, a discussion that shows us how much the Internet has become a matter of life and death. The uses for such apps are undeniable, but the idea of deployment still meets with popular resistance. Sensitized by countless leaks and hacks, and chafing under restrictions in their freedom of movement, people are concerned that even the last zones of privacy are to be monitored, and that the personal data collected could be misused. Individuals are finding themselves in situations where they are being told to choose between their life and the privacy of their data. Not only is this situation unbearable, but it is also avoidable.

Basically, the issue is about acceptance of the little digital helpers that are available to society as individuals navigate the COVID-19 pandemic. This is not about the proposed technical solutions, per se. The type of storage and encryption of the relevant data is not the decisive issues. The ultimate questions are who has access to the data and what are they going to do with it. Is it used for the moment, for contact tracing, status verification, etc., and discarded, or is it stored in the cloud, for future unknown uses, as our archived digital persona? The questions are to what uses are the data employed, and whether and in whom we have enough confidence to provide access to the data. The issues are complicated. For example, tracking data not only records health status, but it also builds a geo-map of one's movements to facilitate contact tracing.

Medicine lives on trust, and there is a special relationship of trust between doctor and patient based on integrity. It is now a question of who and how we place our trust in digital medical innovations. It is about preserving digital integrity between digital technologies and their users. It is about matters of life and death for doctors and patients. It is also a matter of economic life and death for those who have made it their business to support medicine with their products and services. There is practically no medical field that does not take advantage of digital technologies. But what if the trust in these technologies has been lost?

The trustworthiness of digital data use practices is central to socio-economic acceptance and sustainability. As the European Commission stated in its recent White Paper on Artificial Intelligence: "As digital technology becomes an ever more central part of every aspect of people's lives, people should be able to trust it. Trustworthiness is also a prerequisite for its uptake."

We need business models that restore trust in digital technologies and, at the same time, strengthen our economic future and sustainability. Trust in the digital integrity of use models, those of business and government are valuable for Internet users. It ensures and protects them from the exploitation of their personal data. Current digital business models, and some governmental practices around the globe, are based on exploitative uses of personal data. Patients live in constant tension between taking advantage of what the Internet offers and digital servitude. Sometimes, there is no choice as medical devices become "smart" and interconnected with no option to disconnect.

The more one feels the tension and suffering from data exploitation, the more one values digital integrity. The measures the companies must achieve to develop and implement practices that enable digital integrity can be perceived as costly as data care; storage typically requires human and machine power. This is not a sunk cost. It fact, investment in digital integrity has the potential to reap great rewards for the provider and the end-user. It is the same process wherein society went "green." Consumers started paying for their physical health by buying organic products at a higher price than non-organic ones. Companies that offer products that are certified to protect the digital integrity of their customers can open new markets and can achieve higher revenues. As with the trend towards preferences in organic products, it is about concrete real and abstract values that enable people to have a better life and a greater standard of living without causing unnecessary harm to one's own body and the environment.

There is a beginning of an awareness around digital integrity from within the events of the COVID-19 pandemic, and the beginning of a movement that will gain momentum. Digital citizens are beginning to express their will through changes in behavior and expectations and beginning to create new economic realities. The "Brands in Motion 2018" study questioned 25000 consumers worldwide, and 93 percent of the consumers in Germany demanded the ethical use of digital technologies. A PEW Trust Study from 2019 showed that in 2015, ca 70% of consumers trusted the digital companies. This trust declined to 50% in 2019. There is no reason to expect that this trend will reverse in 2021.

The future will be shaped by the need for digital integrity as an integral property of business and governance practices, as well as in social behavior. To be ready for it, we must prepare for it, and the time to start is now.

Trustworthiness is also the key to the effectiveness and strengthening of all other economic sectors. Using the example of law enforcement agencies, no citizen would deny access to relevant data to a legitimate and authorized law enforcement agency to fight crime provided the appropriate controls and considerations are in place.

However, if a government treats its citizens as "not yet" criminals by default and expresses their lack of trust through widespread digital surveillance measures backed by socio-economic retaliation, citizens will learn to hide their information wisely. They know that they cannot trust a government that does not trust them. The current situation in China is a good example. If the government bases its surveillance approach on digital integrity and starts, there will be a dialogue created to define rights and obligations.

There will be resistance; it is human nature to hold onto a tried and true thing until it just does not go on. Circumstances and conditions have started to change with the increasing misuse of personal data and have been accelerated by the COVID-19 virus so that rethinking and reshaping become inevitable. Even the German Ministry of health, citing the trust and acceptance of the users as the reason, was forced to change its original proposal to store all COVID-19 App data centrally to a model where the data is stored on the user's smartphone only. As mentioned above, this does not actually address the problem as the question is who has access to the data. The only difference it makes is that in the first case the data is stored conveniently in one place by the government, while the other keeps the data on the personal devices, but accessible to hackers and those who have made it their business to sell us devices and then collect the data. Restoring trust in digital technologies is not a revolutionary process, but a gradual change based on the dialogue between all those involved. Trust is good, but control measures on which our trust can be based are better. The necessary processes must be initiated and accompanied by funding and control measures.

Roadmap for the acceptance of digital technologies and data in medicine: 1. Public relations and awareness-raising 2. Creating competencies for doctors, patients, business and politics through an "Academy for digital integrity" 3. Shape dialogue between stakeholders. Active participation of all stakeholders in relevant discussions and political decision-making processes (including EC, UN, ICANN, IGF, etc.). Develop standards and norms and bring them into legislation.

The general acceptance of digital technologies made possible by the listed measures results in a technological boost, increased sustainability, and the profitability of companies and strengthens human rights.

Nothing will ever be the same again. Even if the vaccine is found, there is no going back to the end of 2019. We are all poorer financially, we are marked by isolation and the loss of loved ones, but we have also gained more experience. One of these experiences is that digital integrity and respect for our digital personal rights are an asset that must be carefully managed and not merely commodities for the open market.

By Klaus Stoll, Digital Citizen – Klaus has over 30 years' practical experience in Internet governance and implementing ICTs for development and capacity building globally. He is a regular organizer and speaker at events, advisor to private, governmental and civil society organizations, lecturer, blogger and author of publications centering empowered digital citizenship, digital dignity and integrity. Visit Page

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