In the era of social media platforms and AI technology, digital healthcare is becoming a reality. Patients are experimenting with the new smart solutions, exploring new ways to manage their health issues, while doctors are now prescribing wearable devices along with mobile applications, and interacting remotely with their patients, sharing data and suggesting treatments. Digital technologies are indeed driving a real revolution in the healthcare space.
But what about this massive amount of data, users and patients are sharing every day with their mobile application or device?
There are now a myriad of applications that track our diets, provide support with the management of chronic conditions, help us take our medication on time or track our baby’s growth while pregnant. Users trust them with data on their everyday habits, their disease progress, their mental health, even information on their menstrual cycles or sexual activity. Massive amounts of data are collected and stored, and most users are literally in the dark.
Healthcare providers, biopharma companies, insurance companies and social media platforms store information, not only about birthdays, preferences and “likes”, but data on symptoms, treatments and health worries. Consequently, it comes as no surprise that many people are raising concerns about data security and the ethical implications of healthcare data storage.
And there are plenty of examples…Back in 2017, it was revealed that Facebook was gathering and storing mental health data without users’ consent. In February 2019, it emerged that a number of Facebook apps had been sending users’ health data such as blood pressure and ovulation status to Facebook, once again without users’ informed consent. Pregnancy, period and fitness applications emerged that had been sharing their users’ data with their employers and health insurers. And the list goes on…
These examples are concerning, given the alarming ways these data could be used by insurance companies or employees to bias selection processes, leading to discrimination, racist, and sexist behavior.
In order for both patients and healthcare companies to benefit in the best way possible from the digital era in the healthcare space, some things should be taken into account:
- European Union’s General Data Protection Regulation (GDPR) mandates that organizations must have informed user consent before they collect sensitive information. It is also vital for tech companies to inform consumers (and patients!) on exactly how and when their data will be used and give them the option to refuse consent
- Healthcare and tech companies have to reassure users that their data would be protected, by building the appropriate technical safeguards. If they fail to do so, they have to face legal consequences
- Patients should be responsible users and always read carefully the conditions of use and the privacy policies
- Governments should take all the important steps in order to safeguard consumers’ personal data, keeping up with the latest technology, by creating up-to-date legal frameworks surrounding healthcare data.
We all anticipate experiencing the quality of life improvements that Digital Healthcare will bring to our lives. But we should not forget the people behind the data.
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