Report. So-called activity trackers and a wide variety of health apps are growing increasingly popular. Governmental health systems, as well as private companies, see the large amounts of data generated by these devices as a regular gold mine. But a new report asserts that in a not so distant future this data could be used to create profiles of users, and not least, discriminate individuals. It is also likely that the consequences of these profiles will cause most problems for those who are already vulnerable, including individuals with various diagnoses or socially vulnerable groups of people.
People measure their blood pressure, pulse, how many steps and kilometers they have been walking, running and swimming. At the same time internet connected devices collect more and more data, as a part of what is known as Internet of Things.
In the EU the rules for handling these types of data are somewhat more firm than in the US, where there is a patchwork of legal work overlooking this area. Even with the slightly firmer rules in the EU, there is a need for more attention to this area, and a greater understanding of the fact that what might look like innocent data could lead to unfortunate consequences.
A new report from Center of Digital Democracy at American University in Washing, DC., outlines a list of recommendations, which regulatory bodies, as well as tech-industry, organizations and citizens, must work together to fulfill, in order to create a secure development of these new digital health technologies.
The report suggests that:
- All data from wearables and health technologies must be classified as sensitive
- Clear standards for collection of data must be developed. The user should, for example, have a right to delimit the amount of data collected about them.
- Companies should explain, in clear language, how they treat the data they collect. This should be supported by a well-defined terminology, making it possible to compare data collection processes across companies.
- Wearables and other health technologies should not share information about the user with third party in cases where commercial, marketing or promotion of other services are in play.
- Companies should make all data about the user available, as soon as this is requested, and without unreasonable cost.
- The way in which the data of users are anonymized should be made available and be subjected to independent verification
- In order to assert whether the users are properly informed about their choices concerning data sharing practices, the wearables and health apps should test whether their users actually understand their choices, and the terms of service should be written in an easily understandable language
- Self-regulating organizations should develop standards that cut across all sectors, as well as develop a process for an independent control of this
- Stakeholders in the digital health sector, including the companies behind the wearables and health apps, should develop processes for a fair use of health related data in marketing practices
The area of wearable health technologies is developing rapidly, and it is a great challenge to create an overview of the problems and risks associate with the growing collection of health related data. The report highlights, however, that it is possible to find the most important areas and the most influential stakeholders, and work towards a more informed development, which will help to ensure a fair use of our health data, in turn helping to avoid discrimination.