Do you use your smartphone to collect and analyse your performance at the gym? This is one example of how new health-related technologies are being integrated into our lives. This development leads to a growing need to collect, use and share health data electronically. Healthcare, medical research, as well as technological and pharmaceutical companies are increasingly dependent on collecting and sharing electronic health data, to develop healthcare and new medical and technical products.
This trend towards more and more sharing of personal health information raises several privacy issues. Previous studies suggest that people are willing to share their health information if the overall purpose is improved health. However, they are less willing to share their information with commercial enterprises and insurance companies, whose purposes may be unclear or do not meet people’s expectations. It is therefore important to investigate how individuals’ perceptions and attitudes change depending on the context in which their health data is used, what type of information is collected and which control mechanisms are in place to govern data sharing. In addition, there is a difference between what people say is important and what is revealed in their actual behaviour. In surveys, individuals often indicate that they value their personal information. At the same time, individuals share their personal information online despite little or no benefit to them or society.
Do you recognise yourself, do you just click on the “I agree” button when installing a health app that you want to use? This behaviour may at first glance suggest that people do not value their personal information very much. Is that a correct conclusion? Previous studies may not have taken into account the complexity of decisions about integrity where context-specific factors play a major role. For example, people may value sharing health data via a physical activity app on the phone differently. We have therefore chosen to conduct a study that uses a sophisticated multi-method approach that takes context-specific factors into account. It is an advantage in cybersecurity and privacy research, we believe, to combine qualitative methods with a quantitative stated preference method, such a discrete choice experiment (DCE). Such a mixed method approach can contribute to ethically improved practices and governance mechanisms in the digital world, where people’s health data are shared for multiple purposes.
You can read more about our research if you visit the website of our research team. Currently, we are analysing survey data from 2,000 participants from Sweden, Norway, Iceland, and the UK. The research group has expertise in law, philosophy, ethics and social sciences. On this broad basis, we explore people’s expectations and preferences, while identifying possible gaps within the ethical and legal frameworks. In this way, we want to contribute to making the growing use and sharing of electronic health data ethically informed, socially acceptable and in line with people’s expectations.
Jennifer Viberg Johansson, Postdoc researcher at the Centre for Research Ethics & Bioethics, working in the projects Governance of health data in cyberspace and PREFER.
Part of international collaborations