What will this research investigate?
The potential benefits of accessing health data must be weighed against the risks posed by data misuse, such as:
infringements upon individuals’ and families’ rights to privacy
exposure of individuals to harms, such as social and insurance discrimination based on genetic pre-disposition
decisions and processes that weaken societal trust in health care providers and governments.
The challenge is to find ways of controlling data use so that its benefits can be realised whilst protecting individuals from harm.
We want to understand people's values regarding privacy, the use of data and the sharing of data so that we can understand the level of risk that individuals are willing to accept when it comes to the use of their information.
Regarding health data, patient trust has until now been influenced by the reputation of treating clinicians, healthcare staff and clinical settings, as well as research institutions. Whilst these influences persist in the digital era, the authority with which healthcare professionals can offer sound advice on possible data uses is challenged by the ever expanding set of possibilities.
When health-relevant information is volunteered outside of regulated healthcare settings we have little understanding of citizens’ expectations of privacy.
This project will increase our understanding of the factors that influence an individual’s decision to share data, their expectations towards decision making for its use and accountability when data is used inappropriately.
As data flows between different places and is used by different people, or for different purposes, it changes context. We believe that the extent to which the context differs impacts on the legitimacy of data use, therefore our research will specifically address the following questions:
Does context have a bearing on perceptions of risk and trustworthiness in health cyberspace?
What is the relationship between trust and resilience?
What governance mechanisms could inspire trust and resilience in health cyberspace?
The research will allow us to determine whether existing measures are appropriate for protecting health data. We also want to deepen our understanding of how health data is being used now and might be used in the future, and investigate how data protection systems used elsewhere might help to control the use of health data.