What is 'Health Data'?
Whilst the term ‘health data’ might at one time have been used to refer to information collected about patients in clinical and diagnostic settings, advances in processing capacity have widened the remit of data now considered to be relevant to one’s health.
The term 'health data' commonly encapsulates data produced through research, data collected through mobile applications or wearable devices that detect health or lifestyle information; and self-reported data provided through social media platforms and websites.
It might also include information volunteered to service providers as a requirement of service provision (e.g. travel insurance), or data collected through customer loyalty or membership card schemes.
Advances in genetic testing and the testing of biological compounds more generally have also allowed diagnostic investigations to take place outside of the institutions and clinical settings in which they have traditionally taken place, with companies increasingly marketing health-relevant tests directly to individuals.
How is health data used?
In contrast to paper networks, digital networks enable data that is gathered locally to be instantly shared and replicated. Data collected in a particular setting can readily be transferred to multiple locations and used for a variety of purposes by different individuals or organizations.
There is a growing interest from governments around the world and institutions in both the public and private spheres, to access and use health data. Outside of traditional healthcare settings it might be used by companies to target particular products towards individuals, or in the case of insurance companies, to evaluate risk. International research consortiums collect and share data for different purposes across geographical borders, and research platforms allow these to be accessed by researchers across the globe.
These aggregated datasets hold an immense wealth of information and can be used for a range of purposes that could benefit society as a whole, including the development of safer and more reliable medicines that are individually targeted to the patient, and increased understanding of the factors that influence population health.
What do we want to know?
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 societal values regarding privacy and data sharing so that we can understand the level of risk that individuals are willing to accept when it comes to sharing 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, as the scope of potential data use grows the capacity of healthcare professionals to influence data sharing decisions challenges the authority with which they can provide assurance.
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.
How will we find this out?
Our work has 2 main components: desk based research and stakeholder consultation.
As data providers, members of the public are considered to be one of our main stakeholder groups.
We will hold focus groups with citizens and experts in Sweden, Iceland and the UK to explore their understanding of current data sharing processes, preferences towards decision making and how they think permissions processes could be improved, and how they evaluate risk when providing health relevant data in different contexts.
We will then design an online questionnaire and disseminate it in each of these countries, and in Norway. The questionnaire aims to establish how people judge and respond to risk, how they balance this against potential rewards when making decisions about their data, and how contraventions against the decisions they have made would impact on their trust in the system.
Who is this research for?
The findings from this work are intended to be useful for a range of groups including:
data protection professionals
regulators and lawyers
members of the general public
patients and patient organisations
professionals working in the healthcare field
researchers and business leaders working in the commercial sector
What are the intended benefits?
Help healthcare professionals, hospital managers, biotechnology and pharmaceutical firms, and regulators to identify emerging clinical applications of these new technologies that are likely to be relevant to their work in the mid-to near term future.
Incorporate the needs and perspectives of patients and charities on the value of different biomodifying technologies and the ways in which they might be made available as new medical products and services.
Provide guidance on the legal and ethical requirements and responsibilities of service providers operating or planning to operate in this space
Help to shape viable business models for new products and services based on these technologies.
Produce an evidence-base on the social, regulatory and organisational implications of current research trajectories and how biomodifying technologies might be translated to the clinic.
How is this research funded?
This research is funded by NordForsk [grant number 81105] and the Economic and Social Research Council (part of UK Research and Innovation).