| Zusammenfassung |
Using "Smart Data" from sources like supermarket loyalty cards could be a big help for health and social science research. Smart Data are like logs of our actions when we use different services, such as shops. Research using shopping records has already taught us about health issues, from diets and food security; to detecting cancer early and understanding mental health in different groups of people. Shopping records can provide us with detailed information about how people behave, such as what types of food they buy, food budgeting, lifestyle choices, and health related habits such as smoking. But using this data for research comes with challenges, like making sure it's accurate and that people trust it's used ethically and securely. Our project aims to identify the best way to link Smart Data to data from participants in Longitudinal Population Studies (LPS). LPS are groups of people that researchers track over many years, often since their birth. Scientists conduct medical exams and ask questions about participants lives through surveys. These studies help us learn how various health and social issues unfold over time, and they also pinpoint factors like the environment that might influence these developments. By linking shopping records into LPS, we can improve the data and use it to answer new questions and provide new insights into how people behave and trends in the population. These linked data will also help other researchers to understand biases and data quality issues in the shopping data. Understanding of biases will make research more accurate and fairer by being more inclusive of different population groups. However, to be able to link the data, we need first to understand what participants from longitudinal studies think about these kinds of data being used for health and social science research. We will need to be careful about the practical, ethical, and other concerns when doing this across different LPS whose participants have different characteristics. For example, elderly participants may feel differently to younger participants, and views may differ in different parts of the UK. We also know that many people might not know much about this type of research, so in this project we will develop communication materials with public and participant contributors. To handle these issues, we want to work closely with the LPS participants, LPS leaders, data managers and broader LPS community. We're teaming up with the UK Longitudinal Linkage Collaboration (UK LLC), which brings together data from 24 UK LPS in a safe environment. This collaboration helps us create a consistent approach across multiple studies. We will work with public contributors from UK LLC to ask them how they feel about shopping data being used for health and social science studies, as well help us to design participant communication materials about linking shopping data, such as videos and infographics. We will further work with five partnering longitudinal studies - the 1970 British Cohort Study, Millennium Cohort Study, Generation Scotland, Twins UK, and Understanding Society - to engage their participants to help us to understand whether such data linkage is acceptable and possible in these studies and other studies too. This will mean all our thinking is properly informed by public and participant views. Over a year, our project aims to lay the groundwork for using loyalty card data in health and social science research. We want to explore how feasible and acceptable it is to use shopping data with different LPS, understand what worries people might have, create ethical guidelines for future studies, and figure out how to communicate with the public about it. We're also building a community of professionals and researchers interested in this type of research. This will provide the first step towards understanding how this kind of data can be used ethically and effectively across different studies. |
