Project title: Investigating Consent Rates for Record Linkage (SHARE-CoRaL)
Team: Imke Herold, Yuri Pettinicchi, Arne Bethmann, Jessica Irving
Consider being asked if you are comfortable with administrative data collected about you – such as health records or employment history – being linked to a social science survey you’re taking part in. Would you agree?
In this project, we pose such a question in numerous languages across 28 countries, each with its own cultural norms, privacy laws, and attitudes toward data linking. By examining the factors that influence consent across these diverse contexts, we want to understand how individuals’ willingness to link data varies.
Titled Investigating Consent Rates for Linking Survey and Administrative Data in a Multilingual, Multinational, and Multicultural Context, this project explores individuals’ willingness to consent to the linking of their administrative data with their survey responses. This is crucial because linked data can provide researchers with far richer insights into social, health, and economic issues – if participants consent to it.
Obtaining consent for data linkage can be challenging, particularly across various languages, cultures, and legal frameworks. If consent rates vary significantly between countries, it could compromise the representativeness and accuracy of research in different countries.
How Are We Doing This?
The project uses data from the Survey of Health, Ageing and Retirement in Europe (SHARE), which includes participants from 27 European countries and Israel. As part of this effort, we have integrated questions into a pilot study, asking participants whether they would agree to link their data in a hypothetical scenario.
In SHARE, real-life consent for record linkage has already been collected from about 10 countries. However, this data was collected without standardisation and comes from different institutional contexts, making cross-national comparisons of consent rates difficult.
By incorporating hypothetical and real-life consent requests, we can now a) analyse and compare consent willingness across all 28 SHARE countries and b) compare past real-life consent rates with the stated preferences of survey participants, enabling us to better understand discrepancies between countries as well as stated intentions and actual behaviour for some countries.
What Do We Hope to Learn?
By posing this question across different countries and languages, we hope to answer questions such as:
- Do certain countries and linguistic identities have higher consent rates?
- Which demographics are more or less inclined to consent?
- Which types of data do people perceive to be most sensitive?
By shedding light on how people across different cultures and countries view data privacy and consent, this project is paving the way for more innovative, representative, and effective survey research in the future.
Presentations
Publications
This project is funded by the Pilot Project Award of the NIA-funded Network for Innovative Methods in Longitudinal Aging Studies, or NIMLAS (R24 AG077012-01).