A Scotland-wide Data Linkage Framework for Statistics and Research: Consultation Paper on the Aims and Guiding Principles

B: Questions & Answers for data subjects and custodians

Q Doesn't Scottish Government link all the data it holds about citizens already?
A No. Data linkage is not new and it does happen already to some extent, (mostly within the health sector, where different records from different systems are sometimes linked to provide a better understanding of diseases and so on) but Scottish Government does not link all data held about citizens. The aim of this framework is to enable data linkages to occur within and across sectors when there is a strong argument that the public good would be served by the statistical information that would result.

Q Will Scottish Ministers or other politicians be given access to identifiable personal data?
A No. Access to identifiable personal data is strictly controlled and will continue to be strictly controlled. The objective of the Data Linkage Framework is to facilitate scientifically sound and ethically robust research and statistics through the appropriate and safe use of data. That means only trusted researchers will be given access to personal data with names and other direct identifiers removed.

Q If I don't want my personal data used in any data linkage will I be able to opt out?
A When data are collected, it is best practice for data subjects to be made fully aware of the uses and potential uses of that data. For example, when data are collected through the Scottish Health Survey participants are asked whether they are willing for the data to be linked to health administrative data for research purposes, and if the participant says no then their Health Survey data is excluded from any linkage. It is not always a practical or sensible option though to put in place a system whereby a person can request that their data is identified and removed from every dataset used in a linkage project. Self-selection can bias the results and therefore prevent getting the full benefit from research. In other cases it may not be possible to contact data subjects when data collected in the past are being reused for new purposes.

Q Will this give my GP, or any other service access to my personal information held in systems across the country?
A No. The Data Linkage Framework aims to enable secure data linkages for statistical and research purposes only. It does not address data linkage for operational purposes, such as identifying individual people requiring a service, and it does not change the requirement for data custodians to protect and limit access to the data they hold.

Q Will linked data be sold to commercial organisations?
A No. The purpose of this framework is NOT to allow the public sector to profit from data it holds about citizens, and the framework makes no allowances for this to occur.