Projects per year
Abstract / Description of output
The Scottish Health Informatics Programme is an ambitious, Scotland-wide research platform for the collation, management, dissemination and analysis of electronic patient records. It is creating a research portal for electronic patient records held by NHS Scotland that will provide rapid, secure access to the type of data required by population health scientists. However, such data linkage and subsequent use raise a range of social and ethical issues. A concurrent programme of public engagement is exploring opinions and concerns in order to develop a transparent, publicly acceptable approach to Scottish Health Informatics Programme's work. The first phase involved a series of 10 focus groups across Scotland with a diversity of participants. These data have been analysed qualitatively and inductively. Key concerns relate to security of databases; what data will be used for and the extent to which patients can control the use of their data. A central theme throughout discussions was trust: participants were less concerned about uses of their data when they trusted the individual/organisation using it. A further important finding was that participants were very troubled about linking health data with non-health data for research purposes. These findings have important implications for the governance of health related data and research. They demonstrate the importance of engaging with public views at every stage of a programme's development if it is to achieve high levels of trust and transparency.
FingerprintDive into the research topics of 'Public responses to the Scottish health informatics programme: preferences and concerns around the use of personal medical records in research'. Together they form a unique fingerprint.
Pagliari, C., 19 Dec 2019
Research output: Non-textual form › Digital or Visual ProductsOpen Access
Should Individuals Share Their Genomic Profiles? Researchers and patient advocates wrestle with privacy and ethical concernsTibbetts, J. & Pagliari, C., Sept 2018, In: BioScience. 68, 9
Research output: Contribution to journal › Comment/debate