title: Development of a pseudo/anonymised primary care research database: Proof-of-concept study.
abstract: General practice records present a comprehensive source of data that could form a variety of anonymised or pseudonymised research databases to aid identification of potential research participants regardless of location. A proof-of-concept study was undertaken to extract data from general practice systems in 15 practices across the region to form pseudo and anonymised research data sets. Two feasibility studies and a disease surveillance study compared numbers of potential study participants and accuracy of disease prevalence, respectively. There was a marked reduction in screening time and increase in numbers of potential study participants identified with the research repository compared with conventional methods. Accurate disease prevalence was established and enhanced with the addition of selective text mining. This study confirms the potential for development of national anonymised research database from general practice records in addition to improving data collection for local or national audits and epidemiological projects.
authors.affiliation: University of the Highlands and Islands, UK sandra.macrury@uhi.ac.uk.
authors.forename: Sandra
authors.initials: S
authors.lastname: MacRury
authors.affiliation: University of the Highlands and Islands, UK.
authors.forename: Jim
authors.initials: J
authors.lastname: Finlayson
authors.affiliation: Cromarty Medical Practice, UK.
authors.forename: Susan
authors.initials: S
authors.lastname: Hussey-Wilson
authors.affiliation: NHS Highland, UK.
authors.forename: Samantha
authors.initials: S
authors.lastname: Holden
mesh_terms: D003219:Confidentiality / Q000592:standards*; D003625:Data Collection / Q000379:methods; D057225:Data Mining; D016208:Databases, Factual / Q000706:statistics & numerical data*; D057286:Electronic Health Records / Q000706:statistics & numerical data*; D005240:Feasibility Studies; D006801:Humans; D011320:Primary Health Care
keywords: data security and confidentiality; databases and data mining; ehealth; electronic health records; freetext; primary care; pseudonymise; text mining