How could primary care meet the informatics needs of UK Biobank? A Scottish proposal

Frank M. Sullivan*, Jill P. Pell, Mary Sweetland, Andrew D. Morris

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

Abstract

UK Biobank is an ambitious post-genomic project involving the recruitment and follow-up of 500 000 volunteers age 45 to 69 years. Many primary care teams will be involved in the study directly or indirectly. The programme of research will use at least five data sources: paper-based questionnaires, blood samples, genotype information derived from the bloods, clinical/prescribing data from the medical records, and data on deaths. We describe three of the key challenges to primary care informatics posed by this project: patient recruitment, confidentiality, and data management. We then describe solutions proposed in Scotland, based on existing, technologies. Some of these may be applicable elsewhere in the other Regional Collaborating Centres and other large-scale collaborative projects which rely on primary care informatics.

Original languageEnglish
Pages (from-to)129-135
Number of pages7
JournalInformatics in Primary Care
Volume11
Issue number3
Publication statusPublished - 1 Dec 2003

Keywords

  • Confidentiality
  • Data management
  • Recruitment
  • Research
  • Retention

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