title: Developing a survey instrument to assess the readiness of primary care data, genetic and disease registries to conduct linked research: TRANSFoRm International Research Readiness (TIRRE) survey instrument.
abstract: BACKGROUND
  Clinical data are collected for routine care in family practice; there are also a growing number of genetic and cancer registry data repositories. The Translational Research and Patient Safety in Europe (TRANSFoRm) project seeks to facilitate research using linked data from more than one source. We performed a requirements analysis which identified a wide range of data and business process requirements that need to be met before linking primary care and either genetic or disease registry data.
  
  
  OBJECTIVE
  To develop a survey to assess the readiness of data repositories to participate in linked research - the Transform International Research Readiness (TIRRE) survey.
  
  
  METHODS
  We develop the questionnaire based on our requirement analysis; with questions at micro-, meso- and macro levels of granularity, study-specific questions about diabetes and gastro-oesophageal reflux disease (GORD), and research track record. The scope of the data required was extensive. We piloted this instrument, conducting ten preliminary telephone interviews to evaluate the response to the questionnaire.
  
  
  RESULTS
  Using feedback gained from these interviews we revised the questionnaire; clarifying questions that were difficult to answer and utilising skip logic to create different series of questions for the various types of data repository. We simplified the questionnaire replacing free-text responses with yes/no or picking list options, wherever possible. We placed the final questionnaire online and encouraged its use (www.clininf.eu/jointirre/info.html).
  
  
  CONCLUSIONS
  Limited field testing suggests that TIRRE is capable of collecting comprehensive and relevant data about the suitability and readiness of data repositories to participate in linked data research.
authors.affiliation: Department of Health Care Management and Policy, University of Surrey, Guildford, UK.
authors.forename: Emily
authors.initials: E
authors.lastname: Leppenwell
authors.forename: Simon
authors.initials: S
authors.lastname: de Lusignan
authors.forename: Marilia Tristan
authors.initials: MT
authors.lastname: Vicente
authors.forename: Georgios
authors.initials: G
authors.lastname: Michalakidis
authors.forename: Paul
authors.initials: P
authors.lastname: Krause
authors.forename: Steve
authors.initials: S
authors.lastname: Thompson
authors.forename: Mark
authors.initials: M
authors.lastname: McGilchrist
authors.forename: Frank
authors.initials: F
authors.lastname: Sullivan
authors.forename: Terry
authors.initials: T
authors.lastname: Desombre
authors.forename: Adel
authors.initials: A
authors.lastname: Taweel
authors.forename: Brendan
authors.initials: B
authors.lastname: Delaney
mesh_terms: D003625:Data Collection; D030541:Databases, Genetic; D005060:Europe; D006801:Humans; D007407:Interviews as Topic; D008498:Medical Record Linkage; D016347:Medical Records Systems, Computerized; D011320:Primary Health Care; D012042:Registries; D012107:Research Design; D011795:Surveys and Questionnaires; D057170:Translational Research, Biomedical