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

Journal of Innovation in Health Informatics

Marilia Tristan Vicente¹  Emily Leppenwell²  Mark McGilchrist³  Georgios Michalakidis⁴  Paul Krause⁵  Adel Taweel⁶  Simon de Lusignan⁷  Steve Thompson⁸  Terry Desombre⁹  Brendan Delaney^1,10 

[1] Division of Population Health Sciences and Education, St George’s – University of London, UK;Hon Research Assistant, Department of Health Care Management and Policy, University of Surrey, Guildford, UK;Hon. Research Assistant, Department of Health Care Management and Policy, University of Surrey, Guildford, UK;Intern/Hon Research Assistant, Division of Population Health Sciences and Education, St George’s – University of London, UK;Postgraduate Researcher, Department of Computing, University of Surrey, Guildford, UK;Professor of Health Care Management and Head, Department of Health Care Management and Policy, University of Surrey, Guildford, UK;Professor of Primary Care and Clinical Informatics, Department of Health Care Management and Policy, University of Surrey, Guildford, UK;Professor of Software Engineering, Department of Computing, University of Surrey, Guildford, UK;Senior Research Fellow, Division of Population Health Science, University of Dundee, UK;Technical Director and Lecturer in Software Engineering, Department of Primary Care Research and Public Health Sciences, King’s College London, UK;

关键词: computerised medical record systems;    data collection;    diabetes mellitus;    general practice;    genetic databases;    medical informatics;    oesophageal diseases;    primary health care;    registries;   

DOI  :  10.14236/jhi.v20i3.26

来源: DOAJ

【 摘 要 】

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.

Objectives To develop a survey to assess the readiness of data repositories to participate in linked research – the Transform International Research Readiness (TIRRE) survey.

Method 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).

Conclusion 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.

【 授权许可】

Unknown