TRANSFoRm International Research Readiness instrument (TIRRE)
Registering data capable of being used for international primary care research.
An online questionnaire instrument to assess capacity and capability for international research linking primary care data to genetic databases and disease registers
Background:
TRANSFoRm is an FP7 funded programme to enable pan-European research as part of the EU Information Society Seventh Framework, no rx specifically its ICT research programme. The scientific aims of this project are to radically advance our understanding of healthcare IT systems. We are looking to link data sources from Primary Health Care, help Biobanks and Disease Registries to conduct international research.
Primary care data are widely used for research. However, they are much less frequently used on an international basis and usually not linked to genetic or disease registers. There are currently no readily available web-resources where it is possible to identify potential international research collaborators.
Objective:
To develop an instrument which assesses readiness of databases (Primary Care databases, Biobanks and Disease Registries) to participate in research.
The TIRRE project:
A first step was to develop a framework for the data that is needed to assess fitness and preparedness to participate in research. The instrument was developed through the European Federation for Medical Informatics (EFMI) and International Medical Informatics Association (IMIA) Primary Care Informatics (PCI) working groups. We developed a model for assessing readiness of the data source to participate in international research at five levels: Data and interoperability, Record System, Organisational, Socio-cultural and Study.
The data and interoperability level questions explore aspects of data that might limit interoperability between different data sources. The data and interoperability level includes data provenance, the lineage and source of any data. The next level of questions explore what we term the “Record system level”. The questions at this level are based on the taxonomy of errors associated with data extraction and the technical aspects of the data sources. The questions at organisational level primarily explore the scope of the health systems and how that will effect what data are recorded. The socio-cultural dimension explores what health problems are presented to primary care and how this might influence the data available. And finally, the last group of study level questions are based on the requirements for two simulated studies: one linking primary care data and cancer registries and one linking genetic and primary care data.
The second step was to perform an initial pilot of six databases. We made phone calls to the persons responsible for the databases. The pilot databases were identified by Work-Task WT 1.2 group of TRANSFoRm. From this pilot we refined the questions and developed an online version of the questionnaire.
Finally, we would be pleased to hear from primary care system vendors (who may have their own or affiliated primary care databases) interested in conducting research or with established links to disease registers.
