An instrument to identify computerised primary care research networks, genetic and disease registries prepared to conduct linked research: TRANSFoRm International Research Readiness (TIRRE) survey

Abstract

PurposeThe Translational Research and Patients safety in Europe (TRANSFoRm) project aims to integrate primary care with clinical research whilst improving patient safety. The TRANSFoRm International Research Readiness survey (TIRRE) aims to demonstrate data use through two linked data studies and by identifying clinical data repositories and genetic databases or disease registries prepared to participate in linked research.MethodThe TIRRE survey collects data at micro-, meso- and macro-levels of granularity; to fulfil data, study specific, business, geographical and readiness requirements of potential data providers for the TRANSFoRm demonstration studies. We used descriptive statistics to differentiate between demonstration-study compliant and non-compliant repositories. We only included surveys with >70% of questions answered in our final analysis, reporting the odds ratio (OR) of positive responses associated with a demonstration-study compliant data provider.ResultsWe contacted 531 organisations within the Eurpean Union (EU). Two declined to supply information; 56 made a valid response and a further 26 made a partial response. Of the 56 valid responses, 29 were databases of primary care data, 12 were genetic databases and 15 were cancer registries. The demonstration compliant primary care sites made 2098 positive responses compared with 268 in non-use-case compliant data sources [OR: 4.59, 95% confidence interval (CI): 3.93–5.35, p < 0.008]; for genetic databases: 380:44 (OR: 6.13, 95% CI: 4.25–8.85, p < 0.008) and cancer registries: 553:44 (OR: 5.87, 95% CI: 4.13–8.34, p < 0.008).ConclusionsTIRRE comprehensively assesses the preparedness of data repositories to participate in specific research projects. Multiple contacts about hypothetical participation in research identified few potential sites.

A Conceptual Framework of Data Readiness: The Contextual Intersection of Quality, Availability, Interoperability, and Provenance

“…In applied instances, interoperability seemed to be a focus of national and international infrastructure 15,19,30 and research networks. 14,33,34 In addition, a significant body of literature noted interoperability as a fundamental construct to assess for the viability of HIT applications. 26,27,35 Interoperability is often used as an umbrella term for data exchange (reading and writing); in the literature we explored, it appears that the most frequent use of interoperability (if clearly defined) is the use of data standards to facilitate data exchange.…”

In this issue – assumptions, openness, apps, collaborative working and a new editor

“…Our second paper is one I co-authored, at an attempt to comprehensively survey sources of routine data across Europe. Whilst we conceived the perfect survey that would capture the relevant data,3 only 56 of the 531 databases we contacted gave complete information 4. By way of complete contrast, we hear about a framework for comprehensive data management for newborn children 5…”

Why digitally-enabled health system transformation needs different forms of innovation

“…For instance, connecting existing health information infrastructures at scale can enable population risk management and help to establish new transformative healthsystem models. 9 Promoting product innovation in healthcare is necessary but insufficient for transforming health systems as it may unhelpfully direct attention towards automation of a limited set of activities at the expense of wider transformation. 10 There is therefore an…”

“…For instance, connecting existing health information infrastructures at scale can enable population risk management and help to establish new transformative health-system models. 9 …”