LAUSR

There is growing awareness amongst healthcare planners, providers and researchers of the need to make better use of routinely collected health data by translating it into actionable information that improves efficiency of healthcare and patient outcomes. There is also increased acceptance of the importance of real world research that recruits patients representative of primary care populations and evaluates interventions realistically delivered by primary care professionals. The UNLOCK Group is an international collaboration of primary care researchers and practitioners from 15 countries. It has coordinated and shared datasets of diagnostic and prognostic variables for COPD and asthma to answer research questions meaningful to professionals working in primary care over a 6-year period. Over this time the UNLOCK Group has undertaken several studies using data from unselected primary care populations from diverse contexts to evaluate the burden of disease, multiple morbidities, treatment and follow-up. However, practical and structural constraints have hampered the UNLOCK Group’s ability to translate research ideas into studies. This study explored the constraints, challenges and successes experienced by the UNLOCK Group and its participants’ learning as researchers and primary care practitioners collaborating to answer primary care research questions. The study identified lessons for future studies and collaborations that require data sharing across borders. It also explored specific challenges to fostering the exchange of primary care data in comparison to other datasets such as public health, prescribing or hospital data and mechanisms that may be used to overcome these.Primary care research: Using big data in chronic lung disease studiesEffective management of international primary care data sharing shows great potential to inform clinical practice for multiple diseases. The International Primary Care Research Group (IPCRG) was established in 2000 to progress sharing of big data between countries and support associated research projects. Liza Cragg of IPCRG in the UK and co-workers, reported on progress and limitations faced by one research group, UNLOCK, who are investigating the long-term impacts of chronic lung diseases. Cragg’s team interviewed UNLOCK members and analyzed results of individual research studies undertaken between 2010 and 2016. Constraints highlighted by researchers included inconsistencies across datasets, ethical concerns about data use, difficulties organizing international working groups and the voluntary nature of IPRCG work. Progress was slower than anticipated but several successful studies highlighted the potential for primary care data sharing to provide valuable insights.