International Primary Care Respiratory Group, Aberdeen, UK.
Department of General Practice, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands.
NPJ Prim Care Respir Med. 2018 Mar 8;28(1):8. doi: 10.1038/s41533-018-0075-9.
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.
医疗保健规划者、提供者和研究人员越来越意识到，需要更好地利用常规收集的健康数据，将其转化为可操作的信息，以提高医疗保健效率和改善患者的治疗效果。人们也越来越认识到真实世界研究的重要性，这种研究招募的是具有代表性的初级保健人群，并由初级保健专业人员真实地进行干预措施评估。UNLOCK 小组是一个由来自 15 个国家的初级保健研究人员和从业者组成的国际合作组织。它协调和共享了 COPD 和哮喘的诊断和预后变量数据集，以回答在六年期间内从事初级保健工作的专业人员提出的有意义的研究问题。在此期间，UNLOCK 小组使用来自不同背景的未选择的初级保健人群的数据进行了多项研究，以评估疾病负担、多种合并症、治疗和随访情况。然而，实际和结构上的限制阻碍了 UNLOCK 小组将研究想法转化为研究的能力。本研究探讨了 UNLOCK 小组及其参与者在作为研究人员和初级保健从业者合作回答初级保健研究问题时所经历的限制、挑战和成功。该研究为未来需要跨境数据共享的研究和合作提供了经验教训。它还探讨了与公共卫生、处方或医院数据等其他数据集相比，促进初级保健数据交换所面临的具体挑战，以及可能用于克服这些挑战的机制。
