Wyatt David, Cook Jenny, McKevitt Christopher
School of Population Health and Environmental Sciences, Faculty of Life Sciences and Medicine, King's College London, London, UK.
NIHR Biomedical Research Centre, Guy's and St. Thomas' NHS Foundation Trust and King's College London, London, UK.
BMJ Open. 2018 Jan 8;8(1):e019378. doi: 10.1136/bmjopen-2017-019378.
To investigate how different lay and professional groups perceive and understand the use of routinely collected general practice patient data for research, public health, service evaluation and commissioning.
DESIGN, METHOD, PARTICIPANTS AND SETTING: We conducted a multimethod, qualitative study. This entailed participant observation of the design and delivery of a series of deliberative engagement events about a local patient database made of routine primary care data. We also completed semistructured interviews with key professionals involved in the database. Qualitative data were thematically analysed. The research took place in an inner city borough in England.
Of the community groups who participated in the six engagement events (111 individual citizens), five were health focused. It was difficult to recruit other types of organisations. Participants supported the uses of the database, but it was unclear how well they understood its scope and purpose. They had concerns about transparency, security and the potential misuse of data. Overall, they were more focused on the need for immediate investment in primary care capacity than data infrastructures to improve future health. The 10 interviewed professionals identified the purpose of the database in different ways, according to their interests. They emphasised the promise of the database as a resource in health research in its own right and in linking it to other datasets.
Findings demonstrate positivity to the uses of this local database, but a disconnect between the long-term purposes of the database and participants' short-term priorities for healthcare quality. Varying understandings of the database and the potential for it to be used in multiple different ways in the future cement a need for systematic and routine public engagement to develop and maintain public awareness. Problems recruiting community groups signal a need to consider how we engage wider audiences more effectively.
探讨不同的非专业群体和专业群体如何看待和理解将常规收集的全科医疗患者数据用于研究、公共卫生、服务评估和委托工作。
设计、方法、参与者与研究背景：我们开展了一项多方法定性研究。这包括对一系列关于由常规初级保健数据构成的本地患者数据库的设计与交付过程进行参与式观察。我们还对参与该数据库工作的关键专业人员进行了半结构化访谈。对定性数据进行了主题分析。研究在英格兰的一个市中心城区进行。
在参与六次参与式活动的社区群体（111名个体公民）中，有五个群体关注健康。招募其他类型的组织很困难。参与者支持数据库的用途，但他们对其范围和目的的理解程度尚不清楚。他们担心透明度、安全性以及数据的潜在滥用问题。总体而言，他们更关注立即投资提升初级保健能力的需求，而非改善未来健康状况的数据基础设施。接受访谈的10名专业人员根据自身兴趣以不同方式确定了数据库的目的。他们强调该数据库本身作为健康研究资源以及将其与其他数据集相联系的前景。
研究结果表明对这个本地数据库的用途持积极态度，但数据库的长期目的与参与者对医疗质量的短期优先事项之间存在脱节。对数据库的理解各异，以及它未来有可能以多种不同方式被使用，这凸显了进行系统且常规的公众参与以培养和维持公众意识的必要性。招募社区群体时遇到的问题表明有必要思考如何更有效地吸引更广泛的受众。
