Robertson Ann R R, Smith Pam, Sood Harpreet S, Cresswell Kathrin, Nurmatov Ulugbek Nurmatov, Sheikh Aziz
The University of Edinburgh.
National Health Service (NHS) England, London.
J Innov Health Inform. 2016 Oct 12;23(3):847. doi: 10.14236/jhi.v23i3.847.
Timely progress with attaining benefits from Health Information Technology (HIT) investments requires UK policymakers and others to negotiate challenges in developing structures and processes to catalyse the trustworthy secondary uses of HIT-derived data.
We aimed to uncover expert insights into perceived barriers and facilitators for maximising safe and secure secondary uses of HIT-derived data in the UK.
We purposively selected individuals from a range of disciplines in the UK and abroad to participate in a thematically analysed, semi-structured interview study.
We identified a main theme of 'tightrope walking' from our interviews (n = 23), reflecting trying to balance different stakeholders' views and priorities, with sub-themes of 'a culture of caution', 'fuzzy boundaries' and 'cultivating the ground'. The public interest concept was fundamental to interviewees' support for secondary uses of HIT-derived data. Small scale and prior collaborative relationships facilitated progress. Involving commercial companies, improving data quality, achieving proportionate governance and capacity building remained challenges.
One challenge will be scaling up data linkage successes more evident internationally with regional population datasets. Within the UK, devolved nations have the advantage that 'small scale' encompasses national datasets. Proportionate governance principles developed in Scotland could be more widely applicable, while lessons on public engagement might be learned from Western Australia. A UK policy focus now should be on expediting large-scale demonstrator projects and effectively communicating their findings and impact. Progress could be jeopardised if national data protection laws were superseded by any Europen Union-wide regulation governing personal data.
要从健康信息技术（HIT）投资中及时获得收益，英国政策制定者及其他相关方需要应对在构建结构和流程以促进对HIT衍生数据进行可靠二次利用方面的挑战。
我们旨在挖掘专家对于在英国最大化安全可靠地二次利用HIT衍生数据的感知障碍和促进因素的见解。
我们有目的地从英国和国外的一系列学科中挑选人员参与一项进行主题分析的半结构化访谈研究。
我们从访谈（n = 23）中确定了一个“走钢丝”的主要主题，反映出试图平衡不同利益相关者的观点和优先事项，还有“谨慎文化”“模糊界限”和“耕耘基础”等子主题。公共利益概念是受访者支持对HIT衍生数据进行二次利用的根本所在。小规模和先前的合作关系促进了进展。让商业公司参与、提高数据质量、实现适度治理和能力建设仍然是挑战。
一项挑战将是扩大数据关联方面的成功，而这在国际上利用区域人口数据集更为明显。在英国，权力下放的国家具有“小规模”涵盖国家数据集的优势。苏格兰制定的适度治理原则可能更具广泛适用性，而在公众参与方面的经验教训或许可以从西澳大利亚州汲取。英国目前的政策重点应是加快大规模示范项目，并有效传达其研究结果和影响。如果国家数据保护法被任何欧盟范围内关于个人数据的法规所取代，进展可能会受到损害。
