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解锁数据:决策者对跨部门数据共享与关联的看法,这是公共卫生政策与实践全系统方法的一部分。

Unlocking data: Decision-maker perspectives on cross-sectoral data sharing and linkage as part of a whole-systems approach to public health policy and practice.

作者信息

Tweed Emily, Cimova Kristina, Craig Peter, Allik Mirjam, Brown Denise, Campbell Mhairi, Henderson David, Mayor Charlie, Meier Petra, Watson Nick

机构信息

MRC/CSO Social and Public Health Sciences Unit, University of Glasgow, Glasgow, UK.

Usher Institute, University of Edinburgh, Edinburgh, UK.

出版信息

Public Health Res (Southampt). 2024 Nov 20:1-30. doi: 10.3310/KYTW2173.

Abstract

BACKGROUND

Secondary data from different policy sectors can provide unique insights into the social, environmental, economic and political determinants of health. This is especially pertinent in the context of whole-systems approaches to healthy public policy, which typically combine cross-sectoral collaboration with the application of theoretical insights from systems science. However, the sharing and linkage of data between different sectors are still relatively rare. Previous research has documented the perspectives of researchers and members of the public on data sharing, especially healthcare data, but has not engaged with relevant policy and practice decision-makers.

AIM

We sought to work collaboratively with decision-makers relevant to healthy public policy and practice in Scotland to identify practical ways that cross-sectoral data sharing and linkage could be used to best effect to improve health and reduce health inequalities.

METHODS

We facilitated three sequential stakeholder workshops with 20 participants from local and central government, public health teams, Health and Social Care Partnerships, the third sector, organisations which support data-intensive research and public representatives from across Scotland. Workshops were informed by two scoping reviews (carried out in June 2021) and three case studies of existing cross-sectoral linkage projects. Workshop activities included brainstorming of factors that would help participants make better decisions in their current role; reflective questions on lessons learnt from the case studies; and identifying and prioritising recommendations for change. Findings were synthesised using thematic analysis.

SETTING AND SCOPE

Scotland; public and third sector data.

RESULTS

Based on the workshops, and supported by the reviews and case studies, we created a visual representation of the use of evidence, and secondary data in particular, in decision-making for healthy public policy and practice. This covered three key overarching themes: differing understandings of evidence; diverse functions of evidence; and factors affecting use (such as technical, political and institutional, workforce and governance). Building on this, workshop participants identified six guiding principles for cross-sectoral data sharing and linkage: it should be pragmatic; participatory; ambitious; fair; iterative; with holistic and proportionate governance. Participants proposed 21 practical actions to this end, including: a strategic approach to identifying and sharing key data sets; streamlining governance processes (e.g. through standardised data sharing agreements; central data repositories; and a focus on reusable data resources) and building workforce capacity. To make these possible, participants identified a need for strong political and organisational leadership as well as a transparent and inclusive public conversation.

LIMITATIONS

Participation from some stakeholders was limited by workload pressures associated with the COVID-19 pandemic. No consensus was reached on the impact, effort, and/or timing of some recommendations. Findings were closely informed by the Scottish context but are nonetheless likely to be relevant to other jurisdictions.

CONCLUSIONS

There is broad consensus among key stakeholders that linked cross-sectoral data can be used far more extensively for public health decision-making than it is at present. No single change will lead to improved use of such data: a range of technical, organisational and political constraints must be addressed.

FUNDING

This article presents independent research funded by the National Institute for Health and Care Research (NIHR) Public Health Research programme as award number NIHR133585.

摘要

背景

来自不同政策部门的二手数据能够为健康的社会、环境、经济和政治决定因素提供独特见解。在针对健康公共政策的全系统方法背景下,这一点尤为相关,该方法通常将跨部门合作与系统科学的理论见解应用相结合。然而,不同部门之间的数据共享和关联仍然相对较少。以往研究记录了研究人员和公众对数据共享(尤其是医疗保健数据)的看法,但尚未涉及相关政策和实践决策者。

目的

我们试图与苏格兰健康公共政策和实践的相关决策者合作,确定跨部门数据共享和关联能够以最佳效果用于改善健康和减少健康不平等的切实可行方法。

方法

我们为来自地方和中央政府、公共卫生团队、卫生和社会护理伙伴关系、第三部门、支持数据密集型研究的组织以及苏格兰各地公共代表的20名参与者举办了三场连续的利益相关者研讨会。研讨会参考了两项范围界定审查(于2021年6月开展)以及现有跨部门关联项目的三个案例研究。研讨会活动包括头脑风暴有助于参与者在当前角色中做出更好决策的因素;对从案例研究中学到的经验教训进行反思性提问;以及确定变革建议并按优先顺序排列。研究结果采用主题分析法进行综合。

背景与范围

苏格兰;公共和第三部门数据。

结果

基于研讨会,并在审查和案例研究的支持下,我们创建了一个关于证据,特别是二手数据在健康公共政策和实践决策中的使用的可视化呈现。这涵盖了三个关键总体主题:对证据的不同理解;证据的多样功能;以及影响使用的因素(如技术、政治和制度、劳动力和治理方面)。在此基础上,研讨会参与者确定了跨部门数据共享和关联的六项指导原则:应注重实际;具有参与性;目标远大;公平;反复迭代;具备整体且适度的治理。为此,参与者提出了21项实际行动,包括:识别和共享关键数据集的战略方法;简化治理流程(例如通过标准化数据共享协议、中央数据存储库以及关注可重复使用的数据资源)以及建设劳动力能力。为实现这些目标,参与者确定需要强有力的政治和组织领导以及透明且包容的公众对话。

局限性

一些利益相关者的参与受到与新冠疫情相关的工作量压力限制。对于某些建议的影响、努力程度和/或时机未达成共识。研究结果受苏格兰背景的影响很大,但仍可能与其他司法管辖区相关。

结论

关键利益相关者之间已达成广泛共识,即关联的跨部门数据可用于公共卫生决策的程度目前远未得到充分利用。没有单一的变革能带来此类数据使用的改善:必须解决一系列技术、组织和政治方面的限制。

资金来源

本文介绍了由国家卫生与保健研究所在公共卫生研究项目资助下开展的独立研究,资助编号为NIHR133585。

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