Kelly Maria, O'Brien Katie M, Hannigan Ailish
National Cancer Registry Ireland, Building 6800, Cork Airport Business Park Kinsale Road, Cork, T12 CDF7, Ireland.
School of Medicine, University of Limerick, Limerick, V94 T9PX, Ireland.
HRB Open Res. 2021 May 26;4:17. doi: 10.12688/hrbopenres.13215.2. eCollection 2021.
: This study aims to examine the potential of currently available administrative health and social care data for palliative and end-of-life care (PEoLC) research in Ireland. Objectives include to i) identify data sources for PEoLC research ii) describe the challenges and opportunities of using these and iii) evaluate the impact of recent health system reforms and changes to data protection laws. : The 2017 Health Information and Quality Authority catalogue of health and social care datasets was cross-referenced with a recognised list of diseases with associated palliative care needs. Criteria to assess the datasets included population coverage, data collected, data dictionary and data model availability, and mechanisms for data access. : Nine datasets with potential for PEoLC research were identified, including death certificate data, hospital episode data, pharmacy claims data, one national survey, four disease registries (cancer, cystic fibrosis, motor neurone and interstitial lung disease) and a national renal transplant registry. The development of the health system in Ireland has resulted in i) a fragmented information infrastructure resulting in gaps in data collections particularly in the primary and community care sector where much palliative care is delivered, ii) ill-defined data governance arrangements across service providers, many of whom are not part of the publically funded health service and iii) systemic and temporal issues that affect data quality. Initiatives to improve data collections include introduction of i) patient unique identifiers, ii) health entity identifiers and iii) integration of the Eircode postcodes. Recently enacted general data protection and health research regulations will clarify legal and ethical requirements for data use. : Ongoing reform initiatives and recent changes to data privacy laws combined with detailed knowledge of the datasets, appropriate permissions, and good study design will facilitate future use of administrative health and social care data for PEoLC research in Ireland.
本研究旨在探讨爱尔兰目前可用的行政卫生和社会护理数据用于姑息治疗和临终关怀（PEoLC）研究的潜力。目标包括：i）识别PEoLC研究的数据来源；ii）描述使用这些数据的挑战和机遇；iii）评估近期卫生系统改革和数据保护法变更的影响。
将2017年卫生信息与质量管理局的卫生和社会护理数据集目录与一份公认的伴有姑息治疗需求的疾病清单进行交叉引用。评估数据集的标准包括人口覆盖范围、收集的数据、数据字典和数据模型可用性以及数据访问机制。
确定了九个有PEoLC研究潜力的数据集，包括死亡证明数据、医院病历数据、药房报销数据、一项全国性调查、四个疾病登记处（癌症、囊性纤维化、运动神经元病和间质性肺病）以及一个全国肾移植登记处。爱尔兰卫生系统的发展导致：i）信息基础设施分散，数据收集存在缺口，尤其是在提供大量姑息治疗的初级和社区护理部门；ii）各服务提供商之间的数据治理安排不明确，其中许多并非公共资助卫生服务的一部分；iii）影响数据质量的系统性和时效性问题。改善数据收集的举措包括引入：i）患者唯一标识符；ii）卫生实体标识符；iii）Eircode邮政编码的整合。最近颁布的通用数据保护和健康研究法规将明确数据使用的法律和道德要求。
正在进行的改革举措以及数据隐私法的近期变更，再加上对数据集的详细了解、适当的权限和良好的研究设计，将有助于未来在爱尔兰将行政卫生和社会护理数据用于PEoLC研究。
