Department of Geriatric Medicine, Radboud University Medical Center, Nijmegen, Netherlands ; Anu Research Centre, University College Cork, Cork, Ireland.
PLoS One. 2013 Dec 4;8(12):e81673. doi: 10.1371/journal.pone.0081673. eCollection 2013.
In 2008, the Ministry of Health, Welfare and Sport commissioned the National Care for the Elderly Programme. While numerous research projects in older persons' health care were to be conducted under this national agenda, the Programme further advocated the development of The Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS) which would be integrated into all funded research protocols. In this context, we describe TOPICS data sharing initiative (www.topics-mds.eu).
A working group drafted TOPICS-MDS prototype, which was subsequently approved by a multidisciplinary panel. Using instruments validated for older populations, information was collected on demographics, morbidity, quality of life, functional limitations, mental health, social functioning and health service utilisation. For informal caregivers, information was collected on demographics, hours of informal care and quality of life (including subjective care-related burden).
Between 2010 and 2013, a total of 41 research projects contributed data to TOPICS-MDS, resulting in preliminary data available for 32,310 older persons and 3,940 informal caregivers. The majority of studies sampled were from primary care settings and inclusion criteria differed across studies.
TOPICS-MDS is a public data repository which contains essential data to better understand health challenges experienced by older persons and informal caregivers. Such findings are relevant for countries where increasing health-related expenditure has necessitated the evaluation of contemporary health care delivery. Although open sharing of data can be difficult to achieve in practice, proactively addressing issues of data protection, conflicting data analysis requests and funding limitations during TOPICS-MDS developmental phase has fostered a data sharing culture. To date, TOPICS-MDS has been successfully incorporated into 41 research projects, thus supporting the feasibility of constructing a large (>30,000 observations), standardised dataset pooled from various study protocols with different sampling frameworks. This unique implementation strategy improves efficiency and facilitates individual-level data meta-analysis.
2008 年，卫生部、福利和体育部委托开展国家老年人护理计划。在这个国家议程下，将开展许多老年人保健方面的研究项目，该计划还主张开发老年人和非正式照顾者调查最小数据集（TOPICS-MDS），并将其纳入所有资助的研究方案中。在此背景下，我们描述了 TOPICS 数据共享计划（www.topics-mds.eu）。
一个工作组起草了 TOPICS-MDS 原型，随后由一个多学科小组批准。使用针对老年人验证过的工具，收集人口统计学、发病率、生活质量、功能限制、心理健康、社会功能和卫生服务利用等方面的信息。对于非正式照顾者，收集人口统计学、非正式照顾时间和生活质量（包括主观照顾相关负担）等方面的信息。
2010 年至 2013 年，共有 41 个研究项目为 TOPICS-MDS 提供了数据，共有 32310 名老年人和 3940 名非正式照顾者的初步数据可用。大多数抽样研究来自初级保健环境，研究纳入标准在不同研究中有所不同。
TOPICS-MDS 是一个公共数据存储库，其中包含更好地了解老年人和非正式照顾者所面临的健康挑战的基本数据。这些发现对于那些需要评估当代医疗保健服务提供情况的国家，与不断增加的与健康相关的支出有关。尽管在实践中开放共享数据可能具有挑战性，但在 TOPICS-MDS 开发阶段主动解决数据保护、数据分析请求冲突和资金限制等问题，促进了数据共享文化的发展。迄今为止，TOPICS-MDS 已成功纳入 41 个研究项目，从而支持从具有不同抽样框架的各种研究方案中构建一个超过 30,000 个观测值、标准化数据集的可行性。这种独特的实施策略提高了效率，便于进行个体水平的数据荟萃分析。
