Type

Journal Article

Authors

René J F Melis
Marcel G M Olde Rikkert
Ewout W Steyerberg
Bas Steunenberg
Gertrudis I J M Kempen
Aaltje P D Jansen
Wendy P J den Elzen
Bianca M Buurman
Han Boter
Bianca W M Schalk
and 3 others

Subjects

Medicine & Nursing

Topics
care female demography rand 36 metaanalysis male netherlands aged elderly people functional status resident assessment instrument quality of life humans caregivers frailty index mortality data set information dissemination health care surveys databases as topic

The development of the Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS): a large-scale data sharing initiative. (2013)

Abstract 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.
Collections Ireland -> University College Cork -> Obstetrics & Gynaecology - Journal articles
Ireland -> University College Cork -> National Perinatal Epidemiology Centre - Journal Articles
Ireland -> University College Cork -> Obstetrics & Gynaecology
Ireland -> University College Cork -> PubMed
Ireland -> University College Cork -> College of Medicine and Health
Ireland -> University College Cork -> National Perinatal Epidemiology Centre
Ireland -> University College Cork -> Research Institutes and Centres

Full list of authors on original publication

René J F Melis, Marcel G M Olde Rikkert, Ewout W Steyerberg, Bas Steunenberg, Gertrudis I J M Kempen, Aaltje P D Jansen, Wendy P J den Elzen, Bianca M Buurman, Han Boter, Bianca W M Schalk and 3 others

Experts in our system

1
René J. F. Melis
University College Cork
Total Publications: 5
 
2
Marcel G. M. Olde Rikkert
University College Cork
Total Publications: 8
 
3
Wendy P J den Elzen
University College Cork
Total Publications: 9
 
4
Bianca M. Buurman
University College Cork
Total Publications: 4
 
5
Han Boter
University College Cork
Total Publications: 3