Do the research goal and databases match? A checklist for a systematic approach

Eijk, M. E. C. van; Krist, Lambert F. G.; Avorn, Jerry; Porsius, A. J.; Boer, Anthonius de

doi:10.1016/s0168-8510(01)00160-9

Cited by 12 publications

(4 citation statements)

References 16 publications

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“…The widespread use of some administrative assets for other purposes such as research, however, is welldocumented. For example, information collected for financial management is not expected to fulfil clinical research purposes, and yet health insurance data have been used for decades for purposes additional to financial claims (Bilinski and Boyages, 2013;Mazumdar et al, 2013;Van Eijk et al, 2001). Administrative datasets are cost effective, unintrusive and regularly updated; however, Sarrazin and Rosenthal (2012) found that they often lack clinical details, under-report clinical events or provide minimal background information, potentially resulting in "misleading interpretation of findings based on naïve analysis" (p. 1434).…”

Section: Widespread Use Of Information Assetsmentioning

confidence: 99%

The suitability of government health information assets for secondary use in research: A fit-for-purpose analysis

Riley

Robinson

Kilkenny

et al. 2022

HIM J

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Background Governments have responsibility for ensuring the quality and fitness-for-purpose of personal health data provided to them. While these health information assets are used widely for research, this secondary usage has received minimal research attention. Objective This study aimed to investigate the secondary uses, in research, of population health and administrative datasets (information assets) of the Department of Health (DoH), Victoria, Australia. The objectives were to (i) identify research based on these datasets published between 2008 and 2020; (ii) describe the data quality studies published between 2008 and 2020 for each dataset and (iii) evaluate “fitness-for-purpose” of the published research. Method Using a modified scoping review, research publications from 2008 to 2020 based on information assets related to health service provision and containing person-level data were reviewed. Publications were summarised by data quality and purpose-categories based on a taxonomy of data use. Fitness-for-purpose was evaluated by comparing the publicly stated purpose(s) for which each information asset was collected, with the purpose(s) assigned to the published research. Results Of the >1000 information assets, 28 were utilised in 756 publications: 54% were utilised for general research purposes, 14% for patient safety, 10% for quality of care and 39% included data quality-related publications. Almost 85% of publications used information assets that were fit-for-purpose. Conclusion The DoH information assets were used widely for secondary purposes, with the majority identified as fit-for-purpose. We recommend that data custodians, including governments, provide information on data quality and transparency on data use of their health information assets.

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Section: Widespread Use Of Information Assetsmentioning

confidence: 99%

The suitability of government health information assets for secondary use in research: A fit-for-purpose analysis

Riley

Robinson

Kilkenny

et al. 2022

HIM J

View full text Add to dashboard Cite

show abstract

“…Because of costs and other constraints, their size and the nature of the outcomes may be limited. Health insurance administrative databases are emerging as important tools to assess the effectiveness of therapies in real-world settings [1,2]. In Canada, health insurance administrative databases include nearly the entire population and have been validated for certain conditions but not for chronic obstructive pulmonary disease (COPD) [3,4].…”

mentioning

confidence: 99%

A cohort study showed that health insurance databases were accurate to distinguish chronic obstructive pulmonary disease from asthma and classify disease severity

McKnight

Scott

Menzies

et al. 2005

Journal of Clinical Epidemiology

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“…The ethical researcher must take the time to understand the data and how it was collected in order to assess what questions it can be used to answer. Some have proposed specific techniques for determining the appropriateness of research questions (van Eijk, Krist, Avorn, Porsius & de Boer, 2001), however owners/ custodians must also periodically monitor the use of their data by others. If resources are available, inclusion of representatives of the data owner/custodian on research teams, to assist with design and interpretation, can be helpful.…”

Section: Appropriate Usementioning

confidence: 99%