Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2021 May;28(1):e100303.
doi: 10.1136/bmjhci-2020-100303.

Development of a data utility framework to support effective health data curation

Ben Gordon  1 , Jake Barrett  2 , Clara Fennessy  2 , Caroline Cake  2 , Adam Milward  3 , Courtney Irwin  3 , Monica Jones  2   4 , Neil Sebire  2
Affiliations

Development of a data utility framework to support effective health data curation

Ben Gordon et al. BMJ Health Care Inform. 2021 May.

Abstract

Objectives: The value of healthcare data is being increasingly recognised, including the need to improve health dataset utility. There is no established mechanism for evaluating healthcare dataset utility making it difficult to evaluate the effectiveness of activities improving the data. To describe the method for generating and involving the user community in developing a proposed framework for evaluation and communication of healthcare dataset utility for given research areas.

Methods: Aninitial version of a matrix to review datasets across a range of dimensions wasdeveloped based on previous published findings regarding healthcare data. Thiswas used to initiate a design process through interviews and surveys with datausers representing a broad range of user types and use cases, to help develop afocused framework for characterising datasets.

Results: Following 21 interviews, 31 survey responses and testing on 43 datasets, five major categories and 13 subcategories were identified as useful for a dataset, including Data Model, Completeness and Linkage. Each sub-category was graded to facilitate rapid and reproducible evaluation of dataset utility for specific use-cases. Testing of applicability to >40 existing datasets demonstrated potential usefulness for subsequent evaluation in real-world practice.

Discussion: Theresearch has developed an evidenced-based initial approach for a framework tounderstand the utility of a healthcare dataset. It likely to require further refinementfollowing wider application and additional categories may be required.

Conclusion: The process has resulted in a user-centred designed framework for objectively evaluating the likely utility of specific healthcare datasets, and therefore, should be of value both for potential users of health data, and for data custodians to identify the areas to provide the optimal value for data curation investment.

Keywords: BMJ health informatics; health care sector; information management; information science; information systems.

PubMed Disclaimer

Conflict of interest statement

Competing interests: MetadataWorks (AM and CI) were funded by HDR UK to conduct the initial information gathering. No competing interests are declared.

Figures

Figure 1
Figure 1
Bar chart showing breakdown of interviewees by sector.
Figure 2
Figure 2
Bar chart showing breakdown of survey respondents by sector.
Figure 3
Figure 3
Final version of the proposed data utility framework based on data user feedback.
See this image and copyright information in PMC

References

    1. HDR UK One Institute Strategy . Health data research UK, 2020. Available: https://www.hdruk.ac.uk/wp-content/uploads/2019/11/191010-HDR-UK-One-Ins...
    1. Health Data Research UK . Over 3,000 people, 30 locations and counting. Available: https://www.hdruk.org/news/over-3000-people-and-30-locations-and-counting/ [Accessed Oct 2020].
    1. Ersnt & Young . Realising the value of health care data: a framework for the future EYGM; 2019.
    1. Kahn MG, Callahan TJ, Barnard J, et al. . A harmonized data quality assessment terminology and framework for the secondary use of electronic health record data. EGEMS 2016;4:18. 10.13063/2327-9214.1244 - DOI - PMC - PubMed
    1. Department for Digital, Culture, Media and Sport . National data strategy. Available: https://www.gov.uk/government/publications/uk-national-data-strategy/nat... [Accessed Oct 2020].

MeSH terms