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Our data, our society, our health : a vision for inclusive and transparent health data science in the United Kingdom and beyond

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Ford_2019_LHS_Ourdata_CC.pdf (302.4Kb)
Date
07/2019
Author
Ford, Elizabeth
Boyd, Andy
K. F. Bowles, Juliana
Havard, Alys
Aldridge, Robert
Curcin, Vasa
Greiver, Michelle
Harron, Katie
Katikireddi, Vittal
Rodgers, Sarah
Sperrin, Matthew
Keywords
Citizen-driven science
Data flows
Health data science
Health systems
Stakeholder involvement
Transparency
RA Public aspects of medicine
QA75 Electronic computers. Computer science
ZA4050 Electronic information resources
T-NDAS
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Abstract
The last 6 years have seen sustained investment in health data science in the United Kingdom and beyond, which should result in a data science community that is inclusive of all stakeholders, working together to use data to benefit society through the improvement of public health and well‐being. However, opportunities made possible through the innovative use of data are still not being fully realised, resulting in research inefficiencies and avoidable health harms. In this paper, we identify the most important barriers to achieving higher productivity in health data science. We then draw on previous research, domain expertise, and theory to outline how to go about overcoming these barriers, applying our core values of inclusivity and transparency. We believe a step change can be achieved through meaningful stakeholder involvement at every stage of research planning, design, and execution and team‐based data science, as well as harnessing novel and secure data technologies. Applying these values to health data science will safeguard a social licence for health data research and ensure transparent and secure data usage for public benefit.
Citation
Ford , E , Boyd , A , K. F. Bowles , J , Havard , A , Aldridge , R , Curcin , V , Greiver , M , Harron , K , Katikireddi , V , Rodgers , S & Sperrin , M 2019 , ' Our data, our society, our health : a vision for inclusive and transparent health data science in the United Kingdom and beyond ' , Learning Health Systems , vol. 3 , no. 3 , e10191 . https://doi.org/10.1002/lrh2.10191
Publication
Learning Health Systems
Status
Peer reviewed
DOI
https://doi.org/10.1002/lrh2.10191
ISSN
2379-6146
Type
Journal article
Rights
Copyright © 2019 The Authors. Learning Health Systems published by Wiley Periodicals, Inc. on behalf of the University of Michigan This is an open access article under the terms of the Creative Commons Attribution‐NonCommercial License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited and is not used for commercial purposes.
Description
This paper is the work of the first cohort of the Farr Institute's “Future Leaders” scheme. The Future Leaders programme was funded by the Farr Institute and was financially supported by the authors' institutions or grants.
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  • University of St Andrews Research
URI
http://hdl.handle.net/10023/17361

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