Elizabeth Green Elizabeth7.Green@uwe.ac.uk
Senior Research Fellow
Enabling data linkage to maximise the value of public health research data
Green, Elizabeth; Ritchie, Felix; Mytton, Julie; Webber, Don J.; Deave, Toity; Montgomery, Alex; Woolfrey, Lynn; ul-Baset, Kamran; Chowdhury, Salim
Authors
Felix Ritchie Felix.Ritchie@uwe.ac.uk
Professor in Economics
Professor Julie Mytton Julie.Mytton@uwe.ac.uk
Professor in Child Health
Don J. Webber
Toity Deave Toity.Deave@uwe.ac.uk
Associate Professor in Child & Family Health
Alex Montgomery
Lynn Woolfrey
Kamran ul-Baset
Salim Chowdhury
Abstract
This project was commissioned by The Wellcome Trust on behalf of the Public Health Research Data Forum. The project aimed to identify the gains to public health research from linking existing data sources, the opportunities in and barriers to such data linking, and how the barriers could be overcome. The objective was to deliver a set of practical recommendations for realising the gains from data linkage.
The key findings of the project were:
- there is a need to change the tone of the debate, from default-closed to default-open
- a reliance on narrow informed consent is not a sufficient basis for good epidemiological research
- policy decisions need to be more evidence-based, and the data community needs to become better at sharing what it knows about practical (as opposed to theoretical) risk
- building and maintain good relationships is key for efficient effective data linkage
- management of data would benefit from the separation of data funding from research funding; but there is also a need to encourage researchers to see data sharing as the norm
- different things matter in different countries: HICs are much more concerned about institutional issues, LMICs about basic data quality
The recommendations reflect these findings.
Citation
Green, E., Ritchie, F., Mytton, J., Webber, D. J., Deave, T., Montgomery, A., …Chowdhury, S. (2015). Enabling data linkage to maximise the value of public health research data
Report Type | Project Report |
---|---|
Publication Date | Mar 31, 2015 |
Peer Reviewed | Not Peer Reviewed |
Keywords | data access, data linkage, public health, epidemiology, confidentiality, privacy, public health research data forum |
Public URL | https://uwe-repository.worktribe.com/output/836824 |
Publisher URL | http://www.wellcome.ac.uk/stellent/groups/corporatesite/@policy_communications/documents/web_document/wtp059017.pdf |
Related Public URLs | http://www.wellcome.ac.uk/ http://www.wellcome.ac.uk/About-us/Policy/Spotlight-issues/Data-sharing/Public-health-and-epidemiology/WTP056860.htm |
Files
Data linkage final report.docx
(985 Kb)
Document
Data linkage final report.pdf
(1.7 Mb)
PDF
You might also like
Spontaneous recognition: An unneccessary control on data access?
(2017)
Book Chapter
Open data: Who needs it?
(2017)
Presentation / Conference
Lessons learned in training ‘safe users’ of confidential data
(2017)
Presentation / Conference
The "Five Safes": A framework for planning, designing and evaluating data access solutions
(2017)
Presentation / Conference
Spontaneous recognition: An unnecessary control on data access?
(2017)
Journal Article