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

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.

• Report Type: Project Report
• Publication Date: Mar 31, 2015
• Publicly Available Date: Jun 6, 2019
• Peer Reviewed: Not Peer Reviewed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