NHS-HE Connectivity Best Practice Working Group

4 – Information Governance & Data Sharing

It was raised in the Working Group by Leeds representatives that they were looking to develop a formal information sharing agreement between the University and their partner Trusts. This work is continuing but the question was whether this was already happening and this was put to the NHS-HE Forum JISCMAIL group. There were a number of very helpful replies, particularly via the Health Informatics Benchmarking Club, although there were no responses with examples of University – NHS Trust information sharing agreements.

The resources that were referenced included:

Department of Health Information Sharing Protocol guidance

Wales Accord on the Sharing of Personal Information (WASPI)

A number of example information sharing agreements from the NHS were supplied (being checked for approval for publication).

Research Data Sharing

The Working Group is grateful to Finlay MacDougall, Training Manager for the Health Research Support Service, NCRI/Research Capability Programme, for a summary of their work on sharing research data:

“ Our work has been focused on cultural change (promotion of data sharing as the norm) and thus the materials we have are not so heavy on technical infrastructure.

• Summary of a recent meeting discussing how the data sharing policy the NCRI developed was being implemented
• Extract from a Clinical and Biomedical research market analysis regarding the Culture of Data Sharing we have been working on.

The data sharing policy the funding organisations adopted is found at: http://www.cancerinformatics.org.uk/ncridatasharingpolicy.pdf

There have also been two major events organised on this topic:

• NCRI Informatics Data Sharing Debate - The International Convention Centre, Birmingham 6 October 2008
• Enabling Data Sharing in Cancer Research Workshop - Cancer Research UK, Holborn, London 30th November 2007