On 2nd December 2009 members of the NCRI Informatics Initiative attended the UK Data Archive’s workshop, ‘Managing and Sharing Research Data: Focus on Consent, Confidentiality and Disclosure’.

This event was divided into three sessions. Session 1 was an introduction to the topic that covered: data management and sharing as applied to research involving people as participants; the legal and ethical aspects of data sharing; and data management planning. Sessions 2 and 3 were more interactive sessions that each focused on Anonymisation Techniques and Obtaining Consent.

In the session covering Anonymisation Techniques information was provided on anonymising quantitative, relational, geo-referenced and qualitative data. Following which attendees discussed examples and the challenges associated with the practicalities of anonymisation.

In the Obtaining Consent session a brief introduction was given that covered: when to ask for consent, what format should be used to obtain consent, what to include when asking for consent; and the types of research material that requires consent. Delegates then evaluated examples to get a better feel for the style, structure and content of consent forms.

This was an excellent educational workshop in that is not only provided information about the regulations and issues surrounding ethics, consent and confidentiality but gave delegates practical advice and hands-on experience through case studies and examples.

To view the slides from this workshop please visit http://www.data-archive.ac.uk/news/eventdetail.asp?id=2293

For more information on upcoming workhops hosted by the UK Data Archive please visit their website
http://www.data-archive.ac.uk/news/forthcomingevents.asp

In November, V1.3 of ONIX was released which included the following upgrades and features:

• No need to log in to access the Quick Search of Resource Catalogue
• More efficient Searching
• The expansion and restructuring of the Resource Catalogue

The Initiative is currently focused on the next point release of ONIX which is scheduled for March 2010. In the meantime, all are welcome to make use of ONIX V1.3 and we are happy to receive any feedback, comments or suggestions that you may have.

http://ncri-onix.org.uk/

On 5th Oct 2009, during the NCRI Cancer Conference, the NCRI Informatics Initiative and the National Cancer Intelligence Network (NCIN) hosted a parallel session entitled ‘From the Genome to the Clinic: Connecting Data for Better Health’

This session, through three examples, looked at different ways of utilising the increasing quantity of routine and research data available about cancer patients to directly improve outcomes. The first example came from Eric Holowaty of Ontario Cancer Care in Canada who described their use of the oldest automated cancer registration process in the world to link routine cancer datasets. Then Tjeerd Van Sta from the General Practice Research Database in the UK spoke about the potential of the recently completed linkage of this database with the National Data Repository and finally Stephen Friend from Merck USA explored the benefits of building models of data sharing based on an integrative genomic approach.

In addition to the three main presentations delegates heard short talks on current work that aims to make better use of research data. These talks were given by:

Marketa Zvelebil, Breakthrough Breast Cancer Research, UK
Integration, analysis and meta-mining of data to aid disease, diagnosis, prognosis and treatment response.

Alex Walker University of Nottingham, UK
Tricyclic antidepressants protect against glioma and colorectal cancer

Thomas Clarke, University of Leeds, UK
Trends in laparoscopic colorectal tumour resections across England between 1998 and 2006.

On the 10th and 11th September 2009 the NCRI Informatics Initiative hosted the 3rd annual joint NCRI Informatics Initiative - caBIG® conference in London. The conference this year was entitled Biomedical Informatics Without Borders: From Collaboration to Implementation and aimed to highlight the challenges of implementing informatics solutions in clinical and basic research. It also provided a mechanism for a range of projects to share their experiences; explored the implementation of personalised medicine through IT and discussed methods of empowering the cancer community. The conference was a success in showcasing the work being conducted globally in cancer informatics and we look forward to next year’s conference in the US.

For more information on the conference including the slides and pod casts please visit the conference website.