Initiative History

The Vision

The NCRI Informatics Initiative was formally instigated in 2003 based on a framework set out in the document ‘NCRI Strategic Framework for the Development of Cancer Research Informatics in the UK’. The vision and objectives defined in the original framework are still valid and remain the basis of the Initiative’s work to this day.

The aim of the NCRI Informatics Initiative is:
To maximise the impact of the results of research funded by NCRI Partner organisations for the benefit of cancer patients by ensuring that data generated through research is put to maximum use by the cancer research community.

The vision consists of:
The creation of an internationally compatible informatics platform in the UK that facilitates access to and integrated analysis of data generated from research funded by NCRI Partner organisations, across the spectrum from genomic data to data generated from clinical trials and large-scale epidemiological data.

Key elements of the NCRI vision include the following:

• Data from research becomes available through the use of a series of directly applicable standards (including compatible vocabularies, ontologies and data models). This will help create an environment of data flow, international collaboration and research provision.
• Biomedical informatics infrastructure and tools would be readily available to those involved in all areas of cancer research, to facilitate both the contribution of data to various databases and access to other datasets.
• All data would be collected, stored and used in a secure manner that respected the confidentiality of personal and clinical data and subject to a single, or small number of, nationally, or preferably internationally, recognised authorities governing its ethical use.
• The UK would be part of an international informatics platform allowing communication and integration with researchers worldwide.
• A biomedical research community trained to make use of data available from various sources

Such aims reflect both the need for a cultural change (to want to share information, the application of standards in the generation of information/data to facilitate its sharing, and training in how to do this) and a technical challenge (to discover what exists, be able to physically access and create new data sets and the appropriate access to share and run tools and utilities to analyse that information). It also requires the linkage of infrastructure and governance across national and international projects.

Early History - 2003 to 2006

The initial years of the Initiative saw a small team of staff undertaking a range of activities. These were varied and highly successful, most notably the development of a common data sharing policy across the NCRI Partners, and the development of the first iteration of the Cancer InfoMatrix (then known as the Planning Matrix) to promote the use of standards amongst the research community. The Initiative also helped raise the profile of informatics in general within the UK research community through various workshops and presentations.

In parallel it also developed the Business Case to propel the Initiative on to the next level of interaction with the community.

Recent History - 2006 to 2010

The Business Case outlined the expansion of the Unit alongside the appointment of a fulltime Director. The expansion not only allowed an increased level of community interaction (coordinated under the Community Alliances team) but also the recruitment of a technical team (known as Platform Development) to address some of the more challenging elements of resource discovery and interoperability across existing networks/infrastructure.
                                                    
The overall focus of the Initiative remained on continuing to raise the profile of data sharing and access, particularly supporting the NCRI Partners in implementing the new Data Sharing Policy and continued promotion of standards. However, technical aspects such as the development of an information portal (ONIX) and the investigation of interoperability between existing informatics platforms could now be incorporated to the programme.

The last few years has also seen the development of a strong set of relationships with key national and international groups (such as the NCI, EMBL-EBI and British Library) who are also interested in the ability for the ever-increasing amounts of information to be utilised for the benefit of all on an international collaborative basis.