As a national network, the NCRN is well placed to explore and offer a collective response to broader generic issues that affect the cancer trials community as a whole. NCRN-led initiatives are ongoing in the following areas:

The engagement of consumers in health care generally, and in research activity in particular, is a key policy recommendation. A joint NCRI/NCRN Report was completed in 2002, which mapped out how consumers could become involved in cancer research. The principal recommendations of the Report were firstly, to develop the consumer involvement infrastructure with the establishment of systems for reimbursement of consumers. Secondly, to enhance the strategic role of the NCRI Consumer Liaison Group and ensure effective consumer representation on the Clinical Studies Groups. The third recommendation was to increase public awareness of cancer clinical research. In April 2003, Dr Tony Stevens was appointed to take this agenda forward.

To date, progress has been made in many areas. Systems have been put in place to ensure that consumers are reimbursed for their input and they have access to a range of training, educational opportunities and scientific and peer support. There are over 40 members of the Consumer Liaison Group, and the majority of the Clinical Studies Groups have two consumer representatives. Initiatives are also being developed to develop consumer involvement within the 34 Cancer Research Networks. Enhancing public awareness of clinical research remains an important target to address and a number of initiatives are being investigated.

The role of the NCRI Clinical Studies Groups in the development of the NCRN research portfolio has been reviewed and it is proposed these groups will be the primary, but not sole, route through which NCRN clinical trials are considered. Clearer processes for the leadership and membership of these groups are being established that will promote transparency, encourage participation and ensure groups understand and are well equipped to undertake this new role.

Agreement has now been reached between MRC and Cancer Research UK for a single trials approval process, built around a central funding stream and review system to be established for new trials. The arrangements have been finalised and the first meeting of the Clinical Trials Awards and Advisory Committee (CTAAC) took place in October 2002.

A formal ‘adoption’ process (based around a process of independent review) has been set up. This allows existing national/international trials that are high quality and relevant but are not supported by NCRI members, to become part of the NCRN trials portfolio, thus enabling access to NCRN resources.

The NCRN has conducted a Strategic Review of Trials Units in the UK on behalf of the NCRI. This aimed to clarify the functions and structures of existing Units and to consider any improvements in the organisation and running of cancer clinical trials in the UK. Reports detailing the current activities and structures of the trials units involved in NCRI funded cancer trials and recommendations for the future coordination of the trials units are available from the NCRN Coordinating Centre.

The NCRN is exploring ways to facilitate a rapid exchange of information. A number of remote data entry systems are currently being evaluated to identify a suitable system to be used nationally. This should allow networks to capture and manage their data electronically, to encourage standardisation of the data being processed, and to provide up-to-date and accurate accrual information.

The Centre for Reviews and Dissemination is leading a programme of work with the NCRI Clinical Studies Groups to help develop their portfolio of trials and other well-designed studies. By working together systemically to identify the gaps in the existing evidence-base, the NCRN intends to support, encourage and facilitate groups to develop a comprehensive portfolio. A pilot initiative, focussing on the Bladder and Breast Groups, is now well underway and will, hopefully, direct the longer-term development of this programme across all the groups (expected Autumn 2002/Winter 2003).

The anticipated rise in the number of clinical trials taking place in England will impact on the ethical approval process. The NCRN has begun to explore how best to support networks and ethics committees to work together as closely as possible, thus increasing efficiencies within the existing systems and reducing the burden of any additional activities. The NCRN has begun talks with the Central Office for Research Ethics Committees (COREC) on the impact of proposed changes to the ethics approval process.

The NCRN has been working closely with representatives of the NCRI Funders, clinical trials units, research networks and academic units to streamline data flow to facilitate the efficient collection of up-to-date accrual data on NCRN trials activity across England. It is essential to the operation and performance management of the NCRN that data shall flow appropriately and without impediment between those charged with its appropriate control and processing. Consideration has been given to the Data Protection Act and a paper outlining the proposed governance of clinical research data collection and management within the NCRI and NCRN has been developed.

Work is ongoing to clarify the training needs of the NCRN clinical research team, and to identify and evaluate existing training provision and assess its relevance to the NCRN. The NCRN is exploring ways to respond to gaps in provision. A full paper on current activities in the UK is available.

There has been much discussion between NCRN and industry. Meetings have taken place with companies with a particular interest in cancer to obtain their views and opinions on the quality, cost and ease of performing clinical research in the UK. The key message emerging from our meetings to date is that NCRN partnership with industry should create greater standardisation across the NHS. There is a lot more work to do to develop the exact nature of this working relationship, but there is commitment from both sides that is encouraging.