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1 From the Director of Research and Development Dr Russell Hamilton CBE Richmond House 79 Whitehall London SW1A 2NS T: +44 (0) E: W: 18 December 2015 Helen Jones MP Chair of the Petitions Committee House of Commons London SW1A 0AA By to: Dear Ms Jones, Thank you for your letter of 11 th December requesting evidence concerning the role of the National Institute for Health Research (NIHR) in funding research. The Department s research and development budget has been allocated 1,078 million for 2015/16. This budget funds the NIHR and the Department s Policy Research Programme (PRP). The NIHR is funded to improve the health and wealth of the nation through research. It is a large, multi-faceted and nationally distributed organisation and, since its establishment in April 2006, the NIHR has transformed research in the NHS. It has increased the volume of applied health research for the benefit of patients and the public, driven faster translation of basic science discoveries into tangible benefits for patients and the economy, and developed and supported the people who conduct and contribute to applied health research. The NIHR works in partnership with many sectors including the public and service users, the NHS, public health, other Government funders, the third sector, academia and industry. The PRP commissions and funds research to inform the development and implementation of policy across the full breadth of the Department s remit. I attach responses to the Committee s questions and would be happy to provide further information if needed by the Committee. With all my very best wishes, Dr Russell Hamilton, CBE DIRECTOR OF RESEARCH AND DEVELOPMENT

2 Peer-reviewing process of research applications 1. How many applications for brain tumour research are received by NIHR and how many are successful? From 2009 to date, 35 applications relating specifically to brain tumour research have been submitted to programmes managed and funded by the National Institute for Health Research (NIHR). Of these applications, one is under review, seven have been funded, and 27 have been rejected. This is consistent with the overall funding rate for applications to NIHR programmes, which is about one in five. 2. The Committee has heard concerns that the peer reviewing process could be seen as an old boys club which could risk excluding innovative research applications. a. Is this a concern which has been heard by the NIHR before? b. What steps does the NIHR take to guard against this risk? How often is the process reviewed? This is not a concern that we have heard before. The NIHR operates the same level of highquality, robust, rigorous and independent peer review as all major research funding organisations in the public and charity sectors, both in the UK and internationally. The NIHR funds a range of research programmes and the precise structures and processes vary according to the needs and objectives of the specific programme. For example, five programmes are managed by the NIHR Evaluation, Trials and Studies Coordinating Centre (NETSCC) based at the University of Southampton. NETSCC is a team of managers, academics, clinicians, researchers and support staff that oversee the management and delivery of these programmes including the recruitment process for advisory group members. Advisory groups, including prioritisation panels, funding and editorial boards are comprised of independent individuals with a broad spectrum of knowledge, skills and experience needed to get a well-rounded view of research needs and research assessment. NETSCC seeks input from patients, members of the public, academics, subject experts, clinical staff, service managers, health and public health professionals. Advisory groups provide independent input, assessing research briefs, research proposals and final reports. They help to ensure that research is high quality, scientifically robust, represents good value for money and meets the needs of patients, the NHS and the wider public. All advisory group members are required to declare if they have any interest that might be in conflict with their member role. Members with a conflict of interest relating to applicants or report authors are asked to leave the room for that agenda item. Applications to NIHR programmes are sent to reviewers selected to ensure they have the correct expertise to address all or part of an application, and that they are not collaborating researchers of the applicant(s) or who would be considered a competitor of the applicant(s). Applicants are given the opportunity to offer a rebuttal of peer review comments. As well as professional experts, reviews are also conducted by patients and the public. Review processes are the subject of continuous improvement. 3. The Committee has also heard about a vicious cycle in applications for funding research: research isn t funded because applications of the right quality aren t being made, but the lack of funding granted deters researchers from specialising in the field. a. Would the NIHR agree that this is a problem? b. Could there be a role for the Government in helping to end this vicious cycle? If so, what action could the Government take?

3 The NIHR has a wide range of measures to support and incentivise researchers in health and social care including: - Substantial total funding (total revenue spend has increased from 851 million in 2009/10 to 985 million in 2014/15); - Eight types of research programme supporting researcher-led applications; - Research training and career development awards, ranging from undergraduate level through to opportunities for established investigators and research leaders; they are open to a wide range of professions and designed to suit different working arrangements and career pathways; - The NIHR Research Design Service is available to help prospective applicants develop competitive research proposals for submission to NIHR itself and also to other national, peer-reviewed funding competitions for applied health or social care research; the service provides expert advice to researchers on all aspects of preparing grant applications in these fields, including advice on research methodology, clinical trials, patient involvement, and ethics and governance. The data for brain tumour research applications to NIHR programmes (see under 1. above) indicates that high quality proposals in this field are being received and funded. 4. In its response, the Government said that awards from the NIHR are made on the basis of the importance of the topic to patients and the NHS, value for money and scientific quality. a. Could you explain more about how the importance of the topic to patients and the NHS, and value for money are measured? b. Is the burden of disease considered by the NIHR in its decision process? If yes, what measures of the burden of disease are used? c. To what extent are life years lost taken into account in this process? The following are general criteria used by advisory committees when assessing the merits of individual applications. Proposals are first assessed for the following: The importance or burden of the health or care problem to those who would use the evidence generated by the proposed study; What the proposed study would add to the existing body of knowledge; Whether the study is likely to lead to improved health and care and effect practice change; Whether the study would have a high impact on patients, the public and people working in health and care. Once the need for the evidence has been established, the matter of value for money the particular proposal represents is considered: The proposed costs of the research are reasonable and commensurate with the proposed work involved; The costs to health and care services in supporting the research are reasonable in relation to the likely benefits of the research to decision-makers, patients and the public. Once both sets of the above criteria have been established, applications are then judged on the following: The study design would answer the research question proposed; The proposed study would be feasible and deliverable; The team has the necessary skill mix and experience and project management of the study is sound. Advisory groups are made up of clinicians, patients, members of the public, service managers and other decision-makers depending on the specific area covered by the group, as well as academics. The members experience of what they see in their day to day work for instance in

4 looking after patients or in organising care services personal research or experience through their peer groups are brought to bear on discussion and decision as to importance and prevalence of a disease area and its effects on both patients and carers. Driving investment 5. In its response to the petition, the government said that increased spend by Cancer Research UK on research into brain tumours would drive further investment by the NIHR. It said: This happens in two ways. Firstly, as scientific breakthroughs are translated into interventions benefitting patients through infrastructure for experimental medicine. Secondly, investment is driven as emerging interventions are investigated in studies and trials through the NIHR Clinical Research Network. a. What is the relationship between the NCRI and the NIHR? b. Is greater investment from the NCRI s partner organisations needed before brain tumour research can benefit from any funding from the NIHR? The National Cancer Research Institute (NCRI) was set up in 2001 with a mission to bring together all the key players in cancer research in the UK to identify where research is most needed and where it is most likely to contribute to progress. Fifteen organisations including the Department of Health formed the original NCRI partnership. The Department funds the NIHR, which was established in The NIHR makes substantial investment in cancer research infrastructure ( 115 million in 2014/15). This infrastructure supports translational medicine and the delivery in the NHS of clinical trials and studies funded directly by the NIHR itself and by partners including Research Councils, medical research charities and industry. Investment in clinical studies in a specific cancer site or topic area by a public or third sector partner therefore drives NIHR investment through its infrastructure. (Commercial studies are supported on a cost recovery basis.) Direct funding of brain tumour research by NIHR, for example through its programmes and fellowship schemes, is driven by the number and scale of successful applications to NIHR. 6. We have learnt about the NIHR s themed research calls which are issued to meet an identified health challenge or government priority. a. Could you tell us a little more about the process the NIHR follows to identify health challenges which should be the focus of a themed call? b. Could you tell us if brain tumour research has benefited from a NIHR themed call? If yes, please could you explain what led to that decision and what the outcomes were? c. Would the NIHR consider issuing a themed research call focused on brain tumour research? The NIHR has issued a number of themed calls across its programmes, in response to recognition of the need for an increase in research-based evidence on a particular topic. Typically themed calls address major strategic needs such as dementia, obesity and antimicrobial resistance. A themed call does not have a ring-fenced budget; successful applications are funded through existing NIHR budgetary provision. No brain tumour research has been funded as a result of a previous themed call and the NIHR has no current plans to issue a themed call in brain tumour research. NIHR programmes that participate in themed calls all issue regular calls for researcher-led applications and can receive proposals related to brain tumours. Funding 7. In its response, the government said that the NIHR did not ring fence money for brain tumours or other types of cancer. Does the NIHR ring fence money for any other disease areas or health issue? If yes, how are those decisions made?

5 The NIHR has no budgets ring-fenced for specific diseases or topics. 8. Does the NIHR monitor how much money is spent on different disease areas? For example, is it possible to know how much money has been spent by the NIHR on brain tumour research? Spend on research funded directly by the NIHR is categorised by Health Research Classification System (HRCS) health categories including cancer. There are no HRCS health sub-categories, such as for brain tumours or other cancer sites. The Department is a partner in the UK Clinical Research Collaboration (UKCRC). The UKCRC has carried out analyses of the health research portfolios of government and charity organisations funding health related research in the UK, using the HRCS. Details of UKCRC work in this area can be found on the Collaboration s website: