Dr. Darrin Morrissey:

On behalf of myself and my colleague, Dr. Mairead O'Driscoll, I thank the Chairman and the committee members for the invitation to present and answer questions today.

Health research saves lives, but turning research discoveries into real benefits for people's health and patient care does not happen by itself. The Health Research Board, HRB, supports great ideas, the infrastructure and people to come together to make research potential a reality. The HRB, under the auspices of the Department of Health, is the leading Irish agency funding health research today. Our annual budget is €45 million and we manage an active investment portfolio of approximately €170 million.

We fund research across a broad range of health areas to prevent illness, improve health, enhance healthcare and inform policy. These funding areas include applied biomedical research, for example, studies into antibiotic drug resistance to support MRSA treatment; clinical trials; population health, for example, monitoring the impact of HPV vaccination in Ireland; and health services research, for example, developing a standard assessment tool to reduce the number of adverse events happening in Irish hospitals. Our €45 million annual funding pot also underpins the HRB's role in providing evidence to Government to inform health and social care decision-making. Examples of work that the HRB evidence centre has done and contributed to in the past number of years include the Public Health (Alcohol) Act 2018, regulation and financing of home care costs and policy on water fluoridation.

We also manage four health information systems across a range of areas, including drug and alcohol use, drug deaths, disability and mental health. International evidence tells us that research-active healthcare systems have better outcomes for patients. The Health Research Board, HRB, has been at the forefront in some key developments enabling better health and better healthcare in Ireland. The HRB has invested in an extensive network of three clinical research facilities; five clinical trial networks, including Cancer Trials Ireland; a clinical research co-ordination Ireland hub, which co-ordinates Ireland’s involvement in clinical trials; and a trial methodology research network to strengthen the approach taken to trials. Whether improving lives, prolonging lives or saving lives, health research must be patient-focused. The HRB has also been taking a lead on putting the patient first by encouraging and helping researchers to involve the public in their research from the start and helping the public participate in reviews of research proposals.

I will now address cancer and cancer research. The HRB recently analysed the most recent available data on the spend on health research from a range of public funding agencies in Ireland between 2011 and 2015. During that period, the main agencies and Departments provided cumulative funding of €750 million. When we looked at the spend on different disease areas, we found that cancer accounted for about 20% of national funding.

This level of investment is reflected in the HRB's portfolio. Although we provide funding in all disease areas and in cross-cutting areas, approximately 20% of the HRB's revenue budget is allocated to cancer research. This pattern of expenditure on cancer is not at all out of kilter with other countries. In the UK, for example, about 20% of national funding for disease-specific health research is allocated to cancer. In Norway, approximately 25% of all research funding is devoted to cancer. It must be acknowledged, however, that compared with other countries, Ireland's spend on research is a relatively small proportion of total health spend. In absolute terms, the HRB allocated €50 million to cancer research in the period from 2011 to 2015. Across all agencies, the total number was €93 million. The next largest funder was Science Foundation Ireland, with a spend of more than €30 million.

I will now refer to the national cancer strategy. We at the HRB welcome this review of the national cancer strategy and the fact that more attention is being given to research as part of that review. We have three recommendations specific to the research area that we believe will drive the research agenda for cancer in the future. First, we recommend the urgent establishment of the national cancer research group as outlined in the strategy's recommendation 46. As noted in the national cancer strategy, there is a need for better co-ordination between different initiatives, research entities and Government agencies. This can be accomplished through the establishment of a national cancer research group. We view this as a very important action for 2019. It would require the involvement of a range of stakeholders including the Department of Health, the NCCP, the HSE and all research funders, including funders from the charity sector such as the Irish Cancer Society. There are several ways in which the group could operate. We have some suggestions on how this might be done.

Second, we recommend the proactive fostering of a culture in the cancer care system that truly values research. This requires supporting the people and the leadership within an integrated healthcare system. As noted in the national cancer strategy, there is a lack of recognition within the healthcare system that research is a relevant, vital and critical activity. We strongly support the strategy's recommendation of ensuring that newly-appointed cancer consultants and advanced nurse practitioners have protected time to pursue research. The appropriate mechanisms must be put in place to make this a reality and not just limited to employment contracts. It is one thing to have it written in a contract but actually delivering on it on a day-to-day basis is what is needed. Furthermore, we recommend that the NCCP and HSE find a way to fund, or at least co-fund, more of the core positions in the research infrastructures, such as clinical research nursing and data management. This would free the HRB in its remit as a cancer research funder to move away from more basic infrastructural needs and invest in more trial activity, which would be good for patients and good for the system.

Our third and final recommendation is for serious efforts to be made to build patient and public trust by improving the use of the cancer data that already exist in an open and transparent manner. This is linked to recommendation 52 in the national cancer strategy. The National Cancer Registry Ireland is a world-class piece of data infrastructure that informs us at a high level about the incidence and mortality of all cancers in Ireland. However many other data sources also exist such as, for example, disease-specific registries and population cohort data such as the data sets of the Irish longitudinal study on ageing, TILDA, and the hospital inpatient enquiry, HIPE. If these data sets were linked to the National Cancer Registry Ireland data in a safe, controlled and trustworthy manner, this could provide valuable insights into cancer in the Irish population. For example, linking information on cancer incidence and mortality to information on demographics, socioeconomic indicators and lifestyle would help us to target cancer treatment and diagnostics deliver more effective prevention strategies.

We recommend that a national health data project should be initiated using the principles established in the Health Research Board’s proposals for an enabling data environment for health and related research in Ireland, which we euphemistically call the data, access, storage, sharing, linkage, DASSL, model. This was published in 2016 with an initial focus on cancer. The HRB believes that given Ireland's size, relatively centralised health system, well-connected ecosystem and growing sense of citizen engagement, a focused and concerted effort could make Ireland a leader in health data management and use. A critical first step in that project would be the development of trust on the part of patients. This could be achieved through Citizens' Assembly-style meetings to build understanding of the concept, gain buy-in and establish safe data sharing and linkage principles. We believe this would lay the foundations for people to benefit fully from the advances in genomics and precision medicine that are increasingly important in cancer treatment.

I thank the committee for the opportunity to present. Dr. O'Driscoll and I are happy to take questions.