National Cancer Strategy: Discussion

The next two sessions of the committee this morning will look at the National Cancer Strategy 2017-2026 to examine how it is operating on the ground. During the first session the committee will hear from representatives of Cancer Trials Ireland, the Irish Cancer Society and the Health Research Board.

On behalf of the committee I welcome to our meeting this morning from Cancer Trials Ireland Ms Eibhlin Mulroe, chief executive officer, CEO, and Professor Bryan Hennessy, clinical lead; from the Irish Cancer Society Ms Averil Power, CEO, and Mr. Donal Buggy, head of services; and from the Health Research Board Dr. Darrin Morrissey, chief executive, and Dr. Mairead O’Driscoll, director of research strategy and funding.

I draw witnesses' attention to the fact that by virtue of section 17(2)(l) of the Defamation Act 2009, witnesses are protected by absolute privilege in respect of the evidence they give to the joint committee. If, however, they are directed by it to cease giving evidence on a particular matter and continue to do so, they are entitled thereafter only to qualified privilege in respect of their evidence. They are directed that only evidence connected with the subject matter of these proceedings is to be given and are asked to respect the parliamentary practice to the effect that, where possible, they should not criticise or make charges against any person or an entity by name or in such a way as to make him, her or it identifiable. Any opening statements provided to the committee may be published on the committee's website after this meeting.

Members are reminded of the longstanding parliamentary practice to the effect that members should not comment on, criticise or make charges against either a person outside the Houses or an official either by name or in such a way as to make him or her identifiable.

Because there are two sessions and six sets of witnesses, perhaps the witnesses could confine their opening statements to three or four minutes. The committee has received the opening statements so I ask the witnesses to summarise their submissions, if possible.

Professor Bryan Hennessy

I thank the Chairman and members of the committee for inviting us here this morning. I am the clinical lead of Cancer Trials Ireland and I am joined by our CEO, Eibhlin Mulroe. We are delighted to be here to discuss the implementation of the research-related key performance indicators of the national cancer strategy. We also want to raise awareness of the value of clinical trials in cancer treatment.

I am a consultant medical oncologist, a professor of medicine at the Royal College of Surgeons in Ireland and an adjunct professor in the division of cancer medicine at the University of Texas MD Anderson Cancer Center.

Cancer Trials Ireland is a charity that was set up by doctors, nurses and scientists in cancer care to work on trials across cancer disease areas. There are over 500 members and we come together regularly to develop ideas and set up cancer trials. We have 130 cancer trials under way in Ireland, which involve thousands of patients. The trials are how we develop new and effective cancer treatments.

Ireland has the know-how to do more trials. By increasing investment in cancer trials infrastructure, we will be offering Irish cancer patients more options and potentially better outcomes. Cancer trials can extend lives and improve quality of life. When I am in the clinic with a cancer patient, there are times when I want to be able to offer more than the standard of care and that is where a trial can help. Due to the resource constraints in our cancer units and at our head office, there are trials we simply cannot do at the moment.

Cancer is a genetic disease caused by changes in DNA that can be inherited but most of which arise randomly during a person’s lifetime. The landscape of cancer trials globally is changing as we move away from treatments based on the previous understanding of cancer site of origin such as lung, breast or pancreatic cancers, and more towards targeted studies where we look for the same DNA change or mutation in a variety of cancer types. These trials are very specific, with smaller patient numbers, and are replacing the larger one-size-fits-all trials that we had done in the past. Ireland can and does participate in these new types of trials, which are important for patients. In such trials we are testing whether certain targets in cancers respond to specific new treatments in the context of trials where the patients are monitored at the highest level.

As for our recommendations, we need to take steps to implement the national cancer strategy published in 2017. The previous strategy in 2006 was a game changer for cancer care. We in Cancer Trials Ireland believe this strategy could also be a game changer for cancer research. Many members will be aware that we need to be ready to take on the challenge of a twofold increase in the incidence of cancer on the island of Ireland over the next 20 years. In that context, fostering a research culture in our hospitals is important and will create more treatment options for patients through our activity. The target - KPI 20 in the national cancer strategy - to double the number of people with cancer who can access cancer trials, from an estimated 3% to 6% by 2020 would have saved the HSE millions of euro in drug costs and would have provided more patients with access to promising new treatments that would otherwise not be available. Because of cuts to our funding, however, we are actually going in the wrong direction. In 2018 the numbers we have collected so far suggest only 348 patients were newly recruited to cancer trials in 2018 and according to the last report by the National Cancer Registry Ireland, NCRI, there were 22,321 new cases of cancer in the same year. In 2014, the equivalent figure was 664 patients on trials and approximately 21,000 new cases of cancer, which led to calculation of the 3% baseline figure.

In order to support the national cancer control programme, NCCP, achieving this key performance indicator, KPI, and other research related KPIs, Cancer Trials Ireland is calling for support from this committee to reverse the 20% funding cut to its Health Research Board grant that supports its cancer trials research units and general central office. We need an additional €1.2 million per year to Cancer Trials Ireland research units and central office over the next three years to increase activity and to bring patient numbers up to and above the 3% baseline for persons recruited to clinical trials. We need protected time for clinicians and medical teams so they can do more research and foster a culture of research in our hospitals.

We recommend that the NCCP makes available a ring-fenced fund to which cancer trials research units can apply for multi-year funding for staff and capital to ensure continuity and to build up human capital in each unit. While the Health Research Board grant covers costs it is not sufficient funding to provide a stable platform for individual research units to do more.

I will hand over to my colleague, Ms Eibhlin Mulroe.

Ms Eibhlin Mulroe

I thank Professor Hennessy and the Chairman. It is great to be here today.

The implementation of the national cancer strategy could take us significantly closer to achieving more options for cancer patients. To date we have been enabled through funding received from the Irish Cancer Society, which contributes €485,000 annually and the Health Research Board, which contributes €3 million per year. Some €2 million of this funding is distributed among our 11 cancer units in our hospital sites. This funding employs people to work on clinical trials. In 2006, the figure for hospital sites was €3.8 million or almost half. We also receive kind support from the St. Luke’s cancer research fund, which is €165,000 per year. The other half our income is generated through sponsoring our own investigator initiated studies. They are our trials, we run them and we come up with the ideas but they are funded by pharmaceutical companies and working with international groups like ours to bring international trials to Ireland.

Patient involvement is key for us. Cancer Trials Ireland makes a direct impact on Irish patient lives and it is important for the committee to reflect on that. In our submission on 6 March, we included true-life stories of people and their experience. There are many stories of people who have lived longer and with improved quality of life because of their participation on a clinical trial. They have been there for family, major life events and, most importantly, for their children and grandchildren.

There are many misconceptions concerning participation on clinical trials and we try to stimulate public conversations about trials through our Just Ask Your Doctor campaign. We are humbled that so many patients are willing to advocate for cancer trials on our behalf. We have established a patient consultant’s committee, some members of which are with us here today. We are very appreciative of that. Patient involvement in the decisions we make and the research we do is of strategic importance to our organisation.

Our challenge, as outlined by Professor Hennessy, is that we can report little movement on the implementation of the research KPIs. Due to our reduced funding, we have had to decline opening clinically important academic trials and people with a range of cancers, including lymphoma, testicular and endometrial cancer, have lost out. We are unable to be proactive in exploring opportunities to open new trials in areas such as pancreatic, lung, testicular and cervical cancer. This is as a direct result of reduced funding.

The work at our office and at hospital sites is highly specialised and subject to a detailed quality management system with over 50 standard operating procedures, SOPs, designed by us, and is frequently inspected by the HPRA. Patients in Ireland on clinical trials can take comfort in the knowledge that their welfare is monitored at the highest level in healthcare. However, it costs to do more and to maintain quality standards. Therefore, we need increased funding from the Department of Health through the Health Research Board and a budget commitment for the NCCP for research at our hospital cancer units and head office.

The medium-term objective of Cancer Trials Ireland, CTI, is to test and prove treatments that kill cancer and stop it in its tracks. One important difference between cancer trials and all other cancer research is that clinical trials have a profound impact on the lives of people with cancer today. Trials deliver in the medium and immediate term. Today our trials are providing patients with access to proven but not yet available treatments that can save their lives. There are people on trials today who would not be alive if they did not have access to one of our trials.

It is really important for decision makers to understand that when the funding for trials is reduced, life-saving treatments for patients today can be removed. Their options are reduced. Is this a wise approach? We believe not.

We would like to take this opportunity to thank the 15,000 Irish patients who have volunteered on our trials over the past 20 years. They have made a difference for future generations of cancer patients.

I thank Ms Mulroe. I ask Ms Averil Power to make her opening statement.

Ms Averil Power

I thank the Chairman and the committee members for inviting the Irish Cancer Society before the committee this morning. My colleague, Mr. Donal Buggy, the society's head of services, and I appreciate the opportunity to outline the patient perspective on the national cancer strategy.

Thirty years ago, when we first celebrated Daffodil Day, only three out of ten Irish patients survived a cancer diagnosis. Today, six out of ten do. That is thanks in no small part to investment in cancer research - by ourselves, Cancer Trials Ireland, the Health Research Board, HRB, and others - as well as the significant improvement in cancer services in Ireland under the two previous national cancer strategies. For example, the centralisation of cancer surgery, under the national cancer strategy of 2006, has ensured that more patients are being treated by healthcare professionals with more experience and expertise in their particular type of cancer and thousands of lives have been saved as a result.

However, Ireland's cancer outcomes still lag behind other European countries. It was this lag that the 2017 national cancer strategy set out to tackle through a focus on prevention, early diagnosis, providing an integrated model of care where patients get the package of supports from multi-disciplinary teams and improving treatment, particularly in rare cancers and those where our outcomes are still poor. Crucially, the 2017 strategy also recognised the importance of patient involvement in their care and of improving quality of life for cancer survivors. It stressed the importance of investment in cancer research, as a key driver of innovation and a way, as Ms Mulroe of CTI has pointed out, of ensuring access for patients to life-saving medicines that they simply would not get otherwise. It also highlighted that sufficient support for the national cancer control programme and effective workforce planning were essential to delivering change.

The Irish Cancer Society was proud to sit on the steering committee for the development of the 2017 cancer strategy under the leadership of Professor John Kennedy, who is a former chairman of the society. It is a visionary document that puts the needs of patients at its heart and which, if implemented, would reduce the number of Irish people getting cancer in the coming years and would increase survival rates and quality of life for those who do.

That is why it is so disappointing that there seems to be very little momentum behind its delivery. According to the implementation report published in February, six out of seven interim targets due to be met by the end of 2018 were missed. Even worse, the HSE's 2019 services plan explicitly states that the NCCP allocation for this year will not enable the service to match referral demands in areas such as radiotherapy, rapid access clinics and diagnostics. Not only have resources not been provided to the NCCP to deliver the new initiatives promised in the strategy, inadequate funding has been given to deliver existing services to an increasing number of cancer patients. This is truly shocking and will have a major impact on cancer patients and their families.

One of the six missed targets was to ensure patients are diagnosed earlier, thereby increasing their chances of survival. We recently heard from a woman whose GP had recommended she attend a breast clinic to investigate some worrying symptoms. She told us that her doctor had told her that her case was urgent and as such she should be seen at the clinic within two weeks. Still waiting for an appointment, she rang our Nurseline very upset. She was incredibly worried, anxious and distressed, thinking about a possible cancer growing inside her while she was still waiting to be seen.

At the end of 2018, 95% of people classified as having breast cancer symptoms needing urgent investigation were supposed to be seen within two weeks but only 75% were. Nine out of ten patients with certain cancers were to have surgeries within the timelines set out in the strategy and only seven out of ten did. Nine out of ten patients starting radiotherapy treatment were meant to start within 15 days of being ready to do so and only eight out of ten did. Every missed target affects real people - the mother with a lump in her breast, the father with blood in his urine, the healthcare professionals trying to do their best for their patients in a chaotic health service. Publication of the National Cancer Strategy 2017-2026 was a step forward but underfunding and underperformance are two steps back.

One in two of us will be diagnosed with cancer in our lifetime. When we are, we deserve the best chance. We deserve the standard of care promised in the 2017 national cancer strategy. Unless action is taken now, this will not happen. Instead, with more cancer patients and insufficient resources, standards will slip.

That is why we are calling on the committee today to help us ensure that the strategy is implemented by pushing for: a more detailed implementation plan with clear funding, including for the big infrastructural and capital projects called out in the strategy; increased investment in cancer research, including clinical trials and investment in CTI to provide the essential basic infrastructure for those trials to take place; a clear plan and timeline for the delivery of at least one comprehensive cancer centre; completion of the centralisation programme; and action to fill gaps in data and baseline figures in order that implementation of the strategy can be properly monitored. The committee members' constituents, friends, families and communities deserve nothing less.

I thank Ms Power. I now ask Dr. Darrin Morrissey for this opening statement.

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.

I will start by noting that my colleague, Deputy Donnelly, had to go to the Dáil Chamber but he will be back. The witnesses are not escaping him, though they might want to. The witnesses are very welcome and on behalf of the public, I thank them for the fantastic work they do in the field of cancer. I also wish to acknowledge the great success of Daffodil Day. Where I am from in west Cork it is one of the busiest days of the whole year. I wish to acknowledge the sense of volunteerism that is alive and well in Ireland and to congratulate everybody involved in the day.

Professor Hennessy spoke about the value of the clinical trials. That really is an understatement. From the bottom of my heart I thank the witnesses for the work they do, because they certainly save lives. I commend the witnesses. How is it decided who is offered the trial and who is not? Professor Hennessy also spoke about going backwards. Is that totally down to funding or are there other factors?

Professor Bryan Hennessy

I thank the Deputy for the questions. I will address the second question first. As I said in my opening statement, our baseline figure for the number of people diagnosed with cancer who go on trials is 3%. That was calculated from 2014 figures. The strategy recommends that we double that. That is because, as other speakers have noted, international evidence clearly points to the fact that research-active healthcare systems have better patient outcomes. However, the problem is that since the calculation of that baseline figure we actually have gone backwards. The figure for 2018 is more like 1.5%. That is mainly down to cuts to funding for cancer research nationally. That is by far and away the biggest factor that has caused that problem. Ms Mulroe can speak further on that.

The Deputy's first question was about how we choose who goes on cancer trials.

The research programme in Cancer Trials Ireland seeks to develop cancer trials for patients with all the different types of cancer, such as breast, colorectal, bowel and lung cancer as well as the less common cancers such as ovarian and pancreatic cancers. We subdivide different cancers into different areas - different parts of the cancer journey that are treated in different ways. We develop trials in each of those areas but we cannot cover all the different priority areas in all the different types of cancer, not even nearly, with the funding cuts we have experienced, and we want to do that because people with cancer are entitled to cancer trials. When I see a person with cancer in the clinic for whom currently available treatments are no longer working, I can do nothing else to help the person. If there is a trial open that suits the person, it could offer a lifeline. A lifeline is hope and many trials have offered, and continue to offer, hope for people in Ireland with cancer, but not enough of them. If there is no trial there is no lifeline and no hope. That is not the best that we should be offering people.

It is all down to funding again.

Professor Bryan Hennessy


Ms Eibhlin Mulroe

It is. We are joined by Eddie MacEoin and Teresa MacEoin from our patients consultant's committee who are from the Deputy's home town.

Ms Eibhlin Mulroe

They have been on the journey of a clinical trial, which we brought into this country from Australia. It is an Australian trial and our little not-for-profit Irish group is sponsoring that trial not only in Ireland but also in Europe. At the time, the drug involved in the trial was not available in Ireland. It was not approved or licensed. It was an experimental drug so people here would not have had that opportunity. What is important is that the public understands. Trials are for everyone with cancer, irrespective of when or where one is diagnosed. That is why the incidence denominator irritates me slightly. It is more to do with the prevalence. We should be looking at 6% of the prevalence figure, which is almost 173,000 people living with cancer in Ireland. What is important is our hospital sites. Looking at the number of trials we are running across the country, we are doing more in Dublin and Cork than we are doing in the west and north of Ireland. It is important to consider that in the strategy, there is access to trials for the whole country.

The Deputy asked how one gets on a trial. We have started to ask patients to ask their clinicians about trials. We have trials open; they are on our website. One can ask one's clinician and often one can be referred to a trial. What is heartbreaking is when a person comes to a clinic such as Professor Hennessy's and one knows a trial is taking place across the water for the exact condition the person has. We could do it. We have a list of trials in a queue that we cannot open because we do not have the money to do it. It is not just the money in our office; it is also the nurses and so forth. In the hospitals the Oireachtas Members work with and represent the nurses, doctors and data managers who work on those trials within the care journey are maxed out. That is the reason for integrating research trial staff within the hospital budget line items. Dr. Morrissey referred to that. It is important to point out that the trials for cancer happen in the cancer units in the hospital.

I acknowledge the presence of Eddie and Teresa MacEoin from my home town of Bandon and welcome them to Dublin. I have two more questions. The witnesses spoke about there being more cancer patients. Why has cancer become more common? The fact that people are living for longer is a factor. Can something be done to prevent it? Should people be more educated on prevention?

Another matter has come to my notice over the past few days. Some people who are going to hospital to receive chemotherapy are being sent home because there is no bed. Has this come to the attention of the witnesses? They would consider it shocking but how common is it and what can be done about it? It is shocking that somebody would be sent home because there is no bed and the person then misses out on that slot of chemotherapy.

Ms Averil Power

The cancer figures are predicted to double in the next 25 years by the NCRI. There are two main reasons for that. One is demographics. Cancer is predominantly a disease of older people so as the population lives longer more people are likely to get cancer. The other key reason is lifestyle factors. Factors such as obesity, alcohol and tobacco increase the likelihood of getting cancer. We are all born with a certain risk of getting cancer and, as Professor Hennessy mentioned, while many cancers occur randomly, others are genetic. However, by drinking alcohol excessively, not exercising enough and being overweight, we increase our likelihood of getting cancer. The NCRI prediction of cancer numbers doubling is just a prediction and it is within our power as individuals, as an Oireachtas and as a society, to change that prediction and make sure it does not happen. Investment in cancer prevention is one of the main pillars of the national cancer strategy and it is very important. By addressing cancer prevention, we can save lives by ensuring fewer people get cancer in the first place.

Regarding patients being sent home when they have presented for appointments, it happens for all types of appointments and not just those for chemotherapy. The same happens for surgeries due to capacity issues in the hospitals. It is a constant source of distress for patients who call our Nurseline or present at daffodil centres in hospitals and even when patients are referred to rapid access clinics because they have urgent symptoms. The additional distress that comes from not being treated within the required timeframe is incredible. On diagnostic tests when people have been told that they have symptoms that require urgent investigation and they had the test, it is a massive relief to find out that they do not have cancer, but they will have spent that entire period worrying about a possible cancer growing inside them. That is unnecessary and incredibly upsetting for patients. Tragically, others will find that by the time they have got a diagnosis their cancer may have progressed and be harder to treat than it would have been if they had been seen within the required timeframe, which is shocking.

There are a number of reasons for that. One is capital infrastructure. That is why it is important that the capital projects promised in the national cancer strategy are delivered on time and are not delayed by issues such as the overrun for the children's hospital, which the committee discussed earlier. It is also essential that workforce issues in the health service are addressed. Research investment is a key part of that. One of the reasons many Irish-trained consultants, nurses and other healthcare professionals who have gone abroad to get experience do not come home is that they will be unable to do research here because they do not have protected time. We train amazing healthcare professionals to a very high standard in this country. They go abroad to get further experience in some of the best cancer centres in the world but then they must face the choice of coming home and not being able to do the type of research they can carry out in New York, Australia, New Zealand and other countries. That is crazy.

As Professor Hennessy and Ms Mulroe said, patients do better in research active environments and one of the reasons is that research active hospitals and healthcare settings attract the best healthcare professionals. The best people want to be able to carry out research and ensure their patients get access to new treatments and medicines. They want to work in an environment where they have time, head space and access to treatment facilities that deliver the best care. They do not want to work in a system that is chaotic. Providing investment in research and protected time will also address the wider issues around attracting people home and filling the gaps in consultant, nursing and other posts in the health service.

Dr. Darrin Morrissey

I will address aspects of all Deputy Murphy O'Mahony's questions. We acknowledge that cuts were made to the CTI budget over the past number of years. The rationale for this is clearly linked to the diminution in our total funding.

Between 2008 and 2014, the HRB budget on the revenue side shrank from €36.9 million to approximately €30 million. It was a cut of 20% or so. We held off on passing that cut on to CTI for a good number of years, but it was around 2015 onwards when that happened. I am not justifying it in any way, but it needed to happen to allow us to have a balanced portfolio of investment.

The Deputy asked an interesting question about the reason for the increased number of cancer patients. Improved diagnostic measures are a factor, but so is an increased survival rate. The Deputy then extended the question and spoke about cancer prevention. In that context, we have increased our investment in areas of research into diabetes, obesity and lifestyle and links through to the generation of-----

Is that about raising awareness?

Dr. Darrin Morrissey

It is about providing evidence of the need to increase investment, of who to target and of how to target. For us, it is a question of having a balanced portfolio. However, we have made a submission to the Department of Health for increased funding across our entire budget, including CTI. That submission is under review. I hope that there will be a step in our 2019 allocation towards a phased reversal of the original cuts. That said, and to address the Deputy's opening question, this is not just about cash. Rather, it is about the complexity of funding and, as Ms Mulroe, Ms Power and Professor Hennessy have mentioned, the blend of support on the other side of the line in terms of infrastructure, people supports and people to deliver the trials, for example, better and more flexible staffing within hospitals to allow for more research time. It is a complex blend overall and is not just about the direct funding of research. Its indirect component also needs to be factored it.

I thank Dr. Morrissey.

I call Deputy Kelly.

I apologise for jumping in and out. We must work out the issue of simultaneous Question Time and committee sittings. It is not the Chairman's fault.

I thank the witnesses for attending. I have a number of questions and will start where Dr. Morrissey finished. I congratulate him on his work and thank him for it. Regarding the HRB's discussions with the Department, it is obvious that Dr. Morrissey is managing a confined budget. It is concerning that there has not been a breakthrough in the board's budget in recent times, given the knock-on effects on the other groups. If there was one illness that the public, understanding everything, would like to see more funding for, it would be this.

We timed this right and brought the witnesses in first. In light of the groups that will be before us in the next session, it might be helpful if Dr. Morrissey elaborated on how far down the road the HRB is in its discussions with the Department regarding the board's overall funding and what it passes on to CTI. The more information he can give us, the better.

Dr. Darrin Morrissey

Since 2015, which was our lowest point in revenue funding, we have had incremental increases in our budget. It is important to acknowledge that, at a time the overarching pot for research funding was not growing apace, the Department of Health was able to provide increased funding. If the 2019 funding comes in, we will be at a revenue level of €34 million within an overarching pot approaching €46 million. There is growth. In addition, the Department is driving some important infrastructural changes within the health research system. These will allow for more efficient and increased research activity in future years and are fixing decades-long systemic issues in the system. For example, a Bill that has received Cabinet approval and whose heads are being developed as we speak deals with the issue national research ethics, an area that has seen a systemic impediment in the system. With us, the Department may be able to deliver solutions in that regard. Similarly, there was a risk that GDPR would get in the way of research. The health research regulations Bill is a mechanism by which Ireland will be a high-quality location in which to do research in a data sense.

That said, there are many asks on our budget and CTI is only a component of that.

I can imagine.

Dr. Darrin Morrissey

We are maintaining the 10% of our budget dedicated to CTI and the 20% across cancer research in general. We are working actively with the Department on pushing particular priority angles. Clinical research more broadly, including clinical research facilities and infrastructure, is one of the areas where we are in active discussion with the Department.

I am conscious that the HRB is a State body and that Dr. Morrissey is dancing between the lines, but it is obvious that there is a degree of frustration. From a budgetary point of view, the HRB is being asked to make decisions about the competing proposals being put to it. From a CTI or overall cancer perspective, though, it is also obvious that there is not enough funding and that the HRB, while trying its best, could do much more with a little more funding. Would it be fair to say that the HRB could make additional funding stretch?

Dr. Darrin Morrissey

It is fair to say, but I would point out that, as a research funder, we make use of a robust review process-----

I understand that.

Dr. Darrin Morrissey

-----using international experts. To be blunt, it is entirely possible for good causes in terms of research ideas and concepts not to pass international peer review. Sometimes, good ideas are just not quite good enough. The Deputy should be aware of that.

That is life.

I believe Ms Mulroe wishes to contribute.

I was going to ask her a question.

Ms Eibhlin Mulroe

Was the Deputy?

I believed Ms Mulroe would be the right person to go to next.

Ms Eibhlin Mulroe

Good man. That is great, and I thank the Deputy. It is important to reflect on the fact that the HRB is a research funder. It is also a State body with its own board, and the board made the decision to cut our funding by 20% after the overall budget for the HRB was reduced. However, the HRB funds research, which is what the 45 people in CTI do. The least qualified person in our office has a masters in translational oncology. It is not one bit intimidating. These are the people who write protocols, monitor safety, quality and training, and engage in pharmacovigilance, covering all of the processes required in clinical trials for Irish patients to be safe. That is expensive, and it is here where the HRB should be focused. It is where the trials start and are monitored and it is from where the research ideas of people like Professor Hennessy come. Consider the employment of research staff at hospital sites, including research nurses and data managers, and countries that do that well. Denmark is akin to us. Yesterday, I spoke to one of my colleagues in the Health Research Board-Clinical Research Co-ordination Ireland, HRB-CRIC. Denmark is recruiting four times the number of people onto cancer trials than we are because it has integrated the budget line item for research staff in cancer units into hospitals. The situation in the NHS is the same. We do not have a budget line item for research in the HSE, and we never have had.

Is Ms Mulroe saying that it has been ring-fenced but is not being circulated through the entire network as a research budget line?

Ms Eibhlin Mulroe

No budget has been ring-fenced. Last week, I attended a site that could not employ more research staff. It had one nurse and one data manager and was running trials with patients. It wants to do more. A gynaecology trial is about to open, but the site has no research nurse. We, as a charity, will have to try to employ a nurse for that hospital. The same is happening throughout the system.

Universities employ nurses in the system to carry out research. At this point, it is just not good enough. Dr. Morrissey was politely trying to say the Health Research Board should fund research, but activity on hospital sites is in the area of care. On access to a clinical trial, it is about caring for patients and providing the best option for parents. Professor Hennessy will probably want to speak about this issue. If we want to attract more people like him to the country to carry out research and work here, we will have to up our game because it is through research that we get a better standard of care for patients. That is when we get the right people working in our centres. As committee members know, it is a challenge to attract people to work in hospitals here, but I guarantee that if we increase investment in research and hospitals, it will happen.

That is very revealing.

Professor Bryan Hennessy

I stress the point that international evidence tells us again and again that research active healthcare systems have better patient outcomes. We are trying to get to that level. If we are to improve our cancer trial activity levels and make cancer trials available to more patients, we really need to do two things, the first of which is to have a research active healthcare system in which research activity is part and parcel of everything that happens. In other words, we need core-----

In order that it is ingrained.

Professor Bryan Hennessy

Yes, but it is not.

Professor Bryan Hennessy

Exactly. It is regarded as an add-on. In the hospital units in which others and I work we struggle day to day with funding for our activity and staff. We receive much appreciated funding from the HRB and the Irish Cancer Society, but we have to seek supplemental funding from charities and through our own activities. This is not the way it should be. We should have stability.

A cancer trials unit should be a part of core hospital infrastructure. The nurses, doctors and research staff should not be add-ons. They should not have to be hired through the research unit. They should be an integral part of the hospital, like any other doctor, nurse, physiotherapist or other staff member, but they are not. The first piece we need to advance the level of cancer trials activity is core hospital infrastructure which is really the responsibility of the Department of Health. The second thing we need, as Dr. Morrissey said, is direct funding for research that will go directly to our units to engage in research activity and trials, as well as our central office at Cancer Trials Ireland. That is what the HRB should be funding. It should not have to support core hospital infrastructure. We need core hospital infrastructure and more direct funding from the HRB for research in our central office and hospitals throughout the country.

Ms Averil Power

Research is a basic component of any modern day health service and a core aspect of the system. That is why it is mentioned in the national cancer strategy, of which recommendation No. 47 states the HSE will ensure clinical cancer research and the staff who deliver it will become a fully integrated component of cancer care delivery. It should not be down to charities such as ours to fund basic components. The Irish Cancer Society provides almost €500,000 a year for Cancer Trials Ireland, much of which is core funding which in other countries would be provided by the health service. It should not be for us to fill the gap. We want to be able to fund research programmes, not basic infrastructure.

Uniquely, we fund protected time for clinicians. One of the big issues for researchers in Ireland is that they do not have dedicated time to carry out research as part of their contracts. If medics working in our system want to carry out research and be part of a cancer trial, whether Irish or international, they have to do it on top of their existing contracts. If people who already have insanely busy weeks and are under pressure to deliver basic clinical services want to conduct cancer research, they have to add another 20 or 30 hours from their own time to carry it out. That is crazy and impossible. It is also unreasonable and the reason healthcare professionals do not want to return here from other countries where research is a core aspect of their day job.

It is all interconnected.

Ms Averil Power

Absolutely. That is why we need investment in infrastructure. We need Cancer Trials Ireland to be funded to fill these core activities in order that we can dedicate charitable funding raised on Daffodil Day and through other initiatives to doing extra work, not filling a gap the State should be filling with funding any other decent health service would provide.

As the Chairman is going to cut me off, I have one last question.

What we have heard is very revealing. For the committee, it is glaringly obvious and in flashing lights that we will have to follow up on this issue with the Department. To break it down into two simple things, there is the funding issue - in fairness, Dr. Morrissey has been very diplomatic - and also an integrated process issue. There is a process issue along the entire spectrum of the health system when it comes to research. The issue has been isolated here in this instance as it pertains to cancer research. The committee should come back to it.

I know Ms Power and do not want to leave without asking her a question about her statement which was frank and direct, which is what I always expect from her. I was very much taken by what she said about underfunding and underperformance. She gave various statistics to outline the position at the end of 2018. Specifically, she stated the HSE's 2019 service plan explicitly stated the allocation for the National Cancer Control Programme, NCCP, would not enable the service to match referrals in services such as radiotherapy, rapid access clinics and diagnostics. Will she elaborate on what she said as it is deeply concerning, although I was aware of it? Will she elaborate on the scale involved? Are there geographical issues involved? Are there other issues about which we need to know? How much information does she have and how deep are the statistics she has available?

I am conscious of thetime as we have another session which I hope will start at noon. I ask Ms Power to be concise in her answer.

Ms Averil Power

The allocation for the NCCP in 2019 represents an increase on the figure for last year.

Ms Averil Power

As outlined, the numbers of Irish people with cancer are rising at such a rate that we need to invest a lot more just to stand still and maintain existing services. There are completely unacceptable waiting lists for existing services such as screening, diagnostic tests and radiotherapy, let alone fulfil commitments given in the national cancer strategy. That is why we call for more money to be given to the NCCP, in which there are excellent professionals working who would like to do more, but they can only work within the budget they have been given by the Government which simply is not enough. Patients are suffering as a result.

Does Ms Power have more deeper statistics?

Ms Averil Power

Waiting times for tests vary from hospital to hospital.

Will Ms Power provide us with statistics she thinks would be useful such as the level of geographical coverage?

Ms Averil Power

We will come back to the Deputy with them.

I thank the delegates for their presentations. It is important that we carry out a review of this very important issue. I want to open on the issue raised by Dr. Morrissey - the need for a co-ordinated structure or group in this area. Whom does he believe is responsible for developing it? How does he believe it should be set up and within what timescale?

Dr. Darrin Morrissey

To be direct, the NCCP is charged with setting it up. It is something about which Dr. Coffey will speak. The timeframe is now. It needs to be set up now, with a broad cross-section of stakeholders. Deputy Kelly used the word "interconnected". It is an interconnected system. Therefore, a wide range of stakeholders are required. Certainly, the Department of Health is four square behind it and central to it, as are the NCCP and the HSE. In our submission we outlined the data. We assessed the funding provided throughout the health service that trickled through to cancer research. Whereas the Health Research Board is the biggest contributor, Science Foundation Ireland, the Irish Research Council and others also have a stake in the game. The charity sector certainly needs to be involved. We did not mention it, but it is arguable that there could be a role for industry at the table.

The system, as it develops, needs to be an enabling environment for industry players doing clinical trial activity, so they need to be involved. As we put in our submission, the involvement of patients and the public is most critical of all, not just through representative groups but directly. We propose a mechanism which is used by the James Lind Alliance, which is a mechanism for research prioritisation in the context of partnership. That is a potential avenue to explore. It would involve a certain amount of investment because of the broad stakeholder group but there are other methodologies too. With regard to timelines, we have been engaging directly in recent weeks and months about getting this group set up.

Could Mr. Morrissey see that being established within the next six months? Is that feasible?

Dr. Darrin Morrissey

I think so.

We might mark that for review in six months, to try to set a timeline to get it set up. Since this meeting started, I have got a number of texts from people involved in research who seem, for some reason or another, frustrated by the way the system operates. Is there a situation where people feel left out of the structure of research? Is there a reason why any one group of people working in the hospital structure feel left out and that they cannot get in to get support for the research that they want to do? Have the witnesses come across that?

Professor Bryan Hennessy

Yes. Much of that may reflect recognition and support from the management of the existing hospitals. As Ms Mulroe said, research is not a line item on the Department of Health's priorities or budget. In trying to put together cancer research units in the hospitals, we all face that struggle. We have to do it ourselves and find our own budget on top of what we get from the Health Research Board and Irish Cancer Society. We have to invest our own time, as Ms Power said, because we do not have protected time for research. We have to do those extra hours on top of the primary responsibilities without protected time for research. That is all frustrating and fundamentally reflects the fact that research is not an integral part of our healthcare system. It is not an integral part of the priorities recognised by the management of the different hospitals and it needs to be.

Is it a situation where medical professionals who want to do this in their own time within the hospital structure are being restricted from doing it even though it is in their own time?

Ms Eibhlin Mulroe

Yes, I would say that. Would Professor Hennessy, from his experience in a hospital?

Professor Bryan Hennessy

They are not being actively restricted from doing it but they are restricted in the sense that there is no support from management because it is not recognised as an integral part of the healthcare system. They are restricted from doing it because of other commitments without a protected time for research. When one has a busy clinical load, that is all that one can really do without a protected time for research. That is an indirect block on developing a research programme or portfolio in a hospital because proper protected time is needed to do that, with recognition and support from hospital management, which needs to come down from the Department of Health. Research needs to be an integral part of the healthcare system.

Dr. Darrin Morrissey

From a research funder's perspective, it is important to say that we are open to everyone with qualifications to come in and we run programmatic calls so, in that sense, no one should feel excluded. With Cancer Trials Ireland and other clinical trial networks, we try to put funding into the system to allow the best people to come together to deliver the right numbers of patients with the right specialty skills. There is no doubt that it is incumbent on those networks to ensure that the net is cast very wide and that there are no impediments, whether infrastructural or otherwise. As it happens, with Cancer Trials Ireland, we ran an international review last year which was a positive review with regard to scientific outputs but it asked questions about appropriate structures and how financial flow happens through the system, especially in the context of interconnectedness between trial activity and it having to happen in hospitals, where there is change going on related to Sláintecare, regional integrated care organisations and such. On the back of that recommendation to look at the structure, we are running a more finance and structure-oriented review, for which we are bringing the terms of reference to our board in the next few weeks. It then will happen over the coming months to ensure that Cancer Trials Ireland is structurally fit for the future in a transforming healthcare system.

Ms Eibhlin Mulroe

It is crucial that Sláintecare builds a clinical research strategy into future planning. I do not believe it is there. If we are to integrate trial activity in hospitals, it needs to be in that document. I am grateful that Dr. Morrissey has brought that up. The Senator asked if there are any researchers and clinicians at hospital sites who are restricted from doing studies. There is rarely anyone saying that someone cannot run a trial. A contract for a trial could go to the CEO of one hospital and the same contract could go to another, and one hospital will not sign it while the other will. That means that patients in the hospital where the contract is not signed are taken out of the mix for access to clinical trials. There is not continuity for how we approach simple things such as contracts for trials. That needs to go at a very high level within the national cancer control programme, NCCP, and the HSE, and would solve some issues. I imagine some of the researchers the committee has heard from have mentioned that.

The Senator asked if people feel left out. Some 70% of the money that we distribute to hospital sites does not come from the Irish Cancer Society, the Health Research Board or the HSE but from the money that we generate for our own trials. That funds staff at hospital sites. That comes from collaborative groups and from industry that are funding, investigating or initiating the study. Dr. Morrissey is correct that industry should be involved in this conversation. We are a funder and we are not part of the newly-established research group, yet we fund more trials on cancer. I understand the rationale behind it because we are a charity. We have looked at the figures and know exactly how much it costs to run a trial and how much we spend on every one of the 130 trials that we have on our books. It is worth all of us reflecting on that.

I got a paper prepared by the Oireachtas Library and Research Service. I know it was only prepared in ten days. It is a comparison with other jurisdictions about cancer research. In Denmark, the number of new clinical trials in 2016 was 0.0049% of the population whereas in Ireland it is 0.002%, so we are 50% lower than Denmark, which has a similar population to Ireland. Denmark seems to have a very co-ordinated system. That report stated that barriers to trial participation are structural, clinical, attitudinal and differ according to demographic and socioeconomic factors. That finding was in a report produced in 2016 in a research project in the United States. It is important to co-ordinate what is going on and, if possible, to double the numbers. The witnesses' contribution this morning can help us to move towards that.

I welcome our guests to discuss this important subject. I have taken a particular interest over the years in cancer research, and particularly statistics. The correct statistical information gives an idea where attention should be directed. In recent times, it has not been possible to get this information through parliamentary questions, whereas it had been in the past. Now we are referred to the annual report. The problem is that it is annual. There are no reports on a weekly, or bi-weekly basis, for instance. I will engage with the Minister in an effort to change that. I mean no disrespect to the people who compile them, but a report that is over a year old may lack accuracy.

Following on from Senator Burke's questions, have the organisations represented here made comparisons with the outcomes in countries similar to Ireland, which spend more on cancer research, diagnostics, etc., so that we might know what should be done to achieve similar outcomes? They should be better but they may not be.

Various forms of cancer, including melanoma, keep coming up again and again. Early diagnosis is important but, again, public representatives cannot always get information on these on a regional basis. It can be informative to find out the incidence of different cancers. We have been told in the past that it was due to better diagnostics, healthcare or an emphasis on healthcare. Do the witnesses have any information that would be useful?

More could be done on the educational element of cancer prevention. Will the witnesses comment on that in respect of the various forms of cancer? Some types come to mind in particular.

I refer to genetics. I am interested in the extent to which those here have identified the genetic tendency towards cancer. There seems to be solid evidence for that. I am aware of it but would like some more information about the extent to which there can be intervention at a crucial stage in the patient's favour.

I am sorry for going on for so long but I might not get another opportunity. It is fully appreciated that every aspect of the health services suffers from a lack of funding because of the downturn in the economy. We cannot address that all in one go. It is not easy. It has been repeatedly brought to our attention through the HSE that to attract the right staff in the numbers required and to retain them, it must compete with Australia, America and Canada. This is a difficult issue. It is not easy for patients because they will feel they are entitled to the best possible treatment available as soon as it is available anywhere. Patients have experience trauma because treatments available elsewhere are not available here for various reasons. Perhaps it because we have been too slow to react or it is due to lack of funding, or there are other reasons. How can the most salient factors be addressed in the shortest time possible?

I refer to the availability and access to research through public and private sectors. To what degree do the organisations represented rely on either the public or private sector?

I thank the Deputy. In the interests of time, we will bank those questions and I will ask Deputies Brassil and Donnelly to ask their questions before we move on to our next section.

I welcome everyone for coming to the meeting and for the wonderful work that they all do both collectively and individually.

My specific area of interest is in new drugs and their availability in the system. Do the witnesses find that the slowness by which drugs are made available or reimbursed is becoming a challenge to their strategy and trying to achieve targets? We would like to be at the top end in life-saving. We went from a survival rate of three out of ten to six out of ten. Drugs are being developed to treat individual patients. If that is the way drugs are going, will we be left behind as a result of the methodology used to reimburse drugs? Is it necessary to separate oncology drugs from all other drugs because time is of the essence? If someone is being treated and a doctor can get to them early, he or she can save the person's life, but if he or she does not, there is an inevitable consequence.

I would also like the witnesses' opinion on drugs which are life-extending rather than life-saving. I have a specific interest in lung treatment where we are behind the curve. The drug, Tagrisso, is reimbursed in 20 countries but not in Ireland. It has significant life-extending capabilities for those taking it. Are reimbursement delays a false economy for the health system because of the inevitable costs that follow when somebody enters end-of-life care?

I have a question for the HRB. What is the funding split between primary and applied research? I have spoken to some of our scientists whose view is that funding for primary research has been largely stripped out in, say, the past ten years. Several have described how they might have been working on particular molecules and undertaking basic research that could have led to all sorts of wonderful things but that research was stripped away. They felt that they were essentially being outsourced to the pharmaceutical industry to conduct testing on their drugs and their impacts. How much of cancer research is not linked to any specific drug or trial but is just core, basic lab-based research?

The next question is for the HRB and Cancer Trials Ireland. Regarding all the trials that are being funded, are any drugs publicly or co-owned or is all the intellectual property privately owned? If all the intellectual property is privately owned - and this is essentially private companies trialling their own products - what percentage on average do companies fund to trial their products versus the State or third parties for that?

I thank the HRB for its presentation, which was useful. Its first recommendation was to establish a national cancer research group to improve co-ordination. That sounds like something everyone would support. What is the current status of that? The second recommendation was to develop a culture in the cancer care system that values research, which struck me as bizarre.

Professor Hennessy stated that there is a lack of recognition within the healthcare system to the effect that research is relevant. That is as peculiar as hearing from the university sector that university professors do not believe research is relevant. I do not believe it to be the case. Our medics may be so overworked that they never get the time to carry out research, and their incentives are misaligned.

Professor Bryan Hennessy

That was not referring to medics.

The reference was to within the research system. I would be astounded if it was true. When Professor Hennessy refers to the healthcare system in this regard, is he including doctors? The third recommendation is to build patient and public trust by improving the use of cancer data. I read through this and it sounds like the sort of thing a PhD student or a team of boffins could knock together in about a week. I am probably oversimplifying somewhat but we are talking about getting a bunch of existing datasets and doing clever things with the data. Is that not something that could be knocked together very quickly? There would be a need to hire very clever people. Ultimately, however, the work involved would not appear to be difficult.

I was really taken by the Irish Cancer Society stating that six of the seven targets for implementation have been missed. Why is that and what do its representatives think is going on? We will shortly be talking to some of the people whose job it is to ensure implementation. It is very stark that the HSE's 2019 service plan explicitly states that the NCCP allocation for this year will not enable the service to match referral demands. That is pretty terrifying if we are saying it in our own delivery programme. Why is that the case? What does the Irish Cancer Society identify as the biggest opportunity? It has listed about seven or eight things it would like to see but if there was one thing we could sort, what would be the most useful?

My final question to Cancer Trials Ireland relates to what Deputy Brassil stated. We need to fund cancer trials. My guess is that the per-patient cost is a lot greater than the cost providing them with approved drugs, although I know there are wildly different costs involved. Could we have a sense in basic terms of how many patients we could treat with existing drugs for every patient on a trial? I know it is a huge range but what would be the average?

There are a lot of questions banked up there. I ask our guests to deal with as many as possible before we move on.

Professor Bryan Hennessy

One issue that is key to these discussions is the value of research in the healthcare system. It relates back to the idea of creating core infrastructure in the hospitals for cancer trials for clinical research. It is not a lack of value for research by medics, doctors or nurses. In the system, from the Department of Health down, there is no recognition that research should be integral. A hospital manager will have a ward that needs ten nurses. It is part of his or her job to get ten nurses for that ward. There is no recognition of cancer research in that way. There is no budget line item in hospital management or the Department of Health stating that the cancer trials unit in that hospital needs ten staff members to be hired. While the hospital management will staff the wards, they will not staff a cancer trials unit at the moment because such units are not recognised as an integral part of the system. We doctors and nurses in the research system have to staff our own cancer trials units with our own moneys from the Health Research Board, the Irish Cancer Society, Cancer Trials Ireland, charities, donations from patients and so on. When we talk about valuing research in the healthcare system, we need the Department of Health, the NCCP, the HSE and hospital management to recognise the cancer trials unit as an integral part of the hospital as much as any ward in that hospital and for such units to be staffed accordingly.

Ms Eibhlin Mulroe

That describes the passion that exists in the system from the members of Cancer Trials Ireland, including the medical oncologists, radiation oncologists, haematologists and cancer research nurses who are working with patients every day. Those patients are looking to them for other options and they do not turn their backs on them. This organisation started 20 years ago to provide an opportunity for Irish patients with cancer to have another option. Deputy Donnelly asked about the IP and the costs around that. We commissioned DKM Economic Consultants to do an economic and health impact analysis in 2016. We were able to prove that there were cost savings of €6 million in 2016 in drug costs. That was for drug costs that would otherwise have been available within the system. The Deputy asked how much more expensive it is to put a patient on a trial than not to do so. It is actually cheaper for the system to put a patient on a trial. That is in very crude terms. We can prove it. The health impact takes it a step further because that patient gets quality adjusted life years, or QALYs as they are known in health economics. We have been able to prove that thousands of patients have had years of QALYs. One QALY is one perfect year of life. Many have got five to ten of them. That is one of the reasons trials are so successful now; they are running longer because patients are surviving for longer. The economic impact is very real. It is probably going to increase over time.

Deputy Brassil talked about access and innovative treatments. We are not in the business of health economics. That is not what we do. We run trials and the drugs we are working with are mostly experimental. Very often with experimental drugs, we are comparing standard of care treatments with an investigational product. Professor Hennessy may wish to jump in here. When that happens, if it is a pharmaceutical sponsored trial or if it is one of our investigator initiated trials, that drug is covered. The cost of those drugs on both arms of the trial are covered. In terms of the access piece, it is going to be an issue. I think the Irish Cancer Society will want to speak to that. However, in the absence of that, as I mentioned earlier, we have a patient here who benefited from being on a trial in respect of a drug that was not available in the system. We up the game in clinical trials and offer more options to Irish patients, and they live longer.

Dr. Darrin Morrissey

Deputy Durkan's question in the context of education was very good. It is very important to educate the population and the healthcare professional community on the importance of prevention. In collaboration with the National Cancer Institute in the US, we co-fund a series of fellowships in cancer prevention as well as courses in Bethesda for medics and allied healthcare professionals. Hundreds of those courses have been taken up. These are the things we engage in which are important.

Deputy Donnelly used the term "primary research". The term we would use is basic biomedical research and the question is where that fits within the HRB brief. There is no doubt that during what I will euphemistically call the austerity years, the focus for the Department of Health and the HRB definitely shifted towards the more applied end of research. That is a matter of fact. We have moved increasingly away from funding basic research. However, there is still a place in our portfolio for basic biomedical research. Currently ,out of a revenue stream of approximately €35 million, in the region of €2 million is dedicated to basic biomedical. That is across all disease areas, not for cancer necessarily. We would have to examine the specific cancer data for that.

I know the Chair is trying to hurry us along. However, to make one point on that, Dr. Morrissey lives and breathes this stuff and understands it better than I ever will. A concern has been raised with me by numerous scientists independently of each other over the past few years. Dr. Morrissey's answer is frank; it is the most frank answer I have had and I thank him for it. The concern they are raising is that we have to have a pipeline the whole time. There is this balance in a technology-readiness pipeline, and there are all these different ways of looking at it. Numerous scientists have informed me over the years that because of this shift away from basic research, we are starving the pipeline for the future. We can still live on development and innovation from basic research done 20 or 30 years ago but, ultimately, it is going to catch up with us.

Dr. Darrin Morrissey

I have sympathy with that. We have use the term "interconnectedness"; there are other funders in the system and we need to approach this in a national funding way.

Innovation 2020, the national research strategy, calls for a place for basic research funding, and it looks as if things are moving in this direction, as Science Foundation Ireland will play a bigger role. The quantum of that role remains to be seen. Engagements between the Health Research Board, as a more applied health research funder, and other funders, will allow a basic funding pot to flourish. We engage with organisations such as The Wellcome Trust. We co-fund with it and pull leverage funding into the State for use for basic funding. We do the same with the National Institute for Health in the United States, and others.

I wanted to address many points but I am aware that we are running out of time. The data issue is more complex than has been outlined. The recommendation is founded on the issues that abound whatever jurisdiction one is in, in the context of data governance, mining people's data, and data protection. Linkage is not easy. A lot of investment has come into this area, most notably from companies based in Northern Ireland, in order to set up safe havens for data linkage, using principles that the CSO would know a lot about. We wrote a paper in 2016, known as the data access, storage, sharing and linkage, DASSL report. I have copies of the report and am very happy to hand them out. It makes proposals which the Department of Health is minded to run with. It is more complex, but we believe there is a solution within it.

On the subject of intellectual property, IP, ownership, all funders in Ireland sign up to the national IP management protocol. The simple answer to the question Deputy Donnelly asked about the percentage that flows through each project is that it depends on the project and the skin in the game that the industry or private sector partner has. The rules are laid out in the national IP framework, which is linked to state aid and European legislation. That is a simple answer.

In broad terms what is the average?

Dr. Darrin Morrissey

I do not know.

Ms Eibhlin Mulroe

Cancer Trials Ireland is a charity; it has no IP. I could talk again about patient organisations which have run and lead their own research. We are not able to.

Ms Averil Power

I will answer some questions and my colleague, Mr. Buggy, will answer the rest. Deputy Brassil asked about access to medicines. There is no doubt that there is huge potential for personalised medicines to transform patient experiences and outcomes. It is particularly stressful for patients, especially those with a terminal diagnosis, to know that there is a new medicine that could either save or extend their lives but which they cannot access, particularly in circumstances where the same medicine is available across the water through the NHS. It is a big issue and it is a growing issue. Patients feel that they are caught in the middle between the Government and the industry.

The National Centre for Pharmacoeconomics, NCPE, has quite a transparent process which looks at the data and interrogates the proposition put forward by pharmaceutical companies. After the recommendation is made it goes to the Department and the into the political system, which is a black hole. There is a sense among patients that decisions are very political and that there is no fairness to the process. It seems to be a case of shouting the loudest, which is an approach that is particularly distressing for patients. We need a fair system that is based on data, one in which a patient can be confident that if his or her doctor believes that his or her particular type of cancer will respond to a new medication that he or she will be able to get access to it. These medicines are expensive, and they do not work for everybody. We need to educate patients in that area, because sometimes they read about so-called miracle drugs through the media, and believe that because it has worked for one patient with a particular type of cancer it will work for them as well. Unfortunately that is not the case. Where the data is strong enough, however, and where the NCPE is satisfied that there is a clinical and pharmacoeconomical benefit to providing that medicine it should be provided. That is a big issue.

Does Ms Power have figures on how we compare to the EU averages for the time of reimbursement for new drugs? Is she does not have it perhaps she could forward it to me.

Ms Averil Power

We can provide those figures.

Deputy Donnelly asked what is the biggest opportunity in this area, and what is the one thing we can do which would make the biggest difference. In the medium to long term the answer is cancer prevention, given the fact that four out of every ten cancers are preventable though things such as the HPV vaccination and through lifestyle changes. We each have it within our power as individuals and as a society to ensure that cancer numbers do not double over the next 25 years, as predicted. That would make a massive difference. In the short term early diagnosis would help. A frightening number of Irish patients - some 3,000 a year - are diagnosed in emergency departments. Approximately three quarters of those cancers are at a late stage, when the cancer is difficult, if not impossible, to treat. There is no doubt that thousands of lives could be saved if people were diagnosed earlier, and if we tackled those issues around waiting lists.

How do those numbers-----

We have to move on.

I am aware of that, but I have been here since 9 o'clock this morning. Has there been any comparison between those who have had the benefit of early diagnosis and those who have not?

Ms Averil Power

For testicular cancer, if it is found at an early stage 19 out of 20 patients will survive, but at a late stage only one in ten will. The difference is massive. The best way to save the lives of people with cancer is to diagnose people early. Earlier diagnosis means that the treatment options are much wider and the chances of survival are greater. Unfortunately, for far too many patients, that is not happening, and lives are being lost as a result.

Mr. Donal Buggy

On the question of outcomes for cancer, when we first organised cancer into ten-year strategies in 1996 outcomes for cancer in Ireland were the worst in western Europe. We are now mid-table, and we have got there by implementing ambitious cancer strategies, which shows that the ten-year process strategy works. In comparison to other countries, Denmark, Norway and Austria have better outcomes for cancer than we do. We can, through the implementation of this strategy over the next ten years, achieve the target of getting from mid-table to the top quartile of cancer outcomes in Europe. That is the prize available if we choose to invest in this particular strategy. We should make that choice to invest in the research, the services, the co-ordination and the networks required to deliver world-class cancer care.

The other point raised concerned genetics. Genetics and genetic services are a challenge. Funding is not available to support comprehensive genetic services. I am aware of services in St. James' Hospital, but they were suspended last year because the symptomatic numbers coming through overwhelmed that system. There is leadership in that area, but we have to put funding behind it. Another issue is access to preventative surgery once one has been brought though those genetic services. If one requires preventative surgery can he or she access it? It is considered elective at times.

A question on cancer prevention and education was asked. Cancer prevention has been one of the areas of progress in terms of this strategy and the development of a cancer prevention network and a cancer prevention function within the NCCP. That is vital because, as Ms Power said, four in ten cancers are preventable. Over the course of this strategy over 100,000 people will get a cancer which is preventable through changes in lifestyle. Unfortunately, the changes we make now will not be seen for 20 or 30 years, but unless we act now cancer rates will double by 2045, as predicted.

We could speak about this subject all day; many of the witnesses want to continue speaking. Unfortunately there is another set of witnesses who have to come in, and we have a time limit on the availability of the room. I thank the witnesses - Professor Hennessy and Ms Eibhlin Mulroe from Cancer Trials Ireland, Ms Averil Power and Mr. Donal Buggy from the Irish Cancer Society, and Dr. Morrissey and Ms Mairead O'Driscoll from the Health Research Board - most sincerely.

Sitting suspended at 12.20 p.m. and resumed at 12.25 p.m.

We will continue examining the national cancer strategy. The next group of witnesses comprises Dr. Ana M. Terrés, head of research and development at the HSE, Dr. Jerome Coffey, national cancer control programme, NCCP, at the HSE, Mr. Michael Conroy, principal officer in the cancer policy unit at the Department of Health, Ms Judith Corcoran, assistant principal in the cancer policy unit at the Department of Health, and Ms Teresa Maguire, head of research services at the Department of Health. I thank them for attending and apologies for keeping them waiting.

By virtue of section 17(2)(l) of the Defamation Act 2009, witnesses are protected by absolute privilege in respect of their evidence to the committee. However, if they are directed by the committee to cease giving evidence on a particular matter and they continue to do so, they are entitled thereafter only to a qualified privilege in respect of their evidence. They are directed that only evidence connected with the subject matter of these proceedings is to be given and are asked to respect the parliamentary practice to the effect that, where possible, they should not criticise or make charges against any person, persons or entity by name or in such a way as to make him, her or it identifiable. Any opening statements that the witnesses may have made for the committee may be published on the committee's website after the meeting. Members are reminded of the long-standing parliamentary practice to the effect that they should not comment on, criticise or make charges against a person outside the House or an official either by name or in such a way as to make him, her or it identifiable.

I invite Mr. Conroy to make his opening statement.

Mr. Michael Conroy

I thank the committee for the opportunity to contribute to its examination of the National Cancer Strategy 2017-2026. I am joined by Dr. Teresa Maguire, head of research services unit at the Department of Health, and Judith Corcoran from the cancer policy unit.

The national cancer strategy is a comprehensive policy document that aims to meet the needs of cancer patients in Ireland for a ten-year period. It is the third national strategy and builds on the history of strong policy in cancer over the past 20 years. The main achievements of the 2006 strategy included: provision of equal access to high-quality treatment; the establishment of designated cancer centres; multidisciplinary management as the standard of care for cancer patients; the centralisation of some cancer surgery services; rapid-access clinics for breast, lung and prostate cancer; significant increases in access to medical oncology and cancer drug treatment; a national programme for radiation oncology; and cancer screening on a nationwide basis through BreastCheck, CervicalCheck and BowelScreen.

The establishment of the NCCP to implement the strategy recommendations, followed in 2007. The National Cancer Strategy 2017-2026 is aligned with Sláintecare and its implementation is an important part of the Sláintecare action plan. The vision of the strategy is, "Together we will strive to prevent cancer and work to improve the treatment, health and wellbeing, experiences and outcomes of those living with and beyond cancer." We developed the strategy in collaboration with clinicians, nurses, health and social care personnel, patients, carers and organisations such as the Health Research Board and the Irish Cancer Society. The strategy sets out four goals, namely, reducing the cancer burden, providing optimal care, maximising patient involvement and quality of life, and enabling and assuring change, that are crucial to the achievement of the vision.

On reducing the burden, cancer prevention is a cornerstone of the strategy. The proportion of cancer incidence attributable to modifiable lifestyle and environmental factors is estimated to be between 30% and 40%. Of these risk factors, smoking has by far the largest impact and, in implementing the strategy, we are working towards the goal of making Ireland tobacco free by 2025, including through the enactment of legislation on standardised retail packaging for tobacco. We also need to maintain our efforts to reduce the number of avoidable cancers through the promotion of healthy lifestyles, in areas such as improved diet, increased exercise and reduced alcohol intake. We are focused on diagnosing cancer at the earliest possible stage as a critical step in reducing mortality and improving survival and quality of life. Public and health professional awareness of warning signs for cancer is vital. Early presentation is important, as is ensuring that people take up the offer of cancer screening.

In regard to optimal care, the primary aim for all cancer services is to provide evidence-based care that is effective, safe, of high quality and patient-centred. The concept of a continuum of care will underpin the approach to patient services, from prevention, early diagnosis and evidence-based, high-quality, patient-centred treatment to appropriate follow-up and support.

Multidisciplinary team working has led to better decision-making, more co-ordinated patient care and improvements in the overall quality of care. It is proposed that all patients diagnosed with cancer will have their cases formally discussed at multidisciplinary team meetings. This strategy is building on the progress made to date through supporting the key role of designated cancer centres in cancer treatment. The centralisation of surgical services for more cancers is being progressed and radiation oncology and medical oncology will continue to be improved and expanded.

A report in January from the National Cancer Registry confirmed that the programme of centralisation of cancer services is contributing to ongoing improvements in cancer survival. In addition, the CONCORD programme established global surveillance of cancer survival as a metric of the effectiveness of health systems. The most recent programme data from 2014 indicates that, in Ireland, survival has increased for all tumour types studied. Our aim now is that survival rates in Ireland will reach the top quartile of European countries by the end of the strategy period.

Patient involvement is a key aspect of the strategy. We now have an increasing number of cancer survivors with their perspectives to offer on the development of services for cancer patients. Building on the significant impact of the cancer patient forum in developing this strategy, a cancer patient advisory committee is now in place and patient involvement in policy-making and the delivery of services is being promoted in the implementation of the strategy. With many people living significantly beyond cancer diagnosis and treatment, there is a need to develop and implement survivorship programmes. This has consistently been a key concern of patient representatives whose focus is on quality of life. These programmes will emphasise physical, psychological and social factors that affect health and well-being, while being adaptable to people with more specific survivorship needs following their treatment.

The NCCP provides leadership across the continuum of cancer care. It promotes the provision of high-quality, evidence-based care to optimise outcomes and patient experience. The NCCP has been instrumental in reforming and improving how services have been delivered. Under this strategy, the NCCP is working closely with hospital groups and community healthcare organisations to lead service reorganisation and to ensure that integrated care pathways are provided for those affected by cancer. The focus is on ensuring that the objectives of the strategy will continue to underpin decisions on cancer care across the health service.

The strategy emphasises the positive impact of research activity on patient care. The development of a culture in the cancer care system that values research to the benefit of patients is an aim of the strategy. The data collected and managed by the national cancer registry are a foundation for research activity to drive improvements in cancer care for patients. Cancer research also supports the recruitment, retention and motivation of excellent clinical staff who drive the development of high-quality, efficient services.

The first National Cancer Strategy 2017-2026 implementation report for 2018 was published the Minister on 4 February. This report focuses on the implementation of the 52 recommendations. Highlights include legislation on standardised retail packaging for tobacco, the passage of the Public Health Alcohol Act 2018, progress towards a national skin cancer prevention plan, new posts in medical and surgical oncology, capital developments relating to radiation oncology, publication of a model of care for oral anti-cancer medications, the commencement of the roll-out of a national cancer information system, the progress being made by working groups on survivorship and psycho-oncology and the establishment of a cancer patient advisory committee.

The Department and the NCCP are working together to ensure that progress is maintained on the implementation of the strategy. We hold monthly performance oversight meetings as well as quarterly review meetings specifically focused on reviewing progress on the implementation of the strategy recommendations. The strategy was formulated with the input of all stakeholders and it enjoys broad support. The Department and the NCCP are committed to working with these stakeholders to progress its implementation so that many people will avoid cancer in the coming years and those with cancer will receive comprehensive quality treatment and will maximise their quality of life following their treatment.

I thank Mr. Conroy and now ask Dr. Jerome Coffey from the NCCP to make an opening statement.

Dr. Jerome Coffey

I am accompanied by my colleague Dr. Ana Terrés, head of research and evidence of the HSE. We submitted two presentations to the committee already. In this brief opening statement, we would like to focus on the development of cancer services in Ireland over the term of the national cancer strategy to 2026 and the roles of the NCCP and the HSE’s research and evidence function in this.

In May 2015, the steering group and patient forum charged with developing the third national cancer strategy were established. Working on this, it became clear how much had changed in cancer services since publication of the previous strategy in 2006. The programmatic approach and the national scale of organisation and investment have been commended by an international external evaluation panel and are in alignment with EU cancer control principles. Recommendations in the strategy are also consistent with a number of areas in the Sláintecare report, published by the Committee on the Future of Healthcare in May 2017. These include citizen engagement and empowerment, integration of care and meeting population needs, service design care pathways, infrastructure, e-health and quality of care.

As is clear in the implementation report for 2018 published by the Department last month, there has been considerable progress to date. I am particularly pleased that clinical leaders have been appointed in cancer nursing, psycho-oncology and for children, adolescents and young adults with cancer.

In the area of cancer research there is broad agreement, as described here earlier this morning, that permanent funding for core research staff is essential within a HSE framework of support and research governance which will enable the growth of clinical research and facilitate collaboration with both industry and the academic sector.

Developing the strategy, and the initial phase of its implementation, is the result of collaboration between the relevant elements of the healthcare system with the registered charities, greatly enhanced by increasing levels of public and patient involvement. We reiterate the importance of the third national cancer strategy as an appropriately ambitious plan for the further development of cancer prevention and patient care and look forward to the ongoing support of the committee for this work.

I thank our guests for their detailed presentations. I have printed out approximately 200 pages over the past day or two.

My first question relates to cancer policy for the State and is for the officials from the Department. What are the biggest opportunities over the next one to five years in reducing the prevalence of cancer?

Mr. Michael Conroy

The single biggest opportunity area is prevention. Ms Power quoted a figure of 40%, and there are various figures, but between 30% and 40% of cancers are preventable. Distinct policies for cancer have been developed since 1996. We were below the international curve in 1996 but have gradually come up to mid-table since then. We need, in the future, to build on the successes we have had in the past. We have a lot of emphasis on prevention in the first yer and a half of implementation of the strategy. We are going about that in an integrated way with Healthy Ireland. It is part of the overall prevention message of the Department and many of the messages about protecting people from cancer are the same as those about protecting people from other illnesses.

There is an ever-increasing number of people living with and beyond cancer because of the successes in treatment we have had over the past ten years. Many people have been diagnosed, had cancer and are now out of it, have survived and are living well beyond cancer. There are 170,000 people in that category. I could talk about developments in treatment but let us focus on the aftermath for a moment. In our discussions around the development of strategy, I particularly remember a patient who talked about looking forward to coming out of treatment and being told she was clear of cancer. When she got to that day, instead of a feeling of euphoria, she described a feeling of fear about losing a comfort blanket and wondering what to do. Structures are needed in that regard. That is something we are working closely with patients on. We are also working hand in hand across the voluntary sector and so on.

It is said to me reasonably regularly that Ireland is poor at public health investment. We do some things spectacularly well in healthcare but, on a comparative basis to the OECD or EU countries, our investment and activity in public health and prevention is pretty poor. Does Mr. Conroy agree?

Mr. Michael Conroy

I do not know the relevant figures and it depends on what country-----

Let us say at an OECD or EU level.

Mr. Michael Conroy

Ms Maguire or Dr. Coffey might want to come in on that question.

Dr. Jerome Coffey

I will come in on that. This country has a good record and it comes from legislation that is world class. We are ahead in the world when it comes to tobacco control, sunbed use and with the Public Health (Alcohol) Act. We have good legislation. In terms of public health community support, departmental policy and legislation, we are ahead of the game.

It is my understanding that our investment in preventative public health measures as a percentage of our overall healthcare budget is low. Prevention seems to represent the biggest opportunity. Is there an opportunity to increase the effectiveness of funding by channelling more into prevention?

Dr. Jerome Coffey

I would say that prevention is not a high-cost initiative and that it gets appropriate prioritisation in the cancer strategy. In the cancer control programme we have four public health specialists contributing to Healthy Ireland but also developing and establishing the Irish cancer prevention network. Again, it is a question of organisation, looking at the evidence and implementing it. It is not about finding huge amounts of additional funding to make a change.

It has been suggested that there is a big opportunity for us to get better at early detection. Do the witnesses have a plan in that regard and do they agree with that analysis? What are the opportunities in the context of earlier detection?

Dr. Jerome Coffey

There are a number of answers to that question, one of which is awareness. Credit is due to the Irish Cancer Society and other charities that have conducted excellent awareness campaigns. The campaign on lung cancer, for example, outlines the symptoms that suggest lung cancer, until proven otherwise, and recommends that patients go to their GP and have a chest X-ray. We are working towards longer, more sustained public awareness campaigns and are also working with the education system.

In the context of the discussion on early diagnosis that came up in the previous session, I have just looked up the numbers and the rate of first-time presentations by patients with cancer to an emergency department is approximately 13%. The metric in the strategy is to reduce that by half over the lifetime of the strategy.

I am going to ask about a local issue now. I am not asking about my own locality but about Sligo. In 2006, Sligo was deemed not to be one of the centres of excellence. This is causing a lot of problems for people, particularly in Donegal. They are having to travel very long distances to Galway. Many are very sick and some are old. Nobody who needs need major surgery has an issue with travelling to Galway. It is the weekly, or sometimes daily, trips for treatments like radiotherapy and chemotherapy that are causing the difficulty. A lot of people believe that not setting up a treatment centre, as distinct from a surgical centre, in Sligo in 2006 was a mistake. They believe it should be considered going forward. Are there any plans to analyse that or to set something like that up?

Mr. Michael Conroy

I will come in here if I may. Before answering that question, I wish to point to screening in the context of early diagnosis, which is a major part of the programme.

Under the previous cancer strategy, surgery was centralised in eight designated cancer centres based on a population of 500,000 per centre, roughly. That is considered to be one of the major successes of the previous strategy in terms of outcomes. It is a proven fact that where one has cancer surgery carried out by surgeons who have experience of doing a lot of surgery alongside other surgeons who are also doing a lot of surgery, it works to the benefit of patients. That is accepted internationally.

On Sligo and Donegal, I have had numerous interactions with people from Donegal about cancer services. Breast cancer is the major cancer in terms of numbers for surgery and treatment and cancer surgery is carried out in Letterkenny University Hospital.

I do not mean to be rude but we are pressed for time. My specific question is whether therapy is being considered in Sligo.

Mr. Michael Conroy

A change in the current structure is not being considered in Sligo but-----

Radiotherapy or chemotherapy services or some-----

Mr. Michael Conroy

I was coming to that point. I will ask Dr. Coffey will speak about Altnagelvin Hospital.

Dr. Jerome Coffey

Access to the North West Cancer Centre at Altnagelvin is a huge step forward for the people of the north west. It is important to say that while there are eight designated cancer centres, in a large number of hospitals there are chemotherapy day wards that are delivering care close to home. That principle is already there and will not be changed. We must maximise the non-cancer centres' ability to deliver diagnostics and follow-up so that patients do not have to travel for everything, from diagnosis through to follow-up.

Most or all of the witnesses sat through the previous session and will have heard strong allegations made about the prioritisation of clinical trials and research. My sense is that the issue concerns funding or, more correctly, funding cuts. It also concerns, very interestingly, culture. The allegation was made that while clinicians value research, the system - meaning HSE management, departmental officials and politicians - does not value it, has not funded it, has not aligned incentives so that it is a smart career move for people and has not created the processes where space can be carved out for clinical trials. Do the witnesses accept any of those criticisms? How would they respond?

Mr. Michael Conroy

I will make an opening comment in the context of the cancer strategy and then refer to my colleagues in the HSE on the matter. There are three recommendations on research in the strategy. The first is to establish a national cancer research group to move on research co-ordination, fostering a supportive environment, setting research priorities and so on. The second is to ensure that clinical cancer research and the staff who deliver it become fully integrated as a component of cancer care, which relates to the point made by Deputy Donnelly. The third recommendation is to examine mechanisms to ensure that newly appointed consultants have time allotted to research. The fact that this is in the strategy illustrates that we accept the basic point the Deputy is making, namely that there is more to be done in this area. The current strategy is very much building on the previous one and we accept that research is an area that has not been developed as much as it could have been. There is a commitment in the strategy to this area, particularly through the cancer research group which will be set up in the first six months of this year.

There have been a lot of steps forward in cancer research. Cancer is one of the areas where research is a lot more developed than in other areas of the health sector. There is an opportunity to use cancer as a lead in terms of making improvements. In that context, I would mention the cancer registry, to which tribute was paid earlier. It has the data and experience upon which we can build in order to increase capabilities-----

While I do not want to put words in his mouth, it sounds like Mr. Conroy broadly accepts the criticisms made earlier with regard to cancer research. Given that research is included in the cancer strategy and that there is a broad acceptance that it has not had the priority it deserves, when can clinicians, researchers and patients expect to see things being done differently on the ground?

Dr. Jerome Coffey

I accept entirely the Deputy's point and the points made earlier this morning. Research must be prioritised. It was not possible to prioritise it ten years ago because there were so many other higher priorities. Given where we are now, however, it is absolutely essential that we do it. The criteria for cancer centres must include a research unit. Patients must be given access to such units and there must be staff there to deliver the research. In terms of when the public can expect to see change in that regard, we have had a number of engagements over the last year and since the publication of the strategy on how to do this. We have had engagements with the Irish Cancer Society, the Health Research Board, HRB, and Science Foundation Ireland, SFI. We now have a research and knowledge programme within the HSE which is a significant step forward. Before the end of this year we will have a research group, terms of reference, members and a plan for the future. I would like to get that done before the Estimates process and service planning for next year begins.

On implementation, one of the things we have all become used to and which is replicated all over the world, is that plans are brought forward, strategies are devised, steering groups are set up but there can be an unmerciful time delay from all of that administrative activity through to things actually happening on the ground, in hospitals, for example. Do the witnesses have any sense of when this will be up and running? I do not know how many cancer research clinicians we have but I suspect it is a relatively small number.

When will life become materially easier for them in terms of pursuing research agendas around cancer trials and so forth? When will they feel a difference?

Dr. Jerome Coffey

We are not starting from year zero. Cancer trials in Ireland have been highly successful over two decades in producing a lot of research activity pro bono at weekends. That is the level. There is great commitment from existing medical and nursing staff. The question is when we can get the core infrastructure to add to their capacity to deliver research in the cancer centres more broadly.

My hope would be that the 2020 service plan will have a line stating, "Development funding for the cancer control programme, of which the Minister will direct that a certain amount is towards cancer research." That is my hope and ambition but there will obviously be negotiation before that happens.

Continuing with that theme, we would like to help Dr. Coffey with that hope. That is the purpose of the committee. I think we are all on the one page on this, which is good.

Based on what we were told this morning, there is serious concern. I do not doubt that what Dr. Coffey says is his wish and desire. However, we have been here previously on other matters. Often they do not happen or if they do, it takes much longer. We are behind and need to catch up. What percentage of patients have been on clinical trials over the past three years on average?

Dr. Jerome Coffey

The percentage when the cancer strategy was being drafted in about 2017 was 3% at that time. It varies up and down.

What is it now?

Dr. Jerome Coffey

I do not know what it is in 2018.

Will Dr. Coffey come back and inform the committee?

Dr. Jerome Coffey


I ask for the figures for 2016, 2017, 2018 and to date in 2019. Knowledge of the trend will inform the committee. With all the will in the world if the trend is not in the right direction, the witnesses' proposals will not be met with much enthusiasm. Deputy Donnelly took the words out of my mouth. This is not seen to be a policy priority for those in public service or political life because it cannot be seen out there. It is just not good enough and we need to change that rapidly because we are so far behind.

I was impressed by what the previous witnesses said about future policy. It is obvious that there are two sides to this. Obviously we need to increase funding. This is probably a question for Mr. Conroy. How will funding be increased? What percentages are being considered?

How will we ingrain the process, for want of a better term? Dr. Coffey pointed to a requirement for permanent funding for research staff etc. That is totally agreed, but it is way bigger than that. It needs to be part of the whole process. It needs to be ingrained throughout the HSE and needs to be part of the hospital network. How can we ensure that happens quickly?

Mr. Conroy is probably in a better position to answer the question on funding. Dr. Coffey is probably in a better position to answer the question on whether the process can be ingrained through this new strategy, for which I have no doubt he is an advocate.

Mr. Michael Conroy

Funding is always a challenge. I have made the point that this is in the strategy. With the previous strategy we have a record of implementation. We have a very open approach to this strategy in terms of what we have done so far in publicising it and so on. We have an open door to dealing with all the cancer interest groups and so on.

It is very unusual that they would all stay back for the second half, by the way.

Mr. Michael Conroy

I would be surprised and perhaps disappointed if they did not.

Mr. Michael Conroy

We have used a very collaborative approach in developing this strategy. I think the fact that research is up in lights with commitments with three recommendations out of 52 shows some commitment to it, along with other associated recommendations across the strategy relating to the cancer registry and so on. I cannot give the Deputy a straight answer. When we got approval for the cancer strategy from Government in 2017, the funding would have been tied in with the Estimates process each year and so on. We work very closely with the NCCP on the details of and have for the period of the whole strategy. On an annual basis we also work with the NCCP on jointly drawing up the Estimate proposals which ultimately come in to us. We are committed to achieving this.

Mr. Conroy has no idea of the future funding percentages.

Mr. Michael Conroy

I cannot give the Deputy a straight answer to that.

I am not asking for specifics. As regards prioritisation in the Department, will we see an increase?

Mr. Michael Conroy

Regarding research on the cancer side, I certainly hope so, but I cannot give a commitment on that. Dr. Terrés or Dr. Coffey may wish to comment on the development of research more broadly. I think the appointment of a cancer research lead and so on in the HSE shows that there is a change.

I accept that. It is not an issue. What about the process?

Dr. Jerome Coffey

On the total funding, in 2018 we had €85.8 million to put into systems, increasing to €94.7 million. So the trend is up. We have to take a chunk of that and put it into research. As for what is the process to get research-----

Let us say the amount spent on trials.

Dr. Jerome Coffey

In terms of process, if a new consultant post is funded and approved, it goes to the consultant appointments advisory committee but it comes to me to sign off the job description of what it is. For example, the current principle is that we will increase the amount of research time on a consultant contract. A hospital came to me and said they had one session and I said no, because the strategy says we need to increase to at least double that. Consequently, I push back and I will not approve a new post until there is a significant increase in the research sessions on that contract. That is a very pragmatic part of the process that we have already started.

I have three final questions. I know the Chairman is trying to manage time and it has been a long day. What is the average time for reimbursement for oncology drugs versus the EU average? I ask this because of evidence given here by Mr. Shaun Flanagan some months ago. There seems to be a process whereby we hold out to get a better deal. That is one thing, but obviously time is of the essence here.

My second question is inspired by comments made earlier by the chief executive of the Irish Cancer Society. Based on the hundreds of hours of discussions we have had about the knock-on effects of the overrun on the national children's hospital, can Dr. Coffey give a commitment that no capital programme on the cancer side will be affected?

My third question is on National Cancer Registry Ireland, something I have pursued for well over a year. I was alarmed to hear what had happened regarding the statistical analysis, throughput and pathways regarding cervical cancer. Through engagement with the Minister, Deputy Harris, I found out about this almost by accident. This is not a reflection on National Cancer Registry Ireland at all. Can we be confident that pathways for information flow, the necessity for patient permission, and the process by which those who are diagnosed with cancer but come into the system from different pathways, have all been looked at dealt with to ensure we will not need to go there again? As a result of the revelation about what went on there, the Royal College of Surgeons in Ireland is carrying out a review which was meant to be done long ago but will not even be completed this year and we still do not know.

To return to the statistics, my third question is whether all that has been dealt with. Can we guarantee that the HSE, across all these areas, has lined up the statistical analyses or pathways with NCRI and that there will be no surprises again?

Dr. Jerome Coffey

The first question was on the time for drug reimbursement in Ireland by comparison with the EU average. I am afraid I do not have any data on that. We will revert to the Deputy with it.

I specifically referred to oncology drugs.

Dr. Jerome Coffey

On capital expenditure, there are a number of projects under way. Altnagelvin opened a couple of years ago. In Cork, a €50 million project has been handed over by the builders and the equipment is in. There has been no delay.

It is not just about projects not happening about also about "re-profiling", which is a famous term used by the Government. It basically means pushing it down the road. None of this is going to happen with any projects on the cancer side.

Dr. Jerome Coffey

I have heard no suggestion that will happen.

That is not an answer, to be fair. For Dr. Coffey to say he has heard no suggestion is not to say it is not going to happen. Who would suggest it? Surely Dr. he would know.

Dr. Jerome Coffey

I will do my best to make sure it does not happen.

On radiation services in Galway, enabling work is under way. Construction is to start this year. A design team is examining the extension of the radiation centre in Beaumont Hospital. This is all happening and there are no delays or re-profiling in that regard.

The third question was on the cancer registry. I am on the board of NCRI. There was a considerable volume of work in the second half of last year, and continuing this year, to implement as quickly as possible nine recommendations from the report. A data-sharing agreement between the HSE and the registry is in place. There are a number of big issues that the Deputy mentioned, including having one source of data or one data repository. There are discussions on how best to do that rather than having multiple sources overlapping or contradicting each other. That is an absolute priority of the registry and HSE.

I thank Dr. Coffey for that. I have a final question on NCRI. The issues were not at that end but at Mr. Coffey's end, I am sorry to say. It was seriously alarming. Dare I say it, but only for Vicky Phelan, we would still not have known about this. Probably within NCRI, but particularly within the HSE, the lack of awareness was frightening. I hope that has all been dealt with to ensure one standard across the board. NCRI does good work and it is very good that we have it. It is absolutely necessary and everything is based on the statistics the officials behind me produce. It just has to be prioritised.

I thank the witnesses for attending and for the work in which they have been involved. I wish to take up on one or two points from the previous session. Clinical trials are not as readily available outside Dublin and Cork. What is the reason for that? What about Limerick, Waterford, Galway and Letterkenny? Surely trials should be spread across the country in an even-handed way.

Do the witnesses believe the national cancer strategy is working? This is important because the rudiments are in place to make it successful, ensure good outcomes and improve the life expectancy of cancer patients considerably. Everybody asks questions seeking confirmation. I spent many years as a member of the Committee of Public Accounts so I know how that works. I am not putting words in the witnesses' mouths but am seeking a simple, straightforward, honest answer to the question of whether the registry is working. If so, is it working to the greatest extent possible? Can it be improved?

My next question is important. Every organisation requires more funding. The health service, in particular, is in need of funding for a variety of reasons, including a lack of action on time, a lack of intervention on time, and a failure to provide adequate capital funding on time. As a result, there is a backlog. That is the story of the health services. I am not suggesting a bottomless pit in terms of funding but we have to improve. Generally, health services here cost more than in many other European countries. That needs to be dealt with that from a public consumption perspective.

Somebody said to me some time ago that we had a better system ten years ago, and we did. We had more money but we borrowed it. The country was broke and nobody realised it at the time. That is a fact. At this stage, we need to spend money carefully and wisely, and we need to make it available. That is our duty but we must keep in mind that we do not want to go back to where we were. The health system, no more than any other aspect of infrastructure, would not be capable of withstanding another crash. We have many challenges, not least of which is the need to make adequate provision throughout the health services.

Mr. Michael Conroy

The national cancer strategy is working. We have touched on some of the prevention measures. In the past, people accepted the dangers of smoking. They were not as conscious of some of the other dangers associated with cancer, and did not link certain lifestyle issues to cancer. That is changing. We are bringing out a skin cancer prevention plan on 1 May.

With regard to screening, our numbers are up. The breast screening rate last year was 76%, against a target of 70%. On early diagnosis, people are more aware of cancer. Increasingly, they are being encouraged to follow up on lumps or other symptoms. Much work is being done on the provision of diagnostic equipment in our hospitals to handle the numbers coming through. We can do more.

On cancer surgery, improvements in outcomes are very marked owing to the centralisation of services. On radiotherapy, Dr. Coffey mentioned the new centre in Cork that will have five radiotherapy machines, up from four. It will open next year. The building will be finished this year and it will be commissioned in the first quarter of next year. Medical oncology facilities are being improved all the time and expanded, bearing in mind that the number of people coming through is increasing. With regard to the involvement of patients, there is much interaction with them, as there was in the drawing up of the strategy. Patients are our biggest critics in ensuring that the system is working. Their views are spurring us on to ensure it continues to work.

I mentioned the robust review mechanisms to be in place with the NCCP, with which we work closely. It is basically a hand-in-glove approach across the Department and NCCP. The NCCP is pushing implementation all the time across the HSE. We see figures coming through all the time. We try to use any money we get in a judicious way to address any problems.

With regard to funding generally, we will never have enough money. All areas of the health sector and all areas of government always like to have more but what we do have we use very well. We are using funds in a targeted and outcome-oriented way that is followed up and recorded, and from which we see the outcomes. We change allocations in the details to ensure that continues to happen. If something is not working as well, we address that.

There is a third strategy. We are building on a good strategy in the second one. We are into a depth of strategy in cancer services, and that will and can be followed in other areas of the health sector.

Dr. Jerome Coffey

I thank the Deputy for raising the macroeconomic picture. In 2006, our national debt was €40 billion and, this morning, it was €217.9 billion. That is a scary number in the background that will have to be considered as we invest in healthcare.

I am personally biased in that I believe we should find the money to invest by borrowing or whatever because we want the better outcomes. Behind the investment, however, the Government has obligations to manage the debt and reduce it over time. That is the big issue behind many of the constraints under which we operate.

While I am not an economist, I have spent much of my political life apologising to economists. The important aspect of debt is that it must be kept at a certain level relative to GDP, GNP or whatever measurement one is using, but that ratio has changed dramatically as a result of good management. If steps that were taken at great cost to the health services and across the board had not been taken, we would still be in the same position but we could quickly find ourselves in that situation again. We should not forgot that ten or 11 years ago, everybody told anybody who wanted to listen that there was no need to worry, that everything would be okay and that we could see the matter out. It did not happen that way, however, and we must be very cautious not to allow it to happen again.

A question arose earlier about the access to cancer treatment. It has been suggested that people have been denied access to cancer treatment due to waiting lists, a lack of beds or a lack of other facilities. Will Dr. Coffey indicate the extent of the problem? It is an alarming issue which has serious consequences for patients' health. The Chairman will be glad to know that I will have one further question.

I might ask a question myself.

We encourage that sort of thing.

Dr. Jerome Coffey

To provide some brief performance data, I will outline the preliminary numbers for January of this year. For access to urgent breast clinics, there is a ten-day target, which was reached in 86.3% of cases. Within 15 days, however, 97% of women referred are seen, which is a significant improvement on previous years and quarters. For lung cancer clinics, 85%, 92% and 97% of referrals reach the clinic within ten, 15 and 20 working days, respectively, which is good and, while not on target, is close to it. For rapid access to prostate clinics, approximately 85% of men are seen within 20 days while 95% are seen within 30 days, which is also a significant improvement on previous years.

That is important. As I indicated, I have another question but I will wait until the end of the discussion.

To return to some issues that were raised earlier, on cancer prevention in respect of smoking and alcohol intake, the Public Health (Alcohol) Act 2018 is now on the Statute Book and affects minimum unit pricing, advertising and the display of alcohol in shops and supermarkets. While it will take some time to be fed through into the system, it is positive. There are smoking-related targets for 2025 but we are not meeting them. I acknowledge that the incidence of smoking is reducing but, to the best of my knowledge, we are far behind our target for 2025.

On screening and early detection, in the cervical cancer programme, unfortunately, only 80% of women will take up the option of a free cervical smear test. Dr. Coffey referred to the rise in breast screening tests from 70% to 75%. How can we increase those figures, given that it is a substantial gap in the cancer programme if we cannot recruit 100% participation? The Government had proposed to introduce HPV testing of cervical smears in October of last year but that has yet to happen and, according to what I have heard from the Minister for Health, it may not happen this year. Dr. Coffey might comment on that. On a related issue, there is the unfortunate backlog of cervical screening, stretching back to more than six months in some cases. How can that be addressed and how is it being considered by the HSE?

On the treatment of cancer, there is a patchiness of access to oncology treatment and radiotherapy in parts of the country. In the mid-west, I am aware of a problem with access to radiotherapy, in particular, as well as to oncology. I invite Dr. Coffey to comment on those points.

Mr. Michael Conroy

I might first take the question on smoking. The interim key performance indicator target in the cancer strategy has been met in respect of the percentage of adults, that is, those over the age of 15, who smoke. At the end of 2018, 17% of the group smoked daily, which was in line with the target and which represented a fall in the number of smokers from 19% in 2016. The aim is to reach 5%, which is considered tobacco free, by 2025, but the target that was set out in the strategy was met last year.

The target of 5%, however, as outlined for 2025, will not be met.

Mr. Michael Conroy

That is a matter of opinion but it is moving in the right direction and many strides have been made. In European terms, apart from the UK, we are the top EU country in this regard. By international standards, our performance is considered very good.

On reducing tobacco smoking, does the Department have an opinion on the substitution of vaping to reduce the incidence of smoking-related cancer?

Mr. Michael Conroy

I will have to revert to the committee in that regard. I have asked the question myself. The general approach is that it is considered to be better than smoking tobacco but I am not sure whether we have a policy position at this point.

Dr. Jerome Coffey

To reply to the questions that the Chairman asked about screening uptake, while the numbers for breast screening and cervical screening are close to the target, it has been identified as a real problem. Trying to persuade people who do not want to undergo a test in a freely accessible service that it might save their lives is a challenge. It is important to distinguish between colorectal screening. The target is low and it is hard to reach but that is in line with the international experience. For some reason, people are happier to go for mammograms, Papanicolaou smears or HPV testing than have a faecal immunochemical test, faecal occult blood test or scope. Despite best efforts and impressive media campaigns in this country, it is a struggle to reach the targets, but I am not sure what are the international reasons for that.

I am not directly involved in the introduction of HPV testing and, therefore, I do not know the date for the introduction of the service or how the backlog is being addressed. I will, however, have the screening service convey that information to the committee.

On radiotherapy and the access to cancer treatment services, I mentioned the investment in radiotherapy in the north west, Cork and Galway, but the service will start perhaps a couple of years before the new centre is built. It is intended to meet future needs and will have state-of-the-art technology. In Dublin, there has been significant progress over the past decade. In the mid-west and the south east, we buy from the private sector and those services, which have been in place for a period, are excellent. The machines in Limerick and Waterford are at the end of a ten-year life cycle and, therefore, the question is how best to replace them while also potentially increasing capacity in order that people will not have to wait. Work is ongoing in that regard and we will probably have visible progress on the decisions and investment.

Mr. Michael Conroy

The National Cancer Screening Service has targeted its efforts at the groups that are hardest to reach to involve them in screening and I acknowledge the help of the Irish Cancer Society, ICS, in that regard. There is much interaction among the State, the ICS and others. Sometimes, the people one might expect to need screening the most are the people who are the last to come forward.

Several years ago, I mounted a campaign for increased laboratory facilities. We need enhanced laboratory facilities that are adequate to meet the present and growing population, which we do not currently have. It should be an urgent objective, particularly in the light of the cervical tests and the delays associated with them. We know that the practices were wrong because there was a practice of not telling the patients what the story was, which is appalling in any circumstances. It caused undue stress and anxiety for the patients, but the patient should surely be the most important person in the equation.

The smear test system has been in operation for ten or 12 years. When it was introduced, some of us had doubts. We were sold on it because it had the ability to save the lives of a considerable number of women, which it has done. It had an accuracy rating of approximately 80% then and it is still no more than that. Given the accuracy rating and the apparent lack of information prevalent in the system, it was a bad system in terms of the capacity of patients to have confidence in it. The theory was that information was withheld from patients because it would have undermined public confidence in the system. Which comes first, however? Is it the need to assure the patient of absolute certainty that the laboratory to which her test is referred is doing its job, is accurate and that results are followed up? I ask Dr. Coffey to comment on that and on the laboratory facilities, the methodology used and the need for the alternative system which is coming into vogue soon.

Dr. Jerome Coffey

I am happy to take that. The way to look at this is that Dr. Scally's report of September 2018 set out clear recommendations which were, in effect, instructions and those are being worked on at the moment. That is all going to change in terms of HPV testing versus cytology and all the rest of it. The broader point on laboratory capacity comes back to the rate of change in science. I worked in a genetics laboratory for two years but if I went back there now, I would be fairly useless. Even since the middle of the last decade, things have changed. As such, we need to plan for a high-end diagnostics service in Ireland for cancer patients whether it is screening, germ line genetics or tumour genetic sequencing. The UK made that major investment decision a couple of years ago and is mainstreaming genomic medicine. We know what we want to do and we need to plan and invest in it quickly. That will encompass all areas of cancer diagnostics. It is an exciting time. If one looks at researchers, there is a great deal of activity in the universities here. We need to have equivalent levels of activity in the clinical services we provide to patients in the hospitals.

I thank our guests and apologise for the delay in commencing the session. This is a topic of immense interest and it needs continual development. The committee will certainly be returning to it in the not-too-distant future. I thank Dr. Ana M. Terrés, head of research and development at the HSE, Dr. Jerome Coffey of the national cancer control programme at the HSE, Mr. Michael Conroy, principal officer in the cancer policy unit at the Department of Health, Ms Judith Corcoran, assistant principal officer in the cancer policy unit at the Department of Health, Ms Teresa Maguire, head of research services at the Department of Health, and Mr. Kevin Byrne, executive officer in the Department of Health for attending.

The joint committee adjourned at 1.25 p.m. until 9 a.m. on Wednesday, 3 April 2019.