Engagement with Core Working Group for the All-Island Cancer Research Institute

Apologies have been received from Deputy Carroll MacNeill, Senators Hoey and Black, Mr. John Finucane MP and Mr. Colum Eastwood MP.

Oireachtas Members attending the meeting remotely should do so from within the Leinster House campus. Remote participation from outside the campus is not possible by ruling of the House.

I must read the following document out now. Members and all in attendance are asked to exercise personal responsibility in protecting themselves. I know with the august guests that we have here with us today that they would know more about this than anybody. All present are strongly advised to practice good hand hygiene and every second seat has been removed to facilitate social distancing. Those in attendance are asked not to move their chair and they should also maintain an appropriate level of social distance during and after the meeting. Masks, preferably of medical grade, should be worn at all times except when speaking. I know that all in attendance will co-operate with these instructions.

As to the rota for questions, I am proposing to call members in the following rotation order and time limits, repeating as time allows. We change the rotation at every meeting in the interests of fairness to all members. We will try 15 minute slots and we will try to keep proceedings moving in that way. Fianna Fáil will be followed by Fine Gael, and Sinn Féin, followed then by the SDLP and the Alliance Party, including all Independents, Aontú representative Deputy Tóibín, Deputy McNamara, and Senators Mullen and Black and then back around to Sinn Féin, the Labour Party and the Green Party. Are these rota and times for questioning arrangements agreed by members? They are agreed.

Before we start I wish to say that we are in public session and at the end of our meeting we will have a short private discussion about our trip to Belfast, what we are doing there, and I will probably bring members up to date on that then.

Our engagement today is with Professor William Gallagher, Professor Mark Lawler, Professor Maeve Lowery, Mr. Ciaran Briscoe and Ms Eibhlín Mulroe. This is the core working group for the proposed all-island cancer research institute, which is of great importance for everybody's health, North and South. It is great to have our guest witnesses here and it is very important that we have an opportunity to hear what they have to say and, hopefully, as Members of the Oireachtas, to act as we can to assist. We are not a health committee but we are the Joint Committee on the Implementation of the Good Friday Agreement. We will do all that we can to further this group's aims and will universally support it in every respect. I welcome all of our guests to today's meeting.

I will now read the standard privilege piece. The evidence of witnesses physically present or who give evidence from within the parliamentary precincts is protected pursuant to both the Constitution and statute by absolute privilege. However, witnesses and participants who are to give evidence from a location outside the parliamentary precincts are asked to note that they may not benefit from the same level of immunity from legal proceedings as a witness giving evidence from within the parliamentary precincts does and may consider it appropriate to take legal advice on this matter. Witnesses are also asked to note that only evidence connected with the subject matter of the proceedings should be given and should respect directions given by the Chairperson of the committee to the parliamentary practice to the effect that, where possible, they should neither criticise nor make charges against any person, persons or entity by name or in such a way as to make him, her or it identifiable or otherwise engage in speech which might be regarded as damaging to the person's or entity's good name. We read this document before every meeting and it is a standard procedure. I now call on Professor William Gallagher to make his opening statement, please?

Professor William Gallagher

Dear Cathaoirleach, Deputies and Senators, I thank you for the opportunity to meet with the committee today to discuss our vision for an all-island cancer research institute, or AICRI, for short. First proposed in 2020, the AICRI core working group and wider steering committee has made great strides in bringing this critical initiative forward. Indeed, a network of support for this intended cross-Border nexus has now grown significantly over the past 12 months.

We would like to first show the committee the following short video summary highlighting the overall concept of AICRI. We will then describe in more detail the background to our initiative, current activities and plans.

The joint committee viewed an audiovisual presentation.

Professor William Gallagher

The cancer burden across the island of Ireland is enormous. Practically every family is affected in some way by the imprint of this disease. A core foundation for our current mission to establish a fully integrated approach to cancer research, was the All-Ireland Cancer Consortium, AICC, which arose as a tangible output of the Good Friday Agreement. This tripartite cancer research and training agreement between the Departments of Health of Ireland, Northern Ireland and the US National Cancer Institute - one of the premier cancer institutes in the world - was first signed at Government Buildings Stormont in October 1999.

This groundbreaking agreement was recently re-invigorated on 16 March this year in the form of a revised memorandum of understanding which was signed by the Minister, Deputy Stephen Donnelly, Department of Health; the Minister, Robin Swann MLA, Department of Health, Northern Ireland; and Dr. Norman Sharpless, director of the National Cancer Institute. This historic occasion for cancer patients, cancer research and cancer care on the island of Ireland saw statements of support from: An Taoiseach, Deputy Micheál Martin; former First Minister, Arlene Foster MLA; Deputy First Minister, Michelle O'Neill MLA; and Mr. Norris Cochrane, former Acting Secretary of the US Department of Health and Human Services.

In his St. Patrick’s Day meeting with the Taoiseach, US President Biden expressed his renewed commitment to the Good Friday Agreement and referred to this consortium and how all parties could learn from one another and improve outcomes for cancer patients. The impact of this cross-Border and transatlantic collaboration has been very substantial. An evaluation of the consortium’s activities over the past 21 years found that this partnership significantly increased both the quality and quantity of research across the island of Ireland, contributed to saving thousands of lives and enhanced the quality of life of cancer survivors.

Among many of these achievements have been the establishment of a cancer clinical trials infrastructure for the island, a cancer prevention fellowship programme, and an All-Ireland Institute of Hospice and Palliative Care.

Building on this success, our aim now is to establish an all-island cancer research institute, AICRI. This will be a virtual institute, focusing on bringing together cancer researchers across the island, from the laboratory bench to the hospital setting in an integrated, team-based approach. We are currently putting together an ambitious, comprehensive and cross-cutting cancer research programme involving multiple stakeholders. These stakeholders include academic, clinical and industry partners, as well as patients, funders and government agencies.

Ten academic institutions have agreed to partner to fulfil the AICRI vision. Representatives from these institutions, along with patient advocates from both jurisdictions, are members of the AICRI steering committee, which was established in February 2021. They are joined by the director of the HSE’s National Cancer Control Programme and the CEO of Cancer Trials Ireland.

AICRI will focus on four key themes, covering cancer prevention,diagnostics and treatment, and survivorship-quality of life.

A wide range of cutting-edge projects relating to these thematic areas has already been garnered from the cancer research community across the island. Our role within AICRI is to work towards integrating these plans into a common research framework which will best deliver for cancer patients, while also helping to drive economic and social benefit.

Cancer patients treated in research-active hospitals, particularly those with strong academic links, have better outcomes than those who are not. Embedding of research within the national cancer control programme for Ireland and the Northern Ireland cancer strategy is critical to ensuring optimal care for our citizens. Focusing on cancer is particularly relevant in the context of Covid-19 because our work has shown the adverse impact that the pandemic can have on cancer services and cancer patients on this island unless we act rapidly and decisively.

AICRI directly addresses a critical need identified within Ireland's national cancer strategy 2017-2026, which acknowledges a current absence of an overarching framework for cancer research. It also acknowledges that it is vital to ensure that research is a strong component of cancer services. AICRI's activities are also well aligned to the draft cancer strategy for Northern Ireland 2021-2031, which has been identified as an immediate priority of the Northern Ireland Executive.

In addition to clear benefits to the healthcare system, both in the short and long term, AICRI will also greatly assist further development of a cross-border ecosystem for innovation. It will provide new discoveries and talent for the burgeoning indigenous biotechnology industry in both Ireland and Northern Ireland while also acting as a gravitational hub to retain and attract large-scale pharma and allied companies.

We greatly welcome the recent approval from the North-South Ministerial Council for the new PEACE PLUS programme for the period 2021 to 2027, which will provide critical funding to support cross-Border projects in key areas directly aligned to AICRI, such as research and development and healthcare intervention trials. Moreover, we are excited by the opportunities afforded by the new HEA North-South research programme call 2021. We are preparing a submission under this call to create an all-island interdisciplinary training programme for emerging cancer researchers in the areas of cancer prevention, diagnostics and treatment. During a keynote address in September 2017 at an International Cooperation in the Fight Against Cancer event in Dublin, then Vice-President Biden said "every day, every minute matters to patients and we must bring that sense of urgency to our cancer research and care systems."

Would any of Professor Gallagher's colleagues like to make any comments? I will try to keep it informal so that we get the best use of the witnesses' expertise and knowledge. All our members would be very happy to ask questions and, hopefully, engage with them constructively.

Professor Mark Lawler

The big opportunity here is the all-island opportunity and the opportunity to build on the Good Friday Agreement and what we have done in the past 20 or 21 years. One aspect of this that is really important is the fact that we are now judged internationally as being at that top table. Bill Dahut, who is the clinical director of the National Cancer Institute in Washington, which is one of the best cancer institutes in the world, based on what Professor Gallagher's presentation about the activities that came out of the Good Friday Agreement, has now said that Ireland and Northern Ireland are part of that and are embedded within the global cancer research map. We want to build on that and go to the next level. This is why we were working together. Cancer does not know any borders so we should not know borders either. The fact that ten different institutions are involved means that we are not competing against each other; we are competing against cancer, which is our common enemy.

Ms Eibhlin Mulroe

I thank the committee for the invitation to appear before it today. I am from County Monaghan in the Border region, so this means a lot to me. Having gone to college in the North and lived in Dublin, I know the importance of working together on this island. We have a long history of working together on this island when it comes to cancer. For 20 years, clinicians on this island, and Professor Lowery could talk to this as well, have worked on cancer trials in particular. Very often, people do not really know what means. I represent Cancer Trials Ireland, which is opening clinical trials in hospitals across the Border because, as Professor Lawler said, cancer has no borders. We are giving patients opportunities to access treatments, innovations, devices and radiotherapy within a hospital environment. One might say "So what? What does that mean?" It changes the conversation between the oncologist and the patient from "There is nothing more I can do. Go and sort out your affairs" to "We have an opportunity here for a clinical trial". That is the reality of clinical trials. Under the cancer strategy, we have a target of 6% in the Republic of Ireland. To do that, we need to do more and we need more investment. That is why we are here today. Northern Ireland is in exactly the same position. We have a great tradition of working from a patient perspective where patient advocates have worked together North and South on how best patients can be involved in these decisions around their treatment and as scientists. I came in today wearing the US-Ireland badge. Professor Patrick Johnson from Queen's University Belfast had a huge part to play in the memorandum of understanding that was signed. He made the Good Friday Agreement about cancer. When it was signed, the National Cancer Institute did something amazing. The US trained our investigators and clinicians to do more, so even though we do not have enough medical oncologists in Ireland - we have 40 where we should have about 80 - a lot of them have been trained in the US and a lot of them bring that dimension to our hospitals North and South so I think there is significant scope.

Professor Maeve Lowery

My colleagues outlined many of the big issues we want to discuss. I am a practising medical oncologist. I treat patients at St. James's Hospital. From the perspectives of the patient and the front-line healthcare staff, it has been a difficult 18 months for cancer patients and those who provide care to patients living with cancer. Our patients face a greater threat than Covid-19 every day. What we have seen over the past year was what research has done in terms of transforming the world when it came to dealing with Covid - vaccines that mean we can sit here today. We cannot yet provide that level of hope for our patients and patients facing a diagnosis of advanced cancer or recalcitrant cancer. We cannot yet expedite the new treatments in the way we have done for Covid-19. We are hoping to provide that drive and hope towards really prioritising cancer. Research provides that innovation and drive for us to do better for our patients. Cancer is a great equaliser. It knows no borders, as Professor Lawler noted. Trials constitute the best way of getting new treatments to patients. We do not want any borders or barriers preventing us from providing that to our patients.

Mr. Ciaran Briscoe

I thank the Chairman and the committee for inviting us to appear before them today to present our vision and proposal for an all-island cancer research institute. We have made great strides over the past year in engaging with stakeholders from research institutions, cancer specialists and patient groups. It has become really clear that there is a great consensus there about bringing the foundation from the past 21 years to the next level. There is a lot of goodwill out there. We can continue to strive to get closer to realising this vision. In the next six months, nine months or a year, we could bring it closer to being realised.

We are the only Oireachtas committee with members from outside the southern parliament, for want of a better want, so we have MPs from the North as well. Not quite every party but most parties are represented here today so it is a significant opportunity for us to work together and run with the witnesses' agenda within our spheres to make sure we all have the same aim and it goes to the top of our agenda. We agreed earlier that I will call in this rotation. Each party can nominate its own speakers, as always.

It will be Fianna Fáil first, followed by Fine Gael, Sinn Féin, SDLP, Alliance, Aontú and the Independents, and then Sinn Féin, Labour and the Green Party. That accommodates everybody, North and South. I ask the Fianna Fáil speakers to identify themselves as some members are attending remotely. I see Deputy Brendan Smith and Senators Blaney and McGreehan. I will call the Louth woman first, Senator McGreehan.

I congratulate and welcome the members of the core working group of AICRI. It is a great pleasure to have the witnesses in front of us. I congratulate them on the incredible work they have been doing over the past few decades. I have been to webinars and many information sessions in the past while organised by Professor Mark Lawler. The work that has been done in recent years is incredible. I have been reading up on the success of what has happened in the past two decades. Will the witnesses tell the committee what has been going on, the successes there have been and the inroads made in regard to cancer research since the Good Friday Agreement? As one of the speakers said, the Good Friday agreement had tangible outputs in regard to cancer research and the witnesses might comment on that. I congratulate them on the signing of the revised memorandum of understanding last March, which was hugely significant. To have President Biden, the Taoiseach and the two health Ministers on this island reaffirming their commitment to all-Ireland cancer research was a very important message. I also ask for the witnesses’ point of view on how cancer research can help the all-Ireland economy and how this committee can help them to further their work.

Before we go to our guests, I want to explain there is 15 minutes in each slot. I invite the witnesses to respond and the Fianna Fáil members might then wish to come in.

Professor William Gallagher

In response to the questions from Senator McGreehan, the best demonstration example from the last 20 years is Cancer Trials Ireland and Ms Mulroe might cover that. I will give some examples from the period prior to the clinical trials and we will then cover the economy question.

Ms Eibhlin Mulroe

Cancer Trials Ireland was set up over 20 years ago. We have done a study with Professor Lawler, which was published last year, on the number of patients, and we reckon that 30,000 have accessed clinical trials on the island. Cancer Trials Ireland would not exist if this commitment had not been made 20 years ago. Primarily, it started with some oncologists who had been trained in the US and through the National Cancer Institute, NCI, coming together to run trials. It then progressed to getting support from key stakeholders, like the Government through the Health Research Board, and key fundraising organisations, like the Irish Cancer Society, and it has evolved since then. We are a not-for-profit organisation so we are not an institute, and it works.

The irony in sitting here today is that the very first radiotherapy trials started in this building, in the basement of Leinster House, in 1914. The scientists involved included Dr. Stevenson and a scientist from Offaly, Professor John Joly. The way they did the trials ended up being utilised by Marie Curie, so we have form in Ireland in terms of our ability to work together and to drive new research questions.

Some of our oncologists have been published and recognised internationally at the American Society of Clinical Oncology, ASCO, conference, which is the global oncology conference that happens every year, where new treatments are announced and new findings are developed, and treatment regimes change in the clinic as a result of that. That is pretty incredible. One of our colleagues, Professor John Reynolds, led a trial in Europe which was sponsored by Cancer Trials Ireland. We opened sites across Europe in that trial and it was published at the ASCO conference this year. We have a great history of success in cancer trials in Ireland and there is much more to come.

We need more investment and more infrastructure in the space but, despite that, we have managed to do it. Our numbers have been affected by Covid but our need is also going to be affected by Covid because there will be a greater need for cancer trials and cancer research in this space. I will pass over to my colleagues to continue from there.

Professor William Gallagher

I want to explain the process. Cancer trials are a patient-focused component but it is key also that we again resource sufficiently the discovery element, an example being the use of RNA vaccines in the treatment of Covid. That company was actually focused on using the technology for cancer vaccines. What is odd about it is that it has really accelerated because of the utility in the context of the treatment of Covid but a really big interest has now gone back towards trying to look at the efficacy of these types of approaches in treating cancer. However, the foundation is discovery. We have to have something to bring forward into the clinic. It is critical that we have that continuum within cancer research across the island - the ability to find new things, take those from the laboratory bench and bring them towards the clinic. That process is called translational research, where we try to translate our discoveries.

We have some very good examples of programmes. When we are talking about AICRI, it is a virtual project, not a bricks and mortar project; it is about people coming together in a team-based approach. We have good examples of that happening already and showing efficacy. For example, I had the pleasure for six years of leading a programme called BREAST-PREDICT, which was funded wholly by the Irish Cancer Society to the tune of €7.5 million over the six years. This programme had a big impact in terms of new discoveries in the breast cancer space. It funded a team of just over 30 people between Cork, Dublin and Galway, and also had connections in Northern Ireland and with Cancer Trials Ireland. I will give a couple of examples of specific outcomes. Professor Bryan Hennessy, who is based in the Royal College of Surgeons in Ireland and in Beaumont Hospital, had a specific interest in trying to understand why certain breast cancer patients may have an initial response to treatment but then develop a resistance over time. He had uncovered a new idea about how that occurred and then had to come up with a new drug combination strategy from the laboratory bench, and he was able to transition this in Ireland in a first-of-its-kind study worldwide. That is an example of true translational research or foundational research, where we come up with discoveries and bring them forward into the clinic. Having that continuum is critical.

There is another concrete example which leads into the economic question. There is a well-known assay or test in early-stage breast cancer which is called Oncotype DX. With early-stage breast cancer, while it is great that mammographic screening is catching the breast cancer much earlier, the challenge then is that we potentially might over-treat patients with chemotherapy and it is a clinical dilemma with which patients and clinicians are faced. If we have information to predict whether the disease is going to progress, we can have a decision as to whether to get chemotherapy. The Oncotype DX test was approved for public patients in Ireland in 2011 and this was the first country in Europe where patients within the public healthcare system got access to that technology. Why was that the case? It was because Irish clinicians were really at the forefront of bringing forward that technology and validating it.

The world's biggest clinical trial was called the TAILORx trial. The hospitals within the Irish context that participated in the trial, out of 900 hospitals worldwide, were some of the world's biggest accrual centres. For example, St. Vincent's University Hospital was second out of 900 across the world. Even though we are a small country between the two jurisdictions, we punch above our weight.

What is critical is not just advances in terms of clinical decisions but it is has been demonstrated that it actually saves money. For example, because we are sparing patients from chemotherapy and the debilitating effects of chemotherapy when they may not stand to benefit, that actually saves the Exchequer money. The first cost-effectiveness analysis studies were performed on patients within the Irish system. Professor Lawler might want to tackle the economics question.

Professor Mark Lawler

I thank the Senator for her questions. It is good to see her again. I want to emphasise the critical importance of research. In case anybody has any doubts, research is not an add-on any more. Research is an integral part of how we deliver the best care for our patients.

That is why the past 20 years have been so important. It has embedded that research culture on the island of Ireland. The study we published last year in the European Journal of Cancer showed that we doubled the amount of research we were doing together. We also significantly increased the amount of research we were doing with experts in the US. The quality of the research we did was also brought up to a great degree. That is compared to those that are much bigger than us around the world. As Professor Gallagher said, we punch above our weight.

I will give one good example of the economic-commercial aspect of it - Mr. Briscoe will give another - that comes from a company called Almac Diagnostic Services. It started as a spin-out company from Queen's University Belfast based on work and research done in the laboratory, initially on bowel cancer, that identified a particular test that could be used to identify which bowel cancer patients would best respond to particular treatments. That then spun out of the university, partly with Almac, a company within Northern Ireland involved in drug delivery and development, and became Almac Diagnostic Services. It is now the second biggest molecular diagnostics company in Europe. That is what is we can do based on the science and talent on this island.

Would it not be great if we could bring together the best minds and talents on this island to tackle the biggest challenge we face and will face in the future? Cancer is the biggest killer in this country, and on this island, and the Covid pandemic means it will be a big problem as we go forward. We need to act now in order to address this issue. That is why it is the combination of four groups working together in unity, namely, patients, clinicians, researchers and industry, that will drive better care for our patients and economic and societal benefit for our society.

For the benefit of members, there are approximately four minutes left in this slot but that is no problem. We will have more than one slot per party, hopefully, because this is a three-hour meeting.

Mr. Ciaran Briscoe

I will make a brief comment. Professor Gallagher will then give another example from the sector. This will be an investment in a space where Ireland has various strengths, such as its educated workforce. Our significant international pharmaceutical presence means the potential is there for Ireland to achieve global leadership in the oncology pharmaceutical space and with that, to create jobs both north and south of the Border, which will be of high quality and sustainable into the future. I emphasise again the economic benefits that could be involved in AICRI creating the kind of ecosystem within which SMEs and existing foreign direct investment, FDI, can continue to progress.

Professor William Gallagher

I support what Professor Lawler said in that we have a very exciting, burgeoning SME sector, both north and south of the Border, in the life sciences arena. One of the challenges is the scaling of those entities and bringing them to that next level. Commonly, they are acquired by some third party in the US and do not really develop within an Irish context so those jobs are lost in Ireland, in a sense, or there is no potential for them to grow. We need to change that. We need to create a proper ecosystem where people and talent are retained within Ireland such that these can grow and flourish. That is critical.

We have some excellent examples of people who are at the forefront. For example, a company called Carrick Therapeutics spans Dublin and Oxford. A couple of years ago, it got the highest amount of series A funding for any kind of new company. The first seed investment in the company was close to $100 million. That company, which has bases in Ireland and Oxford, has now just completed clinical trials that are the first in-person studies for its agent. The challenge for that type of company is how it goes to that next level, such as the new Almac. We want to create more Almac entities within an Irish context. We have to have that system and the people on the ground.

I am fortunate to be deputy director of a programme called Precision Oncology Ireland, which is one way we are addressing that issue at the moment. It is half-funded by Science Foundation Ireland and half by the industry sector that, importantly, includes six cancer charities in Ireland. It is unprecedented that six cancer charities came together. This is a strategic research partnership in the order of €12 million for a five-year research programme. I will give one concrete example of a North-South project that came out of that, which is a collaboration between Professor Tracy Robson in the Royal College of Surgeons in Ireland, who is an expert in cancer biology, and a spin-out from Queen's called pHion Therapeutics, which developed really sophisticated and cool ways of delivering drugs. This project combines the expertise of the academic in cancer biology with this novel technology. That can only be done with this kind of mechanism.

Ms Mulroe will comment on one last example of cancer trials and cost savings analysis.

Ms Eibhlin Mulroe

I should have raised this when I spoke earlier. We produced a DKM report in 2016 that we shared with this committee. It showed that within the clinic, when you organise a clinical trial your hospital does not have to pay for the treatments involved in it. That is very often taken on by the sponsor of the clinical trial, especially when it is a pharmaceutical sponsor. In 2016, there were cost savings of €16 million within the HSE's drugs budget. That was just for drugs that were available within the system at the time. It did not include all the advanced innovative therapies that were also being provided through our trials because that is not perceived as a saving. Some €16.5 million in GDP cost savings and 250 jobs were within the ecosystem at the time. I believe that has grown and we need to do a further analysis. We talked to people about that only yesterday.

One of the things InterTradeIreland did in 2014 was to commission its own study. That is how we met. It was in the context of a commission to study and identify clinical trial clusters as an area of interest for cross-Border collaboration. We met and discussed the idea of targeting cancer and we were able to show the data we had from the DKM report. InterTradeIreland has been very important to us in building bridges, talking to one another and getting that US-Ireland collaboration going again in addition to the memorandum of understanding, MOU. As you are all sitting in on this call on both sides of the Border listening to us talk about specific trials, such as the TAILORx trial and Professor Reynolds's Neo-AEGIS oesophageal trial I talked about earlier, it should be borne in mind that all those trials opened on both sides of the Border. In fact, we sponsored some of them to open in the UK. We had patients in Belfast City Hospital, Dublin and Cork. As Professor Gallagher pointed out about the TAILORx trial, we approved, which means recruited, large numbers of patients to that trial. Belfast was one of the top recruiters for the Neo-AEGIS study so it just shows there is major capability on both sides of the Border. I thought I should mention that.

We will move to the Fine Gael slot. It is just Senator Currie and me.

It is more time for us. It is fantastic to have all the witnesses here, not just to reflect on the success of the consortium since 1999 but for us to assist them in their realistic ambitions for the future. I thank them for that. The more they talk, the more we learn. My questions are probably more about prompting them to share more rather than being prescriptive.

This engagement is a major reminder that the biggest killer we face is cancer and non-cardiovascular disease. Over the past 18 months, Covid has shown us what we can do and what we can achieve. I am fully behind a fully integrated approach to cancer research in addition to, as the witnesses have outlined and written about, the research culture, a common research framework attracting key industries to Ireland on an all-island basis and what they describe as the birth of a new biotech industry, which are all very interesting and are part of this ecosystem of innovation we should be very much behind.

The revised memorandum of understanding probably did not get as much attention as it should have just because Covid has dominated so much. It shows the power of that transatlantic relationship and of working together on an island. It is a pity we could not work together more on Covid.

Politically, we must accept that, work around it and do our best. We all knew that we were held back in a way in not being able to approach it on an all-island basis. Perhaps the witnesses will give their reflections on that and also provide more specific information on the adverse impact Covid has had on their work.

I was very interested in Professor Gallagher's comment that "Cancer patients treated in research-active hospitals, particularly those with strong academic links, have better outcomes than those who are not." My mother had very bad cancer of the mouth about ten years ago. She is still with us but she was not expected to survive. Every day, I thank the staff of St. James's Hospital for the work they did. What more can politicians do to bring academic strength to hospitals? In respect of university places and enterprise, what can we do to foster the talent we need North and South? We speak frequently about medical cases in Northern and Southern universities.

In his article Professor Lawler mentioned the Cancer Moonshot in the United States. I am not sure what that is so perhaps he will tell me because I find it fascinating.

Professor Lawler works with the all-island hospice and palliative care in St. Francis Hospice in Blanchardstown. I do a lot of work with the hospice and I am interested in finding out what work he is doing with it and the institute.

In what other areas of the health can we learn from this work? We have seen the benefits over the past 20 years. Ms Mulroe spoke of the training provided by the National Cancer Institute in Washington and its impact. She noted that Northern Ireland has the best survival rates for breast cancer and has made improvements in bowel cancer outcomes, that 35,000 patients have accessed cancer trials and that quality of life has been delivered. The organisations represented here are doing something right. How else can we make this work and how can we support them?

Professor William Gallagher

Perhaps Professor Lawler will address the Senator's questions on the adverse impact of Covid and research-active hospitals.

Professor Mark Lawler

On the impacts of Covid, yes it has been a challenge in relation to cancer care and cancer research, and not just on the island of Ireland. We have done a lot of work in the United Kingdom and we were the first to show the impact of Covid-19 on cancer services and cancer research. Unfortunately, that has been the reality. However, it has allowed us to work on an all-island basis in relation to Covid and cancer. I agree with the Senator that we should have worked on Covid to a greater extent on an all-island basis but certainly we have done so with cancer.

The work we did initially looked at what happened in Northern Ireland and the United Kingdom. We have been working with the faculty of pathology in Dublin and pathologists and oncologists around the country through six different organisations. We are pulling together a report that will come out in December. We would be very happy to invite members of the committee to the launch. This will show the importance of data. Having that data intelligence allows us not only to identify what the challenges and problems are but, much more importantly, it points the way in relation to solutions. We have developed a seven-point plan to mitigate the impact of Covid on cancer. That is very important. Data help us to identify the problem, because we need to know what the problem is and the scale of the problem, and the data also drive how we actually solve the problem. While we must identify the challenges, we are much more into driving what the solutions are.

The Senator's second question was on research-active hospitals, which are something I am very passionate about. Last year, we did work with the European Organisation for Research and Treatment of Cancer to look at this. I am a bit of a data geek, and I make no apologies for that. One of the aspects we wanted to look at was if there was evidence that tells us that people who are treated in research-active hospitals have better outcomes than those which are not. We found that it to be the case, which puts to bed forever the myth that cancer research is a little add-on and something that people do in ivory towers. Cancer research is an integral part of how we deliver modern cancer care. I am sure Professor Lowery will address that because she is right at the coalface of delivering cancer care. We would not be anywhere in our fight against Covid without science and the same applies with cancer.

The Cancer Moonshot is a US initiative that goes back to John F. Kennedy's shooting for the moon programme. Essentially, it is a co-ordinated approach looking at bringing together the best minds in the US to address cancer. President Biden was the champion of this when he was Vice President and he continues to be a champion. On his second day in office, President Biden held a virtual call with the National Cancer Institute. That is how important he believes it to be. I am asking why we cannot have an all-island cancer moonshot. We have the people, the skill set and the opportunity to bring together people across this island. That, alongside collaborations with the National Cancer Institute in the US, would, I suggest, make us unbeatable. This is the type of challenge we want to address because this is how we are going to deliver for our patients.

Professor William Gallagher

It may also be interesting to discuss the fast-tracking of innovation and how we do that, which we referred to earlier, and perhaps the context of protected time for research.

Professor Maeve Lowery

I am glad to hear the outcome for Senator Currie's mum, which is wonderful. It is lovely to hear about the good stories. We do not hear enough of that.

When we say that patients do best in research-active hospitals, we must understand what cancer research really means on an individual patient basis. Sometimes people think that cancer research is somebody in a laboratory growing cells and so on, and a large part of it is this basic research. However, what it really means for implementing change in cancer care is that we are using research to address key barriers and problems that we identify in the care of our patients. That is not just new treatments. It is also how a person recovers better from a very difficult surgery, what kinds of psychosocial care we need to provide to a particular demographic or subgroup of patients to make sure they can identify the symptoms of their cancer and attend for treatment in a timely way and what supports a person needs to live with and beyond cancer and how does that differ depending on where they live, their age, what cancer it is and what surgery they have had. There are so many questions that arise when we map the clinical care pathways for prevention, diagnosis and treatment of cancers that can be solved quicker and better through innovative and focused cancer research. A key part of that is that we do not work in silos. For example, I can work with somebody like Professor Gallagher, go to somebody like Ms Mulroe or chat to Professor Lawler. I could, for example, talk about our patients with oesophageal cancer who are undergoing this huge surgery. It is very hard to get them back out into the community, living lives where they can enjoy good quality of life after the treatment of their cancer. I can ask my colleagues how we can innovate together to figure out what that looks like, how we can measure the extent of the problem with data and how we can share the information we have gained to address that problem together. This is how we move the field forward.

With Covid, that research happened very quickly. That is what needs to happen in cancer research. The important thing about Covid-19 research is that everybody came together very quickly. Traditionally in research in every country, we tend to compete for funds or attention across our academic institutions and hospitals, or personally. To drive forward patient care, it is better when we are working collaboratively together rather than in silos. This applies across disciplines, institutions and borders.

Professor William Gallagher

I will try to cover the Senator's question on other aspects of healthcare. One of the interesting aspects we are trying to do within the proposed all-island cancer research institute is a cancer research programme, but people do not just present with a cancer-related issue. Commonly, patients have comorbidities. Often, it is an interesting concept of what is the impact of those comorbidities on the cancer and vice versa. We know, for example, that one of the biggest new emerging treatment options in cancer is immunotherapy. There is work from a very strong investigator in Trinity College Dublin, Dr. Lydia Lynch, who is a joint appointment between Harvard and Trinity College. Dr. Lynch is a world leader in looking at the impact of immune cells in the context of the obesity and cancer.

This may have an impact in respect of therapeutic response. Dr. Lynch is a fundamental biologist trying to explore that. She collaborates with a colleague of mine, Professor Donal Brennan, who works in the clinic in the context of gynaecological cancers, trying to translate this type of information in the context of cancer care. It is a matter of joining the dots of the people with the expertise, in either clinical or basic science, facilitating that interconnection and funding the research programmes. This is not just a talking shop; it is an actual activity. It has to be brought forward. It takes hard graft and resources to do it, but we are primed in an Irish context to do that. We are naturally able to interact with one another but we have to resource this properly.

Ms Eibhlin Mulroe

I am conscious of the time. I thank Senator Currie for raising the issue of talent. She asked about the gap that is there. I talked about the fact that we had only 40 medical oncologists when we need 80. It is probably the same with radiation oncology, haematology and surgery, all the disciplines involved in cancer research. Attracting people in is a challenge throughout medicine. We have heard about it a lot. People will be attracted into this country if what Professor Gallagher, Professor Lawler and Professor Lowery have talked about is provided, namely, a research-rich environment. The people at the top of their game in medical oncology want to work in a research-rich hospital. We have had rows of our graduates go abroad and work in amazing cancer research institutes in the US, Australia and Canada and they have not all come home. They have that capability and knowledge. Let us look at that and at training. Let us pick the low-hanging fruit and look at developing that relationship with the National Cancer Institute. Professor Lawler and I were on the phone to the institute the day after Ned Sharpless spoke to President Biden. We are Irish on this island. We have the ability to network. It is in our DNA.

I think about some of the trials we are running. We have investigators on one prostate cancer trial which is run by a group called the Australian and New Zealand Urogenital and Prostate Cancer Trials Group, ANZUP. We are opening the trial in Ireland and the UK, including in Belfast. The investigators, that is, the doctors, are in Harvard, Canada and Australia. Two of our investigators, Professor Ray McDermott and Dr. Paul Kelly, have trained and worked with these people when they were placed in other hospitals abroad. It is that network. We are really good in cancer research at bringing that knowledge home for the benefit of the people here and our patients. That is really important to say. We were asked why we have done so well so far. The one thing about the cancer community is that its members work together. It is a grassroots movement in a way among cancer researchers and oncologists. You cannot just create that or fund that. It naturally happens within this space. We are here today all representing different organisations. There are ten institutions behind this all-island collaboration that we are here to discuss. That in itself says a lot, and not every country can replicate what we are doing here in cancer research.

That is the 15-minute slot filled. Next is Sinn Féin, followed by the SDLP, Alliance, Aontú, Independents, Sinn Féin, the Labour Party and the Green Party, just so people remember. I have been given two names by Paul Stephens, the clerk to the committee: Mr. Francie Molloy, MP, and Deputy Conway-Walsh. They may speak in whichever order they like. Mr. Molloy's name is first.

Mr. Molloy will go first. He is further away.

Mr. Francie Molloy

I thank the witnesses for the presentation. It certainly highlights the urgency of dealing with cancer, and it is good to see the collaboration that is happening across the island of Ireland. That augurs well for the future. My first question is about the understanding of what this work is about and the ordinary person's access to that understanding through the provision of information on the research that is going on. The other issue is the linking of all the hospitals and institutions into the research and development of the strategy on this. Also, we hear a lot about collections and attempts to raise funds for cancer research. Like anything else, once that goes on for so long, people forget about it and move to the next popular charity or whatever the case may be. If more information were put out to the public as to what research is happening and what developments within that research and what new mechanisms and treatments are being found, maybe it would encourage again an uptake of the funding for cancer research. I think people very often wonder where that funding goes and what happens to it. Furthermore, how do we stop these developments becoming the ownership of a particular company? How do we make this more accessible to the general public in the future?

Professor William Gallagher

I will take the first question. It is critical to have appropriate public and patient involvement. It is becoming increasingly important. To a certain degree, in the past, scientific research, certainly the kind of research I do in a laboratory setting, was not very patient-facing and we did not really interact that heavily. Obviously, the kind of research Professor Lowery was doing, because that was with a patient, is closer to the person. That has changed over recent years. I will give a good example driven by a colleague of mine, Professor Amanda McCann in UCD. This whole initiative started with a conversation that Mr. Briscoe and I had at a meeting called The Patient Voice in Cancer Research about three years ago. This initiative was essentially an idea whereby we gather together researchers and a group of patients with a lived experience of cancer. In that case, these were researchers who would not normally interact with patients. This was done to have a two-way dialogue. We have been going through this evolution over a number of years as to how we appropriately communicate our research and understand patient needs. It is a matter of having that conversation and two-way dialogue. I will give the committee a link to the YouTube video so members can watch it later. Margaret Grayson, who is also on our committee, is a very strong patient advocate who has been at the centre of a lot of driving forward of cancer research programmes. It is critical we have that.

That is at the patient level, but I think part of Mr. Molloy's question was about wider public engagement. That is important, not just for cancer research but for awareness of science in general. People now know what PCR, antigen tests and sequencing are, for example. That is what we do on a day-to-day basis in cancer research. The foundations of those technologies are in cancer research. The technology for the Human Genome Project started in cancer research labs. That conversation about the use of science has not really been heard in an Irish context. That is starting to change, and Covid has had an impact. We now need to go forward. There is also an onus on the research community to become better at communication. It is up to us to communicate. It is a two-way system.

I will make another comment and Professor Lowery might come in on it. We talk about ten academic institutions. Each of those institutions has a natural affiliation with a clinical partner. UCD, for example, has an interaction with St. Vincent's Hospital and the Mater Hospital, while Trinity College interacts with St. James's Hospital. Each academic institution has an affiliation with a specific key clinical partner. That is strong in order to reinforce those close academic links. Professor Lowery might talk about, for example, the Trinity St. James's Cancer Institute, which has now gone a step further in the Organisation of European Cancer Institutes, OECI, accreditation process. Fundamentally, what we are talking about in AICRI is stepping beyond even that and providing a framework whereby those institutions come together, both the academic institutions and their affiliated clinical institutions, as one whole entity. I do not know if Professor Lowery wishes to comment on that.

Professor Maeve Lowery

Yes, I do. There is a good example on the campus on which I work of how academia can work directly with patients and interact with patient care and those of us who provide patient care and those of us who straddle both worlds, if you like. A couple of years ago, we established a cancer institute on the St. James's campus and on the Trinity College campus, namely, the Trinity St. James's Cancer Institute.

In 2019 we achieved designation from the Organisation of European Cancer Institutes, OECI, as a joint entity as a cancer centre. It was an international benchmarking that showed we as joint collaborators, hospital and university, integrating research into the education of both patients and our healthcare staff but also integrating that directly into patient clinical care. That is the international model of how excellent patient care is provided. That is what it is our vision, on an all-Ireland basis, to do. It is to take research from the academic institutions' silos and bring it to the patients. That, as Mr. Molloy pointed out, should be a two-way process. It must have patient involvement from the very beginning.

Mr. Molloy's point is really well-made. We have not been good enough at ensuring the right patients are at the table at all those discussions because there are some patients who have a very high healthcare literacy and they feel cancer research is relevant to them and that they can come and ask me questions, Google things and come with a level of expertise around their cancer that is hugely impressive. I met those patients when I lived in New York and I meet them now I live in Dublin. However, I also meet the other patients who feel cancer research does not really apply to them and who would not feel they have the language, knowledge or maybe the education to be able to take ownership of that and to participate in these two-way discussions. That is on us. It is on us as a research and clinical community to go out there and provide for all patients from all economic and social backgrounds and from all racial backgrounds to be able to sit at the table and not have silos whereby some people feel it applies to them and some feel it does not. That is something I have noticed personally. It is really important that equity of access is applied across the board.

Professor Mark Lawler

To add a concrete example, I am scientific director of DATA-CAN, which is the UK's health data research hub for cancer. When we set it up we decided the patient would actually be at the centre, not just as a tick box but actually at the centre. We have it that our patients actually lead some of our programmes. They sit on our steering committee, which is the highest level of the committee. Not only do they feel empowered, they are empowered. They actually look at all the research work we are doing together. They work with us, so we co-create a particular programme. They will also look at programmes and say "No, you should not be doing that research". They have the power of veto as well. That is really the way one does proper patient-focused, patient-involved and patient-engaged research. One moves away from the model where the patient is the passive recipient to where the patient is the active participant. We have found it has been absolutely fundamental to our success because the patients have been able to point out things we have not thought about. They have been able to put more of a patient focus on it in terms of quality of life and in terms of living with them beyond cancer. In our interactions with other stakeholders, we have found that patient voice is not only heard but listened to and used to actually drive the programme. Thus we are moving away from the patient simply being, as I said, a passive recipient to the patient being intimately involved. That is the way one delivers the best-quality research for the patient and for members of the public, in relation to really delivering. They must be intimately involved from the start.

Patients were involved when we writing the grant to get the funding to do the work from the very start. That is really what we are trying in AICRI. We are looking at a different way of doing things, not the traditional way it was done in the past. We really need to bring that because patients talk to us and say they want to have a better quality of life so we should be studying quality of life. We have done studies right across Europe and the amount of research that has been spent on quality of life is 2%. That is just not good enough. However, to drive that we need patients to tell us their experiences. What are they experiencing in response to particular treatments or drugs? Senator Currie asked about palliative care earlier. They are the areas we should be working on as well. It should not all be about the next big thing and innovation. It must also be about delivering what patients want.

Ms Eibhlin Mulroe

If I can come in there as well, within this group we all share that value. We have also experienced it just like Professor Lawler and Professor Gallagher have outlined. In Cancer Trials Ireland, we have a patient-consultant committee which is a sub-group of our board. The chair of that committee, Patrick Kivlehan, is on our board, so it is involved in decision making around everything we do. Tomorrow our disease-specific study group meetings are happening with all our researchers and doctors, in gynaecological cancer, prostate cancer and breast cancer. We have a patient advocate in each of those. They ask questions and drive the agenda for the trials we are doing within Cancer Trials Ireland. I am wearing these colours today in memory of someone who is an example of how patients are driving the desire to see more research in this country. Pat Smullen, Lord rest his soul, was a very famous jockey. He had pancreatic cancer and there were no options in the clinic for him. He talked to us and said he wanted to help Cancer Trials Ireland. We now have four clinical trials in pancreatic cancer because of the money Pat raised for our work through the horse racing community.

There are a lot of those examples where the public do not just want to know more about research, they want to drive it and drive investment in it. It is something that is growing and growing. We are going to see it in this group we have set up. We know we are going to get support from the public. We have done market research on public attitudes to clinical trials and 80% of the public support clinical trials and want to see further investment in it. They also support sharing their data for the benefit of research and for the benefit of future treatments for patients and the public. Mr. Molloy asked some really good questions and what happens when the treatments are found. There is a whole argument around the costs of that and patients accessing that. Professor Lowery made the point that health literacy is not the same for everyone. We do our very best to reach out to the community. That is a commitment we will make going forward as a group that the public engagement will be important. That is different to the patient engagement. It is about both.

The witnesses are all very welcome. I was glad to hear Ms Mulroe acknowledge at the beginning the fantastic work of Professor Paddy Johnson and the key role he played in the signing of the memorandum of understanding with the National Cancer Institute in the US. It is because of him we can have the discussions we are having today. Our own Bairbre de Brún worked at the very beginning of the All-Ireland Cancer Consortium in establishing that MOU when the Executive was established in 1999 and it is important to acknowledge all of that.

I have a number of questions. Do we have a central portal for the sharing of this information? We saw with Covid that we can speed everything up. We can protect the integrity and we can make things happen much quicker. While everybody is in that frame of mind we need to harness that collaboration and communication our witnesses have talked about. How do we speed it up? How do we support the submission they have made to have the resources to do what they need to do?

I really want to talk to them about the educational opportunities around all that. It was mentioned we have 40 oncologists at the moment and need 80. It is about how we actually do that in higher education. We have the Department with responsibility for higher education and the institutes. Are there opportunities there for the technological universities, for instance, with Mayo University Hospital, University Hospital Galway and Magee College? How do we make it work and what part do we as parliamentarians need to urgently play across the island to ensure that happens? How do we do it throughout the life cycle in terms of education? There have been wonderful oncology nurses. What prevents them from being oncologists and what are the blocks and the barriers we need to undo there?

We recently saw there are blocks to the implementation of Sláintecare. I want the witnesses to use this forum in honesty to tell us whether there are blocks there that need to be removed. Is there pushback or are we all on the same page? It is important that if there is pushback we address it at this stage. The frightening thing was one of the slides said four out of ten cancer patients are not getting their chemotherapy.

How big of a problem is it that we do not have the beds there in the hospitals? I hear of stories where there are wonderful professionals, clinicians, and oncologists but if they do not have the beds then they are always going to be limited in what they need to or can do. Lives are put at risk because of that. There is a great deal there but perhaps in answering questions from the other members, our witnesses may be able to include some answers into those of mine.

To be fair to everybody, there are some top-class questions there. One of the difficulties is the time as15 minutes is all that is available. I am in the hands of the committee on this and I want all members to have an opportunity to contribute. If the member is happy perhaps our witnesses can answer her later.

This can be done throughout replies to other people's questioning, which would be fine or we can just share.

Professor Mark Lawler

In talking about Professor Paddy Johnston, he was one of the reasons I went to Queen's University Belfast.

That is perfectly helpful. We now have Ms Claire Hanna MP, of the SDLP, followed by Dr. Stephen Farry MP.

Ms Claire Hanna

My sincere apologies, folks, as I am just that the airport, and I am literally boarding a flight at the last call. I have been listening in and it has been a very informative presentation. As Senator Currie has said, we are all learning from everything that our witnesses have presented to us. It is very clear that health has been one of the most successful components of the North-South co-operation and will continue to be. It is one of the very logical things to do on an all-island basis.

I want to focus briefly on the fact that a cancer strategy for Northern Ireland is overdue and is a New Decade, New Approach deal commitment. I wondered what engagement our witnesses had in potentially ensuring that their project become a key component of that or is built in to the development of that strategy.

Additionally, focusing on the North as well, we have talked about biotechnology clusters and I know that that is something that Queen’s University Belfast is obviously involved in. Have our witnesses had much engagement with, for example, Invest Northern Ireland, Invest NI, in creating the conditions for that? Apologies as I will turn my camera off now but I am still listening, I greatly appreciate the presentation and I thank the committee.

Mr. Ronan Gallagher

I thank Ms Hanna and it is good to see her again.

On her first question, we very much have had an engagement with the Northern Ireland cancer strategy, including where we presented this vision to the all-party group on cancer in highlighting the opportunity that is here. We have also had quite a number of conversations where I presented this vision to Cancer Focus Northern Ireland, which is one of the main cancer charities in Northern Ireland. There are definite opportunities there and this is very much on that agenda in how we can work together.

On the biotech sector and Invest NI, this is particularly relevant - and I will explain this now for other people in the group - because we are in the middle at the moment of the Belfast Region City Deal, which is a significant investment in infrastructure in Northern Ireland in a number of different areas including data, creative industries, health and life sciences clinical trials, and all of these are very relevant to this programme. One of the things that we have been feeding into the Belfast Region City Deal and also to the Derry-Strabane City Deal are the opportunities to look at ways in which we can work together right across the island. The SME is particularly important in Northern Ireland in respect of that community and we have been working very closely with it both in general as to both Queen’s University Belfast and Ulster University but also in highlighting this potential opportunity.

Hopefully, the Belfast Region City Deal will finally be announced at the end of next month and it is something that we have been working on for the past three years. It is essentially a £1 billion programme right across Northern Ireland in the Belfast city region, and, as I said, there are other deals as well. These provide that opportunity for innovation and we certainly see cancer research and care being an integral part of that.

Going back, perhaps, I will answer Ms Hanna’s question or part of it and I thank her for the questions. I was there in 1999 in Government Buildings in Stormont. A sense of excitement and a sense that this was something different very much permeated that which was to do with Professor Johnston and his vision. Thankfully we are bringing that vision along and bringing it to the next level. He is, hopefully, up there looking down at us proudly.

Ms Eibhlin Mulroe

I believe his brother is watching us and it would be nice for him to see that we are recognising that today. I will be very brief as I am conscious of colleagues wishing to contribute.

I assure Ms Hanna and everyone here that both Professor Lawler and I sit on the implementation committee of the Ireland Northern-Ireland US consortium and we are very happy to say that the first meeting took place last week. There are Department officials, North and South, on that committee and the cancer strategy from both sides of the Border are well represented on it. We will be complementing the learnings from that with this institute and in what it is trying to do. I know in respect of the Northern Ireland strategy that it would have been nice to have seen a little bit more about trials and research. That is some feedback and having said that, it can be written a strategy but one may not get there, which is what is happening in the Republic of Ireland. We have a target of 6% and we are probably only at 2% of patients on clinical trials and we have a way to go there. Now is the time because we have everyone at the table. As to that committee in the Departments, we have to congratulate the people involved in that, people like Muiris O’Connor and Gay Ireland in the Departments of Health in the South and North respectively, as well as Dr. Bill Dahut from the National Cancer Institute in Washington who are giving their time, expertise and commitment to this.

At the back of all that we have the Shared Island strategy within the Department of the Taoiseach, a key item of which is research. We really see synergies here, everyone is coming together on this, so it is very positive. I will pass back now to our chairman, Professor Gallagher, to see if there are other questions that need to be answered.

Professor William Gallagher

I would like to make further comments but I do not know if there any additional questions I can address.

We will move on then now to Dr. Stephen Farry, MP for the Alliance Party.

Dr. Stephen Farry

I thank the Chairman very much and wish everyone a good afternoon. I will pick up on the last of the questions, to an extent, on funding issues and broaden it out slightly. Can I have some comments, particularly from the northern perspective, given that I am an MP from the North?

First of all, on the direct support from the Northern Ireland Executive and the Department of Health, how do all of our witnesses see this being solved particularly in light of the uncertainty around budgets over the coming years and other health pressures? Our witnesses have already referred to the Belfast Region City Deal issue and some of the projects in that regard.

Also, on the perspective from Queen’s University Belfast, perhaps our witnesses might be able to talk about some of the other funds that are potentially available from the UK Government which are allocated on a competitive basis and to what extent can they be brought to the table to reinforce some of this work.

Then, more directly on the research pots that are available on a cross-border collaborative basis, first of all to what extent is Horizon Europe - as the successor to Horizon 2020 - a potential source of supports? There was obviously a very strong collaborative foundation to begin with in that regard. Is that a potential donor?

Also, on the US angle, in addition to the very specific health tripartite relationship, to what extent can the more general US-Ireland research partnership be also used to support this initiative? Sorry, if this is a cocktail soup of funding pots.

Professor William Gallagher

I will tackle the first part of the EU programmes and the American ones may complement those. The first thing to indicate is that Irish researchers have very much taken a leadership role in cancer research programmes which have been funded at a European level. For example, I have led five large-scale EU cancer research programmes and I have similar colleagues out there. We are good at co-ordinating these types of complex network programmes at a European level and we are considered as being able to do that and we have equivalents in Northern Ireland.

On the opportunity, again there is an EU Beating Cancer Plan which I believe has been allocated approximately €4 billion and is one of the very significant projects at European level. There are five dedicated missions, one of which is cancer. These activities span from basic research towards the clinical arena. It is important that we position ourselves for participation. While we have had a good track record of participation in these programmes, the process has changed and one has to become clustered and very much more centralised in a team-based approach.

A good example of that would be - perhaps Professor Lowery might comment on this - where there is a push towards comprehensive cancer centres at a European level.

We do not currently have a comprehensive cancer centre in Ireland. We have the OECI cancer centre established at Trinity St. James's Cancer Institute and there are similar institutions pursuing that. The challenge is to become a comprehensive cancer centre because that is becoming the requirement for participation. Again, it is called out in the national cancer strategy. The AICRI can provide at least one mechanism or plank in terms of supporting that because what is critical for a comprehensive cancer centre is not only cancer care but also that research is an integral component of that. It needs to have a very strong research agenda to be able to become a comprehensive cancer centre. We can have an argument about whether it will be one site or a distributed site, or what is the accreditation system, but, ultimately, we need to come together to be able to participate at a European level and it is critical that we do that. Professor Lawler may want to comment further.

Professor Mark Lawler

I thank Dr. Farry for the question. His previous involvement in health has been relevant in this regard. We need to think North-South but also east-west. There is a significant opportunity, particularly when the comprehensive spending review finally happens in the UK, in regard to opportunities there, both on an all-island basis but also from that east-west perspective. We see this as being a significant opportunity in regard to ways in which the shared island unit can contribute. The Taoiseach visited us in Queen’s last week and one of the things we talked about specifically was how we can leverage this for something like cancer, which affects us all. Certainly, partnership in Europe is something we have done a lot of in the past, as Professor Gallagher said, and I think we have significant opportunities. It is very important to us, or certainly an advantage to us in a way, that cancer is the only health mission in the EU missions, in that five missions are identified but the only one related to health is cancer Therefore, we have the opportunity and working together is going to make us better than the sum of our parts.

On Dr. Farry’s other question, the opportunity of the city deals and what that is going to drive in innovation is very significant. Part of that will be how we deal with data, which was a question asked earlier. That is a conversation we need to have. Sean O'Neill, who is the chief reporter for The Times, wrote an article two months ago where he said that we get the data and statistics every day for Covid and asked why we cannot get the same for cancer. I would ask the same question. If we had data every day on cancer, we would have much better opportunities to drive the research agenda and use it to influence how we treat our patients. There is no technical reason we cannot have it, so we need to work together to look at the barriers we need to overcome to make that a reality. There are examples where we have worked together in the context of Covid and cancer and where we have been able to bring together eight different bodies, all of them contributing their datasets. I hate people who silo their data; it should be a criminal offence. It is the public who are providing the data in many cases through the hospitals and the patients and, therefore, that data should be available to allow us to make rational decisions in regard to the care of our patients and our citizens.

Professor Maeve Lowery

I want to come back to the comment on the comprehensive cancer centres and the importance of us working together in joining it up on an all-island basis. I take Professor Lawler’s point. Cancer is still the number one killer in Ireland, ahead of Covid and cardiovascular disease. We sometimes forget that and sometimes, unfortunately, our patients do not have such a strong voice. It is very important to make that point and make it clear it is the number one killer of Irish people, North and South.

To come back to Professor Gallagher's point, I am the academic director of the Trinity St. James's Cancer Institute, so I have an academic appointment at the university and a clinical appointment at St. James's, and I was part of the team that drove the accreditation process for the cancer centre at the Trinity St James's campus. What that meant was that we started at the beginning and we were the first accredited cancer centre, although I hope we will not be the only one. We drew those lines across the campus and asked how research can facilitate better clinical care pathways across all cancer types, and how it can facilitate better education for nursing staff or other front-line healthcare staff, and even those of us who are not on the front line. That was a difficult process. There was international benchmarking, of course, and we finally achieved our accreditation, but it does not stop there. We see ourselves as an exemplar of how we can achieve step one but our goal, across all of Ireland, is to improve cancer outcomes nationally and take our seat internationally at the table as a country, not just a centre, that contributes to the global problem of cancer care.

I am here because I want to work with all of my colleagues, North and South. I do not see how we could ever achieve the goal that we want to achieve for our patients alone. It will happen not in one hospital, one county or one academic institution, and we need to extend our hands across to each other. That is the only way any of us will achieve the goals we want to achieve.

I will take the opportunity to address the comment about nursing, which is very important because we do not have a nurse here today. Our nurses have been on the front line of cancer care and Covid care. Some of the nurses who work with me were seconded to intensive care in the middle of the first and second waves, and then went straight back down to the oncology day ward, which did not close. They were exhausted and stressed, but they kept showing up and they are still showing up. We have to realise that to maintain morale among our front-line healthcare staff across multiple disease types - cancer is just the one I work in - we have to provide a career pathway that is valuable, given the level of knowledge, skill, intelligence and achievement among our nurses but also our care attendants, physiotherapists, dietitians and all those who provide care in the hospital. Unless we make their job better by integrating research and education into their day job, we are not going to retain the best. It is not just about retention; it is about attracting the best, training them to be the best and making sure we keep them. That is across not just doctors, but across all the staff who work across our universities and, importantly, within our hospitals.

Professor William Gallagher

There was a comment on US-Ireland partnership, which Professor Lawler might cover.

Professor Mark Lawler

One of the things we did just before lockdown is that Ms Mulroe and I were in the National Cancer Institute in Washington and we also presented on the US-Ireland bipartite agreement. We certainly got a very good reception in respect of the concept of the AICRI but also the opportunity to contribute and compete for part of the funding for that. My understanding, and maybe this is where the committee can help us, is that that fund is going to be continued but also potentially expanded. We have cancer projects within that, and I am involved in one with the Royal College of Surgeons Ireland and GE Healthcare in the US, but there should be more of them. They have proven themselves to be very effective and we should look to expand them, and having more cancer projects would be part of that. If we were looking at an ask, we would certainly be looking at that and at what the opportunities might be in regard to the research that we are doing together. There are good examples where we have shown we can work together and it is about looking to expand those opportunities.

The training piece is very important as well, to come back to Dr. Farry’s question. It is about ways in which we can give innovative training so that some of our younger people can really get that opportunity to spend time. For example, we have a PhD programme at the moment where our students go from Queen’s to the National Cancer Institute, NCI - they do a masters in Queen's and they then spend three years at the NCI. We would like to expand that to be an all-island programme, which would be a great example of how we work together. That is actually how people work together. It is when students are working with each other that the principal investigators also work with each other, so it is almost a cycle of innovation and of bringing people together. That would certainly be an example of something we would like to bring onto an all-island basis.

Professor William Gallagher

I want to follow up on that with a concrete example. As I mentioned in my opening address, we are putting together a submission under the HEA North-South research programme. Again, this is the first substantial funding recently to encourage North-South collaboration. The specific focus of that application is for PhD and post-doctoral fellow training across the ten institutions, which provides an exciting training opportunity and is a foundation stone for AICRI. The deadline for that is 8 November and, hopefully, it is going to be very competitive. We think there are approximately 500 applications coming in but only ten will be funded, so the success rate will be low. Ultimately, however, we think we have a compelling argument.

Dr. Stephen Farry

Do I have time in my slot to ask a supplementary question?

Dr. Farry has two minutes remaining, but I will allow him three minutes.

Dr. Stephen Farry

My question is for Professor Lawler. Regarding the point around leveraging on an east-west basis to complement what happens on a North-South basis, in their experience of applying to the various funds, does there tend to be exclusionary clauses that prevent some of the UK-wide funds being applied to support North-South collaboration even if the money is being spent through a Northern Ireland institution? Are we able to join up or are there restrictions there of which we need to be mindful at a political level?

Professor Mark Lawler

It would be useful to look at that. Science Foundation Ireland has said that it will fund all-island research centres but because of the way it is set up, it can only fund the Republic of Ireland part of that research. At the moment, we are looking to see how we can match that with funding either from the North of Ireland or from Westminster. Thus far, that has been challenging, partially, because the comprehensive spending review has not been completed. We have one funding body that is willing to fund but it needs somebody to dance with. If Dr. Farry could assist in a "Strictly Come Dancing"-type arrangement of two funders that would be really useful. I will follow up with Dr. Farry on that after the meeting.

Dr. Stephen Farry

I appreciate that. I am happy to take that away.

Ms Eibhlin Mulroe

To come back on the point----

I have to leave in a moment to go to the Dáil to contribute to the statements on Breast Cancer Awareness Month. May I put my questions at this point?

Go ahead.

I greatly appreciate it. As I said, I am due to speak next in the Chamber on those statements so I might not be here for the responses, but I will I will listen back later to the recording of the meeting.

This topic is an important one for me for two reasons. First, I have had cancer in the past couple of years and, second, North-South development is a key part of Aontú's political project. Sometimes statistics are gathered on a North-South basis. It is very hard to understand exactly what the situation is when there is partition in statistics. Are cancer statistics now gathered on an all-island basis? In the duration of this particular presentation by the witnesses, nine people have been diagnosed with cancer, which shows how shockingly prevalent it is and how many families are hit by it. While not wishing to introduce a negative into what has been a positive presentation, are there limits to what can be done? Is the working group limited by law regarding what it can do? Are there funding constraints that we can be involved in trying to fix? How much funding does the group get? Is it facing any other resistance in this regard? How do we move from all-Ireland research with regard to cancer to the delivery of treatment on an all-Ireland basis in respect of which we are planning together, funding together and delivering services together to make sure we have more effective services for people?

The next issue might be slightly outside of the witnesses' bailiwick. Last year's report from the National Cancer Registry shows that Ireland's survival rate for, say, breast cancer is 82%. That is quite poor by European standards. For example, in Sweden a woman is 7% more likely to survive for five years or more than if she was diagnosed in Ireland. In Britain, a woman is 5% more likely to survive for five years or more. It is not just about geography; there can be a 12% differential depending on whether a woman is diagnosed or treated in a public hospital or a private hospital. As I said, that may not specifically be the witnesses' area of expertise, but I would greatly appreciate it if they could address the issue.

Professor Mark Lawler

On the all-island statistics, the answer is "Yes". We have done that in the past. An all-island cancer atlas has been produced. One of the things we have been talking about in the implementation group is doing an update of that. I am chairperson of the International Cancer Benchmarking Partnership that has produced some of the data the Deputy mentioned regarding the differences between Ireland and Sweden, etc. We are very much working together now to close that gap. There is a huge opportunity there. Again, it relates to the need to have access to data. It is important to emphasise that there are challenges on both sides of the border in regard to data. It is probably easier to do it in the North, but the lack of an electronic patient record in the South is hindering the ability to bring together all of that data. That said, we have done a lot of really good things together. A new director of the National Cancer Registry in Cork was recently appointed. The two cancer registries are working closely and they are part of the programme we have talked about. They are putting in a specific application in regard to them working together on an all-island basis. There are challenges, but there are also opportunities. We need the data to flow more freely. This is where political will and political support can help us.

Professor William Gallagher

I will respond to the question on limits in terms of what we can do and funding constraints, but I will ask Professor Lowery and Ms Mulroe to first cover the issue of delivery of treatment on an all-island basis, if that is okay.

Professor Maeve Lowery

It is important that when we think about the provision of care on an all-island basis we think about what the future holds. We need to be thinking about cancer care in five, ten and 15 years' time. We know that over the past 20 years cancer care has become incredibly more complex and more personalised, meaning not a one-size-fits-all approach for cancer treatment, but identifying a subgroup of common cancers and targeting of treatment particularly towards a subgroup where we know that treatment might work better. The complexity of the treatment we deliver has become incrementally more complicated. Immunotherapies have their specific side effects. Under the national chimeric antigen receptor, CAR, T-cell programme which has just started at St. James's Hospital, we take immune cells from a patient with cancer, which we send to the US to have engineering done to make them cancer killer cells specific to that patient's cancer and then we infuse them back into that patient. That is an all-island service. It is probably one of the major areas of future development in cancer care.

When we are looking at and thinking about implementing or providing care, we are not thinking about what we have now but about what we need in a decade. On an island of our size, there is no way we will be able to deliver what is needed individually at small silo sites. Given the complexity of cancer care that we know we are going to need to deliver over the next couple of decades, in particular the next ten years, we are going to have to work together. Why should a patient not be able to travel from Belfast to Dublin or Dublin to Derry to have a specialised treatment for his or her cancer? We cannot provide every treatment at every site. If we work together, we better able to provide the infrastructure to deliver that level of care. All of the treatments we now provide in-clinic came from research. They all started off in a laboratory such as Professor Gallagher's and they all had to come through that translation part, such as is provided by Professor Lowery, figuring out what cancer it is best to test it on, following which they were put into clinical trial, operated by all of investigators working with Ms Mulroe. The next step is proving that it works. The pathway to cancer care - I am speaking not only of drug treatment but across the gamut of how we intervene in a patient care pathway - starts with research. If we begin working together, then that will feed into the future development of cancer services North and South.

Ms Eibhlin Mulroe

It is great when colleagues say everything you were going to say, as has just happened in terms of the responses given by Professor Gallagher and Professor Lowery. To come back to the person, for the person with cancer in Monaghan who knows there is a trial happening in Derry or Belfast it is ability to be able to travel across the border and access that trial. We have had examples of that within cancer trials, where patients from the very southern part of the country travelled to Belfast because it was the only site in the country that was facilitating that particular clinical trial. Before we joined here today - members who are on Twitter might have seen this - one of our oncology colleagues in Cork asked us to bring up the issue of how to make it easier for us to refer patients cross-border because at the moment that is really tricky. In terms of the cross-border directive, the administration is in place for travel cross-border for treatment but not necessarily for cancer trials.

It can be tricky. Deputy Tóibín talked about resistance in the system, and that is certainly one of the things that is resisting at the moment, where patients can actually travel. On the other hand, we are trying to ensure we are opening trials on both sides of the Border so there is less of that.

It is an important point, that equity of access irrespective of where you are in the country, that you are not disadvantaged by where you live, by who you are or by your education. We all here share that value, that we do not want to get to that point. That is where the statistics and the data, which were mentioned earlier, become very important. It goes back to Professor Patrick Johnson, the history of why we are all here and the first memorandum of understanding, MOU, between North and South, which funded the national cancer registry. It was the first real North and South collaboration so staff in the North and staff in the South worked together, and now we have Professor Deirdre Murray, who is the head of the national cancer research registry. More resources are needed, however.

The other side of this is that when they collect data right now on the incidence of people with cancer in our system, they are looking at paper files. As Professor Mark Lawler has pointed out, we do not have an electronic health registry in the Republic of Ireland. I used to sit on the e-health board of the HSE and, to be honest, I was very frustrated at the lack of progress made on that. We need to look at and realise we can learn from the North because in hospitals in the North there is connection between patient data. Whether you are visiting a hospital in Craigavon and then you are in Belfast City Hospital, your data are in one place and are accessible. We do not quite have that yet in the South.

You may wonder why someone from Cancer Trials Ireland is saying this. When we have patients on clinical trials, we have to send our auditors to look at all of the patient notes that are relevant to the clinical trial and ensure everything that should be done is done, and practised safely. That would be so much more efficient if we were able to do that, and particularly during Covid it became so obvious because we could not get into hospitals as we were not allowed in and our recruitment to clinical trials dropped by 40% because of that. We have talked about the resistance piece. That issue is very important.

I want to come back on the piece about nurses. Clinical research nurses have been described to me by patients as like having your mother holding your hand on your first day at school. They are the most important person to a patient in a clinical trial because he or she is facing his or her clinical research nurse more often than anyone else in the treatment, yet we do not have a proper career structure for such nurses. Clinical research nurses are not treated in the same way as other nurses within the system. That could also be said for every other medical discipline like dieticians and physiotherapists who work on research within the system. Solving that problem is also something the committee could help us with.

Professor William Gallagher

I will respond to the question on the limits on what you can do and what we are planning. One thing to note is that a cancer could have started ten or 15 years earlier as an altered cell in the body and it has taken time to develop into a presentable cancer. The study of cancer is, therefore, a long-term issue. It takes time to study it. We are trying to accelerate, fast-track and bring innovations closer, but sustainability is needed in terms of a research programme. The stop-start nature of research programmes has been a challenge in an Irish context. We have fantastic research programmes and I have led a few of them where things were great for five or six years but then everything stopped, and then you had to start to reinvent and do it again. That is not how cancer research is done effectively.

The Cancer Moonshot in the US was a game changer. A decision was made to do it, substantial resources were provided and there was a long-term vision. To me, we need a long-term vision that is a minimum of ten years and probably 20 years. The funding agencies do not really have that mindset and it is generally between three and five years, so that is why an integrated approach is needed. That is what we are doing. We are using a bottom-up initiative to define the key issues we want to address. At the moment we are using a piecemeal approach to identifying opportunities and bidding for those which fit that plan, but that is not ideal. We very much want a unified approach.

As Professor Lawler mentioned, the national development plan contains plans to create all-island research centres. There are pre-existing examples of these substantive centres working very effectively in Ireland. For example, the Insight Centre for Data Analytics involves several hundred people and it has shown significant impacts in terms of economic impact. The APC Microbiome Ireland Science Foundation Ireland Research Centre in Cork is a world leader in researching the microbiome and its interesting role in cancer. We want something similar in the cancer space because we need such a mechanism to integrate people. In the absence of that, we will keep going forward but the scenario is not ideal. We have the vision to do this but need the mechanisms to bring this forward.

The PEACE Plus programme is fantastic because it has the potential to fund elements of the healthcare intervention aspects, but we need a component. We have shown what we can do, for example, with the breast predict programme. We received €7.5 million from the Irish Cancer Society, which came from people putting coins in buckets and companies donating money. With that €7.5 million, an additional €50 million was leveraged in EU and external funding, which had very significant long-term impacts in terms of clinical trials and new diagnostics. Unfortunately, the programme has ended and it is very hard to have that legacy. Some of the fruit that was developed fell off the tree and you can only take certain things forward. We want to change that and keep those things going forward.

Ms Michelle Gildernew

I thank everybody attending the committee today for an informative debate, and I thank the witnesses for their informative and important presentations. I, too, pay tribute to the late Professor Patrick Johnson. He was a great man and I was lucky enough to meet him. I attended one of the events in Washington in 2007 that focused on the work that was done back then, and the work that has been done has been pioneering. As has been said, the Good Friday Agreement and its health element have been transformative. We are very grateful that Ms Bairbre de Brún showed leadership as the Minister of Health in the first Executive and made decisions to develop all-Ireland structures. It is a pity we have not got more structures because one can see from the North West Cancer Centre at Altnagelvin Area Hospital and children's paediatric heart services that co-operation is the best way to develop world-class services for our people across the island of Ireland.

I am very interested in the genetic work and all of the other research. The situation has immeasurably changed on the island of Ireland with Brexit and Covid, so we will look to develop services across the island and there is now an appetite to develop an all-island health service. In terms of the work they have done over the past 20 years, what can the witnesses do to advise and shape the future of an all-Ireland model in terms of cancer and across the board? To what extent do they think their work, which has been done on an all-Ireland basis, in conjunction with the United States, has been transformative and has led the way? We will look at that example in the future. Will the witnesses give us a wee insight into that and how they can see that developing in the future?

Professor Mark Lawler

I will answer part of the question. I remember meeting Ms Gildernew in Washington in 2007 and it is good to see her again.

I will give an example of how transformative our work has been and how it is regarded. The Economist runs a world cancer series conference every year. It has invited me and Dr. Ned Sharpless, director of the National Cancer Institute, to talk specifically about the initiative over the past 20 years, how it can be used as a model for other parts of the world and how the NCI will interact with other parts of the world. I guess that shows independently that this is a big deal in terms of what we have done together over 20 years.

I am glad Ms Gildernew mentioned the two examples of paediatric cancer surgery and radiotherapy in the north west. That shows we can do it, which is important because when you have an example of something that works, then you can say let us try that model and do it again. We may have to nuance it in different ways, but from a cancer research perspective, it has led immeasurably to partnerships and opportunities that had not been there before.

From a cancer research perspective, it has led immeasurably to partnerships and opportunities that had not been there before. We have also highlighted the importance of the European aspect of funding. Thankfully, even though Brexit has happened, Northern Ireland can still go into EU Horizon Europe programmes. Who are the closest partners and best partners to work with? They are those just across the Border. This makes a lot of sense from a practical point of view. We certainly see opportunities in this.

The second question on an all-island health service is slightly more difficult. Certainly committee members can see what we have done. I hope there will be other examples. It goes back to what Professor Lowery said and perhaps she may want to comment on this. Sometimes we need to look at economies of scale and things we can do together. It does not make sense to have four or five different places all doing the same thing, perhaps not very well, if we could bring it all to one place and provide the infrastructure, talent and expertise to allow us to deal with a particular clinical condition.

Professor Maeve Lowery

This is a great point. Our delivery of care has changed and needs to change further, for cancer and for everything else. I know about cancer so I can speak to that. It is both a challenge and an opportunity. We have been doing things one way for a long time. For chemotherapy, people get in their car, drive, park, get blood tests done, sit and wait and a nurse hangs the chemotherapy drip. Now we are thinking about how we stop people coming to hospitals. Why do people need to come to St. James's Hospital? Perhaps we should go to them. If patients are sick from the chemotherapy, we ask them to come in to us so we can have a look at them. Why do we not go out to them? Why do we not say we will go to see them and see how they are doing today, perhaps with a nurse and an outreach service that does this? Suddenly there is a shift from where we always said to come on in and everyone sits together and waits. Now we are thinking this is not safe and wondering whether it was ever quite right. It is a big challenge but I also see it as a big opportunity.

Applied research can help us with this. St. James's Hospital is the only cancer centre in the country to have an electronic record and thank goodness we have it. It insulated us a lot from the cyberattack. We have been utilising it for research. We think that in the next five years patients will want to read their electronic health records. It will not just be I who reads it and writes things about patients, who have to go to another office to request to have it printed out and given to them. They should be able to see what I am writing about them and understand it. They should also see their blood tests and CAT scan results and what the dieticians have said about them. It should be presented to them in a way they can absorb and understand so they can come back and interrogate us with some questions. It will probably be an app. It will not necessarily mean logging onto a desktop. This has to evolve for the provision of care and education. Of course it would also facilitate research and data collection.

There is a huge opportunity to change what we are doing. If we work together we can do it quicker. Change does not come that quickly. There is a big opportunity, greater than there has been over past decades, to look to see how we can change the delivery of healthcare. This is the point about what a researcher looks like. A lot of the research is driven by nurses. We need to look at the pathway of nursing PhDs and masters programmes and make sure those nurses who provide care in clinics have an opportunity to use what they have learned over those decades of service and apply the right research to answer the questions and deliver the care they want to give. It is not the answer to all of the problems but it can help accelerate the solving of some of the issues.

Ms Eibhlin Mulroe

My mother would love to hear that, having crossed the Border every day to work as a nurse in the North. With regard to the question on an all-Ireland health service, something we have learned as a group is to pick the low-hanging fruit. I do not know whether we will be able to drive that agenda forward but I like the style. The one thing we can all agree on is we need more people in our health services on both sides of the Border. I spent a lot of time with Professor Richard Wilson when he was in the Northern Ireland cancer trials unit. I also worked with Dr. Melanie Morris and Professor Stuart McIntosh We have shared challenges with regard to people and protected time in our clinical research. The doctors, nurses and dieticians doing this research and trials while working with patients need to have time to do it. We do not have enough of these people. There is no point in protecting time to do research if people do not have that time. Patient care is always going to be the first port of call. We need a shared approach on the island to build a culture of research and to increase the number of people working in our hospitals. It is like a chicken and egg. If we provide a research-rich environment in hospitals, people from all over the world will want to work here because of it: not just Irish people who want to come home but others. We will attract them in. We have to have an all-island approach to this and to building this culture.

The committee has Cancer Trials Ireland's report on our protected time event and research retreat in May. Colleagues in Cancer Trials Ireland around the table who work in clinics have had a very tough 18 months. It has been very challenging for the patients, doctors and nurses in the system. We provided all of this through a ransomware attack and the pandemic, and we are all still talking about the value of research and the importance of it. It is still a priority for everyone. People in the system are tired. It has been tough. I do not know whether our colleagues in the North know a lot about the ransomware attack but it was as challenging as the pandemic for some of the sites involved. They had to try to continue to provide care as well as carry out research with no Internet, computers or phones. This was the reality. We owe a debt of gratitude to all of those people who soldiered through a very difficult 18 months. That was a particular blow. I admire the vision in the question and we definitely need to pick the steps we can achieve. It is about the culture and putting more people into the health services on both sides.

Ms Michelle Gildernew

I thank the witnesses.

I am very impressed with the presentation and the commitment, professional knowledge and enthusiasm of the witnesses. I hope they will inspire all of us to follow up on their suggestions. They have made many suggestions, all of them excellent. Perhaps if it suits them, they might prioritise them for us so we can activate through our parties North and South and on an east-west basis to articulate the changes needed. Something that struck me about the data was that people need to be aware of them. We are glued to the Covid figures at 6 o'clock every evening. The witnesses are absolutely right that if we had more statistical knowledge of the frequency or the occurrence rates and types of cancers, it would make us more aware and alert.

I know it is not the role of the witnesses but there is the question of public health information and knowledge on how to prevent cancer in the first place and what people should do with regard to their alcohol intake, diet and exercise. We need a much greater public information campaign on key areas so that if we changed two or three of these, the health gain down the road would be huge. Is this a reasonable point to make? I do not need the witnesses to comment on it now. There has to be a joined-up approach between North-South, and east-west is very important.

I respect the involvement of the witnesses with the US and Australia. What international links are there to research in places such as China, Russia and other countries where we do not visit as frequently or that do not have the same common language? How much linking up is there? This is also critical.

Professor Mark Lawler

To answer the first question on data, I will give an example that is very instructive of what we did in the UK on cancer and Covid data. At that time we started the work, nobody knew what would be the impact of Covid on cancer.

We decided to take a fundamentally different approach to collecting cancer data than had been done up to that point. We collected data in a deep way so that we got a lot of information but slowly. The problem was that when you looked at the national data on cancer, there was no evidence the pandemic was having any effect. The reason for that was data were six to nine months out of date whereas we went to a network of hospitals across the UK, including all five hospital trusts in Northern Ireland, and we were able to see what was happening in real time. That allowed us to highlight the problem, we brought that to the four chief medical officers for each of the nations of the United Kingdom and that prompted them to decide to restart cancer services because they could see that it was being made worse rather than better. That is a good example of how data allowed us to make changes and decisions.

Interacting with other countries was fundamental. I am a member of the board of the European Cancer Organisation and I co-chair the special network on Covid-19 and cancer. We have gone to 30 countries in Europe and we have a "Time to Act" campaign that we will launch in Ireland in January, to which we will invite all of the members. Importantly, we have translated that into 30 different languages and I am glad to say Irish is one of those. It is important to work together because it allows people to learn. For example, it looks like the Netherlands did better than a lot of other countries did in Europe so we need to examine why that is the case and if we can learn from that. We do not want to have point scoring around who is on top of the league but we want to find out if there was something the Netherlands did that was fundamentally different, and it looks like there was. The Netherlands set up diagnostic centres away from the hospitals quite early and it treated people for cancer in Covid-lite hospitals. That sort of thing is critical. It showcases that what one country has done is better and then other countries learn from that country. That constant learning and innovation circle is important.

It has been a heartening and uplifting meeting and I compliment each of our witnesses. Their commitment to their patients and professions comes across in every utterance they have made. I wish them well with the very important work they carry out on behalf of our society. As was said in the AICRI's introduction, unfortunately none of our families have avoided the scourge of cancer through death and illness. It is a subject that is of huge importance to all of us. I also want to say that the message to the committee and the wider public is that politics works. The existence of the Good Friday Agreement allowed this co-operation to start in the first place with memorandums of understanding and then funding being accessed for the PEACE PLUS programme. We have moved on to the shared island initiative of an Taoiseach, which will be crucial in supporting the AICRI's work on an all-Ireland basis in the future.

Mention was made of the EU cross-border health directive, which has been replaced by the Northern Ireland planned healthcare scheme since Britain left the European Union with the same processes in place. That has been established on an administrative basis and in the new year there will be legislation going through the Oireachtas to put it on a statutory footing. The AICRI might advise the committee on the need to facilitate trials under that particular scheme and we could try to advance that on a cross-party basis when the legislation is being discussed in the Oireachtas.

As a long-serving member of Dáil Éireann, I am glad we are talking about the provision of cancer services on an all-Ireland and transatlantic basis and across the European Union, and as has been said, it is hoped further afield in the area of research as well. I was a member of Government in the mid-2000s when we began a programme of rationalisation of small cancer services in most of our county and regional hospitals. There was a huge opposition to that but it was the right thing to do and to have services provided where there could be a multidisciplinary team in place. Some of us got a hell of a lot of abuse at that time for backing the proposals to rationalise and provide a better service in fewer hospital settings. That has worked and naturally there is room for improvement, but alongside that development we had developments like chemotherapy being delivered in Cavan General Hospital. We could not have had that in the past were it not for the linkages with the Mater hospital and Beaumont Hospital, and I am sure that is replicated in other places throughout the country. We want to see more of that being done when it is feasible to do so.

US President Biden referenced this work and the AICRI during his St. Patrick's Day meeting with an Taoiseach. He did not reference that off the top of his head because speaking notes would be prepared for such a meeting and those would have gone through his senior personnel and health officials. That showed the eminence he holds for the work that is being done by the AICRI on an all-Ireland and transatlantic basis, and it is heartening to hear that.

When I first had contact with some of the witnesses and heard of the development of the AICRI, I thought the idea was to have a new building and stand-alone facility. I was delighted to learn that was not the case and that it was using existing partners, not just in research institutes or universities but in hospitals, which are an essential part of research and medicine. When we saw the presentation it showed how many partners the AICRI has working together in collaboration. It is a model of what can be and what is being done daily to bring about improvements we all want to see in cancer care.

The themes I took from today's meeting and from all the contributions were the patient being at the centre and equity of access. Those are important and essential messages around the delivery of healthcare. As an island it makes sense and it is heartening and progressive that we are working on an all-Ireland and transatlantic basis, particularly with the United States. I refer to Stephen Farry's question about collaboration at a European Union level, and perhaps Professor Lawler will come back on this. Years ago when Mr. David Byrne was Ireland's EU Commissioner, among his responsibilities at the time was health. He argued strongly at that time that health needed to be an EU competence because so many challenges were coming up and so much needed to be done that countries could not do with their own competence alone. One of the witnesses mentioned the global effort to develop a vaccine for Covid earlier, which has been successful. Today we are talking about a booster vaccine after more than 90% of our population has had its second dose. That shows the success of science, the importance of the global effort and of governments throughout the world putting the necessary funding into such work.

I refer to the following initial comments of our witnesses on the vision of the AICRI, "We will become a global leader in cancer research and, as a result, we will give much needed hope to patients with cancer and their families." It is a heartening message and it is to be hoped those of us in public life as well as the public at large would hear that message. I wish the witnesses luck in the important work they do on behalf of all of us.

We want to support the witnesses in their work.

Everybody has made a contribution. I thank the witnesses for coming here today. They may want to give a summary at the end. We are happy to listen to them.

Professor Mark Lawler

With regard to what Deputy Smith said, I know David Byrne well. We have worked together on a number of initiatives, including the European Alliance for Personalised Medicine. There is now an opportunity for European competence on health. As President von der Leyen has said, health in all policies is part of her initiative as the leader of the European Commission. The Commissioner for Health and Food Safety, Stella Kyriakides, is a cancer survivor. We highlighted the cancer mission earlier on. Time is ripe at the European level not for Ireland and Northern Ireland to be a partner, but a driver and leader, in where cancer research and care will be over the coming decade.

Professor William Gallagher

I thank the committee for giving us the opportunity to present our vision. It can probably sense we are excited and enthusiastic about our project. I will give three take-home messages. As Professor Lowery indicated, cancer is the most common killer of people both North and South. The challenge is this will, unfortunately, increase. If one looks at melanoma, it is rising at epidemic proportions, but science can address that. We have become better. We have the example of Covid. We have already done this in the cancer research agenda. The technologies used in the context of the Covid vaccination arose out of cancer research activities, but we need to keep innovating and get faster. Classically, drug development took 15 years. That needs to be brought closer and faster. The AICRI fulfils a need for a common research framework throughout the island. We need the committee's support and endorsement for that. It is not an uphill battle, but a challenge to put all the parts together and we need the committee's support.

We will end the public session for a few minutes, as we have private business. I thank the witnesses. It is a great privilege to have them here.

Professor Mark Lawler

I thank the committee. We really appreciate it.

The joint committee went into private session at 3.52 p.m. and adjourned at 4.10 p.m. until 1.30 p.m. on Thursday, 4 November 2021.