Joint Committee on the Implementation of the Good Friday Agreement díospóireacht -
Thursday, 23 Feb 2023

Engagement with All-Ireland Cancer Research Institute

Acting Chairman (Senator Niall Blaney)

We have an engagement with representatives from the All-Ireland Cancer Research Institute, AICRI. I extend a very warm welcome to: Professor William Gallagher, University College Dublin; Professor Mark Lawler, Queen's University Belfast; Professor Maeve Lowery, Trinity College Dublin; Ms Eibhlin Mulroe, CEO, Cancer Trials Ireland; and Mr. Aidan McCormick, chair, Northern Ireland Cancer Research Consumer Forum. Our committee previously met with AICRI in October 2021. We look forward to our discussion today on its work to date and its future plans.

I ask the witnesses to bear with me while I cover parliamentary privilege with regard to contributions. I wish to explain some limitations to parliamentary privilege and the practice of the Houses as regards references witnesses may make to other persons in their evidence. The evidence of witnesses physically present or of those who give evidence from within the parliamentary precincts is protected pursuant to both the Constitution and statute by absolute privilege. However, witnesses 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 witnesses giving evidence from within the parliamentary precincts 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. They should respect directions given by the Chair and the parliamentary practice to the effect that, where possible, they should neither criticise nor make charges against any person or entity by name or in such a way as to make him, her or it identifiable, or otherwise engage in speech that might be regarded as damaging to the good name of the person or entity.

Members are reminded of the long-standing parliamentary practice to the effect that they should not comment on, criticise or make charges against a person outside the Houses or an official, either by name or in such a way as to make him, her or it identifiable. I remind members of the constitutional requirements that members must be physically present within the confines of the Leinster House complex in order to participate in public meetings. I will not permit a member to participate where they are not adhering to this constitutional requirement. Therefore, any member who attempts to participate from outside the precincts will be asked to leave the meeting.

I call on Professor Gallagher to make his opening statement.

Professor William Gallagher

I thank an Cathaoirleach Gníomhach, Deputies and Senators for the opportunity to meet today to provide an update on AICRI's progress and future plans. Since our first meeting with the committee in October 2021, we have made substantial progress towards realising the vision that our team presented and, indeed, that meeting was a major boost to our efforts in advancing AICRI at the time. Cancer is now one of human health's greatest challenges. It is also the number one killer of people on the island of Ireland. By 2045, someone will be diagnosed with cancer every seven minutes on this island. This is due to the expected doubling of cancer incidents among our citizens over the next two decades.

AICRI is centred on creating an overarching framework for cancer research on the island of Ireland, covering scientific discovery to the clinic. A critical feature of AICRI is facilitation of cross-Border research in key priority areas, such as precision cancer medicine and data analytics. AICRI has successfully brought together ten academic institutions throughout Ireland and Northern Ireland, as well as key stakeholders from the healthcare and charity sectors, along with industry leaders and patient advocates.

AICRI is in the process of creating an ambitious long-term programme, covering three thematic areas, namely, providing the appropriate environment for discovery science, fast-tracking new innovations into the healthcare system and developing an attractive ecosystem in the biotech sector and in allied industry sectors. Substantial progress towards this vision has been achieved since we last met. Highlights include the commencement of the AICRIstart project, which was funded via a €4 million award under the Higher Education Authority, HEA, North-South research programme, supported by the shared island fund. This grant has allowed for the creation of a unique all-island doctoral and postdoctoral research training programme in precision cancer medicine, which I have the pleasure of leading, along with my good colleague, Professor Mark Lawler of Queen's University Belfast.

By bringing together ten academic institutions on the island of Ireland in this foundational initiative, a substantial achievement in its own right, AICRIstart will catalyse a unique all-island network of excellence in cancer research. Through its broader work, AICRIstart will contribute to policy development relevant to the shared island initiative, particularly in terms of building a healthier island.

Under the same HEA North-South research programme, two additional large-scale AICRI-linked cancer research awards of €4 million each have recently started in the areas of digital health, led by Professor Aedín Culhane, University of Limerick, and Professor Mark Lawler, Queen’s University Belfast, and liquid biopsies, led by Professor Lorraine O’Driscoll, Trinity College Dublin, and Professor Paul Mullan, Queen’s University Belfast. Several additional North-South cancer research projects linked to AICRI were also funded, covering various aspects of cancer diagnostics and therapeutics, as well as cancer survivorship and quality of life.

Over the last 15 months, we have organised multiple highly successful in-person, hybrid and virtual workshops covering priority research topics, such as “Living With and Beyond Cancer” and “Digital Health”. We have also brought together the representatives from the cancer charity sector in Ireland and Northern Ireland, as well as hosting dedicated workshops with cancer patients to ensure that their voice is heard.

AICRI was delighted to have the then Taoiseach, Deputy Micheál Martin, provide the opening address at a special showcase event held in Dublin on 28 September 2022 in collaboration with Professor John Crown’s 15th International Symposium on Translational Research in Oncology. A short video summary of this event will now be played.

An audiovisual presentation was shown.

Professor William Gallagher

A key focus of AICRI going forward will be furthering of international collaboration. As part of an initial approach last July, the AICRI vision was presented at a panel discussion titled, The Future of Precision Medicine: Fast-Tracking Innovation, at the British ambassador's private residence at Glencairn, Dublin. Later in the same month, a productive meeting took place with the US ambassador to Ireland, H.E. Claire Cronin, on furthering engagement and collaboration with the US on cancer research. Indeed, tripartite collaboration between the US National Cancer Institute, Ireland and Northern Ireland has its roots in the Good Friday Agreement, with an implementation committee now in place following reinvigoration of this initiative in March 2021.

The first of a planned series of onsite engagements for AICRI in the US took place recently, with a highly successful trip to Boston in late November 2022. This included a networking evening, Cancer Research Across Borders - Ireland's Reach, organised by the Ireland America Science Forum, Boston College, the Consulate General of Ireland in Boston and UCD alumni. Bringing together a sizeable contingent from the Irish diaspora in the Boston area, the event provided an opportunity to highlight AICRI and focus more broadly on US-Ireland collaboration in cancer research and areas for future potential partnership. The AICRI team were glad to find unanimous support for the AICRI vision, especially in terms of cross-border and inter-institutional partnership.

Later in February and March, it is intended to have similar engagements, including further Irish diaspora outreach in the New York and Washington D.C. areas. Next week at the New York Irish Center in Long Island city, AICRI will bring together different stakeholders for a discussion and networking event, Cancer Research Across Borders: US Influence on the Good Friday Agreement. Support for this event has been received from the Consulate General of Ireland in New York and the Ireland America Science Forum, as well as UCD and Queens University Belfast alumni. The Washington visit, taking place in the week leading up to St. Patrick’s Day will include a joint Queen’s University Belfast-National Cancer Institute symposium entitled, Cancer Knows no Borders – Celebrating Tripartite Cooperation to Enhance Cancer Research, at the world-renowned US National Cancer Institute, where both past successes and future activities for cancer research and cancer care on the island of Ireland will be discussed, including an update on AICRI activities and plans.

Queen’s University Belfast is also hosting a major event in mid-April 2023 in relation to the 25th anniversary of the Good Friday Agreement and this will include a special showcase on cancer, Cancer Knows No Borders, with speakers and panellists from the island of Ireland, including AICRI members, and international speakers.

In summary, AICRI has made very significant progress since the original concept was put forward in 2020. Critical foundation stones have now been put in place via funding under the HEA North-South research programme. However, we have only begun our mission. To fully achieve our goals, there is a requirement to attract additional funding to establish a large-scale co-centre for cancer research to fully harness our best skills and expertise across Ireland and Northern Ireland, together with our colleagues in Great Britain. Calls for similar co-centres in the climate and food security areas are now live, with funding to be provided by Science Foundation Ireland, Northern Ireland’s Department of Agriculture, Environment and Rural Affairs and UK Research and Innovation, with co-funding from industry. AICRI investigators have also been very actively involved in seeking and acquiring funding under a range of European Union programmes focused on cancer research, such as the EU Mission on Cancer. Finally, very active interest is being taken by the AICRI team in the potential offered by the PEACEPLUS programme in facilitating cross-border collaborative cancer research.

In closing, we should remember that one in two people on the island of Ireland will be diagnosed with cancer at some point in their lifetime. This could be any one of us, our loved ones or friends. Cancer research is cancer’s enemy. We know that patients treated in research-active hospitals have better outcomes than those who are not. It is critical that we each play a role in helping to secure a better future for our families and society.

Acting Chairman (Senator Niall Blaney)

Thank you. Do other members of the team wish to comment at this stage?

Professor William Gallagher

Perhaps Professor Lawler wants to come in from the Northern Ireland perspective.

Professor Mark Lawler

It is critical that we work together. As I said in the video, cancer knows no borders. The other thing is that we do not want to be competing against each other; we want to be competing against cancer, which is our common enemy. This is a huge opportunity and I am very excited about it. I moved to Belfast in 2014 and have been working with the team there. It has been brilliant to be working right across the island of Ireland. It is no mean achievement to bring together ten different academic institutions, given it is difficult to do that at the best of times. We have found something common that we can work on together. The other thing is that we can be world beaters in this area; we are not just following the crowd and we can be leaders. Bringing the best minds on the island of Ireland together to address one of human health's greatest challenges is something we can deliver on.

Acting Chairman (Senator Niall Blaney)

Thank you for a very exciting presentation. We now go to the members.

Deputy Rose Conway-Walsh

I will keep my comments very brief because there are a lot of experts in the room and we want to hear from them.

Like we did on the previous occasion the delegation was before the committee, we remember Professor Paddy Johnson and the key role he played in the signing of the memorandum of understanding, MOU. Every time we discuss this matter, we will remember and acknowledge the huge role he played. It is wonderful to see how the MOU has evolved, even since the delegation has been here. I have read all of the presentations and everything else. On behalf of the entire population across the island, I thank the institute for the magnificent work it does. Many other disciplines should look at what the institute is doing.

I want to discuss the impact of the more than 1 million cancer diagnoses missed because of Covid. How does the institute plan to address this matter?

Professor William Gallagher

Professor Lawler will comment on the area.

Deputy Rose Conway-Walsh

I want to ask about the affordability of the HPV vaccine, particularly where GPs prescribe it and the patient cannot afford to pay the price of €600. I have raised this issue several times. How important is it, when a clinician recommends that somebody needs to have, and should have, the HPV vaccine, that we make the vaccine affordable?

On the previous occasion we met we talked about the architecture that was needed to bring all of this research together. What does the institute need from us?

Ms Michelle Gildernew

I welcome the delegation. The Department of Agriculture, Environment and Rural Affairs in Northern Ireland has been mentioned. As former Ministers with responsibility for agriculture on the island of Ireland, I and Mary Coughlan, along with Deputy Brendan Smith, made some very significant advancements when we worked together.

Acting Chairman (Senator Niall Blaney)

Ms Gildernew's connectivity is not great. Can it be improved?

Ms Michelle Gildernew

I am in my car so I cannot really. I can turn off my camera so perhaps that might help.

Deputy Rose Conway-Walsh

I suggest that we go to the witnesses, Acting Chairman.

Acting Chairman (Senator Niall Blaney)

Perhaps Ms Gildernew might find better coverage at another location while we hear some answers.

Professor Mark Lawler

I will answer the first question and thank Deputy Conway-Walsh for remembering Professor Johnson. I remember him every day as he was a friend, colleague and mentor. He was my mentor for the past 25 years and I thank the Deputy for mentioning him. We all miss him and we hope this is a legacy we can leave for him.

I will respond to the first question on the impact of Covid on cancer services and cancer patients. I lead a European initiative that looks at the impact, which is where that figure of 1 million cancer cases came from. We conducted a very detailed analysis right across Europe, which showed that 100 million screening tests were not performed, so 1 million cancer diagnoses may have been missed. To be perfectly honest, that is a really scary figure. One of the things we need to do is look at ways in which we can increase the effort to reduce the backlog, which is what we have advocated for both in the European Cancer Organisation and within AICRI in terms of the work we have done. This research will lead to impact and now it is quoted, for example, by Stella Kyriakides, who is the European Commissioner for Health and Food Safety. These data have also been quoted by the European Commission President, Ursula von der Leyen.

We believe research is the way to address this issue. I mean research into ways we can diagnose earlier because that is one the problems that we face now. We face a problem because the Covid pandemic and national lockdowns have caused the disease to progress to a later stage. To address that we need to look at ways in which we can quickly reduce the backlog, which will not happen overnight. This is potentially a cancer crisis if we do not do something about the backlog now, which we have articulated. In fact, we produced our report last month, which is a study that was commissioned by The Lancet Oncology. One of our key asks is that we need to have real-time data that allow us to see what the problem is and then to use that intelligence to address the problem.

I thank the Deputy for her question. It is very much in the area where we want to focus on something that can really make a difference to patients. The work has been rewarded with the European Communiqué award for the use of data in society. The data are hot off the presses, topical and what we need to do.

Professor William Gallagher

On HPV vaccination, I do not think we have the specific expertise in this group to address the question. More generally, and again Professor Lawler would have a lot of experience at a European level in terms of equity of access to treatments and diagnostics, it is a big research question. There are significant disparities regionally across Europe and obviously there may be regional disparities within countries. In Ireland, within the national cancer control programme, there is a big focus on evening out the disparity or potential disparity that may exist.

Professor Mark Lawler

I can comment on screening. Obviously cervical cancer is one of the three cancers we should routinely screen for now. Unfortunately, there was a European Council declaration in 2003 advising that we want to get things right in terms of cervical cancer, bowel cancer and breast cancer but 20 years later we still have not got it right. Thankfully, there has been a renewed press to look at ways in which we can drive screening.

National governments around Europe pushed back against screening, which was very disappointing because we want to look at, for example, lung cancer screening and, potentially, prostate cancer screening and gastric cancer screening. Thankfully, lung cancer screening will happen and certainly there has been some very good work done in Ireland on that. Early detection is critical and forms the bedrock of one of our research programmes.

Everybody who requires the HPV vaccine should get it and let us remember it is not just a vaccination for girls. There has to be vaccination for boys as well because there are a number of cancers caused by HPV such oropharyngeal cancer, which in certain parts of the world is now more frequent than cervical cancer. There is a European initiative now to look at ridding the world of cervical cancer through vaccination so we need to be doing that as well.

Ms Eibhlín Mulroe

At this stage, and I represent the cancer trials group, which is made up of Professor Lowery and all of the oncologists in this country, the HPV vaccine will eradicate cervical cancer and cancers that affect young men. Therefore, it does not make sense what was said about the cost. Anyone who works in cancer research looks for ways to end this particular cancer and the HPV vaccine is one of the saviours. The Deputy asked an important question. I am too old to have benefited from the vaccine but it is important to recognise there will be generations of young people for whom, it is hoped, cervical cancer and related cancers will become less of an issue.

Deputy Conway-Walsh mentioned infrastructure and asked what does AICRI want. We have great medical oncologists here in Ireland but we do not have enough staff. Due to the 1 million people with missed diagnoses, which Professor Lawler talked about, we will have a tsunami of late-stage cancer cases coming into clinics. Unfortunately, after Covid, we do not have as many staff as we would like working in cancer research in our hospitals. We have more medical oncologists and radiation oncologists who are extremely well trained. As all politicians will probably have heard already, there is a crisis in terms of attracting nurses and some of the skill sets around cancer trials such as pharmacists and data managers.

That is the infrastructure for trials. We want a person with cancer who is walking into a clinic to be asked whether he or she wants to go on a clinical trial, when we have one available. To do that, there needs to be infrastructure around it. We are currently involved in a cross-Border survey with Belfast City Hospital and all the hospitals in the country. We are asking staff what the issues are. In addition to people, a new clinical trials regulation is coming and so on, but we also have issues around data protection, which I will not use this meeting to talk about. It might be useful to hear from Professor Lowery on some of those points.

Before I leave this issue, as someone from County Monaghan and the Border, I pay special tribute to the policeman who was shot last night in Omagh. It reminds us all of why we are here. This committee is here to find ways to work together. In terms of cancer and the people around this table, we all come from different backgrounds and perspectives across the Border. It is very powerful to remember that today. I pay tribute to the family of that policeman. I am thinking of all of them today.

Professor Maeve Lowery

On behalf of all of us, we agree with Ms Mulroe.

The HPV vaccine is a brilliant example of how research informs clinical care and reduces cancer burden worldwide. At some point, somebody figured out that the HPV causes cervical cancer. It sounds simple but it was not a simple thing to discover. It was due to laboratory-based research. It was only figured out because somebody was able to take samples of a patient's cancer, interrogate them in a laboratory, do the correct laboratory techniques to identify the cause, develop a vaccine, and bring it back in a safe manner through clinical trials in order to roll that vaccine out to patients worldwide. A whole lot of research went into that, including fundamental research, translational research - bridging the lab and the clinic - and clinical research, which are the trials that brought that vaccine safely to patients. It is a perfect example of how research can inform clinical care and have a major impact worldwide on cancer burden. Everybody should have that. I cannot comment on the costings of it, but it is a prime example of how research can improve cancer outcomes.

Access to drugs and equity of access were mentioned. I second Ms Mulroe's points around that. There is an issue worldwide around equity of access for patients to innovative new cancer drugs. There is a big time-lag between a new treatment being developed in the laboratory and actually reaching the point where it can benefit a patient. That is where good clinical research, and proper infrastructure and clinical trials infrastructure, can speed up that process an awful lot. No more than anything else, clinical trials and an access basis to drugs are about processes, infrastructure and the right people in the right places. Doing that together on an all-island basis will help us to provide equal access for patients to innovative new drugs as best we can.

There are very good international examples of that, which we will pick up later and perhaps now. Many of our European colleagues have come together to develop innovative new ways to bring new cancer treatments to patients. Typically, in clinical trials, we think about one disease type and one drug. That is the old-fashioned way of doing clinical trials. It works very well if there is a particular common cancer type and a particular drug available that might help. However, if there is a rare cancer type or a rare subtype of a common cancer, it is much harder, especially on a relatively small island, to identify a clinical trial that might help. To solve that, we need patients being able to mobilise to access clinical trials across the Border. That is obvious and clear. We have been saying it for a long time but it is very important.

The second element in research is about developing a cross-Border infrastructure for larger clinical trials through a newer, more modern, futuristic-looking model of clinical trials, whereby we actually identify novel treatments and provide them to patients on an individual basis, but also learn and record that interaction to learn why that might benefit a patient and when it does and does not work. That is something we have discussed. We submitted an expression of interest under the PEACE PLUS programme regarding developing such an infrastructure. It has been done in Finland, Norway, Denmark and the Netherlands, with a lot of success. Many EU collaborative bodies are now coming together to co-develop these initiatives. It is about providing the right drug to the right patient at the right time.

Ms Eibhlín Mulroe

It would be fantastic if we got support for that. We will run that study, which is an interventional trial, on an all-island basis.

Deputy Rose Conway-Walsh

Excellent. Hopefully, the message will go out.

Ms Eibhlín Mulroe

Hopefully.

Acting Chairman (Senator Niall Blaney)

Is Ms Gildernew still there?

Ms Michelle Gildernew

Yes. I am not sure how much time is left in this slot. Does the Chair want me to proceed?

Acting Chairman (Senator Niall Blaney)

We might take Ms Gildernew's question later on.

Ms Michelle Gildernew

Okay, no problem. That is grand.

Professor William Gallagher

On the question about what is required next, we have done well under funding from the North-South research programme. That is great. One third of the funding went to North-South cancer research programmes. We did not expect it but we were delighted because, in some sense, we worked hard to come up, collaborate and try to interact. That stood us in good stead. For us to get to the level where we can have a major impact, certain things are required. One aspect is a big programme that brings everybody together. This is where I will mention a model such as a co-centre. It could be a different type of model but, for example, there are pre-existing Science Foundation Ireland, SFI, centres that are allied towards industry, in many cases. An emerging concept is that of a co-centre, where collaboration is encouraged North and South and east-west. Such co-centres are now emerging in the areas of climate and food security. We would like to be able to bid for a programme in our space. Part of the requirement is to make sure there is suitable funding from each of the three jurisdictions. There should be a way of discussing and being able to facilitate that with some of the Deputy's colleagues because, ultimately, without that movement, there will not be a call in that space.

Professor Mark Lawler

We can only apply for something that is a call. We believe we would be very competitive in that space but we cannot apply for something that is not there.

Deputy Rose Conway-Walsh

Maybe in answering some of the other questions, the AICRI might shape the committee more on what a co-centre would look like.

Acting Chairman (Senator Niall Blaney)

Time is up on this slot. We will come back to a Sinn Féin slot later on. We will now move to the Fianna Fáil slot.

Deputy Brendan Smith

Like the Acting Chair and the other speakers, I welcome our witnesses. It is great to hear such an upbeat message with regard to a very challenging disease. The figures that were quoted are heartbreaking. I recently lost a brother to cancer. He was not the first family member to die from it, unfortunately. I am very conscious of the ravages inflicted on so many families and individuals through cancer.

I echo Ms Mulroe's words regarding the despicable shooting in Omagh last night. I spoke in the House on that particular issue today. We are talking today about all-Ireland institutions and what can be achieved for the good of all our island by good working together. We have a handful of terrorist criminals wreaking havoc on individuals, which is deplorable. The quicker they are weeded out of society, the better, for the benefit of everybody. The overwhelming majority of people do not want any violence in our midst on any part of our island.

The message the AICRI put forward is very positive as regards what can be achieved. From the committee's perspective, it is welcome that the representatives mentioned that the meeting they had with us in October 2021 was a major boost to their work. We do not have an executive role. We meet groups and often wonder whether anyone listens to us, but we help to bring the focus of the Government on particular subjects. That is the value of committees, when we have the opportunity to engage with people outside the Oireachtas and politics. The witnesses can inform us of the avenues we can pursue with the Government, relevant Departments and statutory agencies with regard to supporting the AICRI's funding request. I very much welcome the tripartite work with regard to Ireland, Britain and the US. It is heartening to see who the AICRI will meet as part of its programme for St. Patrick's week.

Ms Mulroe or her colleague might respond regarding a trial centre. Are they thinking of a piece of infrastructure? I presume that is attached to a hospital.

Ms Eibhlín Mulroe

Yes. Professor Lowery can talk to this as well because she leads one of these centres. They build on the Health Research Board's investment in clinical trial centres in the country. Each hospital is affiliated to an academic institution. That is funded by the Department of Health through the Health Research Board. It is not enough. Within that funding, there is some support from the local hospital in addition to the university. We need more people working in that infrastructure to do more work on trials. In order to run clinical trials, if a patient comes to a clinic and needs to go on a clinical trial, someone has to organise the protocols, sit the patient down and talk about his or her consent, which usually involves the nurse. When a patient is on a trial, someone is constantly monitoring what is happening to that patient.

That is why it is a better standard of care. It is because everything is being watched with the patient on the trial. That is usually between your pharmacist, your data manager and your clinician. All these are the people who support the trial and then someone has to write all those documents and safety information leaflets. Everything is monitored on data systems. There is a biometrics team that lives within the hospital but also in the sponsors office. That is what we do in Cancer Trials Ireland. What we really need from the clinical trials perspective is people; more people in our hospitals who are working on trials so that every patient is asked the question "are you interested in a clinical trial?" We cannot ask that question because we do not have enough clinical trials.

Professor Maeve Lowery

What that would facilitate is that we can properly integrate research into clinical care of every patient. It should not be bolted on or a side thing. It should be fully integrated into every aspect of the whole clinical pathway of patient care both in terms of screening for cancer, its diagnosis and treatment, and then helping patients live well beyond their cancer diagnosis. The only way we can integrate research at every stage of that process is by having adequately staffed units for research, translational and clinical research, mainly clinical trial research in particular, embedded in our public hospital system.

Ms Eibhlín Mulroe

Mr. McCormick can comment on that as our patient representative here today. He might want to talk about the value of having clinical trial access from a patient perspective.

Mr. Aidan McCormick

This is my first time here so I am slightly overawed. Maybe I should say who I am first. My name is Aidan McCormick and I am a patient advocate or representative. I am a northerner, as the committee can probably tell by my accent.

Deputy Brendan Smith

There are a few of us around.

Mr. Aidan McCormick

As I look down the list, I can see Claire Hanna, Mickey Brady, Francie Molloy and Michelle Gildernew so I can identify with these folk. It is a big opportunity for me. I have just come from the Irish Association of Cancer Research conference in Athlone. It was inspiring because many of the new researchers coming along, PhDs etc., are there and the enthusiasm that these young people have for this role is outstanding. I do not know how the funding follows them for the work they are doing but that is where our future lies. It is very inspiring and it needs support.

Professionally I was a science teacher in an 11 to 14 years post-primary school in County Tyrone. Michelle Gildernew and Francie Molloy would understand. It was Holy Trinity College. I spent half my working career there and am very proud. Tyrone actually educated me as opposed to the other way around. They are such lovely people and lovely children and I was very proud to be there.

I then moved to the education authority in Northern Ireland. I was an education advisor mainly in the 14 to 19 years level working with the Government, the Department's curriculum authority etc., school governors and management. I was an assessor for the appointment of principals and vice principals in the controlled sector too. So I was used to working with civil servants. This is very important because people should realise that I had a life before I had cancer.

I am a cancer patient. I was also a professional but my cancer seems to overshadow a lot of that. There are a lot of people like me who find that. I am now a retired 67 year old with type 2 diabetes, on insulin, and a blood-cancer patient. It is non-Hodgkin's lymphoma. There is no cure for my particular type but it can be managed. That is a key sentence from any consultant to you and something that you have to take on board and deal with.

That was 12 years ago. I had two children and my wife and they had to take that on board and work with it. So now I am a pensioner with an all-Ireland train and bus pass, living with cancer. I am not a cancer survivor, which is a word that is used often, I am living with it, and that is important to me. I am a regular service user of the medical facilities, mainly haematology, oncology, dermatology - all the "ologies" - and I am there. That is very important to me especially at this time when the availability of finance is an issue. That is important.

I am really on my own personal cancer journey but I am certainly not alone. I am a governor of the Southern Regional College and I have met Mickey Brady and he had been very supportive of our college, which has to be recognised. Most politicians are supportive. I am chair of the education committee and obviously I have a passion for it. The new developments which impact on research is the post-18 years higher-level apprenticeships, HLA, which are in the North. We are delivering courses like the universities in areas such as science. Those are the young people who are coming to the science and medical service end, be it from research or at technical level. That is very important to realise. They are looking for jobs North and South.

One example is a woman I met at the conference last night. This young person started off working life as a bus driver, she re-educated and came into the HLA programme. She is now linked with the Southern Regional College where she received her qualification. She is now working with Randox. That opened up a new world to her but she came through a slightly non-traditional route. That is the kind of development that will impact on the research and medical community as time goes on.

My main reason for being here is that I am the chair of the Northern Ireland Cancer Research Consumer Forum. It is a lovely body of about 30 people who assist researchers coming from the likes of the clinical trials network in the North. We help review its applications and put things in to plain English which has to be done at times. We offer our expertise and understanding. The key thing is we have lived experience which is unique and sometimes underestimated. I know I am here today and I listened to everything that has been said but at the end of the day it is my life everyone is talking about. If it visits you, your attitude will change. I do not wish it to visit anyone but that is a big thing and it is very important.

We can do things like advising on methods and so on, but we are an integral part of the work they do. One of our members, Tim Kerr, worked with the Experimental Cancer Medicine Centre in Belfast, around the city hospital, in attracting £7.5 million for its future work. Another person, who the northern people will recognise, is Liz Weir. She is famous in the story-telling world. She has recently had two media opportunities, on radio and television, and also two newspaper articles, reflecting on her cancer condition, the health service and the work of the forum.

That brought me to the All-Island Cancer Research Institute, AICRI. Sometimes I feel that I am standing on the shoulders of giants and I am because the work that I have been exposed to working with AICRI and others is absolutely amazing. I am a science teacher so I know where all the bits and bobs go but it is so important. The patient advocate part is very important and we bring a bit of reality to it. I suppose where they work in a world of black and white, we add colour to it. That is one way of describing it.

I am a great believer in the North-South, east-west and international approach. I think that is where the future lies as a non-specialist. Of course, I would like to see all these things funded.

So basically, that is me. I am a cancer patient on a journey, giving back while I can. That is the important bit. It does not answer the question but does it help?

Deputy Brendan Smith

The message we have been given today is to a limited audience. In society, at times there is despondency. People ask where would cancer end and that is often the message. I acknowledge that is unscientific commentary and narrative. Despite the challenges, it would be good if the message could be got out to the wider public about the significant work that is going on, the opportunities that are there, particularly the North-South ones, and that our clinicians, researchers and scientists are up there with the best of the world. Moreover, we are collaborating, as a small country, with the best institutes in the United States and throughout Europe.

I will finish on one or two other points. Bringing together ten academic institutions is something we should never underestimate. Much of society lives in silos and it is important that collaboration happens, particularly on a North-South and east-west basis.

Deputy Conway-Walsh referred earlier to the tsunami of incidents. We might be the first person to be called outside a family when, say, a partner will call us to say that her husband, partner or whatever unfortunately has been diagnosed with cancer and to ask what to do about trying to get medical assistance and a medical card, and if the person is off work, what should the family do. They often confide in us as public representatives before they alert their own family to the diagnosis. In recent times, it has been depressing, on some days in our work, that so many people have contacted us where a family member has, unfortunately, got bad news or whatever.

We also appear to know - this also is unscientific - of more people who have been diagnosed with cancer and whose life expectancy is a lot shorter than would have been the case a few years ago. Presumably, that is due to late diagnoses and Covid has had an effect.

There was mention, in regard to the trials, that more people are needed. If we were in utopia and if our guests could have all the people who are needed to do the necessary research, do we have those people or are we training them and putting them through college to gain the skills and knowledge they need to work in those particular centres? Are we doing that at present?

The panel's work is highly commendable.

Acting Chairman (Senator Niall Blaney)

I thank Deputy Smith. Unfortunately the time has elapsed in that slot too. We will move on to the next section. The panel might consider those answers as we move along as before.

The next slot is for the SDLP and Alliance.

Ms Claire Hanna

I thank the Chair and those presenting. It is fascinating. I say that as a somebody with very little background in this and not with a science brain. I am interested to hear it.

I echo the comments about the late Paddy Johnston. He was not someone I worked much with directly but he was kind personally to my mum when she was experiencing cancer. She had an aggressive genetic issue. She and seven of her eight siblings were experiencing cancer around the same time. He was helpful in explaining some of the research and stuff around it. He made Belfast go from one of the worst place to be a cancer patient to one of the best places at the time in terms of outcomes. Clearly, his leadership is missed but he has left a legacy there.

We had a briefing, through the Northern Ireland Affairs Committee, in the past year about some of the potential. The slant of the presentation was about the North as a research hub and talking about some of the positive conditions around the population size and demography and its suitability and maybe some of the ecosystem around between life sciences and commercial research and development, as well as academics and the potential. However, I have read more recently that in the North we have the lowest spend on research and development. Does this partnership help to build up and maximise that capacity?

I echo Deputy Brendan Smith's questions, which were along the lines of those I was going to ask about the public liaison part of it and the communication. In this frightening world where it seems like there is a new existential threat to worry about every day, whether health, geopolitical or whatever, sometimes it can be assuring, particularly as cancer rates rise, that science is winning lots of these battles and is making big breakthroughs and improving diagnosis and care. What opportunities do our guests get to sing about the successes?

I wanted to ask a technical question as well about whether there are discrepancies, North and South, in terms of trials people can get access to. Do we have scenarios where people on one side of the Border or other may be able to access treatment but cannot because of the health system they are under? I had encountered cases in the past where services, not cancer but transplant guidances, are different North and South. I am sure there are good clinical reasons for the guidance that the respective health Departments issue but it can be demoralising for people.

I would also ask about that issue that Deputy Brendan Smith touched on around workforce planning. If I am hearing the panel correctly, their main infrastructure is people in terms of clinicians. Are we adequately training and is the qualifications regime etc. sufficient for people to move fairly seamlessly between institutions, North and South?

Apologies, there is a pile of questions. They may decide who would like to take which. I thank the panel again for the presentation.

Professor Mark Lawler

I will start. It is good to see Ms Hanna again.

Ms Hanna's question in relation to an innovation hub is a brilliant one. Yesterday, as part of the Northern Ireland Science Festival, I spoke specifically on that topic and said how Northern Ireland will be one of the great health hubs, particularly in relation to digital health. We already have people who are showing that they are they best in the world in this. It is a huge opportunity, but it is an opportunity that would be enhanced even further by collaborating with our colleagues down South. That is a win-win situation. We are very good in relation to small and medium-sized enterprises. In the South, it is more bigger companies. However, looking at working together and with the universities driving that research, it is really important.

To answer a second question and also to go to those of Deputy Brendan Smith, I am sorry about the loss of the Deputy's brother and I ask him to accept my sympathies. What is really important to realise is that research is no longer a luxury. In the past, people talked about research as being tagged onto this as something done by people who sit in ivory towers. That is no longer the case. Research is now an integral part of 21st century cancer care. The committee will have heard what Professor Lowery said. We would not have a HPV vaccine unless we had research to do that. The situation with cancer research is similar. We have stated in this report that if you do not have research, you do not have good clinical care. It is important to recognise that point.

I will now hand over to Professor Gallagher to cover some of the aspects in relation to publicising the research that Ms Hanna and Deputy Brendan Smith asked about.

Professor William Gallagher

That is what the model of a co-centre or centre model facilitates. It allows for big activity around communications. We are doing this on a shoestring at present. We have done a reasonable job but we could do more. I agree we cannot just sit in our ivory towers and work away. We have to communicate what we are doing outside to the community.

On the plus side, I would probably counter that point that maybe there are some people who are presenting a bit more at a later stage and that certainly could be due to the impact of Covid, based on the data produced by Professor Lawler and his colleagues. We know, for example, we have had a dramatic increase in the number of individuals who have gone through a cancer experience and come out the other side. The number of people on the island who have come through their cancer experience and come out the other side would fill Croke Park at least three times. Many of those individuals are left with the aftereffects of the treatment, maybe anxiety or physical or psychological effects, and that, in itself, is a research question. Unfortunately, we do not have a survivorship research centre. It is a large-scale problem. We have some good smaller survivorship projects but there is not a big programme. The Irish Cancer Society had to put out a call for a big survivorship cancer research centre. Unfortunately, due to the reduction in funding in the charity sector, that does not seem to be coming to pass. There is a bit of a deficit there.

There are good models of industry partnerships. For example, I am deputy director of a programme called Precision Oncology Ireland. It is a strategic partnership programme funded by Science Foundation Ireland. It is funded in part by industry partners and charities, and the rest of the funding comes from SFI. There are seven companies involved, including small and indigenous companies from the whole island, Northern Ireland and the Republic of Ireland, and big pharmaceutical companies. They are contributing cash because they see value. It is about peer-to-peer interaction. Interestingly, we are hoping to do a body of work with InterTradeIreland specifically to examine the innovation ecosystem in this space in Ireland. We know there are companies, both small and large, in the area but we have not done a comprehensive assessment of the value for AICRI to help push that forward and scale it up to bring these companies beyond a certain level. They will need a workforce. We have spoken about the need for a workforce in clinics. These biotech and pharmaceutical companies we want to grow to a certain scale also need a workforce. That is a big focus of what we are doing and, as I mentioned, we are hoping to do a comprehensive analysis with InterTradeIreland and use that as part of our argument.

I will return to the communications piece and give the committee an idea of what we are doing on a shoestring budget. It is critical that we get out into the community. We ran a programme called Science on Screen. We worked with the Galway Film Festival to do a 25-minute film that we hope to show on terrestrial television. The film tells the story of two individuals with a lived experience of breast cancer and prostate cancer, and three researchers who work in the area. The story interweaves between them.

A couple of weeks ago, I organised an event called Choirs for Cancer. It is an odd concept, in a sense. Over the past four years, we have brought together choirs comprising cancer support groups. For example, Cancer Focus Northern Ireland has a choir mainly comprising cancer patients or people who have been affected by cancer. They use music as a way of coming together. We invite those choirs to sing together on one day. We ran an event that paired individual choir members with well-known celebrities who have had some kind of cancer experience themselves or who have a family member with a cancer experience. It was a fantastic event. There were 700 people in the O'Reilly Hall in UCD. We do those kinds of things.

One of the challenges we face is reaching out to marginalised communities. We ask how we can get the message out. We have participated in a programme called Invisible Spectrum, through which we have interacted with key leaders and stakeholders in the Muslim community in Dublin and its periphery. We have talked about issues that may affect them. We know from data in the UK that marginalised communities can have poorer outcomes because of a lack of access to, and knowledge about, healthcare. We do not have that information in respect of Ireland. There was a recent study by National Cancer Registry Ireland about socioeconomic differences but none of that information was parsed to examine different minority groups in Ireland. Communication is critical. How do we do that, going forward? That is the reason we are here. We want a big programme that will allow people to specialise in that issue. I am not a specialist communicator but we do it anyway within the means we have. For us to do it properly, we need a team. It requires a degree of professionalisation.

Ms Eibhlín Mulroe

In respect of public awareness, we in Cancer Trials Ireland are the same. With our clinicians, we do our best to get out to the media once a year for International Clinical Trials Day. Our patients who have been on trials kindly share their stories and experiences of being involved in clinical trials. That helps to demystify the area. We have done market research among the Irish public over the years and they understand clinical trials better after the pandemic. There is a public appetite in that regard. As I said earlier, they are asking for clinical trials. The awareness around the issues that face us when we are trying to get to work and to do more is where we may have a gap. We are leaning more on the Irish Cancer Society in this space. There are 55 staff working in Cancer Trials Ireland and most of them are scientists. We are leaning on the support of our friends in a charity to help us advocate and talk about the value of clinical trials.

I was taken by what Deputy Brendan Smith said. I am sorry about his brother. I know Ms Hanna's mum went through this journey. We are getting calls from members of the public who have cancer and do not know what to do. There is help available from the not-for-profit sector, through organisations such as the Irish Cancer Society and its equivalent in the North. There are patient advocates, such as Mr. McCormick, who are available to talk, peer to peer. There are also nurses available. Advice is available outside clinics, which is helpful, especially around clinical trials.

Ms Hanna asked about discrepancies, and I will pick up on that point. Clinical trials are exempt from the Northern Ireland protocol. They are not included. People cannot travel across the Border to access clinical trials unless they pay for it themselves. People are seeking support and sometimes hospitals will support them or a special case will be made-----

Ms Claire Hanna

May I clarify one point? As the committee can imagine, I am attuned to matters to do with the protocol. Were people able to travel across the Border for clinical trials before Brexit? Have conditions now deteriorated? Have we made it harder for people to participate?

Ms Eibhlín Mulroe

That is the case. Before Brexit, the cross-border directive allowed people to travel across the Border for help. At the moment, people can travel from the North to the South for treatment if they can pay for it. It is easier to move from South to North because the HSE will cover those costs. It is more difficult to move from North to South. There are patients who are willing to travel. People do not only wish to travel to Belfast. Some might wish to travel to London or patients from London may wish to come to the Republic of Ireland. There is a discrepancy there, for sure. We open trials on both sides of the Border, in the UK and in the rest of Europe. We do not see the borders. However, it becomes tricky. Some of these trials are very niche and sometimes there is no other option for a patient but to travel to a site. I wanted to pick up on that point.

Deputy Brendan Smith asked if we need more people. There are people here. We have heard stories about doctors being trained in Ireland and going elsewhere. They are here, and we train them. It is the same with nurses. The problem relates to career pathways in clinical research for nurses. Very often, they are not on the same career pathway. The same is not true in Belfast. There is a better set-up in Belfast for career pathways for clinical research nurses. That is something we have to challenge. We have clinicians; we just need to bring them back.

Professor Maeve Lowery

We know there is a staffing crisis in healthcare at the moment. It is very hard to recruit enough nurses and doctors, especially junior doctors, in our public hospital system. It is becoming a less attractive place to work across the board. That was true before the pandemic and it is even more the case now. It is becoming difficult. Research can help. The way we solve that problem is by making those jobs more attractive and integrating research into the careers of nurses and doctors. Providing adequate time to pursue research makes a job more enriching and makes people happier and more fulfilled in their jobs. People do not do these jobs for the money. Making the job more attractive would help with staffing, which is a major crisis at the moment.

Deputy Patrick Costello

I was struck by the reference in Professor Gallagher's opening statement to the expected doubling of cancer incidence among our citizens in the next two decades. What is driving that? I assume the professor is talking about an increase in instances of cancer and not just improved detection and the fact that we are catching more cancers. Part of me is wondering what we should be doing. I am thinking of environmental impacts, social determinants of health, prevention and all those kinds of public policy things. Our guests are doing their best to use research to tackle cancer, and research is the enemy of cancer, but it seems as if some things we are not addressing are the friends of cancer. I appreciate that some of this may reflect public policy that is outside the direct remit of our guests. However, I was struck by that point.

I would love some more information on that.

I am also curious about the HPV vaccine and the general take-up and roll-out of it. There has been a growth in conspiracy and concern around vaccines and a turn away from them despite their life-saving efficacy. Will the witnesses speak to that? I appreciate that may be more about delivery and on a slightly more micro level than they are at.

I am worried that I have asked one question that is too macro and one that is too micro. I have one question that should be just right. The witness spoke quite disturbingly about the impact of Brexit and how it just seems to be missing from the thinking around the protocol. One of the things I have been thinking about is data sharing. Data sharing is a key component of the research. While the UK has an adequacy decision from the European Union in terms of general data protection regulation, GDPR, and data sharing, this comes with many provisos and reviews. We have seen the British Government talk about revising and moving away from the European standard, which very quickly could lead to a situation where the adequacy decision is revoked and data sharing becomes difficult. Are the witnesses concerned about or prepared for that? Will they speak to that issue?

Professor Mark Lawler

On the Deputy's very good question as to why we are seeing this increase, it is partially because cancer is a disease of older people. Our older population will increase exponentially over the next 20 to 30 years. That is part of the thing. As the Deputy said, it is really important we focus on prevention, lifestyle, and on social determinants of health. That is an area we have highlighted as needing to be looked at. Professor Gallagher highlighted, for example, that we have 210,000 people living with cancer on the island of Ireland. We are not doing enough for them in terms of survivorship research to actually see what the challenges they face. That is the reason we work with Mr. McCormick very closely. We want to find out what the challenges are and how we then address them. Cancer is unfortunately a disease of older people so it is going to increase anyway, but it is really important we are looking at ways in which we can stop it increasing more than it should increase. That is really important. At the moment, what percentage does the Deputy think is spent on cancer prevention research in Europe? Will the Deputy make an educated guess?

Deputy Patrick Costello

Not enough.

Professor Mark Lawler

It is 4%. That is all we are spending and that is one of the other things that came out of our work. A total of 4% of cancer research expenditure is spent on cancer prevention. That is just not good enough, to be perfectly frank.

Deputy Patrick Costello

I have a quick follow-up question. If cancer is a disease of older people and our population is ageing, this is one of the reasons we are expecting to see the incidence increase. However, are the witnesses predicting a rise beyond what would be expected arising from the ageing population? That would indicate we are going backwards in terms of prevention and on the public health side of it.

Professor Mark Lawler

That is the impact of Covid-19. The work we have done has shown that for some cancers, for example, colorectal cancers, we may have set back the survival advantage by almost a decade.

Deputy Patrick Costello

That is the survival advantage. What Professor Lawler is saying is that those colorectal cancers would have occurred anyway. They might have just been picked up earlier and those patients might have survived. It seems from what he is saying here that there will be more colorectal cancer overall.

Professor Mark Lawler

These cancers would be found at a later and more aggressive stage, and it is similar with prostate cancer, for example, but colorectal was the cancer we saw had the worst outcome based on the impact of the pandemic.

Deputy Patrick Costello

Would it be right to say we are moving backwards in terms of prevention and public health?

Professor Mark Lawler

I would not go that far.

Deputy Patrick Costello

Okay. Certainly, there is greater work that needs to be done in terms of research and policy given this increasing incidence. It is an incidence that is increasing beyond what would be expected simply because of an ageing population.

Professor Maeve Lowery

There are two points to this. There are the obvious preventable causes of cancer we know such as obesity and smoking, but they are not easy ones to fix. That is where research and an integrated, joined-up approach to the problem can help impact that. It is complex because no other country has really manage to solve it either. It is difficult.

There are certain cancers where we are seeing an increase in incidence outside of an increase in the known risk factors. Colon cancer is a good example because, across the western world, we have seen a really dramatic increase in the incidence of colon cancer in patients under the age of 50. That is unexplained as of yet, and again it is a major area of research where research can help us answers those questions. We are seeing more incidence of colon cancer in particular, gastric cancers and pancreatic cancers in patients under the age of 50. It does not seem to be explained by an increase in either hereditary cancer diagnoses - something inherited from a gene predisposition - or by obesity or smoking. All these young patients do not have the typical risk-factors. We do not really know why that is, and again, it is something where research can help identify the cause and develop the correct solutions to it. There are two parts to it. There are the obvious ones, which seem simple to fix but are not, and then there is the unknown quantity, which includes Covid-19 but even beyond that.

Professor William Gallagher

I can give the Deputy a practical example. There is a very nice programme which has just been funded by Breakthrough Cancer Research, a charity that devotes pretty much all of its money to cancer research. It is mainly based in Cork but now funds all-island projects and has recently provided funding for a North-South collaboration in the area of oesophageal cancer and researching before a patient gets this cancer. One of the precursor syndromes is Barrett's oesophagus acid reflux and a percentage of those patients may go on to get oesophageal cancer. There is a pre-existing Barrett's registry led by Professor John Reynolds out of St. James's Hospital and a similar one in Northern Ireland. Leading registries and researchers are aligning, both North and South, on this programme. It is led by Professor Jacintha O'Sullivan and Professor Juliette Hussey in Trinity College Dublin and then Professor Helen Coleman in Queen's University Belfast. It is a great model. It is trying to identify at-risk individuals before they get cancer and look at impactive exercise-based interventions to mediate cases. We are talking about drugs and about other interventions that can be brought in and have an impact to reduce progression events. There are also cases of individuals who are potentially at risk in terms of inherited forms of certain types of cancer which it may be possible to modulate by using exercise-based interventions. I refer to the work of Professor David Gallagher, who works on the medical side in the area of genetics in Ireland.

Professor Mark Lawler

That is a very good question on data sharing. One of the things we have been looking at is how we do this most effectively, particularly between the North and the South, because there will be potential challenges there. One of the things that is very important in this regard is the European Health Data Space. This is a new initiative that is just starting at European level which is looking at ways in which we can work together in that space, what the key challenges we face are, and ways in which we can do that while still maintaining the appropriate level of checks to make sure the data that is being shared is of appropriate standard and there are no data breaks or anything like that. How we do this best is something we have considered a lot. Yes, there are potential challenges in some of the discussions at the moment of looking at ways in which that may change from the current situation. It is something we are keeping an eye on and looking at ways in which to do that.

We are also looking at pilot studies, for example, ways in which we can work together between the UK and Ireland on something called DATA-CAN, which is the UK's health data research hub for cancer, and at ways we can work with the North of Ireland, which we are already doing, but also with the South. St. James's Hospital is one of the target sites for that. We are focusing on that because it is something that is very powerful, that has to be done in an appropriate way and that has to involve patients. We involve patient advocates from the very start of the programme and they are involved in looking at the different approaches we use and making sure that they are acceptable to patients and informed by patient opinion.

Ms Eibhlín Mulroe

On that point, that is a great question on data protection. It is extremely important in cancer trials. We run cross-Border cancer trials.

One fills out a data protection impact assessment in respect of every trial one does and every site one visits in every country. If the UK changes the situation it is in now, that will have a dramatic effect on our ability to run trials. We are an Irish not-for-profit academic group that sponsors trials in Europe. If the UK changes its position, that will make things hard for us. It will add to the administrative burden and will make it generally more difficult to run global studies when one is dealing with another iteration of data protection, particularly on the island, when we are trying to find ways to harmonise that. It is like what I spoke about earlier with regard to clinical trials. There are a lot of negotiations going on about this. It is really important that we trying to keep as close as possible to GDPR, and let us hope that we all have the same interpretation of it. That is another issue happening in Irish hospitals. I will not go into that today because it is not wholly relevant. The interpretation of GDPR can always cause issues for us in terms of opening our trials, depending on which particular governance institution one is talking to. I am happy to talk about it, but that is more than two minutes.

Deputy Patrick Costello

Could Ms Mulroe come back to me after the meeting?

Professor Mark Lawler

One of the things I meant to say is that, as Professor Gallagher mentioned, we have a joint programme, the eHealth Hub for Cancer, under the North-South initiative between the University of Limerick and Queen's University Belfast. That is bringing together cancer centres across the island of Ireland and looking at the ways we can most effectively use data to drive research innovation in that space. I meant to say that, because I think it is really important.

Professor William Gallagher

More generally, I would like to come back to the question on vaccination and misinformation. It is a particular problem in the cancer arena. People come up with ostensibly wacky ideas and cures. These are neither cures nor robust; they are not evidence based. The challenge is how one deals with that. What is a trusted source of information and how does the public access it? Again, whatever information one wants can be found on the Internet. AICRI and the Irish Cancer Society do this comprehensively. What are trusted sources of evidence-based information? That is where communications are also important. The last time I was here we spoke about vaccines. The original Covid RNA vaccine came from cancer research work. That was the origin of it. There is now a resurgence of interest in using that type of technology for therapeutic purposes in cancer, which would be a game changer. There is a crossover between technologies and diseases. Part of is allowing that to happen and providing that environment. The word "ecosystem" was mentioned. That is what AICRI is about. It is about creating a healthy ecosystem that allows innovation to happen, but also to be delivered.

Deputy Patrick Costello

I am out of time. I have more questions about that ecosystem. I will come back to the matter.

Mr. Francie Molloy

I thank the witnesses for their presentation. It is very enlightening in the context of all the work that is going on. It is important that this work gets done in different ways. One of the points that came up related to cancer research and one of the charities and funding bodies that, over the years, has been collecting and trying to support cancer research. How much effect does that have? How much information can people get in order that they might discover the benefits of that research and how it is bringing about new treatments for the future? What effect does that have in the context of cancer research?

The other issue relates to how people speculate on the causes of cancer. Is what we are eating or what we are drinking that causes cancer? Why do we have higher rates of cancer now than was the case in the past? That is a concern people have. How does Ireland rate in terms of cancer? Usually, we look at the position North and South for the number of cases of cancer. What is the comparison? Are they similar, or do different issues come into that?

Mr. McCormick spoke about the work he has done. Holy Trinity is going well at the football, as are the various lines within it. It is good to see someone who was a teacher and who worked in the sciences is now coming back in a different role. On the number of people needed to carry out research, is it possible to retrain people who have medical or teaching experience or experience in the sciences? Is it possible to bring those people back in later years to do research for the future? The retraining and recycling of people into different roles is important. This is particularly important as it is an older people's illness, and they have more of an interest in it. I have had type 2 diabetes for the past 18 or 20 years. Living with diabetes is something similar in terms of how one treats it and keeps going. It is important to look at how we can get more people involved on a voluntary basis, or working on that research, in order that it is not tying down the specialists or professors. More working-class people should be involved in that research. I thank the witnesses for the work they are doing. I hope there was nothing in any way derogatory in my questions.

Professor Mark Lawler

I will take of the questions and then pass over to the rest of the team. I will speak from the Northern Ireland side on the subject of cancer research and cancer research charities. We work very closely with Cancer Focus Northern Ireland, not only on funding cancer research, but also looking at the outputs of cancer research and feeding that back to Cancer Focus Northern Ireland and the patient advocates involved. I also sit on the board of Cancer Focus Northern Ireland,. We think that a really important part of cancer research is how we feed back the overall results, not just the results of individual patients. People then know what their money is being spent on when it comes to research, and what that leads to. Some of that has led to really important discoveries but has also been translated into the clinic. We feel that is an important part of how that research ecosystem goes all the way from research to its translation. It also feeds that information back to the community. We agree with Mr. Molloy on that.

The second question related to cancer incidences and looking at position North and South. Essentially, both cancer registries work closely together, particularly at the moment. We have funding at the moment to put PhD students and, potentially, a postdoctoral scholar into the two registries to work together. When one looks at the data there are no real differences between the two. There will be slight differences, but none is significant. We are seeing similar data from both registries, but it is not the case that certain cancers are much more common in Northern Ireland as compared with the Republic of Ireland. However, as Professor Gallagher highlighted, it is really important that when we start to look at what happens in different communities in the context of poverty and poor housing, it is quite clear that in Northern Ireland and in the Republic of Ireland these are associated with higher incidence. If one looks at the recent study on head and neck cancers, that is what we are seeing. Certain poorer areas of Belfast see much higher levels of head and neck cancers.

It is really important that the two registries work together. Bringing that information together is really important, as is reporting it internationally. Ireland and Northern Ireland are both part of the International Cancer Benchmarking Partnership. That means we are benchmarking what we do with best practice across the world. That is really important. Both have contributed important data to that initiative. We benchmark what we do and compare it, look to improve and sometimes we find issues. For example, we are doing very well on esophageal cancer. On some other cancers, we are not doing as well. One learns and works with the community, because the cancer community is worldwide.

Professor William Gallagher

I thank Mr. Molloy for the questions. I will bring Mr. McCormick in as well to hopefully support some of the comments. A potential requirement for training was mentioned. First, there are many people out there who would like to participate who have had a lived experience of cancer and want to contribute their experience to the research process. For example, I would point to the Irish Platform for Patient's Organisations, Science and Industry, IPPOSI, which is a patient organisation group that has specific programmes for getting people skilled up in training so they are more comfortable to participate. It does not mean that they have to have that experience. If, for example, people feel a bit more reticent about participating in that research process, they can go through that.

I would like to point to a very good colleague of mine, Professor Amanda McCann, who is a cancer researcher in University College Dublin, UCD. About seven years ago, she set up the patient voice in cancer research initiative, which is a joint effort between individuals with a lived experience of cancer or, say, family members, carers and cancer researchers. The original concept from AICRI came from one of the first meetings of that group, where Ciaran Briscoe is on the table. It was just a side chat about what we were hoping to do to bring people together. This is providing an opportunity where we can provide an environment where individuals with a lived experience of cancer can actively contribute to the research process.

I think Mr. McCormick mentioned that he and I just came back from the Irish Association of Cancer Research. We had a specific event on Tuesday evening where we showed case examples of where that input from the person with lived experience had a positive and significant impact in the course of research. We had multiple examples of that. The challenge is mainstreaming it. We have shown that it works but we do not have an established mechanism of supporting that. The patient voice in cancer research initiative got one year of funding from the Irish Cancer Society and then there was no subsequent funding in that space. We have these important activities but we need to provide it more universally. In addition, we have people living remotely. How do they participate? Will it all be done in major cities? We want a rotation. Ultimately, it is a critically important activity but it needs to be supported. Again, AICRI would fall in to provide support for that kind of environment.

I would like to bring in Mr. McCormick. He has experience because he does that with Cancer Focus Northern Ireland. He can speak on inputting on the process.

Mr. Aidan McCormick

I thank Mr. Molloy for that and for all that he does to help the people in our situation. The patient voice is critical. I am sitting in the position where I think it is critical. Generally, within the patient voice organisations, we are finding that public voices, such as my colleagues, who are with me, others and mine are heard and our views our listened to, we share our experiences and our expertise is valued, respected and utilised. That is important. As I said earlier, we have a lived experience, which is unique when it is brought to the table. That is important and we have an important part to play.

The cancer forum in Belfast is one example, because many of the other organisations do the same. We take people who have lived experience of cancer or as being a carer or, to use that word I dislike, those who “survive” cancer or are living with it. We are able to look at the work of our researchers in a different way. We look at the language and may see it differently, so we can improve that and add to it. We are bringing that level of expertise to the table and offering that. The feedback from our researchers is that it is valued.

Also, it may be known that, in applications for funding research programmes, there is a section in it for patient public involvement, PPI. It is valued too. We help the researchers write that, review it or whatever. It is increasingly becoming important that there is a contact with the public voice for an application to go through. It was not always like that, but it is like that now and that is important. That is one of the roles we play. We have a variety of different cancer experiences coming through and we are adding that in.

I refer to the Patrick G. Johnston building at Queen’s University, which is an amazing place, even to walk through. We are offering some training to PhD students there about what it is like for the cancer patient coming through. Those who are in clinical trials may not see us the human being, as such. As I say it, I had a life before cancer. They have to know me and my condition. We are trying to bring that to the table and give them training on how we go about PPI. That is important. In Belfast, Ruth Boyd and I completed discussions with our PhD students earlier this year. However, there is a European group of PhD students coming to Queen’s within the next month or two and we have been asked to do a two-hour workshop with them. Again, we are bringing patient expertise, as such, to the table to help them in their delivery. The European countries are doing it in a different way.

There is one other thing I would like to say. I have an example of retraining for Mr. Molloy. I refer to that young lady I met who is working at Randox. That is someone coming in from a totally different occupational background and is now developing, as she said to me, a second generation sequencing. These guys just smile and nod and I am just agreeing with them. That is a hell of a jump. People like that deserve credit. It is happening. That is one of the successful things about higher level apprenticeship. I make that point.

I will make a last point. I do not know when researchers find out about the word “researcher” and how they can get into it. Some people who I have talked to say it is their second year in their master’s degree when they are looking at what to do next and the word “research” comes in and the job of researcher. It is my educational background and I am taking it back to the further education regional colleges and post-primary schools. That is when you need to know you can be an A, B, C and D, and also a researcher on these broad areas.

I refer to what I find as a patient coming through in haematology, which is another experience. Go and sit in the waiting area of the haematology department in any hospital and it will give you a whole new outlook on life. I refer to the development of the clinical nurse specialist in those areas. The first haematology clinical nurse specialist was Laura Croan in the Royal Victoria Hospital and she has now moved in to research. They are very important. I do not know how widespread that is. However, from the patient’s point of view, it is nearly like a middle ground. They can help you understand. That is part of that patients’ voice – helping people understand. That is an example of a specialist nurse helping the patient understand his or her condition on the good and the bad days.

Professor William Gallagher

I want to pay tribute to one specific person, namely, Kay McKeown. She will be awarded the PPI champion of the year by the Irish Cancer Society next Monday. She is an inspirational individual. She was diagnosed with breast cancer I think at 39. She is a graphic designer by background. Interestingly, she has now transitioned into research, with no research background at all, particularly looking at information deficits that people may face when experiencing a breast cancer diagnosis in Ireland. She just completed a master’s degree with a colleague of mine. That is the idea. She is bringing her graphic design experience and her experience doing surveys into her research. That is a perfect example of people bringing their real world experience and a totally new vantage point into research.

We are probably over time.

Ms Eibhlín Mulroe

This is important. We robbed the Northern Ireland cancer patients forum’s terms of reference in the Republic of Ireland. In Cancer Trials Ireland, we high-tailed it up to Belfast, saw what Margaret Grayson and Mr. McCormick were doing up there, and we now have a patient consultants committee within Cancer Trials Ireland, using exactly the same mode of action. We learned from the team in Belfast. We have people – patients – who sit in our closed meetings with doctors and researchers and review the trials. They are involved in looking at the protocols.

Sarah McLoughlin is our public patient involvement, PPI co-ordinator. We have a patient leading a trial and a study at the moment. It was her idea in regard to metastatic breast cancer. She is leading it with the doctors. On the question as to whether patients knew what happened to their research, under legislation, we have to tell patients. We have to write to patients at the end of the trial and tell them what happened. There is a new regulation under clinical trials at European level which is making it even more transparent, so the public can go online and see exactly what trials are happening, who is running them and what hospitals are involved, and the results are made public. That is a campaign that has been going on for years. It is really important the public knows where the money goes, but that the patients know what happened. If I volunteered on a trial, I would want to know what happened, and you would have every right to know. These were really good questions, and I appreciate it.

Mr. Francie Molloy

I thank Ms Mulroe.

Acting Chairman (Senator Niall Blaney)

I am picking up the importance of patients in research planning. It seems to be a vibe across a number of your presentations today.

Ms Eibhlín Mulroe

It is a massive vibe.

Acting Chairman (Senator Niall Blaney)

How important is it?

I have one other question as well in relation to the planned US outreach. What does that consist of? People might be sitting back and wondering what the importance of the US is in all of this. I might talk to Professor Gallagher afterwards. I know some individuals who have difficulties with acid reflux. I have a specific interest in that area and in how patients could get on to that but I will talk to Professor Gallagher afterwards.

Professor William Gallagher

Patients are critically important in terms of the research process, and not even the research process alone. If you look at the development of cancer strategy in Northern Ireland, the different work groups within that were co-chaired by someone with lived experience of cancer. That is a different model. There were some aspects of that in terms of the generation of the national cancer control programme, but it was not as pervasive. As I mentioned, one in two people will get cancer during their lifetime. There are going to be people out there who can bring their professional experience. Ivan McMinn, who chaired the overall cancer strategy for Northern Ireland, comes from a hardcore business background. He can bring that acumen into it in terms of how to organise it, but obviously he comes with the lived experience of cancer as well. We need to use the different skills we have out there, but we need a mechanism for doing that. Different groups are doing it, including Cancer Trials Ireland, different clinical research groups, and Patient Voice in Cancer Research. There is probably insufficient funding for that, and it needs to be mainstreamed, organised and facilitated. What I might do is get Professor Lawler to remind members of the political context, and I will come in on what we are trying to do now.

Professor Mark Lawler

To remind members, part of the work of the Good Friday Agreement led to the development of an Ireland-Northern Ireland-National Cancer Institute Cancer Consortium, and we have had supreme benefits from that over the last 20 to 25 years. In Belfast this April, as part of the overall 25th anniversary of the Good Friday Agreement, we will be running a special cancer showcase, and I can tell the members that we already have their emails on a list and we are going to invite them all to that event. It will take place in Queen's University Belfast on the afternoon of Tuesday, 18 April. We see this initiative as really important in terms of how we work together.

By bringing together the best minds on the island of Ireland, we can be really good and really successful, and we can drive the research agenda. Combining that with the US National Cancer Institute, we can be unbeatable. We can lead the world. That is the initiative we have focused on. As Professor Gallagher will tell members, what we are now doing is a number of events in the US to look at how we can work together, particularly with the Irish diaspora in the United States, but also with the US National Cancer Institute. For example, we are co-hosting an event in the US National Cancer Institute, which is one of the best cancer institutes in the world, on 13 March. That is right in the back yard of American cancer research, and we are co-hosting an event there. We have seven students who are currently doing PhDs at the US National Cancer Institute, and we will be showcasing their work.

That is just an example of why we work with the US. We obviously collaborate with a lot of people around the world, but this is special. To remember Paddy Johnston again, Paddy used to work at the National Cancer Institute. He came back to Ireland, and he had an idea of bringing Ireland, Northern Ireland and the US National Cancer Institute closer together, because we could achieve much more than the sum of our parts.

Professor William Gallagher

I would like to elaborate a bit more on what we are trying to achieve with the US-Ireland. It is not just US-Ireland; it is internationalisation. Cancer research is an international activity. For example, Ireland invests in the International Agency for Research on Cancer in Lyon. I completed a term on a scientific council as the Irish representative for that. It is an amazing initiative, where you can look at cancer in a long-term perspective, and there are inputs from about 25 countries worldwide in that programme.

We have people from Ireland in that programme, and working in the top cancer research institutions worldwide. I will give a couple of examples. Eileen O'Reilly, who just recently won the Burkitt medal, the yearly medal given by Trinity College Dublin which is named after Denis Burkitt. Members have probably heard of the term Burkitt's lymphoma. Denis Burkitt was an Irish medical doctor who originally started in engineering and transitioned from engineering to medicine. The Burkitt medal is a very prestigious award, and Eileen O'Reilly is a medical oncologist at Memorial Sloan Kettering, one of the top cancer centres worldwide. What is particularly interesting is that if you look at the population - and Professor Lowery will probably know the statistics of it - of medical oncologists in Ireland, and where they have trained, pretty much all of them have been trained at the top ten centres worldwide. We have a hugely enriched proportion of people coming from the best institutions worldwide. Ultimately, it is about making sure they have that environment to come back to as well.

Professor Maeve Lowery

Research is important in attracting back the best people. It is about facilitating an academic career for doctors, time for research and time to continue a research career, and that it would not stop when they leave the US and return to Ireland. It is really important that we keep our eye on that: that we make sure there are career opportunities for our doctors when they come back.

Professor William Gallagher

At our Boston event in November, we have people like Laura MacConaill, who works in Dana-Farber Cancer Institute, a top centre. She is a scientist who leads their precision medicine programme, and she delivers the technologies for precision medicine. We have Sharon Cunningham, an entrepreneur from Shorla Pharma, who originally had a base in Carrick-on-Suir but then a base in Boston. We have a lot of examples of companies with dual bases; it is all about internationalisation. In an event next week in New York, we have John Greally of the Albert Einstein College of Medicine. John Greally is a geneticist and clinician, but also did some early work about the public genome effort in Ireland. He is a world leader in that space. Then we have the event organised in Washington.

What we are trying to do is tap into the network that we already know is there. I will give members a good example of that. There is a chap called Niall Lennon, who is one of the key people in the Broad Institute. I am not sure if members have heard of the Broad Institute - we would know about it from a science point of view. It did all of the Covid-19 testing for the entire state of Massachusetts - something like 35 million tests for Covid-19. Almost within a two-week period, it transitioned their lab. It is an amazing and world-leading facility. We have an Irish person in there who is essentially offering opportunities for training in the best technology institution worldwide. We just need a mechanism to facilitate that. We have things like Fulbright, etc., but sometimes we need more targeted mechanisms. We have people out there who are willing to help, but we just need mechanisms to facilitate those exchanges.

Ms Eibhlín Mulroe

Politically, as well, we have to reflect on the fact that during the pandemic, Ned Sharpless, who was then director of the US National Cancer Institute in Washington, and the adviser to the President of the United States on cancer research, signed that memorandum of understanding again for the cancer consortium between Northern Ireland and the Republic of Ireland. Our ministers for health were all involved in that. We now have the implementation committee set up with the departments.

Parallel to that, I was in San Francisco at the weekend for one of the big cancer conferences around genitourinary and prostate cancers, and Ned Sharpless was speaking at it. I asked him how serious the United States was about investing in international collaborations in research. He talked about Joe Biden's Moonshot 2. As members all know, President Biden is very interested in cancer research, and his driver is to cut - and we have talked about this already - the number of cancer deaths in the US in half over the next 25 years. There is a willingness there to work on an international level.

As we all know, he is very interested in cancer research. As we talked about already, his goal for the next 25 years is to cut in half the number of deaths from cancer in the US. There is a willingness in the US to work on an international level. They have to justify that to the American taxpayer, obviously, but there is a recognition that cancer has no borders and that governments need to work together. All governments in the world are putting money into cancer research. If we start to collaborate as we do in the AICRI, and we do more of that with the US National Cancer Institute, what does that mean for a patient in Belfast or Dublin? It would be amazing for us to be able to organise in Ireland some of the trials that happen in America. Some of the trials Professor Lowery worked on in the Memorial Sloan Kettering Cancer Center are not available here in Ireland, and they could be. We have the talent here, but it is about having the infrastructure as well. We need to get to that point. We need the committee's help in terms of advocacy and the conversations that I am sure will be had with the US, especially over the March period. There is a real team of people and talent here. There is also the political will because that memorandum of understanding has been signed.

Professor Mark Lawler

If any of the committee members are in Washington on 13 March, I happily invite them to the event we are co-hosting with the National Cancer Institute in Washington. That is an incentive for them to get over to the US.

Professor William Gallagher

We sometimes show a video of President Biden. As has been mentioned, he is passionate because a family member - one of his children - died from cancer. Ultimately, we started with a vision. He had the vision to change how cancer research was being performed in the US by removing silos, ending faction fighting and working together. That is what the AICRI is about. Essentially, it is taking the genie out of the bottle through the concept of team-based work, which involves people working together towards a common problem. That is a nice concept but one has to focus on how it is implemented. That is what we have been focused on doing. We have been establishing what we need to do to address that and bring those individuals together. Much of it is about people and providing opportunities for advanced training, networking and some degree of infrastructure. We have shown momentum and made some good progress, but we still have a way to go.

Acting Chairman (Senator Niall Blaney)

I thank the witnesses for their contributions today. In the absence of the Chair, and I hope he will not mind, I will make a suggestion about the requests that have been made in relation to Government assistance, etc. I suggest to the witnesses that they should put those requests in writing and email them to the Chair. He, in turn, can write to the Minister for Health, the Taoiseach or the Tánaiste, or whoever the witnesses desire. I thank the witnesses for their contributions and look forward to seeing them again in the not-so-distant future.

The joint committee adjourned at 3.43 p.m. until 1.30 p.m. on Thursday, 2 March 2023.