Cormac Devlin (Dún Laoghaire, Fianna Fail)
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On behalf of the committee, I welcome Professor Frank Casey, consultant paediatric cardiologist and clinical professor of paediatric cardiology. Professor Casey is accompanied by Professor Paul Oslizlok, consultant paediatric cardiologist and chair of the All-Island Congenital Heart Disease Network board. I also welcome: Professor William Gallagher, co-lead of the All-Island Cancer Research Institute; Ms Siobhan Gaynor, patient advocate; Professor Owen Smith, Trinity College Dublin and Children's Health Ireland; and Professor Gerry Hanna, Trinity College Dublin and Trinity St. James's Cancer Institute. Some of the committee members had a very positive and constructive dialogue with Professor Smith as part of the North-South Inter-Parliamentary Association in Belfast last week.

The format of the meeting will be that I will invite Professors Casey, Oslizlok and Gallagher to make opening statements. This will be followed by questions from committee members. Each member will have five to seven minutes to ask questions and receive responses from the witnesses.

I remind members of their constitutional requirement that in order to participate in public meetings, members must be physically present within the confines of the Leinster House complex. Members attending remotely must do so from within the precincts of Leinster House. This is due to the constitutional requirement that in order to participate in public meetings, members must be physically present within the confines of the place where Parliament has chosen to sit. In that regard, I ask any member partaking via MS Teams that prior to making their contribution to the meeting, they confirm that they are on the grounds of the Leinster House complex.

Members and witnesses are reminded of the long-standing parliamentary practice that they should not criticise or make charges against any person or entity, by name or in such a way that makes 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. Therefore, if their statements are potentially defamatory in relation to an identifiable person or entity, I will direct them to discontinue their remarks. It is imperative that they comply with any such direction. As the witnesses will be aware, the committee will publish their opening statements on our website following the meeting.

MPs participating in this committee session from the jurisdiction outside the State are advised they should also be mindful of their domestic law and how it may apply to their participation in the proceedings.

With all that out of the way, I note that we have apologies from Deputy Gibney, Senator Black and Pat Cullen. I invite Professor Casey to make his opening statement.

Professor Frank Casey:

I thank the committee for giving me the opportunity to speak with it today. I have practised as a consultant paediatric cardiologist at the Royal Belfast Hospital for Sick Children since 1995. Since September 2021, I have also worked as a clinical professor of paediatric cardiology at Ulster University and at Queen’s University Belfast, leading a research programme in congenital heart disease. My involvement with cross-Border healthcare has been as Northern Ireland clinical lead in the development of the all-island congenital heart disease network. Over the past ten years or more, I have learned a lot about the benefits, challenges and opportunities provided by structuring the care for children with heart disease on an all-island basis.

I will briefly give the committee a background of our network in order to set the context. The care of children with heart disease, particularly in the context of paediatric cardiac surgery, is a very specialised area. Historically, paediatric cardiac surgery was carried out in two centres, namely Dublin and Belfast. Over the past 25 years, there has been a changing environment in the delivery of this surgery following a controversy relating to– as some members may recall – heart surgeries carried out in Bristol in the 1990s.

An inquiry was conducted out of that and the consensus was that such specialist cardiac surgery should be conducted in larger volume centres with a target of 400 cases per year. In Belfast or Northern Ireland, we only generate about 110 cases per year so it was not viable to continue that service in the long term, and that created an urgent need to find a solution. Essentially, there were two options for the babies and children from Northern Ireland - one was to fly the children to England and the other to have their surgeries in Dublin. For a number of years, we did have to fly children to England. It was really difficult to fly mothers and babies when there was a service a couple of hours down the road that we could not access.

Interestingly, the crucial step in finding a solution was to have someone from the outside look at this problem. In 2014, an international working group headed by a surgeon called Dr. John Mayer came and looked at the service North and South. That group did not have the same political restrictions as others and it made an important recommendation that I think applies to many areas of medicine on this island. It said the clinical and physical resources of the two jurisdictions were to be considered as one pool of resources and should be considered a network to develop a solution for patients with congenital heart disease on the island of Ireland. We moved on from that to try to develop the network. A major step was the acceptance of those recommendations and the initiation of the network. Then, in 2016, that was backed up by financial support with the equivalent of £43 million, which was a major step.

We have worked on that model since 2014 to create a cross-Border network. There have been many obstacles to overcome but it is now well established and has improved the care of children with heart disease across the island. I hope the committee has an illustration of the network as it exists on the island with two major centres, Belfast and Dublin, with the surgical and catheterisation services centred in Dublin. Importantly, it is a tree network, with satellite centres in Cork, Limerick, Galway, Derry and Craigavon and, hopefully, soon in Drogheda. This model achieves the very important goal of giving as much care as possible close to the patient’s home.

To point out some of the barriers we find to change, which I think is the same for any cross-Border health initiative, one is the fear of disintegration of the local service. That was a real fear for the families we treated in Belfast and the people working there. The parent groups were very prominent in our considerations and, indeed, performed a really important role in shaping the cross-Border network, which is a lesson for other services.

We had to challenge the existing thinking on models of healthcare and delivery of healthcare on the island of Ireland and that can still be a challenge where people tend to confine their thinking within their own jurisdiction and not look with the patient at the centre at where they can receive the best possible care. We were lucky enough to achieve the resources needed and crucial to this was the building of professional relationships. My colleague, Dr. Oslizlok, and I worked very closely together through that process. Now, ten years later, that service is well bedded in and provides a daily service and treatment for children across the island.

The key achievements are that no longer does any child have to leave the island for the procedures and treatments they need apart from heart transplantation, and we have had investment in a children’s heart centre in Belfast and, very importantly, the establishment of joint training of future cardiologists across the island, which I think will secure the future of care for the children. We have also established in parallel to that the congenital heart disease research programme.

To conclude on some of the key elements in terms of delivering cross-Border healthcare, I think this will be delivered by structured clinical networks. There might be conditions or groups of conditions where the people in the network agree on a common goal and then put a structure in place to deliver that. It does require strong clinical leadership to overcome many of the barriers. Really importantly, any cross-Border network must deliver equity of access based on clinical need regardless of place of residence. In the cardiac field that we work in, we now have a common waiting list across the island, which is a really big step forward.

One of the really important things is that you cannot do this without high-quality IT infrastructure. You also need to underpin it with proper service-level agreements and, really importantly, governance structures to maintain clinical standards.

I mentioned the family and patient engagement group. Engagement of the patients within any initiative is really important to involve them in the change. If all that is done we have found that the sum of the parts is greater and you get what we call collective intelligence, which creates a learning environment across the network. We still have lots of work to do in terms of seeing patients mutually across the Border in outpatient settings. The model that we have developed, although it may not be applicable to every setting, has points of learning for all areas of medicine. With a total population of around 7 million, I think this model is particularly relevant for the less common conditions where the jurisdiction has expertise in both areas but that is limited and it makes the best use of that. Particularly for those living in the Border areas, cross-jurisdictional care has the potential to improve their access to care and consequently their quality of life. The benefits are not just in the immediate care, but in the efficient use of infrastructure and resources.

To conclude, our experience has shown that patients are happy to receive care in either jurisdiction if that gives them the best possible access to the treatment they need. Whichever jurisdiction the expertise lies in, patients in any part of the island should have the opportunity to benefit from it.

Cormac Devlin (Dún Laoghaire, Fianna Fail)
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Thank you very much, Professor Casey, for those opening remarks and insight into cross-Border health. I now call on Professor Oslizlok to make your opening remarks, please.

Dr. Paul Oslizlok:

I thank the Cathaoirleach and Senators. I am also very grateful for the opportunity to address the joint committee on behalf of the board of the all-island network. I will speak on behalf of the board but I also try to give the committee a bit of flavour of how the network developed from the view of the South as well as a consultant in the South. I am also a consultant paediatric cardiologist. I was trained here in Dublin and also in London and in the United States, in Boston and Charleston, before I came back to my post in Crumlin. I worked as a paediatric cardiologist at Our Lady's Children's Hospital, Crumlin, now CHI, and recently retired from that position. As Professor Casey has outlined, worldwide wherever we worked, experience has taught us that to achieve and maintain the highest standards in cardiac surgical outcomes, a critical minimum population for each centre was required and we learnt that in a very painful way with the Bristol inquiry.

On the island of Ireland we have a population of just 6 million people throughout the island and that is just about sufficient for one surgical centre for congenital heart surgery. This population of 6 million will ensure that about 400 to 500 children a year will require congenital heart surgery. These surgical numbers are required to maintain the surgeon's skills, particularly as many of the conditions that we deal with are relatively rare and we would only see a few of them perhaps every decade or so. As a result, this critical number is needed.

The implementation of the Good Friday Agreement was very welcome and timely on many fronts. For paediatric cardiac services on the island of Ireland it had long been evident that greater co-operation between the units in Dublin and Belfast was required and overdue. When Professor Casey and I began our training, paediatric cardiology was a very small world. We knew every paediatric cardiologist throughout the world. However, we did not know each other, North and South, because there was a Border there. Perhaps the paediatric cardiologists closest to us were almost unknown to us, and we were aware that we needed to address this.

The forced cessation of paediatric cardiac surgical services in Belfast, as Professor Casey has outlined, combined with the report of the international working group, provided us, North and South, with a unique opportunity to combine our services. There were, however, many obstacles to overcome. At the time, a cross-Border all-island healthcare service had never previously been undertaken. The care of newborns and infants with complex heart disease is notoriously difficult, requiring close teamwork relationships and significant funding. Perhaps most importantly, it requires the trust and the confidence of highly emotionally stressed parents and their families. This was perhaps our most difficult obstacle to overcome. There were already long waiting lists. Perhaps the members can remember back to press coverage at the time.

There were long waiting lists for congenital heart surgery in Crumlin back then. Staff numbers, especially medical and nursing throughout all the necessary subspecialties, were already insufficient and infrastructural improvements would be required.

For these reasons and others, there was initially considerable reluctance among my colleagues, medical and nursing, in Dublin, and indeed patients and their parents throughout the island, to buy into an all-island congenital heart network. To address these concerns, the all-island congenital heart disease network board, together with doctors, nurses and allied healthcare professionals and parents, commissioned EY to produce and cost a template for a world-class all-island service. The EY report and the funding model, somewhat to our surprise, were endorsed not just by our board but by the medical teams and parents' groups, and was accepted by the health Ministers and Governments, North and South. That was crucial to setting up this network.

Progress initially was slow because we had to build up trust and confidence, which takes time and patience. However, in the intervening ten or 15 years, this all-island congenital heart network has grown and matured. The clinical outcomes for infants and children with congenital heart disease are in the top tier of world-class results and that has been very important for us in reassuring our patients and their families.

Professional bonds of trust and team-building continue to develop. A key factor in the success of this venture has been the close co-operation and collaboration between the Departments of Health, North and South, the HSE and our congenital heart disease network board, between the medical and nursing staff and, crucially, with parents' groups. This has required time and many meetings, a lot of them held up in Ballymascanlon and other locations. Crucially, there has been a slow but progressive building of trust. The future of the network will depend on encouraging new medical and nursing recruits into our network. As part of the all-island congenital heart network, an all-island training programme, to which Professor Casey alluded, has been developed to train doctors in congenital heart disease. This is important. As members know, for many subspecialties, the only way we can train is to go abroad for long periods, so we lose the expertise and input of our young, bright trainees for decades while they go abroad, and sometimes they stay there. Having a training scheme on the island of Ireland, within the network, with enough expertise to train doctors and nurses has been very important. It is a significant part of what the network has brought us. Apart from medical training, we also have nursing training schemes and training schemes for other graduates in others subspecialties.

Research has been greatly enhanced by the appointment of two professorial units. Professor Casey leads the one in Belfast and my colleague, Professor Colin McMahon, leads the one here in Dublin. They work with their own research groups and work together, so we have an all-island research basis, which in itself also attracts graduates and trainees to Ireland.

On behalf of the all-island congenital heart disease network board, we are all very grateful for those Deputies and Senators who have promoted and facilitated the implementation of the Good Friday Agreement, for many reasons. The establishment of our network and all that it has managed to deliver for infants and children with congenital heart disease simply could not have happened without their work and that of their predecessors. We are very aware that there are several other paediatric medical and surgical specialties looking at the success of our network as a possible future model for their own patients. I thank the committee for its interest and attention.

Cormac Devlin (Dún Laoghaire, Fianna Fail)
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Dr. Oslizlok mentioned the outcomes for infants and children which have been recognised in world-class results. Well done for that. I call Professor Gallagher to make his opening remarks.

Professor William Gallagher:

I am grateful for the opportunity to meet today to discuss cross-Border healthcare, with a particular focus in our case on cancer research and its critical links to improved patient care. We represent the All-Island Cancer Research Institute, AICRI. For the past five years, AICRI has been focused on creating an overarching framework for cancer research on the island of Ireland, covering issues from scientific discovery to the clinic. A critical feature of AICRI is facilitation of cross-Border research in key priority areas for healthcare, such as precision cancer medicine and data analytics.

AICRI has successfully brought together 11 academic institutions across Ireland and Northern Ireland as well as key stakeholders from the healthcare and charity sectors, industry leaders and patient advocates.

The origins of AICRI stem from the Good Friday Agreement. In 1999 - a year after the Good Friday Agreement - a memorandum of understanding, MOU, was signed between the Departments of health in Ireland and Northern Ireland and the US National Cancer Institute. This MOU established the all-Ireland cancer consortium, which has had a major impact on the cancer research and care ecosystem on our shared island. Since 1999, this tripartite programme has created a cancer trials ecosystem that has allowed more than 30,000 patients across the island of Ireland to get early access to innovative medicines and other interventions. This has saved not only many lives, but also contributed to our respective economies through healthcare savings and industrial development.

Since the Good Friday Agreement in 1998, the number of people diagnosed with cancer per year has more than doubled. By 2045, it is projected that this number will double again, primarily due to the ageing population. This will mean that, every seven minutes, someone on our island will be diagnosed with cancer. Cancer research is a critical foundation to address this pending challenge. We know that patients treated in research-active hospitals have better outcomes. Due to the major diagnostic and therapeutic advances that taken place on our island and worldwide, people are living longer after their cancer diagnoses. Across the entire island of Ireland, we have close to 300,000 people who are either living with or beyond cancer. This is similar to three times the combined capacity of both Croke Park and Windsor Park.

While the tripartite consortium was renewed in 2021, a need was still identified to bring all-island collaboration in cancer research and its integration with care to the next level. Accordingly, AICRI was formed as a virtual institute via a bottom-up strategy involving key stakeholders from academic and healthcare institutions, along with patient advocates, the cancer charity sector, industry, cancer trial organisations and cancer control units. AICRI presented our early vision to this committee in November 2021 and provided an update on our progress in February 2023. Great encouragement and support for our activities was given on both occasions, which has greatly benefited our cause. Since that time, we have secured substantial funding under the North-South research programme to train the next generation of cancer researchers, as well as to advance cutting-edge translational programmes in diagnostics and digital health. The North-South research programme is administered by the Higher Education Authority of Ireland on behalf of the shared island unit. While the North-South research programme has provided a key foundation stone for AICRI, we are still in the early phases of our journey and there is a need for additional mechanisms to foster cross-Border collaboration in research to benefit patients.

I have asked three of my colleagues to come here today, who can provide key examples in the areas of survivorship and quality of life, childhood cancer, and clinical trials and radiotherapy where cross-Border collaboration has and can play a critical role. I am delighted that Ms Siobhan Gaynor, a tireless patient advocate and patient researcher, could make it today. Together with Cancer Trials Ireland colleagues, she spearheaded a ground-breaking all-island study to better understand the needs of individuals with metastatic breast cancer, who are often forgotten to the system. This work, which is patient-led, has been presented at major international cancer conferences and is paving the way for improved clinical pathways for those living with advanced disease.

Professor Owen Smith from Trinity College Dublin and Children’s Health Ireland is a leading clinician in the area of childhood cancer. Indeed, our colleagues in the childhood cancer space have led the way in showing the importance of inter-institutional collaboration for the benefit of the younger generation affected by cancer. Professor Smith is leading out on a major new all-island study, called MAGIC-I, that aims to embed genomic sequencing into the care pathway for every child and adolescent diagnosed with cancer.

Professor Gerry Hanna from Trinity St. James’s Cancer Institute is a leading radiation oncologist who has experience of working in both jurisdictions. He is also currently the vice-clinical lead of Cancer Trials Ireland, which last week launched a timely report, entitled "The Value of Cancer Trials". This report again highlighted key benefits to the healthcare system of cancer clinical trials, including at an economic level.

I again thank members for their support in our journey as we endeavour towards a fully integrated approach to tackle the challenges that cancer poses. Their support has been invaluable to date and we would greatly appreciate their advice and input as we aim to progress even further. One in two people on the island of Ireland will develop cancer during their lifetime. It affects all families and communities. We can make a difference by working together.

Cormac Devlin (Dún Laoghaire, Fianna Fail)
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I thank Professor Gallagher. I welcome the All-Island Cancer Research Institute back to the committee. That concludes the opening statements.

We will move to questions from members. As I said, it is between five and seven minutes for each member, which includes the responses of witnesses.

Garret Kelleher (Fine Gael)
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Go raibh maith agaibh go léir. I thank the witnesses for the interesting presentations. Across the two areas we have looked at, be it the congenital heart disease network in relation to paediatric or adult patients, we are looking at different types of challenges. Post the Good Friday Agreement and the progress made to date, I would like to learn a little more about clinical outcomes and the collaboration so far. I appreciate the challenges are different in cancer care. I should have thanked Professor Smith for the excellent presentation he gave in Stormont on Friday of last week. We are looking at an increased population and higher numbers of diagnoses. I am looking to get a better handle, and a little more information, on progress that has been made to date in relation to improved clinical outcomes. How can we better progress this by closer co-operation, bearing in mind the fact that building trust is such a huge element of it?

It is also about realising that when it comes to a critical mass of populations, we are better off co-operating and working together. I ask that we focus a little on the improved clinical outcomes over the past 25-plus years. As we approach more difficult years ahead, with higher numbers of cancer diagnoses, what are the challenges that are likely to lie ahead between now and 2045? If we are looking at a doubling in the number of patients diagnosed with cancer, how can we achieve better clinical outcomes? Those are general questions for both groups.

Professor Frank Casey:

Clinical outcomes are obviously a really important issue and the biggest concern for the parents of the children we treat. We mentioned all of this arose from a situation where there were poor clinical outcomes in Bristol. Paediatric cardiac surgical outcomes are probably one of the most closely monitored outcomes in the world. Within our network, every surgical procedure and every interventional catheter keyhole procedure is reported to a body, the National Institute for Cardiovascular Outcomes Research, NICOR, which monitors the results right across Ireland and the UK. One of the key elements informing the network was that we had to reassure parents and families they would have a better outcome within the system. As Dr. Oslizlok said, today, our outcomes are comparable with any centre anywhere.

The Senator mentioned 25 years ago. If we look back 25 years, the mortality for children with heart disease was much higher than it is now. When we talk to the families of children with heart disease now, we can tell most of those families there is a greater than 95% chance that their child will come through that operation. Sadly, some still will not, but the one thing we can be confident about is that within the system we are operating now, we have a team that functions very well and is very closely monitored, through governance, etc., at a wider level. That is all validated by external visits to the hospital.

Professor William Gallagher:

In the cancer space, I commented in my opening statement that we have made tremendous progress in understanding the causes of cancer, but also in developing novel therapeutic approaches, particularly following the formation of the all-Ireland cancer consortium, which had a major catalytic effect on the clinical trials ecosystem on the island of Ireland. It also had specific knock-on impacts in terms of improvement in survival.

I will call on Professor Hanna to comment on that. When we think about outcomes, it is not just purely about survival, although that it is important, but also the quality of life of an individual post their treatment. Ms Gaynor can come in on that.

Professor Gerry Hanna:

In terms of survival for all kinds of cancer, it is safe to say that we have made great progress over the past 40 years. Survival rates have increased from 25% in respect of all adult cancers at five years to over 50%. We want that figure to be over 75% in the next ten to 20 years, not just through mechanisms such as the Good Friday Agreement, but also research and improvement in the quality of care. What has the Good Friday Agreement done for cancer? It has given us an ecosystem of collaboration North and South. It has brought the world into Ireland through many mechanisms. We have had many guest speakers in Ireland and have built up collaborations with leading centres across Europe, the US, Australia and beyond. Those collaborations are important. They support us in delivering the best care to our patients North and South. They also help us to train the next generation.

As Professor Casey said, our trainees go abroad and we want them to come back and be active here in Ireland. Having a sense of connection and being able to function in Ireland is essential North and South. One of the great challenges of our time is the recruitment of the right people and ensuring we have expertise in all our clinical disciplines. If we do not support trainees in that way and have a global connection, we will not be able to do that. If we do not have research to enable an ecosystem of healthcare here, people will simply not come back to us.

It is very clear to me that we need support around clinical trials. As mentioned, the number of patients is growing but it is nowhere near enough and the cohort is a tiny fraction of the overall population. The benefits are tremendous, not just to patients but economically. As the report from Cancer Trials Ireland said, we save €31 million in the Republic alone in drug costs through patients taking part in clinical trials for an investment from the Government, through the Health Research Board, HRB, of only €1 million. That is quite a return by any measure. We need a lot more of that. As Professor Gallagher said, it is also important for the overall quality of care in our hospitals. Research-active hospitals provide better care. We want to deliver the best here. The Good Friday Agreement has connected us to the world and allowed us to have the aspiration of being global leaders in cancer and deliver the best care here.

Ms Siobhan Gaynor:

I will speak to the patient perspective. I thank the committee for the opportunity to speak about this. I am a patient living with metastatic breast cancer since 2020. There is no cure. When I was first diagnosed, I recognised that there was very little data on metastatic cancers, full stop. Ironically, that was because we died quicker heretofore. Now that we are living longer across the island of Ireland, we have started to interrogate that and work with clinicians.

One piece of work I have been involved with is a study across the island of Ireland on the needs of metastatic breast cancer patients. It is clear that clinical outcomes matter to patients, but we need to know what clinical outcomes are. Heretofore in oncology, a clinical outcome was how long a patient lived. When one is a patient, it is not just about how long one is alive for but also whether one can function, work, exercise or care for family or ageing parents. All of the normal stuff of life becomes more relevant when one is a patient with an incurable condition.

We have surveyed women with metastatic breast cancer across the island of Ireland and recognise that there are differences. What we want is pretty similar. We want to live our best lives for as long as possible, but what we need and are provided with is disparate across the island. For example, a patient with metastatic breast cancer in Northern Ireland is more likely to be referred to an exercise programme, which is shown to improve our functioning and quality of life, than is a patient in the South. A patient in Northern Ireland, following a diagnosis of anxiety and depression, which, unsurprisingly many of us have, is more likely to receive medication to treat that. In the South, people are more likely to be referred to a therapist. In asking patients what is important to them as well as what matters clinically, we get unanimous views from patients. They have said quality of life matters.

There is a lot to be learned from examining the North and South as a system for supporting patients. There are good things in the North and the South. For patients, cancer knows no borders. We constantly speak about it on X and other social media and in support groups.

We find it a little astonishing that a Border can significantly impact the quality of our care. For patients, who need to be at the centre of all of this, it is important that these collaborations continue. They matter. We ask that there is more of a focus on quality of life matters as well as quantity of life.

Garret Kelleher (Fine Gael)
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I thank Ms Gaynor. I had one or two other questions, but I will wait for the next round to ask them.

Conor Murphy (Sinn Fein)
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The witnesses are very welcome and I thank them for their presentations. This is a good news story from the Good Friday Agreement. The irony is that it should not be good news story; it should be a matter of practice. We live on a small island. There are opportunities to create better health outcomes for people. As Ms Gaynor alluded to, that creates a better economic situation, with people living longer and having a better quality of life and with improvements being made to the clinical outcomes for people. Opportunities also flow from that in the medical field in that people become more highly skilled, more involved in research and make a worldwide contribution in terms of what they are doing. Even though it is a good news story, it is actually something that should have been a matter of rote. Nonetheless, we welcome that.

The experience on both sides of the congenital heart disease and the cancer research, as well as the associated cancer clinic in Altnagelvin which has supported people in the north west, are really good examples of where better health outcomes can come from practical and essential co-operation across the island. The frustration for most of us, particularly people living in the Border areas, is that it has not been followed through. The trust issues have been breached and overcome by the witnesses. They have demonstrated the practical benefits on the cancer side and the heart side, yet we still have two systems, which, for whatever reason, do not seem to be able to gel together in a range of other areas. There is a huge imperative on the health systems, North and South, to recognise those benefits, continue the work that is supporting what the witnesses are doing and establish that work in other areas. All three witnesses referenced other areas that could benefit from that. I would like to get a sense of that.

What more needs to be done to improve what the witnesses are doing? Where are the barriers across the health system generally? I know some of this is politics. I live in the North and served in Stormont for a long number of years. We have overcome a lot of that, however, so there should not be political barriers. Is it just two systems that are not talking to each other? I know, for instance, that data sharing is problematic. In specific cases, such as those the witnesses deal with, that might be overcome but, in a general sense, if someone drops dead in Newry or falls over and injures themselves, you cannot get data from the South to indicate whether the person has any conditions that should be known about. It is similar from North to South. I think this is even a problem in the southern system with different regions. We should press to have issues like that overcome and for the two Departments, North and South, to move on. What are the barriers?

On funding, it is great that shared island funding has contributed to this. We very much welcome that, but it really should be two systems of government recognising the outcomes for the people they represent and serve. It should be mainstream government funding at the back of this, not necessarily a one-off gift from a specific project or profile of money in the South.

I want to get a sense of some of the barriers. What are the opportunities in other areas? I know the witnesses speak for their own disciplines, but they will have a broad sense of what is doable in other areas as well.

Dr. Paul Oslizlok:

I thank the Senator for his question. It is an important one. We have looked at the different systems. The Border has always been a barrier or negative. We have also learned to use the Border constructively as well. We have learned to use the innovative funding that is available because we are two different systems and to look for cross-Border funds that are available to us and that we on the medical side would be less familiar with perhaps. Getting access to more cross-Border funding has been part of our learning experience. The Senator is right. In the Border counties in particular, it has been a challenge to get patients, who could be looked after in centres either North or South of the Border, treated locally.

However, we are making moves in that direction. Funding and getting the right people around the table has been difficult. Funnily enough, Covid and all the online meetings that are much more easily accessed now have helped us in that. We are beginning to see that happening but funding is often the issue. If an individual - say north of the Border - is treating patients from the South and needs to be able to backfill his or her time appropriately, more co-operation is needed on both sides for us to source and find the funding to do that, because it is the obvious way to go.

As regards other specialties, cardiology is certainly not unique. There are many other paediatric specialties that would benefit from the same type of arrangement. It is not directly something the Senator asked but one of the sensitivities we have to be aware of when we collaborate together is that we not asset-strip any of the other units. For instance, when we were working in Belfast and Dublin together and having all this cardiac surgery in Dublin, we did not denude the centre in Belfast of the expertise it needs to maintain there. There is a lot of sensitivity there in making sure the flow of expertise happens both ways and that we are sensitive to the fact we need to maintain services in each of the centres on the island of Ireland.

Professor William Gallagher:

From my perspective, our approach with AICRI has been to take a cross-departmental approach. When we talk about cancer, it is commonly thought that it is a health-related issue but it is also a broader issue in terms of the economic and educational aspects. We have always thought that to tackle a challenge like cancer, you need to look at a cross-departmental approach.

Interestingly, even looking at Ireland there are also regional differences, notwithstanding trying to interact North and South. There are regional differences within Ireland. One of the things happening is greater collaboration between the designated cancer centres within Ireland but also, importantly, we need to harness that collaboration with Northern Ireland. We can demonstrate that easily enough from a research setting, there are mechanisms to do that, but we then need to be able to have opportunities to convert that into long-term approaches.

For example, taking something like the life sciences strategy that is ongoing in Ireland, there is a Government imperative. For example, it co-launched the AICRI report last year on the industry report. There is huge opportunity if we look at the complementary activities between Ireland and Northern Ireland. We have very complementary ecosystems. Ms Gaynor gave a fantastic example that we can learn from each other, which is not really a barrier but an opportunity, to a certain degree, to learn from the two different jurisdictions. I will briefly call on Professor Smith here.

Professor Owen Smith:

There are many ways of bringing the two sides together. Some of them have been spoken about by Dr. Oslizlok and Professor Gallagher. My area is children's cancer which you would think is going to be much easier but it had not been much easier, in a sense, until we started to develop research programmes. In my mind, research is care and care is research and we have sort of fallen behind in recent years in terms of research.

Regarding children and adolescence, our survival rates are over 90% and we are also streets ahead of our adult colleagues. However, as we said, in our area we are not just looking at who is alive or dead in five years' time or ten years' time. Most - the vast majority - are alive but that comes at a cost and that cost is toxicity - acute initially but chronic toxicities. That is why we have developed the MAGIC-I programme looking at the genome. That is, not just the genome of the cancer but the genome of the germline of the patients themselves so that we can offset some of these toxicities going forward. It is that cross-Border pollination between us and folk in Northern Ireland that will take down a lot of these barriers.

Again, in order for us to not asset-strip places like Belfast, Cork or Galway, we need to be more inclusive. As I said to the CHI board and people in Belfast before, we should be looking at joint appointments, not just in medicine but also in allied healthcare professionals, nursing and research strategies.

That is one way of moving things forward. At the end of the day, it is all about leadership between the politicians and the people who know what they are talking about, whether it is cardiology, immunology, haematology or oncology. We need this cohesion between the two groups to really fast-track this forward for our patients. A child or an adolescent diagnosed with cancer in Portadown should have the same outcome as a child or adolescent in Portiuncula. That is what we in the children and adolescent community are trying to achieve, going forward.

Alison Comyn (Fianna Fail)
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I thank witnesses for the presentations. There is an incredibly impressive array of expertise and qualifications. I am so glad we are not facing them for "University Challenge" this morning. Most importantly, I thank the witnesses for saving lives and of course I wish Siobhan all the best in her survival story. We all know that cancer and congenital heart disease do not recognise borders, whether that be age, race, religion, gender or bank balance. This is all about saving lives wherever one lives. I live in County Louth, a Border county, so I have seen the benefits of those cross-Border initiatives. I see one of my friends here, Ciaran Briscoe, who does incredible work in Our Lady of Lourdes Hospital. If I heard correctly, I would welcome the fact that the paediatric cardiology centre will be visiting Drogheda. I hope that will happen and we can welcome that in the future.

We can really see that these initiatives are a legacy of the Good Friday Agreement, which, as has been said here before, is a living, breathing document. It is not something that was just signed 27 years ago and nothing has happened since. It is part of our jobs and it is a pleasure to see these things moving forward. When we look at the very stark statistic of one in two people being diagnosed with cancer, we can see that there is an impetus and there are deadlines to this as well. However, the witnesses also included some very heartening statistics which we can work with.

My colleagues have already asked some of my questions. I would like to dig a little bit deeper into some of the challenges. Professor Casey mentioned that one of the main barriers to change was the fear of disintegration of services in Belfast. Will he explain this a bit more?

Professor Frank Casey:

This is a really important issue. When units or specialties start to collaborate, for a paediatric cardiology service the surgical aspect of the service is key to it. Parents want to be confident that when they attend, say, the unit in Belfast or somewhere else, the people there retain the skills over time and that they will not get a lower standard of care. We work very hard within both units to make sure that we have specific areas of expertise. A really important thing in the future is to be able to attract young and dynamic staff to work within both jurisdictions. We are very sensitive about that in all our discussions, and it is relevant across all specialties, not just ours. For instance, I was talking to someone from Cavan yesterday and looking at collaboration across there. Although they can see all of the benefits of that, their fear also would be that a service will be sucked from their hospital. It has to be truly a network solution where each person and each unit feels that they are an integral part of that and that they are an important cog in the wheel and it is not just someone taking their patients from them.

It makes absolute sense that we do this, but some of the reluctance that Senator Murphy talked about, of things not happening, is a fear among some people of perhaps opening up to a different option from what they are used to. As I said in my presentation, I think it needs a change in thinking and that is slowly coming about. Traditionally, people have thought within their own jurisdiction about delivering health care in an isolated sense. We are moving away from that gradually. I hope the examples that we have can foster the belief in others that it will do this. There are still many steps to be taken.

Alison Comyn (Fianna Fail)
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I welcome the fact - I think a couple of the presenters mentioned it - that the institute is looking to retain skill here in our country. The last thing we want to see is our highly skilled and trained professionals moving overseas. Is there something we can do to improve that? Is it through education? Is it through awareness? It was mentioned that there is an anxiety and a resistance among the parents' groups. What can be done to improve that confidence?

Professor Frank Casey:

The first thing, as we have seen from the patients' representative here, is to involve them. This cannot be done without patients being reassured. What we found from our experience is that the patients made a huge contribution to the shape of what was set up. We sometimes think we know what people need but the things that are important to them are sometimes very different: things like travel, having accommodation, financial implications - all those worries. If we were to have a group focusing on this, that group should incorporate not just our medics and our nurses but also parents and all the people who will be involved in any change of service because there will always be anxiety around that.

Alison Comyn (Fianna Fail)
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I was at an AI conference last year and there was a medical aspect to it. Some of the technology that is available is mind-blowing. I think Professor Smith mentioned some of the emerging technologies. What steps are needed by the Government or at the system level to embed those emerging technologies? I think there was mention of the genomic sequencing for childhood cancer, as in the MAGIC-I study, if that is its correct name. How can we embed that into standard care across both the jurisdictions?

Ms Siobhan Gaynor:

I will address that as a patient. I think Senator Murphy referred earlier to data. From a patient perspective, in order to harmonise our care and research pathways, that is in the hands of patients. Patients having access to their own medical records would be a great and a very simple start. In the North, for example, since last year, every cancer patient has had access to his or her own records. It is an old issue but it is one that, culturally, has been difficult from many perspectives. I think the dial is finally moving in terms of recognising that patients need to be at the heart of the solution. While we have previously highlighted eNotes, if we had harmonised notes across the island of Ireland that were available to patients, that would represent a great start in terms of some of the barriers that are there and a recognition, which I am very glad to hear from my colleagues, that we are finally understanding that patients are the answer to many of these problems, as is putting the data in the hands of patients. That was always a barrier, culturally. I think that will change and is changing, and for me, that is one of the potential solutions.

Alison Comyn (Fianna Fail)
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The digitalisation of patients' records is in the programme for Government and will start but it will be a slow process. I think that will make a huge difference.

Professor Gallagher was going to respond.

Professor William Gallagher:

Yes. I do not know if Professor Smith wants to come in but-----

Professor Owen Smith:

Yes, because the Senator mentioned MAGIC-I. That is funded not by government at the moment; it is funded by a philanthropist, the company that is supplying for free the consumables for the genomic testing, SFI and Children's Health Foundation. We have been in conversation with the national genetics and genomics office. What we want to establish through the pilot is that this is more economical than the way we are doing things at the moment. We want that to be taken over as a standard of care into the HSE going forward to lead the attack on cancer in children and adolescents.

Professor William Gallagher:

I have just a brief comment on the data side. Again, under the North-South research programme, there is a large-scale project funded called the eHealthHub for Cancer. It is led by Professor Aedín Culhane in Limerick and Professor Mark Lawler in Queen's University Belfast. A particular focus has tried to look at cancer-related data and how we look at best practice and harmonise activities. Again, there are demonstrators in blood cancer and, I think, in breast cancer trying to really look at the exemplar in Northern Ireland. We can benefit from that and try to address issues as to what is going on in the Irish context. This is seeded under a particular four-year project, but then you need to transition. The challenge for a lot of these things is how to mainstream a project you have for three or four years. I am passionate about this long-term perspective, almost like a jigsaw puzzle.

We have elements of a jigsaw puzzle, but what is the big picture and how do we make sure that these are sustainable over time? I do not know if Professor Hanna wants to come in on anything.

Professor Gerry Hanna:

There are obviously a lot of challenges in the differences North and South. As has been mentioned, electronic records are now standard across all the hospitals in Northern Ireland. We only have a couple of hospital here where they are, and patient access is very key. We are hindered by legislation such as the GDPR legislation. I know the Oireachtas is considering this and we are very grateful for that, and the change that is needed not just to help us with health records but also with our clinical trials piece, which has been very inhibitory in particular over the last couple of years. I really want to flag that as a thing to prioritise if we could do as well.

We also think about differences in Northern Ireland in some of the rare subtypes of cancer - some of the paediatric cancers - where some of the treatments are not available on the island of Ireland and in Northern Ireland, we send those patients abroad. We use the UK for things such as proton therapy. That is funded by the health service executive in Northern Ireland. Here in the Republic, patients have to fund themselves. This is not a short course but very often is for a number of months. Families are torn apart. It is really quite hard. One plea would be that if we are really going to mainstream it, as Liam said, is to consider what therapies we as an island of 7 million people together can deliver. Proton therapy is one of the key things we really want you to consider. We are going to be the last country in Europe not to have proton therapy, as Portugal goes live in a couple of years' time. It is just to flag that. The sense of tearing families apart at a terrible time in their life is just heartbreaking as we deal with it.

Alison Comyn (Fianna Fail)
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Gabhaim buíochas.

Patricia Stephenson (Social Democrats)
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I thank the witnesses for the presentations. The point Professor Hanna ended on around the inequity of access for patients North and South is really interesting, whether for the proton therapy or others. It would be interesting to hear other aspects of that.

I want to go to Ms Gaynor and ask a little bit more about the patient supports and what role the all-island network could play in strengthening those. She, again, talked about the differential treatment options that patients North and South get. Is there an intergovernmental role that we could push for, as policymakers, in terms of equalising that a bit more? In particular, I would like to mention LauraLynn, which is the only hospice in the South at the moment. That is a really big challenge. Is there a role for the all-island network, particularly around patient support and family support? I am also thinking in terms of hospice care.

Ms Siobhan Gaynor:

It is important to recognise that, predominantly, with incurable, serious or significant medical conditions, patients find each other. When you start asking them where they get their knowledge and support from, it is from each other. It is mainly because that is accessible. As patients, we can do bottom-up stuff, and that is what we do. We network across the island, we chat and we recognise there is a difference. We would welcome some kind of formal method for doing that in terms of patient support.

Survivorship is a very important area in oncology after treatment is finished. It has long been recognised that your treatment is never finished when you have been touched by cancer. Even if you have the cure, it is not over so initiatives around supporting survivorship programmes for people, such as medical exercise programmes and psychology, are very easy ways to move in the right direction. In terms of investment, they would be less but there could be a mechanism for funding patients working together. I am a scientist by training and background and I was shocked when I became a patient for the first time in 2020. Patients know more than you think, because there is a need driving us to find out information. Patients are very much at the heart of all of this, and it is spoken about in terms of empowering them to do more for themselves. The trick North and South of the Border could be to empower a person to go on an exercise programme rather than handing it to them. People could be given vouchers for medical exercise or psychology. Survivorship and quality of life aspects are a good place to start.

Patricia Stephenson (Social Democrats)
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Does Ms Gaynor have a sense of whether the systems North and South are at different levels in terms of empowering survivors to access the therapies that they need or would she say they are equal?

Ms Siobhan Gaynor:

I can only go on the data. From what I have discovered data-wise, there are disparities in what is available. As I referenced earlier, there are great mental exercise programmes in the North that are not as widely available here - it is a bit patchy. It is not part of a formal national programme. It is essentially done on a side-by-side basis, whereas in the North it is more of a systemic type issue. In terms of access to psychological support, it depends on your viewpoint whether you think talking therapy or medication is better. The literature would suggest a combination of both.

It is interesting that in the North there seems to be an automatic deferral to giving a pill for treating depression or anxiety, whereas in the South that is not the case. That is somewhere we can learn. I am not suggesting they are good or bad on either side of the Border. There are points we can learn from each other. There is no one better invested in their health than the patients themselves. That is part of the trick we are missing at the moment with health.

Professor Gerry Hanna:

That difference in follow-up that Ms Gaynor alluded to is very apparent to me, even in the context of some of the initiatives that were brought into Northern Ireland in terms of follow-up of cancers such as breast and prostate cancer. For a whole host of reasons we revolutionised. It was called "transforming your care" and "self-directed aftercare", where patients were not in a medically led programme but, rather, a specialist nursing programme. It was access as needed, with appropriate checks in the background happening automatically, but not routine appointments. This was a cost-saving for patients as they did not have to go to hospital but had a better road of access in. Here in the Republic, we have a very medically driven form of follow-up care after cancer. Maybe that does need to be looked at on a larger programmatic level. It has to be led as a State-wide solution. We are not going to do this bit by bit, otherwise we will not get people to buy into it. That is very apparent. There are a lot of benefits to patients but there are also cost savings and capacity freed up for the health service. That is just one example.

Professor William Gallagher:

On the point about empowerment of patients, I asked Ms Gaynor here because that is a great example of patient-led research. However, what is the next stage? How do we ensure that if we carry out a body of research it is actually implemented? Often the challenge is in the implementation phase. There needs to be more focus on facilitating those studies that are patient-led or geared at addressing issues, and then focusing on the implementation. That is where we can really benefit from an all-island approach to collaborate on this. One area we are very keen on in AICRI is to have an all-island survivorship cancer centre and to really focus on that. There are some historical reasons that has not been put into practice but there is a big opportunity because, as I mentioned, we have over 300,000 people on the island who have gone through a cancer experience. Some are still living with it. There are huge opportunities to learn from the two systems, harness the information that is there and convert it into practice.

Patricia Stephenson (Social Democrats)
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In the time I have left, I will ask about the work plan management. One of the witnesses, possibly Professor Smith, said it is all about leadership. In terms of Governments North and South, policymakers here in the Oireachtas and that whole leadership piece, what does that look like in practice? Professor Casey talked about the need to encourage a new way of thinking in terms of accessing the different services and people being open to travelling different places to enhance the quality of care. I am thinking about it in terms of my own role as a legislator. What does that leadership look like? An easier question might be whether there successful examples of this happening that the witnesses would like to see replicated going forward.

Professor Frank Casey:

What happens a lot in healthcare is that people respond to a crisis or pressure point. In terms of leadership, in order to change the way of thinking that will have to come from the top, from our health Ministers buying into this in a bigger way. If we are looking at North-South considerations of health, one of the anxieties for people in the North is that they have been used to the NHS which, for all of its frailties, has given them free care. There is always an anxiety around that. In terms of leadership and building public confidence, there is an issue in that regard. The reality is that in most areas there is very good healthcare on both sides of the island but there are specific areas in both the North and the South where there is particular expertise and we need to focus on bringing those together.

Dr. Paul Oslizlok:

In relation to what works well and what a good system looks like, one of the areas we have had difficulty with in terms of an all-island cross-Border network relates to the Department of Health and the HSE, certainly down South.

Both departments of health, North and South, have worked very well together but we are struggling with how to fund and where to put an all-island network within our funding system, and how that would work. We have changed how we allocate funds nationally and organise different regions with the HSE. One area we might look for help from the committee in is perhaps a central office or clearing house for how all-island services, which cross different regional networks, are allocated funds. We are struggling a little with that at the moment. Having a central person, or people or agency, to deal with that would certainly help.

Professor Gerry Hanna:

Clinical leadership or leadership in the system was mentioned. One thing we have to address in the Republic, compared with Northern Ireland, is the idea of protected academic research and management time for clinicians. That is very absent in most job plans here for consultants and other clinical staff in the Republic, while it has been better developed in Northern Ireland, which has borne fruit. Having that degree of clinical leadership is important, if you are developing specialist types of services.

Mr. Dáire Hughes:

I will start by apologising. I am in Westminster at the minute but would much rather be in the Oireachtas in person with the panel. I thank them all for their presentations, which I have no doubt will heavily inform our work as we move forward.

The outlining of the positives, including the congenital heart disease network, the North West Cancer Centre at Altnagelvin and the research work that is being done, are overwhelmingly positive. They are a legacy of the peace process but are also a tribute to the diligent work being done by healthcare professionals right across the island and to the advocacy of patients. It goes without saying that cross-Border co-operation in the field of healthcare is of benefit to all. It makes sense and there are opportunities for more to be done.

Professor Casey spoke about how measures were taken in his particular field to prevent sick people flying to England for treatment that is available on the island, but we are still doing that, albeit in other fields. While the positives of cross-Border co-operation are a potent argument for continuing and expanding on that, so too are the negatives. I am reminded of the tragic case of Catherine Sherry from County Armagh, who was forced to travel to England for CAR T-cell therapy treatment, which was available on the island of Ireland. It was available in Dublin, but Catherine was forced to travel, which separated her from her family. She tragically passed away separated from her young sons while receiving treatment in London that was available on the island of Ireland. In respect of all-Ireland cancer care and research, that co-ordination and the equal provision of services on an all-Ireland basis is essential. As Ms Gaynor said more eloquently than I ever could, cancer knows no borders.

By way of moving to a couple of questions, it is interesting that the notion of sharing data has re-emerged. This is becoming a recurring theme at this committee. The Institute of Public Health made similar arguments, so I hope that our concluding report will major on this and on the need to take steps to provide better cross-Border sharing of data. It would be useful to know what other services could follow the successful models of the North West Cancer Centre and the congenital heart disease models. What services could use this approach? To think more strategically, how can the two jurisdictions align long-term strategic planning, such as workforce planning, speciality treatment and investment in infrastructure, to support the witnesses' work?

Dr. Paul Oslizlok:

I thank Mr. Hughes for the question. Paediatrics has a lot of subspecialties that tend to deal with smaller numbers of patients with rare conditions. An all-island approach to many of these subspecialties makes a lot of sense. Cancer is an obvious example of that. We recently had an all-island paediatric oncology meeting where we highlighted the possibility of creating the same sort of all-island network for cancer patients. Paediatric subspecialties like gastroenterology, neurology and many others could follow the same pattern. We must remember that no matter which of these subspecialties we deal with, it is very important that we not asset strip any of the centres we are collaborating with.

In another area that is slightly different but follows a similar theme is remembering that, as we get better at what we do on the paediatric side, our younger patients become young adults very quickly. There is a real risk that they get lost between paediatric and adult services. For instance, our own area of adult congenital heart disease could benefit. Senator Comyn asked how the committee could help us. There could be a focus on looking at how children are looked after as they transition into adulthood. We have fallen behind in providing services and between 16 years of age and 20 years of age, people can often get lost in the system.

Funnily enough, I think the services in the North are better organised than ours in the South are. It is very hard to recruit people into many of the paediatric subspecialty areas, like adult congenital heart disease. If we work not just from my own network board on the services for infants and children but also look at extending that to adults with congenital heart disease and using an all-island approach, it would be very helpful for patients, remembering that our patients very quickly grow into young adults.

Professor Frank Casey:

I thank Mr. Hughes for his question. I want to come back to the issue of data because, as was mentioned, it is a key theme. If we are thinking of delivering healthcare on an all-island basis for any disease, then we need to be able to share that data. I hope that the key to that will be the electronic healthcare record that, as Professor Hanna said, is available in all hospitals in the North now and will be in the new children's hospital. In order to even plan healthcare for the future, we need all-island data. We need data on every patient on the island. The Scandinavian countries have a unique identifier that can track a patient from the time of birth through to old age. If we are thinking ambitiously, that is really where we need to go. The best investment we could make in terms of improving our healthcare and health policy would be to have that kinds of system to track a patient from birth to adulthood.

Professor Owen Smith:

In answer to part of that question, we heard Dr. Oslizlok. There are deficiencies on either side of the Border. We need to bring all the boats up to float at the same level. In the South, we have developed a young adult cancer programme, which is probably the best in the European Union at the moment. That is a big statement. The North, however, is lagging behind by about five years. As Dr. Oslizlok mentioned, we had a meeting in Ballymascanlon Hotel on an all-island paediatric cancer consortium meeting. This was all discussed. At the moment, we are reaching out to our colleagues in Northern Ireland for them to be part of an all-island multidisciplinary team, MDT, so we can share all of the data, clinical expertise and so on that we have developed over the past number of years.

I will revert to one of the opening statements in relation to CAR T therapy, which is very important. CAR T-cell therapies were sanctioned by the European Medicines Agency, EMA, in 2018. Unfortunately, in the Republic of Ireland, we did not get the go-ahead to do CAR T therapy until 2021.

Unfortunately, a lot of our patients have to travel to London to have these therapies. Going forward, it would be very helpful if this committee or whoever could ensure that we are on the same level playing pitch as our European partners, including the UK. We should not be three to four years behind. A lot of these families had to go to Great Ormond Street Hospital. The father was left behind with some of the kids and the mother would go. There was not a guarantee that the child would come back alive and well. It is an inequity that we need to sort out. These new therapies are on the march now. We need to be ahead of the curve on delivering this for our children and adolescents with cancer.

Ms Siobhan Gaynor:

If you look at the winds of change in healthcare and if you look at the fact that, as Professor Smith referenced, more and more new therapies are becoming available every year, that trajectory will not change. We understand the population across the island of Ireland and we understand it is an ageing population. We understand that the incidence of cancer is increasing. All of this will require a very different health system. That is actually a point at which we could address an all-island system. There is a shared need across Ireland and other countries to think differently about how we do healthcare. That is very clear when you look at the changes. It is also very clear that, for a variety of reasons, we are falling behind in implementing new technologies across the island. For me, a brilliant first start would be to think about what the healthcare system would look like, full stop, in ten years' time. Forget about the North or the South. What is the optimum healthcare system? Would that not be a great way to bring everyone together?

Professor William Gallagher:

Ireland's current national cancer strategy is finishing next year. There is a huge opportunity there. I do not think there is too much mention, if any, of an all-island approach in our current cancer strategy. There is an opportunity to change the curve and reference an all-island approach to the alignment of cancer strategies. That would be important because if it is not in the strategy, it is not that important.

I am a big believer in demonstrators. There is some funding from the HRB under the All-Ireland NCI Cancer Consortium. The HRB gave some seed funding for a couple of smaller projects. A key project is an all-island cancer atlas. We have two cancer registries, one in Ireland and one in Northern Ireland. Going back to Ms Gaynor's point, it is all about the data. How many patients do we have with cancer, what are the survival rates and so on? A cancer atlas would provide that information on an all-island level.

In terms of a quick win, we have a big opportunity to really focus on cancer clinical trials on a cross-Border level. Unfortunately, while there are cross-Border interventional trials under the PEACEPLUS programme , cancer is not mentioned as one of the areas. That was a lost opportunity. If it is not there, we really need to push for that because we have two exciting clinical trial activities in Belfast and Dublin. We should be promoting those types of activity as a quick win.

Professor Gerry Hanna:

Cancer Trials Ireland is one of the groups I am involved with and we are developing a number of trials but we are developing them slightly separately. If there was that joint effort, it would be really helpful along with an ability to truly share data in a deeper and more meaningful way. I will just flag that.

Noel McCarthy (Cork East, Fine Gael)
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I thank all the witnesses for coming in. Their contributions so far have been fantastic.

I have just a few questions. What are the most significant benefits that the all-Ireland approach has delivered so far for patients and researchers? Are there particular cancer types or research demesnes where all-island co-operation has the greatest potential impact? I will start with those questions.

Professor William Gallagher:

The initial catalyst was the All-Ireland NCI Cancer Consortium, which had a big impact in terms of developing a cancer trials ecosystem here that has led to a huge number of patients accessing clinical trials, which have had a positive impact on outcomes. One of the key benefits is the training opportunities that have been provided, be those mechanisms for training the healthcare professionals, medical oncologists, the surgeons and the radiation side. Professor Hanna can probably comment on that a bit more specifically.

In terms of cancer types, the rarer cancer types are probably underserved.

There is a big focus currently on pancreatic cancer, for example, and particular tumour types where we still have not made that huge benefit in terms of survival. There needs to be important progress but we also need to work together on a collaborative basis.

For example, one of the cancer charities, Breakthrough Cancer Research, has an all-island programme in oesophageal cancer it has funded. It recently launched a programme in pancreatic cancer which will hopefully be announced soon. Ultimately, these types of initiatives focus on slightly underserved cancer types where the clinical need is critical because we have not made as great progress as we have in other cancer types. Professor Hanna can probably comment more specifically on the clinical side.

Professor Gerry Hanna:

To give a few examples of cross-Border working, in Belfast we started lung stereotactic radiotherapy back in 2012 and 2013. We had several units from the Republic do their training with us to help share that technology and that cross-Border work is really powerful. It is the same technology, the same patients, the same treatment so why would we not work together? It is very obvious. More recently, there have been programmes run here in Dublin where they delivered liver stereotactic radiotherapy which has helped train and supervise the team in Belfast. It has been a two-way process, which has been absolutely fantastic.

The Deputy specifically mentioned what we do about research and clinical trials. We are an island of seven million people but we are 5.2 million and 1.8 million and those numbers are quite critical. When you are trying to bring the next technology treatment in, a pharma company or collaborator elsewhere in the world will want to look for a big centre. They will want to look for the likes of the Royal Marsden Hospital or the Christie Hospital in Manchester. If you do not have critical mass, you simply cannot run the clinical trial.

To give an example, I was on the train this morning and the chap sitting opposite me had a brother who had finished treatment for multiple myeloma in Belfast but could not get a clinical trial here on the island of Ireland. He is travelling to Manchester every week to receive a novel trial therapy that is not available here. Ideal success would look like we would have specific trials run in Belfast, Galway and Dublin, and then we would have a network of clinical trials where we provide trials for not just 1 million or 2 million but for 7 million people. We will be much more successful if we can do that. That would lift all our boats across all our tumour sites if we could get to that point.

Professor William Gallagher:

I want to make one final point that also covers our previous point about this idea, particularly in the cancer space and probably a lot of specialties, that international training is critically important. For example, one of the benefits of the tripartite agreement was this interaction with the US National Cancer Institute. Again, if you look at medical oncologists in Ireland, more than 50% of them have been trained in the top five centres in the US. Not all of them come back but a significant proportion do and have a big impact on the system because not only are they trained in the top centres but they maintain those connections with international colleagues. When it comes to access to trials, you can tap into that network.

It is very important to facilitate that international collaboration. We are going to launch a report in a couple of weeks which shows the real value of that international collaboration for cancer research. That is one benefit the tripartite agreement had, namely, that internationalisation effect in terms of cancer research. We need to facilitate people when they come home or when they have that training because often, they fall off a cliff. For example, in Ireland there is no general protected time for research so they come with all this enthusiasm and eagerness and then they get swamped with the day to day activities. That is then lost. It is very disappointing to see that and there are a few exceptions to that. They are the leaders - there are a few of them - but there should be much more of them.

An international benchmark at a European accreditation level for the top level, which is called a comprehensive cancer centre, is mainstreaming this aspect.

Professor Gerry Hanna:

On that point of clinical academics or clinicians coming home to work here, we are very lucky. We have some of the best in the world who have just returned, particularly in the past five years. We are at a really unique point where with not a lot of extra input, we could really get to the next level. That investment, particularly in clinical trials, and that connected network of service, alignment of clinical pathways, a joint cancer strategy - you can see all the bits. If we could simply bring those together, we would become the Royal Marsden or the Memorial Sloan Kettering of Europe and that is where we want to be. We know we can do it around our comprehensive cancer centres so why not do it for all the units across Ireland through a network approach?

Dr. Paul Oslizlok:

The Deputy asked what were the benefits from our perspective.

For us, the initial benefit was it forced us to sit down together with our colleagues, North and South, and gave us the opportunity to ask what a world-class paediatric cardiac service on the island of Ireland would look like, to go through the nuts and bolts of that, to count it altogether, to put a cost on all of that, which we had never done before, and to put that cost to the Governments, North and South, and tell them that if they wanted us to collaborate together to get the best possible service, this was what it would cost to fill in the gaps and do that. We had never had the opportunity or discipline to do that before and that was number one. That was very important and worked well.

Second, looking at it from down south, it forced us to count what we did and to measure our outcomes. We felt we were producing good results and surgery but we never properly audited our service like they did in the UK. Our colleagues in the North said that, if they were going to link with us, we would have to show them that our results were as good as we said they were. We had to join NICOR, the UK centre for auditing all of our results, and show ours were good. It put that discipline on us, which was very important.

Our cancer colleagues had been doing this for years; they were decades ahead of us. We did not. We just felt that we were good. We had never properly counted it before. We had to get together and prove it to our colleagues in the North. It forced us, north and south of the Border, to work out what was best and prove to one another we could do it.

Noel McCarthy (Cork East, Fine Gael)
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I thank the witnesses for their replies. I have just one more question, if the Chair will indulge me. It is very important, after hearing the witnesses' replies. How can the Oireachtas and the Northern Executive support more predictable cross-Border funding pathways to help the witnesses continue what they are doing?

Professor William Gallagher:

That is music to my ears. We have some mechanisms, such as the shared island unit. From a research perspective, it has a North-South research programme but there is a challenge there. It was great that, in the first round, more than one third of the funding went to cancer projects, which had a great impact on our early activities. However, the funding is not dedicated to any particular area and instead goes across all areas of science and the humanities. While we were initially successful, we did not get subsequent funding, probably because we had already received some significant funding. That pot of funding is not just for research. It is also for infrastructure and other things. It requires champions. It needs some political support underpinning that to push projects forward. It is very important that we identify political champions for what we are doing and progress these ideas. I am always mindful of former President Biden and his cancer moonshot and political imperative. At a European level, cancer is very important. You have got Europe's leading cancer plan, the EU Cancer Mission. We play reasonably well as part of those programmes but we are underparticipating in Ireland. With the UK back in that, there is a big opportunity.

We need to look at the mechanisms. There are some but we need more or a tailoring of the existing mechanisms towards bespoke opportunities and demonstrators in particular spaces.

Professor Gerry Hanna:

The Deputy asked what politicians could do. With the example of our colleagues in cardiac surgery, which is very expert and specialist care, you think of things such as CAR T-cell therapy and proton therapy. Consideration of the implementation of such on the island of Ireland would be a very good joint project that would really benefit patient's families and would bring us up to European level.

Professor Frank Casey:

Regarding the heart disease side of things, unfortunately, we have not benefited from the shared island fund, so our funding has been to set up the network. However, as Dr. Oslizlok said, we are at a juncture now where we must further develop what we need to do. It is something important that I hope the shared island fund would support, as well as the all-island initiatives, building on the model of cancer and congenital heart disease. If there was a group within the shared island unit that made that their focus, that would be a big step forward.

Noel McCarthy (Cork East, Fine Gael)
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I thank the witnesses again for their great work and for their engagement with us today.

Rose Conway-Walsh (Mayo, Sinn Fein)
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There is not an awful lot to be said at this stage but I thank the witnesses for being here and for sharing their experience, expertise and time with us.

I think we could do a report on this morning’s session alone, never mind the others we are having. All the witnesses’ recommendations will be included in our report. Like everything else then, of course, it is all about the implementation after that. I want to ask a couple of questions. Can we ever deliver an optimum healthcare system on the island of Ireland without having an all-island approach?

Dr. Paul Oslizlok:

From the paediatric viewpoint, it is very unlikely. From the congenital heart disease perspective, unless we had an all-island approach, we simply do not have the critical population numbers to maintain expertise. The number of cancer cases is increasing because we are all growing older and surviving longer. Congenital heart disease numbers, however, are not increasing because the number of babies born with heart disease is one in 100 newborns. This is a fixed number. It depends on population. Unless the entire population of the island of Ireland was joined together in providing a service, I do not think we would have the critical volume necessary to provide the expertise and results our patients would want.

Professor Gerry Hanna:

That gives an example. A lot of what we do has become super-specialised. In cancer services, for example, we have certainly become very tumour specialised. We are also now down to pathways. Some doctors are specialising in a certain gene change, perhaps not even relating to a particular cancer type. This is pervasive across medicine, be it in rheumatology, nephrology and even in psychiatry. These are things we do not normally think of as being very siloed. Every branch of medicine, quite rightly, is becoming super-specialised as the knowledge and specific nature of the treatments become more unique. It is a bit like it is analogous to the cardiac situation. Treatments have become much smaller for a particular group. If we really want expert care and we want to have what we believe to be the best care in Europe, I cannot see how we do not have a shared island approach to healthcare to achieve that optimum care. It is an absolute almost a no-brainer in that way, I am afraid. We have to do it.

Professor Owen Smith:

I will echo that comment. The critical mass is really important here to get the expertise in. If we look at the total population of the island, 7.1 million people, or whatever, it is greater Manchester. This is what we need to keep in focus. Greater Manchester can deliver all of what we are talking about now. It is fairly self-sustained, with exceptions. It is about critical mass, and we have to get into this space where we work as one.

Ms Siobhan Gaynor:

From a patient perspective, what you work out very quickly as a patient with a serious health condition is that medicine is not black and white. We may imagine there is a solution for every single disease, but that is not the case, particularly with technology moving rapidly in the background. You realise the direction of travel, as already alluded to, is that everything is becoming a smaller number. In other words, breast cancer now is 20 different diseases. With that direction of travel and that level of sub-speciality, you realise as a patient that it is very important that more people are looking at your case. This is because, as I said, it is not a black-and-white answer. It is very important that there are what are called multidisciplinary team meetings, MDTs or multidisciplinary meetings, MDMs. As an educated, informed patient, it is a case of the more brains looking at my medical conditions, the better, and that is what I will want. This is why it is exceptionally important we achieve that critical mass. It is not as simple as taking this drug and that it is the treatment. Treatments are becoming increasingly complex, and the more opinions - because that is what they are - that are fed into the treatment decisions, the better.

Rose Conway-Walsh (Mayo, Sinn Fein)
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How will the advancement of AI and robotics influence how we shape a health system across Ireland? How much would we waste if we were to have two different jurisdictions without sharing those advances?

Professor Gerry Hanna:

Obviously, AI is becoming pervasive in a lot of what is siloed use of the technology. We do have some specific examples where we are using the technical spin-offs of AI. In my field of radiation oncology, we are currently using AI here in Dublin to generate what we call the contours of the normal tissues of a patient’s scan to help us expedite radiotherapy planning. This is really good. It is also being brought in in Belfast. Those technologies are coming here.

There is also the possibility of using AI for recording medical notes, expediting the consultation process, providing summaries for patients and digitalising that whole experience quickly and effectively. To do that, we must make sure data controls around those processes are safe. We need AI solutions based here on the island of Ireland and we must ensure those are safe and have all the controls round them.

We can again see the slightly larger numbers of the two jurisdictions together would be a more cost-effective solution.

Rose Conway-Walsh (Mayo, Sinn Fein)
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I wish to ask about funding. When Professor Hanna suggests putting the all-island proposals within our funding system, has there been any costing of that? What would it look like? How much of our funding system would it be? What do we spend in this jurisdiction? Is it about €26 billion?

Professor William Gallagher:

On the cancer side, there have been some analyses - involving only Ireland and not looking at all-island funding - in the cancer space in terms of what investment has taken place and some of the funders. A report was launched last year. It is something that needs to be done. We are, for example, launching a report in about two weeks looking at the outputs in terms of cancer research and a broader system. We can actually glean from that some information on funding, although not an actual numerical figure. Essentially, we have two different funding systems, with some degree of overlap. That is a challenge. We do not really have a lot of mechanisms to promote interaction. We need to increase that.

In other areas, for example, Research Ireland, which used to be called Science Foundation Ireland, has what are called two big co-centres in the area of climate and food security. These are €30 million and €40 million programmes that have a North-South imperative, but also an East-West imperative. I think those are models. One of the things we were very keen on was providing an opportunity to build a co-centre around the cancer space as a focal point that would really act as that gravitational force to bring people together. This is still on our cards, but it does require support from three jurisdictions, the Republic of Ireland, Northern Ireland and Britain as well, in terms of a funding base.

Dr. Paul Oslizlok:

Could I put some figures around the paediatric cardiac service? I was anticipating a question about how much all this cost, and it is actually very hard to put a figure on it. We reckon, though, that to provide a service for cardiac surgery on the island of Ireland has an indicative cost of around €20 million. Interestingly, the patients from Northern Ireland who are treated in the Republic of Ireland pay as part of a service level agreement, SLA. I think they contribute somewhere around £5 million. That amount comes from the coffers of Westminster and Northern Ireland to the Republic to pay for that service. That is the amount of money required to treat infants and children from the North who require cardiac surgery in the South, in the context of the total cost. It is difficult to put a figure on it because there are lots of unmeasurable amounts, but that is the sort of quantum we need.

Rose Conway-Walsh (Mayo, Sinn Fein)
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We are not, therefore, talking about enormous amounts of money in the context of things. We are talking about small amounts of money to enable us to get to where we need to and an optimum level. Turning to equipment, I want to ask about a state-of-the-art all-island radiotherapy centre.

Professor Gerry Hanna:

Obviously, we would see a state-of-the-art radiotherapy centre being aligned to a particle or proton therapy unit. Again, this would be aligned to childhood cancers and some increase in adult conditions. As others mentioned, we would want such a centre to be a very collaborative effort and that we would develop it with colleagues north, south, east and west across the island and that we would do this together. We would also link in with other European and UK centres as well. It is, as I said, clearly needed. We will shortly be the only part of Europe that does not have this particular type of facility and it has a huge impact on children, particularly on their families. As I said earlier, if a child is going for two to three months of treatment, that will be one parent away and the other parent at home. That is so destructive, particularly if it is being funded by the family. It is a really huge issue. There is no doubt that we already work really collaboratively together. I have given examples earlier around lung cancer and the papillary cancers. We have a lot of interaction already on a clinical basis as well as on a clinical trials basis. If we had a radiotherapy centre of excellence, especially around particle or proton therapy, that would be a fantastic project to champion.

Professor Owen Smith:

I will just comment on the Deputy’s last question on funding. We had a bit about CAR T today, and these are incredibly expensive therapeutics. They cost in the region of €500,000 a pop.

That is really led by big pharma companies around the world. In the last three years, a group of us, North and South, have come together to develop what we call the Irish Medicines - Personalised Advanced Cellular Therapies, IMPACT, centre programme. It is where we develop academic chimeric antigen receptors, CARs, for around €60,000 as opposed to €500,000. That is with Research Ireland at the moment. That will develop a programme, North and South, to deliver these therapeutics. It is not just in the cancer space. It is also in the auto-immune and infectious disease spaces. We would like the committee's support on that. It is with Research Ireland at the moment and we hope to see a positive outcome in early December to develop that. It is €100 million.

Rose Conway-Walsh (Mayo, Sinn Fein)
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It will certainly have our support. Are the witnesses saying that our foreign direct investment could be curtailed by the fact that we do not have an all-island approach?

Professor William Gallagher:

You see that already happening in the UK, for example. A lot of investment has been pulled from the UK, much of which has been attributed to low rates of drug reimbursement, which we also have in Ireland. It is particularly acute in that we are near the bottom of the list for the drug reimbursement aspect even though we manufacture pretty much all of the drugs. That is being seen in the field in investment. We have an over-reliance in Ireland, particularly in manufacturing, and we need to develop a more diverse portfolio. There is a big opportunity with the life sciences strategy that is in play at the moment to rebalance things, and our report that we launched last year showed there was a huge opportunity in oncology in particular. About 30% to 40% of drugs are in oncology. It is a huge part of the industrial ecosystem and we can connect the dots to not only have a health benefit but also an economic benefit to our island. We also showed there was complementarity in what was happening in Northern Ireland, which is amazing, with the scale of spin-out companies. It does not happen in Ireland as much that companies formed are bought by a US company, and there is not that employment impact, whereas in Northern Ireland, there are scaled companies and complementarity. By representing our life sciences sector in a couple of areas like oncology, we can have a big opportunity at an all-island level.

Rose Conway-Walsh (Mayo, Sinn Fein)
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Very good. I thank the witnesses.

Niall Blaney (Fianna Fail)
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I welcome the witnesses, particularly Ms Siobhan Gaynor, because she has really shown the urgency of all of this and it has been well represented. Professor Gallagher and Mr. Briscoe may have been here the last time, too, and also Professor Hanna, if I am right, or else I met him somewhere along the way. The witnesses' professional approach from day 1 has been second to none. It is the reason that they have had success in much of this so far. My colleague who was online for a while, Deputy Erin McGreehan, would have worked closely with the witnesses, particularly Mr. Briscoe, on funds. She had a path worn down to the Taoiseach's office a number of years ago relating to funding, and she offers her help again where she can.

The witnesses have outlined a lot today about what they have done so far and what they are looking to do. I would like to make a number of points. The point that Professor Smith made about Manchester and the 7.1 million people is pertinent and a good comparison. However, democracy does not fall in a third of Manchester for a number of years, come back and then fall again. That is a difficulty on this island and it poses an awful problem for us as politicians in trying to get collaboration and delivery of projects. The shared island initiative is a little bit different. Funding is limited but it is different, in that it is direct funding, but the Government is also limited in what it can spend on a North-South basis because it is Southern funding. The obvious difficulty is Northern Ireland not having a constant Government and, moreover, not having devolved power for finance and raising its own funds. If Stormont had that, much of the witnesses' work and North-South delivery would be much easier. There are two things that we should be looking for, which are the stability to ensure that institutions do not fall again in Northern Ireland and the devolved power for finance, which would do an awful lot for the work of the witnesses on a cross-Border basis. People look at Northern Ireland's six counties as a problem. It is not. It is deeper than that.

It is the other six counties on the Border too, and throw Sligo into that as well. Over a third of the island is affected because you have reasonably good access to services in the south and east, but when you go to that catchment of 12 counties on this island, that is where health services are really impacted. It needs to be looked at through that prism because the area is that large.

The witnesses mentioned the shared island fund and how they had got some funding already. Maybe they will outline what applications are with the fund. I heard that they had not received any for cardiac. Let us know if there are any applications with the shared island fund at the moment.

I am aware of the cancer prevention centre that has been set up down south. I know Professor Mark Corrigan has had a lot to do with that. It is more about preventative measures as opposed to delivery of cancer cures. It is the next step in getting ahead of the issue. Have the witnesses any involvement in that? Are they aware of the centre? I look at the south-west corner and I am conscious that it is something we would love to have here on an all-island basis too. Have the witnesses any collaboration with Ulster University and the €37 million shared island fund? Will they outline what it is and what benefit they see for the island from that perspective? The hospitals in those Border counties, from Letterkenny to Altnagelvin, Enniskillen, Sligo, Omagh, Cavan, Monaghan, Craigavon, Mid-Ulster Hospital Magherafelt and Our Lady of Lourdes Hospital in Drogheda, are all crying out to have proper collaboration. The witnesses are right that it is not just cardiac and cancer services. It should be all the clinical leads. It is a world-class way to approach things. All disciplines need to get on that footing.

As much as leadership is needed on a political level, clinicians across all disciplines need to take the lead that the witnesses have shown and push and do the same thing. That brings politicians on because sometimes we have been behind the curve on a North-South basis but we are learning and starting to get there.

Professor William Gallagher:

I thank Deputy McGreehan. She has been a fantastic supporter of our activities from the start. I really appreciate that.

Cancer prevention is a key pillar of our activities with AICRI but for cancer prevention, we need to take a very long-term perspective, and it goes back to the point that I made that much of the funding is stop-start in nature. One thing that we invest in in Ireland is the International Agency for Research on Cancer. It is based in Lyon. It is a world-renowned centre focused on cancer prevention and other aspects. It is one of the pillars that we need to look at, but that is a big opportunity from a North-South perspective because you also need this long-term aspect.

Critically, we face that issue with the co-centre I talked about because one of the benefits, prior to the Executive stopping, was that some funding came and was pre-allocated in the agriculture space, not by the health department for Northern Ireland. That was able to kick-start the climate and food security co-centre. The next one on the agenda was something in the precision medicine space, but when the Executive stopped for a while, that paused. We had a concrete impact. We were then in a limbo zone. That was the next logical step but we were not able to execute it. Ultimately, we would like to resurrect that. We need that opportunity to push forward. We probably also need to make sure that the three parties will put the funding into that.

Ulster University is one of the 11 partner institutions. To give a example of a project, I co-ordinate a programme called AICRIstart, which is a foundational programme that trains 20 young cancer researchers across ten institutions, including Ulster University, in precision cancer medicine.

It is a huge opportunity. They are a key part of it. It is wherever there is a key interest across the island. There was a specific question around-----

Professor Gerry Hanna:

I will come in while Professor Gallagher is having a look for the question. On cancer prevention, we have to understand what the causes or aetiology of cancer are. That goes down to numbers. We have our cancer registries but when we assimilate that data together, there will be a better idea of what the change in demographic is. We are acutely aware of all the well-established causes of cancer, such as smoking, but we are now on emerging causes, such as obesity as one of the big challenges of our generation. We are tackling some of the more recently discovered causes, such as the human papillomavirus, HPV, and the vaccination programmes, which have been at slightly different stages. It would be great if we could bring them in concert, share the learning from those and share the basic information that we give patients so that is constantly aligned. We can see immediately where numbers matter and then we can try to think about what our prevention strategies might be off the back end of that. Again, it is those numbers.

The Senator mentioned about cross-Border working and those hinterlands, we have some clinical examples where we do that well. For example, at St. James's Hospital we have a lung cancer multidisciplinary team, MDT, which covers large parts of the island. We network in with Letterkenny hospital and jointly also with Altnagelvin hospital. We provide that support directly to them every week on a Monday morning. Those are growing pathways. We would like to see a lot more of that if we could.

Niall Blaney (Fianna Fail)
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It is a great initiative. Our difficulty from a Donegal perspective - and the witnesses might be able to tell me more and direct me more on this - is that it is a great service when there is space available, both on the cardiac and cancer side in Altnagelvin but when there is not, we are a second fiddle. That is what I am told on my side. It is not ideal; it is not the way we would like it to be or need to be. However, it is a great service.

Professor Frank Casey:

From a cardiac point of view, the point the Senator made about the 12 counties is a relevant one in terms of access to all of the other aspects of care for children with heart disease apart from the surgical service. To reassure the Senator, it is something we are working on at the moment. We have been in discussions with the commission in the Saolta group in the north west to help provide cross-Border treatment for the children of Donegal, Sligo and Leitrim - those Border counties - in Enniskillen and Altnagelvin. I hope that will bear fruit in the next year or so. It is taking a while to get there. As part of a network solution and thinking of the care of the children on an all-island basis, that definitely is a priority because we have to think of the care of the child in their whole lifetime, not just the surgical episode, which is one week out of a lifetime of care. I am sure that is true for cancer as it is for congenital heart disease. It is about delivering the care and as much of the care as we can for all the aspects of that as close to home as possible and whether that be in one jurisdiction or the other should not make a difference.

Niall Blaney (Fianna Fail)
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On the question I asked in relation to current applications with the shared island unit, are there any there currently?

Professor Frank Casey:

There are not. I made an application to the PEACEPLUS fund to address exactly the issue for which the Senator is trying to get funds to provide that cross-Border care. The application reached the threshold for funding but because of limitations it was not funded. After today, we might reprofile that. The Senator can perhaps look forward to that.

Niall Blaney (Fianna Fail)
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Keep us posted.

Ms Siobhan Gaynor:

To address the patient perspective in terms of prevention, for example, one of the things I was shocked about when I became a metastatic breast cancer patient was the gaps in the current data sets that are available to us. For example, all registries - this is not unique to Ireland - do not capture cancer recurrences. How can we fully evaluate and understand what we can do to prevent cancer or pick up cancers earlier if we do not understand what it is that causes patients to die from cancer? A person does not die from a primary cancer. They die predominantly from a metastatic or advanced cancer.

Until we have those gaps addressed in understanding by following patients longitudinally over a long period - because at the moment all the funding and research is short term as Professor Gallagher has alluded to - and unless we routinely follow patients with significant conditions like cardiac and cancer, we cannot really establish what the problem is to determine what we can advise the next generation not to do or to do. There are significant gaps present in the knowledge that could be addressed on an all-island basis.

Professor Owen Smith:

To end on a positive note, between the Ulster University and the Republic, there is a consortium called the all-Ireland children's oncology research network, ACORN, that is between Professor Jonathan Bond at UCD and Professor Matchett at the Ulster University. It is an active research programme into one of the lesser common causes of cancer in children, namely, acute myeloid leukaemia. That is an active research programme as part of the precision oncology Ireland consortium. There is all of this stuff going on in the background.

Professor William Gallagher:

A concrete example of our success is that I was talking to Professor Bond who submitted a proposal into the North-South research programme for the recent call. One of the comments that came back was unfortunately "We already put money into AICRI. Therefore, we do not need to put any more money into it." This is the challenge that to a certain degree that we have shown that we are initially successful, so the response is that we are done. It is not done.

Dr. Paul Oslizlok:

I thank Senator Blaney. Over my career, I have been aware in dealing with my colleagues in Letterkenny is how far away and isolated the doctors there feel from services available. Collaboration with Altnagelvin certainly helped but they sometimes feel that they are a second fiddle to services there. One of the ways that perhaps this committee could help would be the encouragement of cross-Border appointments. That would be very helpful. In that respect, remember that our medical licensing systems North and South are different. We have difficulty when our doctors North and South are licensed differently in facilitating travel back and forth. It can be time consuming and costly. Some way of making that smoother would help. For example, when an ambulance comes to collect a baby from Crumlin and goes back up North, the doctors and nurses have to be licensed North and South. It is fine if it is one crew once only but if there are different people time and time again, it becomes logistically difficult and costly. We are trying to work on this but seek support from the committee politically to remember that licensing is important. It is important that doctors and nurses are licensed appropriately. There is a lot of sensitivity around that. A better system that we recognise each other’s licensing system better on the island of Ireland would certainly help.

Niall Blaney (Fianna Fail)
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I thank the Chairman and witnesses. I appreciate it.

Cormac Devlin (Dún Laoghaire, Fianna Fail)
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I thank the witnesses for their responses to the various questions from members. Today's discussion has been extremely valuable because as a committee we have focused in on healthcare and an all-island approach to healthcare. Professor Smith said earlier that we engaged only on Friday in the North-South Inter-Parliamentary Association. That was beneficial. What I take away from each of the witnesses' remarks and responses to members is that there is great collaboration and co-operation on the issue of cancer and heart disease. They are specific and important areas in our health service. Our challenge is across the whole health service. How do we try to identify the blockages? Everybody has a suggestion as to where the issues lie.

I have some questions for the witnesses. Prior to the shared island initiative evolution in 2020, where was the primary source of funding for each of the witnesses' research projects? As a committee we are going to compile a report following our deliberations on an all-island healthcare approach, what are the top three things that the witnesses would say from their perspective and experience that we should include? I mean, for example, the cross-Border appointments, the licensing that has just been mentioned, data sharing and all those issues.

I thank Ms Gaynor for being here today and for the advocacy she has undertaken on her behalf and on the behalf of so many other patients. I also thank her for sharing her story today. It is not easy. She spoke of a medical exercise, the needs of patients and letting them find out what suits them best rather than being told what is best for them. I hear what she said about the discrepancies, North and South. From her discussions with other advocates and patients across the world - thankfully, with social media it is far easier to engage and hear about best practice - where would Ms Gaynor identify as a leading jurisdiction? I open those questions to each of the witnesses. I thank them all for their engagement today.

Dr. Paul Oslizlok:

I will start. In terms of research, it is very easy. In paediatric cardiology, before we had an all-island approach there was very little organised research, certainly south of the Border. We were clinically overwhelmed. One of the questions we asked in the context of an all-island approach was what a world-class service would look like. Research was suddenly brought to the fore and that gave us permission and forced us to develop professorial posts and properly organised and funded research. Mr. Casey can talk more because he is very involved in that area.

From the southern perspective, having set up the professorial post and the various research protocols, accessing funds for research is still an issue for us. The whole area of where the funds come from, between the university, the HSE and the Department of Health, is more of an issue south of the Border than it is in the North.

The Cathaoirleach asked what have been the benefits. Research is number one. We had to somehow work out how to sustain the service and keep people working within congenital heart disease on the island of Ireland. Research was one of the key elements of doing that. Forcing us to audit our results and prove we were as good as we thought we were was number two. Perhaps number three was the recognition that we needed an all-island approach because of the critical numbers of patients needed to maintain our service. That is crucial to maintaining the service, going forward.

Professor Frank Casey:

The Cathaoirleach said that we need to look at what we do in the wider health service. I hope that what will come from this process is that someone will take ownership of that. I do not know whether it will be a body or a committee, but someone must take ownership and identify key areas for collaboration, perhaps key areas of medicine, without trying to cover everything. That may involve an academic research project with the universities. As everyone has alluded to, research is important. One of the benefits of the all-island approach is that we get a critical mass and approach the healthcare of the population of Ireland. At the end of the day, if we are going to produce research, we are going to have to compete internationally for funding from funding bodies. We cannot expect governments to support us. For the international research bodies that fund us, we have to make ourselves competitive.

I will come back to the data side of things. We need the information. We have been able to share imaging information on a live basis quite easily to manage cases.

There are families with inherited conditions who live on both sides of the Border. Some relatives are being cared for in one jurisdiction or the other and the information is not joined up. That is an example of where data can help us. That is going to be key.

Professor William Gallagher:

Our journey started before the shared island unit came on stream. One of the reasons we established AICRI was that while we had initial success in collaborating on an all-island basis in the cancer space, driven by the tripartite agreement and memorandum of understanding, MOU, it dissipated slightly. There was a loss of momentum over time. There was initial enthusiasm and a lot of activity. There was a need to harness cross-Border activity but no real mechanisms to do so. Each jurisdiction was doing its own thing. There was some degree of activity but no mechanisms for interaction, apart from one or two sporadic things. We created the concept of AICRI before there was a funding approach. We had the idea to create an integrated programme and try to build it.

A trigger for early successes was that the Irish Research Council offered a €20,000 grant to look at cross-Border activity. When we got that grant, it started us. We were then ready when the shared island unit came on stream. We were co-ordinated and successful there. That is an important point. We came up with a plan for what we wanted to do before the mechanism was in place. Now we need to bring that forward.

The Cathaoirleach asked about three areas of focus. I would like to see the facilitation of more mechanisms for cross-Border research and allowing the opportunity for more interaction. I also agree that we need to think of clear demonstrators to show we can convert research into practice and pick two or three areas, whatever they are, to illustrate that point. I have given examples in the cancer space. The areas of survivorship and quality of life, childhood cancer and clinical trials are obvious areas in which we can have a big impact, North and South, if we invest.

Cormac Devlin (Dún Laoghaire, Fianna Fail)
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I know there was a review of the MOU in 2021. What is the next iteration? Will there be another review shortly? What is the trajectory for that now?

Professor William Gallagher:

From a political point of view, it was great to see that. However, substantial resources have not been put in. It was mainly driven by the Health Research Board. It put just over €1 million into a couple of projects. To a certain degree, we have carried out activities outside that, whereby we have tried to drive forward our broader vision. To maximise the ambition, we need to put substantial resources into that activity. It is good from a political point of view that we have this reaffirmation of the collaboration between North and South, and also with the US, because we have that classically strong engagement with the US, particularly in the cancer space, that we want to harness. We have a strong diaspora in the cancer space that we also want to harness. However, to be honest, we need to look at other mechanisms beyond that because it is insufficient.

Professor Gerry Hanna:

We have three asks. The first would be to align our strategy, our implementation of that strategy and the clinical protocols around the strategy. It is about making sure that we try to align our practices in that way. First, we need the strategic bit and the implementation and delivery beyond that. The alignment would be the first thing.

The second ask is for an investment in clinical trials and research. We know it is very cost effective. It is a brilliant way to share data across jurisdictions and it is fantastic for patients. It is also brilliant at retaining staff, improving morale and all the things we have talked about. We need to pledge far more fundamental investment to clinical trials and research.

The third ask is specific, and I have mentioned it a few times. It is the need to consider an all-island proton therapy unit for the treatment of childhood cancers. That is a specific ask. It is almost a crime that we do not have such a thing.

Ms Siobhan Gaynor:

The Cathaoirleach asked me about good examples in other jurisdictions. Unfortunately, I cannot name one. I am going to pick from different systems, if the Cathaoirleach does not mind, because I do not see it done very well in any one country. In some ways, that is hopeful.

When I was first diagnosed with an incurable condition, I was struck by the role of palliative care. People think traditionally that palliative care is all about the end of life but it is about symptom control and quality of life.

When I spoke to many doctors and nurses working in oncology as a patient and asked them why I was not referred automatically, knowing my own diagnosis and prognosis, the answer was routinely, "Because you will think we have given up on you." However, when I spoke to patients and did the research, that was not true. What I took from that is patients know more about what they need and in some respects are more up to date. I would love to see more integration of palliative care services across not just oncology but any incurable life-limiting condition. In my experience, palliative care and symptom control are second to none in terms of encouraging you to exercise, to help out with financial toxicity, social concerns, etc. - the whole package. I would like to see better integration of palliative care within the health system - it seems to be a little bit outside - and to keep asking patients what their needs are. At the end of the day, they are the ones who understand. In my experience, the system tends to be a step behind the patients.

Finally, we need patients as collaborators within their own health system, not just as participants or recipients. We are collaborators in co-designing pathways and research programmes because we understand. We all profess to want to set up systems to help patients but in my experience and insight, that is still a little tokenistic.

Cormac Devlin (Dún Laoghaire, Fianna Fail)
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I thank Ms Gaynor for that insight.

Professor Owen Smith:

In answer to where we get research funding, when I came back in 1995 - I had trained in the UK at Great Ormond Street and Royal Free hospitals - I brought back the MRC clinical trials. We started straight away to further recruit patients into the MRC clinical trials and 80% of our patients were entered, which is really fantastic. Over the past 25 years, we have been only second to Birmingham in the UK clinical trials programmes of entry clinical trials. Again, the committee has heard all the good things that can happen from them. Those clinical trials were predominantly phase 3, not phase 1 or phase 2. As Professor Hanna has alluded to, that is where we need to get to. We need more recruitment into the phase 1 and 2 clinical trials because they are the standard of care for tomorrow.

Going forward, as Professor Casey has said, we need some sort of body and several champions - they can be political and leaders in the field of cancer - to bring this forward. That particular group also needs to empower philanthropic sources. We are the worst in the European Union in bringing philanthropy into this form of venture.

The other area I would like to do research in is care. As I said, we need to embolden the research programmes going across the Border between Northern Ireland and Ireland. Lastly, let us get rid of this nonsense about data sharing. Even in the Republic of Ireland, sharing between different hospitals is a nightmare. It should be seamless and it is not. It is dreadful and is holding patient outcomes back.

Cormac Devlin (Dún Laoghaire, Fianna Fail)
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There are different systems even within the same hospital group and it is ludicrous.

Do members of the committee have any other contributions prior to us thanking the witnesses? No. I thank members and the witnesses for their time today, for sharing their insights, information and experiences with us. We might engage again in the next little while but I thank them for their time.