Professor Tom Keane:

I thank the committee for its invitation to appear before it. The concept of having such an all-party committee looking to the future is absolutely essential, when compared with what has always happened in the past. Coincidentally, I am chairing an initiative for the Royal College of Physicians, Towards 2026, which members will hear about some time in November.

Returning to the implementation of the cancer programme, I thought it would be appropriate to try to go over the lessons learned. This is all about implementation. It is somewhat gratifying for me to look at the latest figures which show that patients who were diagnosed with cancer between 2008 and 2012 have a 60% chance of surviving five years. This compares with a figure of 45% for patients who were diagnosed between 1994 and 1999. I emphasise that this is a team effort. There is a huge number of people involved at all levels of the system, from the Department through to the hospitals, doctors, nurses and administrators, and I would like to single out a couple of people for acknowledgement at the beginning. Probably my biggest support at the time when I came to the position was from Tony O'Brien, who was then the director of BreastCheck. He essentially became my deputy, and subsequently associate director of the cancer programme. His knowledge of the Irish system compensated for my lack thereof and, without his help and advice, I probably would have fallen into many dark holes. Similarly, I had three excellent advisers: Professor Arnie Hill for surgery, Professor Maccon Keane from Galway for medical oncology and the late Professor Donal Hollywood for radiation therapy. After I left, the programme, as members know, was looked after by Dr. Susan O'Reilly, who is my friend and colleague from Vancouver. She has now moved on to higher things, and the programme is now led by Dr. Jerome Coffey. I am delighted to see it in such good health and progressing.

I will move on to the lessons learned. The first big lesson is all about communication. Communication probably took up 50% of my time when I was there. The media were ever present, even outside the front door of my house when I came out in the morning whenever a controversial decision was being made. I became quite familiar with the surroundings of Leinster House and got to meet virtually all the Deputies present at that time. I appeared before the health committee, which gave me an opportunity to have a frank and open exchange with people in the political system about what we were attempting to do. Communication with the clinical community in Ireland is difficult, and I used the colleges - the Royal College of Surgeons and the Royal College of Physicians, and the faculties within them - as a bridge to meet the medical leadership in Ireland.

This is an underused opportunity in terms of communicating change. In the colleges, as I discovered with the recent initiative, there exists essentially the main medical leadership for the country. There is a huge opportunity to have dialogue and influence with clinicians through the college mechanisms. Similarly, I would say the Irish College of General Practitioners is another body which is underused as a communications tool. I found it incredibly welcoming, eager to be engaged and generally surprised I was bothering to talk to it.

The issue of dealing with the public sector unions was potentially huge for us, given that we were going to require relocation of nursing and other staff in multiple hospitals. Again, I found through sitting down and talking, explaining what we were doing and what we hoped to achieve, and outlining principles of fairness that we would adhere to as we went forward, that ultimately I received significant co-operation without any major public disarray. Communication about change is the first, and by far and away the most important, priority.

The next important issue is leadership. Leadership occurs at multiple levels when change is being made. Obviously the focus was very much on me as the lead person, but the leadership at local level was invaluable. The vast majority of oncologists in Ireland have been trained elsewhere. They recognised that what we were putting forward was correct. Even though it might not have suited their local jurisdiction, most of them in their hearts and souls knew this was not just an idea but an evidence-based idea, and that we were bringing forward change supported by strong evidence rather than a political whim. Leadership at the political level I will come back to later, but I must acknowledge, and many committee members probably know, this was almost a pet project of the former Minister, Mary Harney. She was the person who recruited me to come. She was the person who drove most of the change. I have to say that at the time her support and the support I got from the Government was invaluable. I did not have to fight any political battles and I could focus on the job at hand.

With regard to support from the Department, and senior officials in the Department of Health, this is another important community. They were very supportive and, in many ways, the cancer strategy had been fostered partly from within the Department so it had huge buy-in. We were fortunate we had buy-in at multiple levels. We had a strong evidence base for making these changes even though, I do not know how many committee members recall, there was much difficulty in some parts of the country. On my first visit to Leinster House there was a very large demonstration on Kildare Street and I had to be taken in the back way because people were afraid they would recognise me.

Change in the medical environment, whether in Ireland, Canada or anywhere else, cannot be forced unless it is rational and supported by evidence, and people are willing to engage in dialogue to bring things forward. There is an issue about dialogue in Ireland. I was aware there was a real risk when I came regarding the strategy document, which was an excellent document produced over two years by the national cancer forum. I regarded the document as sacrosanct and I refused to reopen it. The danger I saw was that the risk of endless talk would pre-empt any implementation strategy. I was much criticised for refusing to engage in a discussion on the strategy because I knew once I opened up the strategy then basically we would end up talking and I would spend my time in Ireland talking and not being action-oriented.

Another issue that was important for the cancer programme was the framing of the discussion. Many committee members are aware that at the time there was a series of horrific instances of misdiagnosis, mainly around breast cancer but not exclusively. I had made it clear to the then Minister, Mary Harney, that when I came I would refuse to engage on the subject of things that had happened before I had come. I did not get drawn into many of those discussions, in fact I refused to engage, and I focused entirely on the future, saying if we had a better system these things would not arise.

There is another issue regarding cancer, which is misdiagnosis. There is no perfect system for diagnosis in the world and a low level of misdiagnosis occurs in even the best system. It was important to communicate to the public and media that a misdiagnosis, and this is particularly around mammography, did not amount to negligence or incompetence, and that there is a low level of misdiagnosis simply because one is looking for needles in haystacks, and at a certain level the discriminant ability of the technology and the human mind means is impossible to be 100% accurate. This is important to recognise.

Regarding the level of evidence we brought to bear, I would say that in 80% to 90% of it there was significant evidence in the international literature and from other jurisdictions that what was happening in Ireland was not best practice. We were able to point to comparators at the time. Ireland was in the bottom quartile of the OECD tables for cancer outcome. It was not as if we were arguing from a point that Ireland was doing really well and therefore we should leave everything alone. There was a very strong argument that we were doing very badly. The tragedies around misdiagnosis helped to focus the public mind on the need for change.

Several other issues are important in change, and these include talking to people who know what the problem is. I was fortunate in being able to engage with a number of expert groups here, which saved me huge amounts of time and effort. I met the Irish Thoracic Society, which is made up of most, if not all, of the respirology community responsible for diagnosing lung cancer in Ireland, and it had a clear picture of what the issues were with regard to delayed diagnosis of lung cancer. I took the recommendations and we debated them, and, essentially, we moved to put in place rapid access diagnostic clinics throughout the country, which have been incredibly successful in granting general practitioners rapid access for their patients who have red flag symptoms suggestive of lung cancer.

Similarly, the coloproctology society, which represents most of the surgeons involved in colorectal surgery but particularly rectal cancer surgery which is highly complex, were willing to engage and agree that rectal cancer surgery should only take place in eight hospitals. Without their support it would have been incredibly difficult. Many of the changes were supported by the main community, even though there might have been individuals who, at a personal level, saw their situation being potentially negative.

Another issue is building trust. This is something which must be earned. We had a strong sense of the need to be accountable and very transparent in what we were doing, and to demonstrate integrity at all levels. The programme managed to achieve this.

It built a trust within all of the communities that we were dealing with that, whatever else we were doing, we were genuinely motivated to do the right thing for the country.

I will turn to the necessary authority and resources. Uniquely, no individual in a clinical leadership role previously had been given the level of authority that was given to me to allow me a free hand in making decisions. I did not have to wade through layers of committees. Even though I was technically a part of the HSE, I was functioning in large part outside it, in that much of the drive and energy for the programme emanated from the Department of Health.

Resource issues will always be paramount. The cancer programme got significant additional resources in 2007 and 2008 before the financial collapse, but a considerable part of the programme's funding was a mobilisation of existing funds. Whenever we closed a programme down in hospital X, we took the money that had been funding it and moved it to hospital Y. Historically, this has been difficult to do. Essentially, we moved the money to follow the patient or to where the patients were going to be.

I could go on at some length. Nearly all of the lessons learned in implementing the cancer programme are applicable to any major health care reform that is going to happen in Ireland. I will leave it there for the members' questions.