Professor Mark Lawler:

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

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