NCRI 2015

Working with patients to shape the research agenda

Dr Ian Lewis - Tenovus Cancer Research, Cardiff, UK

This year one of the posters we’re presenting is on our public patient involvement in how we set our research agenda and also how we select research projects themselves. So if you go back in Tenovus Cancer Care’s history, whilst we’ve done a lot of great research, carried out a lot of great services, we never really brought the two things together and we had very little input from people affected by cancer and how we funded and what we funded in terms of our research portfolio. So we’ve worked really hard to develop a couple of different ways of doing it. One of the ways, which we’ve been doing for a number of years now, is actually having a panel of patients and carers supported by traditional, robust, academic peer review to pick research projects that are not only research excellent but also highly relevant to the real needs of people affected by cancer.

Whilst that has been great, one of the gaps we’ve had in that is that we never had a research project from a patient or a carer themselves which is, in hindsight, not really surprising. To write a research project, to be able to then carry that project out, understand the methodology and simply to have the time and resources to do that are, unfortunately, beyond many people. But really the best ideas should come from the people who are affected by the disease themselves. So we introduced another mechanism by which patients and carers could actually give us ideas about what was good and bad about their care and the possible solutions to overcome those issues.

So in that sense we’ve got one mechanism by which we have research by researchers selected by patients and then research by patients which is then selected by researchers. Because then we challenge the researchers to try and meet those challenges, those issues, that are raised. We’re not just doing this now through our research funding, we’re also doing it through our policy development. So we’ve recently carried a project in partnership with the Institute for Welsh Affairs, a think tank in Wales, where we’ve actually asked the public what was missing for them during their care, what was good about their care, and used that to almost crowdsource our policy. So how we take forward asks for the Welsh government and the UK government and potentially Europe as to what could really be done to improve lives, what was important to them.

The nice thing about presenting that here at the NCRI conference is that probably, as I said, going back even six or seven years we had very little public patient involvement in what we did. Really coming to the conference and seeing all the patient involvement, carer involvement, and how that was embedded in the NCRI was probably one of the lightbulb moments for us in showing where we were in stepping up to the mark. I think therefore it’s really nice to come back here and show at the conference the influence the previous conferences have had on us as an organisation.

Could you give an example of one of these projects?

In the Institute for Welsh Affairs project we asked people, as I said, what was missing for them but also what was good for them, what good experience of care did they have. We didn’t really know what to expect, we thought that there might have been some really big money issues that were raised, some big systems things or things around cancer drug funding or radiotherapy. But actually the issues that were raised time and time again were more around very practical quality of life issues. So travel times to hospital, information about accessing benefits and other wider supportive care. Probably one of the most interesting ones which actually has come up now in two projects that we’ve run with the patients and carers and that is can we find ways to reduce the actual amount of time that patients and their families spend sitting in hospitals, so whether in outpatients clinics or waiting for chemotherapy, waiting for radiotherapy. We hear stories all the time about people who arrive for their chemo appointment at half past eight and are not seen until maybe two, three, four o’clock that day. Now, that sounds like maybe quite a small thing in the wider scheme of cancer treatment and all the massive advances in therapy but actually for people, many of whom might not have good prognoses, spending very precious time sitting in waiting rooms is a serious quality of life issue for them.

Is this patient-led approach to research quite novel?

There’s quite a movement around now around having patients and carers to actually start leading the research agenda and certainly the NCRI and the patient and public and carer involvement here certainly helps to do that across the broader spectrum. But certainly individual organisations as well and certainly other funders are really embracing this as well. I know a number of other cancer charities are really leading the way in identifying and training people affected by cancer to have the skills so they can really input in a robust and meaningful way.