Translational research: from bench to bedside

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Published: 19 Jun 2017
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Prof Peter Selby - Leeds University, Leeds, UK

Prof Selby talks to ecancer at IFCPE 2017 about bringing together patients and professionals to improve care through patient empowerment and patient centred care.

There are some emerging themes about the shortfall of long term survival rate in Europe because of the ‘patchy’ nature of cancer care.

Prof Selby believes that it's important to be systematic and share practice between countries and institutions in order to boost care and survival rates.

Prof Selby was one of the contributing authors of a paper warning of the potential consequences of Brexit in cancer care, published in ecancermedicalscience.

This is a meeting that’s bringing together professionals and cancer patients to look at how we can improve things using patient empowerment as a way forward. There’s a consensus across the meeting that working together we can achieve more than working in separate silos and that’s really very exciting. I just presented some outline introductory comments. I made the point that when you go to different meetings in Europe and the United Kingdom, and the same is true in North America and across the rest of the world, I think, there is an emerging consensus about how we should best approach cancer care and cancer control. All the themes that are familiar to many of us now – specialised care, patient-centred care, multidisciplinary care, the use of a multidisciplinary meeting to ensure that patients are getting the very best inputs that they can have, these are emerging now as strong themes, but it’s also very clear that not all patients are getting access to care of that kind. We presented some data that shows the shortfall in long-term survival in Europe as a consequence of the patchy nature of the care. The argument is we can make that better, we need to be very systematic about that, we need to share practice between good practice in some countries - Europe as a learning community where you can benchmark one against another and look at things that work well is an idea that again is fairly generally accepted but quite hard to deliver.

Does the involvement of the patient in the decision making process affect their mental well-being?

There’s quite good evidence now that if you allow patients to participate in shared decision taking that you improve outcomes. It’s not a huge body of evidence, and it’s quite a difficult topic to study, but you can see improvements in psychosocial outcomes, so people feel more involved, more confident, their relationship with their clinician is better, their compliance with treatment is improved. Then, of course, you can see patients being involved in influencing and developing the services, so if you look at the group level, you can see that influence there improves the way things are developed. The patient-centred approach is the improvement in communication, the training programs. Then there’s the very difficult area of policy and politics. It’s quite clear that politicians will listen to patients, patient advocates, at least as readily as they will to professional groups. If you can get the two voices coming together you potentially can influence politicians as well.

Does there tend to be a separation between patient sessions and the rest of the meetings?

I think we need to move away from the idea that the patient advocacy side is sort of bolted on as an afterthought, comes at the end of the session, the things that you’ve said. What we’ve tried to do in the European Cancer Concord, which is just a catalyst, it’s just a group of people coming together to try and influence activities, it’s not a big organisation, but we’ve made it a co-production activity so the leadership team is two patients and two professionals. The executive is 50-50 between patients and professionals and the whole membership is roughly 50-50 for the European Cancer Concord. So that’s just one approach by one relatively small group to try and make this co-production up front, working together and that more powerful voice.

What are the main things that need to be done to increase patient involvement?

I think this early upfront co-production involvement of patients is the way we should approach it. It’s not always easy, it can be quite hard work. You’ve got to communicate really carefully, you’ve got to spend time making sure that there’s a shared understanding. I think that way forward is very important and then from that grow the sorts of initiatives that have also been talked about in this meeting in the early sessions – good practice guidelines, the particular work on breast cancer I think is very important, we’ve heard about today. So looking at ways of characterising what is the best practice, and then making sure that in each country, through national cancer plans, you can begin to introduce it. Some of these things require more resources, but a surprisingly large proportion of the things that need to be done are not desperately resource intensive. So simple, straightforward measures can be really quite effective and we need, obviously, to identify those.