So welcome everyone to the #CochraneForAll podcast. I’m here with Richard Morley . Richard is from Cochrane, he is the consumer engagement officer. Hi Richard how you doing?
– Richard Morley
Hi André, I’m very well thank you. Just arrived, very excited to be here. Really looking forward to this conference.
Yeah, its a big old event isn’t it?
It really is and particularly excited because this is a patient’s included event which is something that’s not happened before and I’m hoping that we’ll see a huge difference to the way that the colloquium is run and people get involved. So very excited.
So this is a big conference center in Edinburgh that we’re in. There’s going to be a few thousand people here over the next four days… This kind of international colloquium is not the sort of thing that normally is very engaging to the general public. It’s the sort of place where researchers and clinicians and people that know about the scientific stuff go. How have you driven forward this patient’s included agenda within Cochrane and why do you think that’s so important?
Yeah lots of lots of things in there… It is a huge conference isn’t it, over twelve hundred people have registered to be part of it. That’s an amazing thing in itself just the sheer scale of it. And for people who are coming to that’s the first time I think it’s it’s quite…
For me, I remember my first experience it was quite a surprise, quite imposing and difficult to get your head around at first. But very exciting at the same time. And it is a scientific conference. I think you know it’s important to say that right from the start. It is a scientific conference and it’s about advancing our understanding of evidence, evidence-based medicine and that’s the fundamental thing.
It’s important to say though that Cochrane puts consumers, patients, carers and other people who are the ultimate beneficiaries of Cochrane evidence, puts those center stage as well. And for the first time Cochrane UK and Cochrane itself have worked together to make this a patient’s included event, so that we can open the conference up to the people that Cochrane exists to serve.
That’s been an interesting journey that we’ve been through. We wanted to do this for a whole host of reasons. It’s because Cochrane believes very much in putting patients at the heart of its evidence and that’s something that we’ve been working to do recently. So for example, last year we adopted a statement of principles about how consumers should be involved in Cochrane. So this is part of that work, part of the general process of increasing the amount of involvement and engagement of consumers. So this is one element of that. And so last year Cochrane UK were very keen to to put patients consumers at the heart of the conference and the patients included process was part of that. So we drew up plans, Cochrane UK and others and I drew up plans to make it a patients include conference. There were there were five things that we had to demonstrate to the people who run patients included in order to get the kitemark. So that was very much about how we involved people right from the start in the process of determining how the conference will be run. What kind of things would be on the agenda how we could meet the needs of patients and consumers who are attending and so on. That’s number one.
But we have to make it accessible. We have to do things like we’re doing now this conversation we are having now is about extending the reach of the conference, so that it’s beyond the walls of the conference. So it reaches out to the community. So we had to demonstrate all of those kinds of things to the patients included people and I was very pleased that they very quickly accepted our proposals to them and gave at that kitemark.
We did a lot of work to involve consumers. We had two face to face workshops one in Oxford and one here in Edinburgh. We ran some online workshops and webinars. There was a survey as well to generate ideas and suggestions about the things that were important to people and how we could transform the conference to make it accessible to people. And I hope that the people who come will actually see the change this year. That’s really important to us.
I get the sense that it’s the start of a journey for Cochrane and that obviously Cochrane is a very established organisation in 25 years or so it’s been around. And such, these events are opportunity to bring back together everyone from around the globe who worked in this huge network. And changing that, changing the dynamic of that, and the culture of that, and opening it up in this way is not something you do overnight.
Absolutely. And you know there’s been some interesting discussion in the wider community about how ambitious we’ve been and and how far we’ve come. But it is absolutely, as you say, this is a journey that we’re on.
We’ve taken some very big strides on that journey to get where we are today. You know and that’s involved thinking very hard about the way that we run the conference, about the kind of resources that we’ve put into it. In terms of, for example, the awards. The financial awards that we that we make to support consumer attendance. That’s been increased. We’ve changed the agenda as well and we’ve done a whole range of different things to make the patient consumer experience different this time. But it’s not the finished element.
So where does it go from here do you see? What’s your vision in five years, in 10 years time? What kind of things would you like to see happen here? Or do you just not know because you haven’t involved patients in the pre-production of those ideas?
I think to some degree it’s that. This is a first step really. I think you know after the conference, we will be taking a good look at how it went and reviewing it. I dont think we have a picture of exactly where we’d like to go but we know that this is one step on the way and it’s not a finished process. And that’s not only true of the conference but that’s true of Cochrane as a whole because…
Consumers were involved in Cochrane right from the beginning when it was established. Cochrane were very innovative in the way that it involved patients and consumers right from the start. In terms of helping to produce evidence, helping to disseminate it, helping to run the organization, you know, involved in the management and the governance of the organization. And at the time when it was established, I think you know we could proudly say that we were leading something here, leading the movement. I think other organizations have caught up. To some degree, perhaps, done things that we aren’t doing and that we would like to do. So I think there are opportunities for us to improve the way that consumers are involved in Cochrane and here at the conference. We’re going to be discussing that. There’s a discreet thing about patient and consumer involvement in research here. There are 30 workshops and many oral presentations around that. So this can be a continual discussion about how we do that.
So involving patients in the research itself? Or I was interested in engaging patients with research, is that part of that same theme?
It’s both really. For an international organisation there are some issues around language, around talking about consumers and patients and so on. In different parts of the world, people use different terms and will understand different things about it. Involvement and engagement are understood differently in different parts of the world. But you know, I think our first step is how we engage with the wider public around science and around evidence and that’s work that we are doing. So for us just as an example, I’m currently part of a group of people who are producing some resources to explain evidence based medicine. To explain what trials are, systematic reviews, what Cochrane evidence is and how to assess it, how to critically evaluate it. So that’s part of the engagement process and we’re developing… another example there’s a membership scheme that allows, welcomes in people from around the world into Cochrane, so that we can have that conversation, that dialogue about evidence. So that’s like of the building blocks of our work in this area.
Involvement, I think is a slightly different thing and that’s where Cochrane has a long history of doing this. Sitting alongside patients and consumers and producing our research together. So that’s things like helping to identify what research is important and setting priorities for future research. Helping to define research questions. Helping to define the outcomes from research and helping even to conduct that research and be partners alongside researchers and working alongside them and then to disseminate it as well. So that involvement work is something that Cochrane… that involvement of consumers is something the Cochrane has a long history of doing and we want to do that better. So that’s going to be a big part of the conversation at the conference.
And if people are following the hashtag…. Obviously over the next four days there’s been a few thousand tweets, a lot of stuff to pick out and its going to be quite difficult to follow that remotely. Is there anything in the program particularly that you think would be engaging for the general public or patients who don’t necessarily know too much about Cochrane. What do you think is going to pique their interest?
Well I think for people who are here and hopefully in the future people who are interested from around the world as well. The first thing that one of the things that consumers asked for at this conference was a learning workshop which just for people who aren’t scientists to understand what is evidence based medicine? And what is research? And what Cochrane evidence? and how is it produced and how can we get involved? So there’s a workshop on Sunday about that and so that’s going to be… I think that’s quite a departure actually. I am quite excited about that. Lots of people have signed up for that. So that’s going to be really interesting and I’m hoping that we’ll be able to continue to produce that as a webinar in the future.
So that’s the first thing people will go to and get engaged in the workshops on the basis where you don’t require any knowledge about scientific principles.
But then there are 30 workshops which are on that involvement theme and it’s a huge range of workshops. I’m quite dissapointed that I can’t get to a fraction of them myself! But there are ones here about how you define outcomes if your a patient for research, about knowledge translation, about… one that I’m particularly interested in is about how we look to the future of consumer involvement. How we celebrate our success but also how we… how can we take this further forward and improve it and raise the quality of our involvement work with consumers. There’s a huge range of topics and oral presentations which are going to be great. Some of the plenary sessions as well, the keynote presentations are going to be very exciting. I’m particularly looking forward to Jennifer Johannesen who’s going to be talking about her experience of patient involvement and casting a kind of a critical eye over it which I think is very much needed.
Well congratulations again for getting it as far as it you have. It’s brilliant that this is a patient’s included event. It’s real step forward for Cochrane. Thank you for talking to me.
It’s been a real pleasure. Thank you.