#CochraneForAll interview with Emma Cartwright and Jess Rees, the Rosamund Snow Prize recipients

Emma Cartwright @EmmaCartwrigh1 and Jess Rees @jessrees_, Cochrane UK’s Rosamund Snow Prize recipients, interviewed firstly by Sally Crowe @sally_crowe (Part One) and then by André Tomlin @Mental_Elf (Part Two), members of the #BeyondTheRoom team, at the Cochrane Colloquium 2018.

Part One – podcast and transcript


(Part One)

SC:

OK, this is Sally Crowe reporting for Beyond The Room at Cochrane For All and right now I’m sitting next to Emma Cartwright, who is the recipient, one of the recipients, of the Rosamund Snow Prize and I think is here for the first time at a Cochrane Colloquium. So, I’m going to just ask Emma a few questions about her experience so far. So, welcome Emma to the colloquium. How’s it going for you?

EC:

Yes, it’s been a really good chance to come and experience a conference. It’s the first time I’ve ever been to a conference and it’s a really big one to come to. So, yeah, it’s been really good to experience this.

SC:

OK, if could you just tell listeners a little bit about yourself before we talk a little bit more about how, what you’re enjoying in the conference.

EC:

Yeah, perfect. So, I was diagnosed with type 1 diabetes when I was four, so that was 25 years ago and, as I was growing up with diabetes, I really struggled with knowing how to live with my condition. I knew the medical side of it but I just really struggled to know how that incorporated into my life and I really just stopped taking medicine and stopped looking after myself. And, as I was growing up, I realised that there were many other young people out there, who felt the exact same way as me, and I just thought it was very important that these experiences were shared and actually, by meeting other people with diabetes, I realised the importance of being able to share experiences and what we could all learn from that. So, I started studying health psychology and looking at peer support as a mechanism to help people with long-term health conditions. So, I’m now doing my PhD in Singapore, looking at that as an area of interest, particularly people with diabetes and kidney disease.

SC:

Brilliant. Why Singapore?

EC:

[Laughter]. So, my partner lives…he was offered a job out there as a health economist. So he got the job out there and we just thought it would be such a good opportunity to go and experience a different part of the world. And I think also, if I want to work in research and health care, I think it is really important to get different perspectives around the world, because I think the service that we have in the UK is very unique and I think it’s really important for me to go and see what health care is like for other people around the world.

SC:

And so the Cochrane Colloquium is an international conference, so how are you finding it? What is your experience so far?

EC:

Yeah, it’s been really, really great. And also to hear such a variety of stories from people all over the world has been amazing. To hear how…how experiences of people living with health conditions can be so different from all over the world. So it’s been a really good opportunity to hear those stories, which I think is really important.

SC:

And what do you think you’re going to take away from this experience?

EC:

I think I’m going to take away a lot of motivation to start, to continue on in ensuring that patients and people living with health conditions have a really strong voice when it comes to research, when it comes to policy, when it comes to clinical decisions around about not only their health but also how health systems are designed. I think it’s just motivated me even more and made me really very passionate about the fact that we should be absolutely, as patients, at the forefront of decisions, in deciding what questions we should be asking, what outcomes we should be looking at, and really driving…driving things forward.

SC:

Fabulous. And my last question is: I shall be seeing Mary, Rosamund’s Mum, in a few weeks to report back from the colloquium. What would you like to say to Mary? Because I shall tell her!

EC:

[Laughter]. Oh, we just want to say, thank you so much to Mary for this opportunity. It’s been a really, really eye-opening experience for me and we just feel very lucky that she’s given us this opportunity to come and we just want to thank her, massively, for the opportunity.

 

(Part One continued)

SC:

Hello, this is Sally Crowe reporting for Beyond The Room at Cochrane For All. I’m sat next to Jess Rees, who is one of the recipients of the Rosamund Snow Prize. And I just wanted to find out a little bit about Jess and how she’s finding the colloquium. So, welcome Jess.

JR:

Hello. Thank you for having me. It’s day two of the colloquium so far. Yesterday was very overwhelming. It was great to have Emma by my side. We were at the keynote, I chaired a meeting and I attended the beginner’s workshop, which was really helpful for finding out about Cochrane, what they do, and sort of the processes within the organization, which can be overlooked if you are already in the research bubble. Today, we’re taking it a bit slower and kind of looking at it from more of a consumer/patient angle; a bit like what the Beyond The Room Team are doing.

SC:

Yes, excellent. Just say a bit more about the research bubble. What do you mean by that, Jess? That sounds interesting.

JR:

[Laughter]. So, everyone’s been incredibly approachable and very, very friendly, but they’re.. I’m… a bit of background, I’m a student nurse and I have had a few placements in terms of clinical research from university but I don’t really know much about research. I haven’t done my dissertation and so a lot of the terminology, maybe the research processes or organizations, especially internationally, I was not aware of before I came and so I have found it a bit hard to get my head around some of the concepts that people have been using.

SC:

I mean, it is a common problem with scientific conferences that many, many assumptions are made about the content and what people will and won’t get and we’ve been running a #JargonBin hashtag in a way to try and address some of those issues but it is a cultural thing, isn’t it? Yeah. So what do you think you are going to be able to take back from this for your nursing career?

JR:

It’s been amazing the amount of nurses that I have met here and I’ve had a lot of, sort of, role models slash mentoring conversations about using your clinical skills in a research setting but not leaving your clinical career behind, which is something I’m quite passionate about. And in terms of my university, I’m in conversations with the Heads of Nursing at the moment and trying to take back the lessons I have learned here, making undergraduates more aware of the research opportunities. It doesn’t just have to be a Masters or your dissertation or you have to sideline yourself into a nursing research job. There are a lot of opportunities here and there to sort of pick and choose. And it’s been really eye-opening and really inspiring for me to see all these amazing nurses and the work that they are doing.

Part Two – podcast and transcript

André Tomlin:

Welcome back everyone to the Cochrane For All podcast.  I’m really looking forward to this interview. I have got Emma Cartwright and Jess Rees here, who are, sort of, two days in to the Cochrane Colloquium. Hello to you both.

EC and JR:

Hello. Hi.

AT:

So Emma, I think I would love to hear a little bit about your story because you, like me, are a type 1 diabetic and you are a recipient of the inaugural Rosamund Snow Prize, as you both are. Tell us a bit about the links between you and Rosamund. That sounds really interesting.

EC:

Yeah, definitely. So, as you say both Rosamund and I have, had, type 1 diabetes and I wrote an article for the BMJ, a patient perspective piece around type 1 diabetes and they sent me Rosamund’s article which she had written, about what life was like living with diabetes type 1 and I…it really resonated with me as I was reading it. I could really see a lot of myself in that. And I started to look up her story and I found that we’d both worked and had an interest in health behaviour research; we’d both done our masters projects on people with type 1 diabetes not engaging with health services; we’d both worked at the University of Oxford in the same…same department and I have now taken up a role with the BMJ, taking over her series, “What Your Patient Is Thinking”. So there are many times our lives seem to have crossed paths.

AT:

Tell us a bit about that series because that is quite an unusual series in the BMJ. So yeah, I really loved the fact that existed and tell us a bit about it.

EC:

Yeah, definitely. So, “What Your Patient is Thinking” series is completely written by patients and edited by patients, and myself and it’s really just an opportunity for patients to write about their experience of something that has happened to them within the health service but with the intention that there is going to be some learning points for healthcare professionals. So, we really like it to be very informal. It’s a very short piece. We just want people to write about something that’s happened to them, that they think healthcare professionals can learn from. So, it’s a very positive kind of series but also a very real series. So, we really encourage people to just write their own story and for it to be very true to life. And for a lot of healthcare professionals, it’s their chance to really read what it’s like to really live with a condition or to go through an experience within the healthcare system or to be a carer and what they have to do and what that feels like, and the challenges they face and what they (healthcare professionals) could do to make those things easier.

AT:

You’ve both been to a major kind of Cochrane Colloquium for the first time. Jess, how’s it kind of worked for you?

JR:

It’s my first ever global conference. I have been absolutely amazed and humbled by the content and the people that are coming out of it and that I get to meet. Only today, I’ve met a lady from Japan, who was running her very own informed consent campaign. And I think it’s been, as a student, eye-opening to see where research can take you, out of…maybe out of the confines of your own university, your own interests, and the power of networking, really, and expanding your horizons.

AT:

And how have you, kind of, found the scientific, researcher, full of difficult words, nature of this?

JR:

So, I’m at…just about to start my second year at university, doing a nursing degree, and my research knowledge is, so far, very limited. And Cochrane have done a really good job of identifying consumer- suitable or ‘tailored to’ events and we’ve actually attended a few of them together. It’s not perfect; there are still definitely key terms you need clarification on, that you need to ask about. It’s been a really good learning opportunity but I can see that you want to feel comfortable to ask those questions and not to feel unwelcome or stupid for raising those.

AT:

And is that about the way those sessions are chaired and facilitated? And the way the speakers, kind of, present their content? Presumably, there’s a big variation in the way that is being done.

JR:

Yes. I think the workshop style seminar events are definitely more open to group discussion and being a lot more vulnerable. I think the plenaries, the keynotes, and some of the oral sessions, where it’s very much being talked at from someone that might be more senior than you or more knowledgeable – I think a consumer or a patient would find it a lot harder to raise a question. But the Jargon Bin work that the Beyond The Room Team are doing is amazing and personally, I found it very useful.

AT:

You don’t have to say that, just because I’m here. I’m not involved in that anyway.

JR:

[Laughter]. Honestly, it has been. Only this morning a man on our table in the workshop…we were in the five minutes in getting to know each other, and he said, “I have a really stupid question but I don’t know the difference between qualitative and quantitative research”. That’s a really big question that hasn’t been answered because it’s assumed that everybody would know it. And so yeah, I thought that was very eye-opening and a good lesson for everybody.

AT:

That’s really interesting. Actually, when Sally asked the question this morning about whether policy makers prefer qualitative or quantitative, she leaned over and said to me, “Should I define what those things are because people probably won’t know that?” And I said, “No, don’t worry. It’ll be fine.” So, yeah, there you go.

So Emma, tell us a bit about your experience of this event. Have you found it, kind of, open and welcoming? Have there been enough patients here?

EC:

Yeah, it’s been really difficult to know who the patients are, and I think in some ways that’s been a really good thing, because it’s been really…everyone’s been really mixed in together and there’s not…there hasn’t been that separation of you’re patients, you’re over there, and you’re researchers, and having that. And so it’s been really nice, actually, that everybody’s just been together and it’s given us a really good opportunity to, as patients, talk to researchers on an open platform. And as Jess said, like in the workshops, where there’ve been small group discussions, it’s been really nice to be able to have those mixed opinions. But I think it would be really nice to have an opportunity to meet other…other patients while we’re here and just to have a space or something to really meet people because that’s something…it’s been really difficult to differentiate who’s a patient and who’s a researcher. So, yeah.

AT:

I guess we do all have that dual role. I was talking to Mark Taylor earlier on, who’s doing one of the keynotes tomorrow, and he talks a lot about his own experience of multiple sclerosis. I’ve got depression and anxiety, and diabetes, and I talk about that a bit, but I’m here as an Elf, as an information scientist, you know, that’s what I’m doing here. So I dunno. How do you think Cochrane can actually be more overt in making patients more the centre of this kind of event?

EC:

I think certainly one of the things that I thought was…certainly with the keynotes that we’ve seen so far, although there have been sessions about patients and about patient experiences, none of those have been by patients themselves. And I think it would be really amazing to see Cochrane take it a step further and have patients themselves talking about their experiences, not just researchers or healthcare professionals talking about patients’ experiences. So, I think for me that would be a really big step forward.

AT:

Yeah. How would that work? So, like for you, for example, with your type 1 diabetes, give us an example of how you think that could work in the context of this kind of event.

EC:

I think there’s a couple of ways. I think certainly, I’ve been to a couple of sessions, smaller sessions, where they’ve had a researcher, who’s been talking about the research, and then also a patient with them, who’s been involved in the research as well, and it’s been a dual presentation. I think that works really, really well because you then get both of their perspectives and also that’s much more interesting, I think, for everybody in the room, then it caters to everybody’s interests. I think that would be one way of doing it. And I think another way is all the stuff that we’re doing in terms of podcasts and twitter and things like that, to have some real patients like us, and you, being able to give our thoughts and themes on what’s happening in the research, so, kind of, translating their presentations through the eyes of a patient, out to everybody else, I think is a great, great way of doing it.

AT:

Yeah, very much so. How about you Jess? Any thoughts on that?

JR:

Just like Emma said. My favourite presentation so far has been one between a speech and language therapist and one of her peer-led research patients, and they’ve blogged about their experience of working together incredibly eloquently, and it’s that sort of role modelling, I think, is really important to, kind of, provide other researchers with a means to see how it can be done. Because it is being done, but maybe isn’t being broadcast and celebrated. So, so far, I think they, Cochrane, have been doing a great job at having dual presentations but there should be more.

AT:

The thing I often hear from frontline nurses is that Cochrane isn’t really relevant to them. Either because there are no recommendations that come out of the reviews, because there’s not good enough evidence to make any recommendations – you know, that’s 90% of Cochrane Reviews. Or actually just systematic reviews themselves aren’t relevant to them, because it’s a different type of evidence, maybe, they’re looking for in the vast majority of their questions. Have you got a sense of that from your training so far?

JR:

Yes, and I came across Cochrane just through writing an essay, really. It is something just as basic as that but that was from the academic side of my work. And the clinical side, as nurses, research is extremely important but kind of shied away from, in the sense of empowering our patients, and I think a lot of the work Cochrane does and produces, its plain language summaries, it’s content for patients. So, as a nurse or a healthcare professional, I want to be able to share this with my patients and sort of give them the resources to digest it themselves, and sort of be the sort of ‘sign-poster’ for the research.

AT:

Yeah, very much so. It’s been brilliant that you’re doing this here and I’m really pleased that you’re here but I’d love to see, like, two hundred of you here, next year.

JR:

Agreed.

AT:

Thanks a lot for talking to me.

EC and JR:

Yeah, thank you, thank you for having us.

 

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Sarah Chapman

About Sarah Chapman

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Sarah's work as a Knowledge Broker at Cochrane UK focuses on disseminating Cochrane evidence through social media, including Evidently Cochrane blogs, blogshots and the ‘Evidence for Everyday’ series for nurses, midwives, allied health professionals and patients. A former registered general nurse, Sarah has a particular interest making evidence accessible and useful to practitioners and to others making decisions about health. Before joining Cochrane, Sarah also worked on systematic reviews for the University of Oxford and the Royal College of Nursing Institute, and obtained degrees in History from the University of Oxford and in the history of women’s health and illness in early modern England (MPhil., University of Reading).

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