The nurses, midwives and allied health professionals (NMAHPs) working in research* who we spoke to emphasised the different benefits their roles brought to health research, including money/investment, changes in practice and improved clinical outcomes, skills/research capacity, and better patient experiences.
While the income generated by the research delivery activities of NMAHPs was seen as important to NHS management, it was not the main or only contribution. Instead, many people enthusiastically emphasised their value to clinical practice and, ultimately, benefit to patients.
Everyone talked about or alluded to the importance of evidence-based practice – meaning that decisions in health and healthcare should be informed by research. As such, the work carried out by NMAHPs contributed to developing knowledge. The potential to ‘make a difference’ through research was very rewarding, often described as “exciting” and a major source of pride. Speaking of working as a research nurse on studies about treatments for newly diagnosed prostate cancer patients, Paul said that “because of what we’ve done, it shows that it’s now the gold standard”.
Vicky saw research as a way to benefit patients, but on a different scale and timeline.
Vicky saw research as a way to benefit patients, but on a different scale and timeline.
Age at interview: 47
Sex: Female
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I guess how I think of it a little bit is that rather than when you're working in the clinical setting, so you're looking after patients, you're able to directly care for them. Whereas research enables you to take a step back, but probably to influence the care of a larger number of people when it can be applied to different clinical settings around the world. So it, it sort of continues my interest in helping to improve patient care, but indirectly. But contact with probably a larger number of people. Sort of going forward in the future.
Graham talked about the importance of paramedic practice being based on evidence, including the outcomes for patients once in hospital.
Graham talked about the importance of paramedic practice being based on evidence, including the outcomes for patients once in hospital.
Age at interview: 40
Sex: Male
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For us as paramedic’s, research is quite a new thing. Pre-hospital research in general is quite a new thing, and research led by or involved paramedics is, is a relatively new thing. 10 or 15 years ago it, it really wasn’t happening, so it’s, it’s quite a recent development. So going out and talking to the paramedics, getting them involved, getting them interested, that’s been a bit part of a lot of these studies, now I’m doing a lot more in the background with the data and collecting data and collecting outcome data and linking up our data with patient outcomes, and certainly in my own work there’s been a big element of linking up the pre-hospital data with the in-hospital, ‘cos often we, as I say, we don’t know what happens to the patient, we don’t know the final diagnosis, we don’t know the outcomes. But that’s what we need to actually inform our practice and trying to find those and build those bridges and build those links in, is what allows us to change and judge the effectiveness of what we do. So trying to work in that sort of arena has been a big part of what I’m doing at the minute.
Ever since he started training, Gavin felt there needs to be more evidence underpinning podiatry practices. He hopes to contribute to this through carrying out research.
Ever since he started training, Gavin felt there needs to be more evidence underpinning podiatry practices. He hopes to contribute to this through carrying out research.
Age at interview: 42
Sex: Male
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Well I qualified, back in 1998, so and I was, I was interested in doing research then and at that point, and I was quite interested in doing a PhD but the, the landscape wasn’t as well developed and there wasn’t really any fellowships around about at that time. So, I just went and started working clinically, but I think what kind of drove me to do it was that I wasn’t-, when you’re, when I was taught at undergraduate, the stuff I was taught seemed-, podiatry is very much like it’s almost like a craft. So it’s very kind of hands on, and it was clear to me from an early stage there wasn’t an awful lot of evidence [laugh] underpinning what we did.
Okay.
It was just, a lot of it was like folklore, almost just like kind of handed down from generation-to-generation. And there was no clear evidence base or at least as-, we had a sort of a smattering of research methods that went into an undergraduate course, we did sort of basic statistics and sort of critical appraisal. But it was very much a kind of an add-on type thing. And so I was interested in ‘what is the evidence for any of the interventions that we tend to do?’ from quite an early stage.
There were lots of examples of research carried out by NMAHPs leading to improvements for patients (in terms of clinical outcomes, safety and quality of experiences), as well as for the staff and the NHS overall. Carole, a research midwife, was
motivated to work in research because “my burning aspiration was to promote better standards of health for women and I think one of the ways to do that is in clinical research”. She explained that health research is not only about “finding cures” and there are many other aspects, including “prevention or early detection and management” of illnesses.
Research NMAHPs as enablers
Many in research NMAHP roles saw themselves as being central to connecting up people and processes (e.g.
working with others like the research team, study coordinators, funders, ethics/research governance support, non-research clinical staff*, and patients) so that research could proceed. Helen described research nurses as “the glue that keeps it all together” and, along with Paul and Ellen, talked of being a “cog” helping the ‘machine’ of research keep turning.
Osi described the activities of research midwives, making them “the oil to the system”.
Osi described the activities of research midwives, making them “the oil to the system”.
Age at interview: 27
Sex: Female
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Research midwives – so, they’re almost like just the everything, they’re the-, they usually know the protocol inside out, they're the ones that find the patients, keep the patients, approach the patients sometimes. And I think they kind of bring-, they're almost like the oil to the system – they make things like happen and happen smoothly, although it doesn’t actually happen smoothly, they kind of keep things going. And very good at bringing all the different specialities or things that need to-, the different departments together, in order to actually complete it. I think they’re pretty good.
Ellen realised how her role fitted into the bigger scheme of patient benefit when she attended a conference early on in her research post.
Ellen realised how her role fitted into the bigger scheme of patient benefit when she attended a conference early on in her research post.
Age at interview: 50
Sex: Female
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And it took me going to a conference, a national conference, quite early on, when the bigger picture clicked into place really. There were big presentations and things, and pictures of maps and [laugh] where we all fitted in. And I thought 'oh yeah, it's a big-, I'm a tiny little cog in a massive machine. But you need all those little tiny cogs’. And then you, as you obviously know, you're changing- changing patient care and changing practice. And if it wasn't for research, all the little things I'd been doing as a ward nurse, I wouldn't have been doing [laughs], because we wouldn't know about them.
For Vicky, research nurses make connections between people and enact the research on the ground with patients. As a nurse researcher, she is involved in other activities too, such as study design.
For Vicky, research nurses make connections between people and enact the research on the ground with patients. As a nurse researcher, she is involved in other activities too, such as study design.
Age at interview: 47
Sex: Female
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So there's lots of research activity that requires more time and different skills than other roles within a research team could, could actually do. So thinking in terms of the PI, they perhaps have limited time, working across lots of different studies. Whereas a research nurse actually can have a bit more time to develop a relationship with participants, to actually as I say collect contextual information about the experiences of people taking part in the study, and how the study is received by potential participants. How it actually works on the ground. So you might have designed the way that data is collected but actually in practice when you see how it's collected and you have experience of collecting that data, you can see it's quite different. Which can help not only that particular study but also when you're designing studies in the future. So you can, you can sort of tailor how you collect data, for example, based on your knowledge of how it might work in that situation. But also as I say understanding that the patient experience varies in different populations. So it might be a population you have particular experience of or it might be a particular study design you have experience of, that you can contribute in that way as well.
And you can also [sigh]. I think part of the role is that sort of translating the sort of research world into the clinical practice world and back. So that can help both how the study is conducted in practice, but also how studies can be designed as well. Bringing that sort of experience back into the, the sort of research team as well. So you, you have a sort of translation role a little bit, if you like. And that can be everything from sort of language used, to how things work or don't work.
Caring for patients in research
Many people felt that the skills, values and patient-centred approaches of their professional group enhanced their research activities. Helen explained how research nurses “know that patients might be upset, we know our patients are vulnerable but we know how to handle that” whilst providing them with access to research opportunities. Some people felt patients (and the health professionals caring for them) might feel more confident and trusting knowing that the person supporting them through research was a qualified health professional. Claire said that, in some studies, it was “incredibly important to have nurses as it may require [them reading] body language and other observations”.
Some people highlighted that many treatment options and pathways currently in use would simply not be available without previous research. As well as helping future patients, some NMAHPs emphasised how they and their activities could benefit current patients too. Taking part in research could offer choices and options to patients which were otherwise inaccessible. As Simona explained, “When you’ve exhausted the resources for helping a patient clinically with whatever was clinically available but you had a possibility of probably try[ing] something a bit more via research”. The benefits could also be emotional as well as clinical. Sandra felt her role in providing research access was about choice for patients, which can be especially important to patients “when they feel they’re out of control of everything else… Whether that’s to take part or not take part, but it’s that freedom for them [to choose]”.
Michael said he used his nursing skills and values in supporting eligible patients to make informed decisions about research participation.
Michael said he used his nursing skills and values in supporting eligible patients to make informed decisions about research participation.
Age at interview: 29
Sex: Male
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And that in essence is the art of being a research nurse. It’s not all science because you know on paper this person might have a performance score of zero, they might have good social support, and they might feel physically not too bad, but if after three weeks of a clinical trial they’re exhausted and, you know, they might have bad venous access and their arms are getting really sore from repeated cannulations, and they don’t want a PICC [Peripherally Inserted Central Catheter] line. Then you have to decide ‘well actually it’s probably not appropriate because this is affecting your quality of life’.
And I think as a nurse no matter where you are, no matter what ward you’re on, or whether you’re a research nurse or a nurse, you are primarily the patient’s advocate, you are there to look at the psycho-social holistic care, “How are you managing with life?” And if that’s becoming compromised it’s your job, I feel, to bring up that conversation of, “How is your quality of life? Is this something you want to continue?”
A study Nicky was involved with offered patients the opportunity to try a technology otherwise inaccessible to most. Both patients and the nurses caring for them saw this as having a lot of potential benefit.
A study Nicky was involved with offered patients the opportunity to try a technology otherwise inaccessible to most. Both patients and the nurses caring for them saw this as having a lot of potential benefit.
Age at interview: 52
Sex: Female
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Cos I think, I think it’s changing the mind set a bit about research, cos I think people sort of think ‘oh research is something that, I don’t know, using people as guinea pigs or whatever, and there’s nothing in it for the patient’. But we’ve since had a few studies where there is something, a lot more in it for the patient, in that one of the studies we do we’re giving the patients an opportunity to try a continuous glucose monitoring system that they wear on their arm. Which means that they don’t need to finger prick so much to test their blood glucose. And so, and it’s a device that’s available on the market to buy, but it’s, you know, relatively expensive and not everyone can afford to buy it, and it’s not at the moment available on the NHS. So we were able to, we were getting quite a lot of people onto this study, so we were asking the diabetes nurses to refer people. And so, I think they began to see that actually this is a study which is really nice for the patients, they’re getting to try something that’s really helping them, you know, for a couple of weeks, and it can, you know, really help with their diabetes, and all the rest of it.
Rachel Y was involved in research which challenged outdated guidelines causing radiology patients unnecessary distress.
Rachel Y was involved in research which challenged outdated guidelines causing radiology patients unnecessary distress.
Age at interview: 53
Sex: Female
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When I first went into radiotherapy we were using very different equipment, and we were very strict on how patients looked after their own skin, where we were treating them. So we didn’t allow them to wash that part of their skin, which if it’s something like a breast for example, that’s quite a large area. We didn’t allow them to use deodorant under that particular armpit, shave that armpit, wash, or anything. Now back then when they were going through six weeks of treatment, that’s not a very nice thing to do to a lady who’s feeling already pretty bad about her body image, quite frankly. So we did I did a lot of research on radiotherapy skin care. I’ve even gone across to Canada and worked with some of our Canadian colleagues on this, and they’ve just followed another piece of the work that we started here.
Thanks to research now, and checking everything out properly, our guidelines here as a professional body now say, let patients wash, let patients use deodorant, let them use the skin care product they want to do. It won’t make any difference. The reason we used to say that was when we were using different equipment that caused different reactions. We were still making patients do that, even though the way we treated them had changed. So our, part of our practice had moved on, but part of it hadn’t gone with it. And thanks to research I would say again patients have, now have a better experience. So that will always be my selling point. And nobody will ever convince me otherwise, that if you don’t do research you might believe you’re giving patients the best imaging or treatment experience, but I would argue very strongly that you can’t be. Cos unless you have reasons for why you’re doing what you’re doing, based on evidence, you could actually be doing things to patients that don’t need to be done.
There were examples of new resources or services developed as an off-shoot of research. One of the studies Barbara worked on led to the development of a specialist clinic for women with genetic predispositions to cancer. Rachel Y established a support group for people with head and neck cancers. She invited along speakers, such as a dietician and a dental hygienist, to address gaps in patient knowledge which she had identified through her
Master’s research.
Addressing clinical problems and improving practices
Their clinical backgrounds gave research NMAHPs and NMAHP researchers’ hands-on insight into the clinical environments and practices that research was seeking to improve. In addition to working in research, some people also worked in non-research clinical posts – as a split post, as a separate post or as part of a bank. Louise’s split was three days a week as a research midwife and one day on the antenatal ward, and she thought that the two complemented one another: “you can see areas that need improving and try to contribute to the bigger picture”.
Familiarity with healthcare environments and the responsibilities of other members of the workforce could help NMAHPs better negotiate or at least understand some of the barriers to conducting research in clinical environments. This included when/how to approach patients about a study and finding rooms to see participants in. Vicky thought her background as a nurse helped her to “understand the language used, [and] navigate our way round clinical notes” in the course of carrying out research with patients.
There was a sense for some that their health professional background gave them credibility with
their non-research clinical colleagues, who would then be more likely to accept and engage with their research activities. Mary thought her split role as a health visitor and researcher helped challenge negative attitudes about “ivory tower” research, by conveying that she did “understand the world of practice” and “how hard it is to change things”.
Sandra thought that her background as a nurse mattered to her clinical colleagues and reassured them that she had prioritised patients.
Sandra thought that her background as a nurse mattered to her clinical colleagues and reassured them that she had prioritised patients.
Age at interview: 43
Sex: Female
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We do have colleagues sometimes find it difficult to they want to protect the patients. So they don’t want to feel that they are creating a burden or adding things for them to do, but if you can help them to see that it’s about choices, we’re all about choices. You would never say you can’t have this, you’ve got to have that, it’s choices all the way. So, if we can give them, research should be a valid choice for everyone, exactly the same as anything else. And if they say no, that’s okay. And I think being a nurse helps to overcome some of those barriers with colleagues, cos I can, you know they can see I’m a nurse, we’re on the same page. Patients are our priority. Nothing else is more important than the patient. And I think because they know that they then start to trust the process a bit more, so they can be more engaged.
Dawn felt her familiarity with clinical environments was an asset in helping research studies to run smoothly.
Dawn felt her familiarity with clinical environments was an asset in helping research studies to run smoothly.
Age at interview: 55
Sex: Female
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I think it’s knowledge. For me in my role in my Trust, and it may be different in other Trusts, so it’s my knowledge of not just nursing children, whether it’s on the children’s ward or in the neonatal unit. I think it’s a knowledge of processes, whether that is electronically, how-, where to get information from, which system to use, cos we don’t just have one system for one thing. Or it’s a process of if you’re wanting to do swabs for example, where is the equipment? If you wanted to do a throat swab and the study team provide everything, they might provide a swab but they might not provide a tongue depressor, so if you’re on the ward and you think-, or outpatients, and you think ‘where’s the tongue depressors?’ rather than asking other staff and the knowledge of where. Just little things like where things are kept. Where the lab is? What kind of bottles to put-, which bottles to put in what, what samples for bloods and things? Where to get that information?
When-, it’s because if I do bloods on children for studies I always contact the consult-, we liaise. So for the diabetes children, so we liaise with their consultant, because we’ve got a window of time to get the bloods for them. So the consultants may have bloods that they want doing within that six-month window. So and we liaise with the consultants then we do our bloods and I do their bloods alongside our bloods. So, but some bloods- so I might need to go off on a morning before 12 o’clock because of where they’ve got to go to. So it’s a, it’s about knowing like all, I can’t know everything, I’m not saying, I don’t know everything but it’s, it does help knowing how the wards run, what time the handovers are, where certain people will be at certain time, specialist nurses, which specialist nurses do what and work in which areas.
Supporting colleagues to engage with research
Many NMAHPs we spoke to also described ways they contributed ‘back’ to their wider professions and teams. This included using the research skills developed to add to the discipline’s knowledge base and foster a positive attitude towards research amongst others. Examples included:
- helping non-research colleagues become more savvy about using published findings;
- nurturing colleagues’ research skills by offering opportunities for them to gain hands-on experience (including through secondments);
- raising the profile of health research to patients, which often demonstrated its value to clinical non-research colleagues at the same time; and
- helping educate students in the profession (via teaching and placements).
Tabitha ran a seminar for midwifery students about a study she worked on. There were also some studies which, if the outcomes were rolled out, could help reduce or simplify workload pressures on clinical non-research colleagues in the future.
There are many ways that Helen and her colleagues have tried to raise the profile of research and how it contributes to improving healthcare.
There are many ways that Helen and her colleagues have tried to raise the profile of research and how it contributes to improving healthcare.
Age at interview: 53
Sex: Female
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Yeah, it’s something I feel so strongly about, really strongly about. So the, the sort of things to raise the profile, I mean we do do quite a lot in the Trust. I mean obviously we’re limited with time and we have been subject to funding cuts so we are, you know, quite thin on the ground but we, well we do celebrate International Clinical Trials Day so we go round the hospital. We, the last time we did that, last May we actually took a cake trolley round, that was much better than actually having displays in certain areas in the hospital but I think the patients and public don’t always wanna come up to a display particularly if there is a few people standing by it so the, the coffee and the cakes, that went down really, really well and I think we did raise the profile. We’ve done a few interviews on our local radio station, we go out to-, myself and my colleague go out to schools to talk when we can. We present at charity events, Rotary, things like that where we can. And for about the past four years, I pushed but I managed to get myself onto the student nurse the undergraduate training course so and I’m trying to get more student nurses to come and spend some time with us as part of one of their placements. And that wasn’t easy because even getting the clinical placement facilitators, I don’t know what their job title is now, to understand that our role was like a CNS [Clinical Nurse Specialist] and to try and encourage student nurses-, and we did have a student nurse who came in quite recently and really enjoyed it.
Gavin felt that his research skills could benefit his profession of podiatry, such as using them to address clinically relevant questions and supporting colleagues to use research findings in service development.
Gavin felt that his research skills could benefit his profession of podiatry, such as using them to address clinically relevant questions and supporting colleagues to use research findings in service development.
Age at interview: 42
Sex: Male
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But I hope once I’ve kind of come to the conclusion of my PhD, ‘cos I’ve learnt lots of skills, I’m doing ethnography, I’m doing quantitative methods as well, so it’s a mixed methods PhD. I’m really hopeful that I’ll have a set of skills that is going to be incredibly useful to building up the evidence base for my own profession as well.
Mm. Yeah.
So, it’s, whilst I’m interested in the topic it’s also, a vehicle for learning skills.
From a departmental point of view, they have never had anyone that is interested in research. So I’ve kind of, in a, on a, in a-, within my clinical capacity there’s a, anyone within the clinical department. So there’s a recognition that I know about this stuff, and no-one’s expecting anyone in the NHS-, everyone, no-one’s expecting everyone to be research active like as I am, you don’t need that, but what the NHS does require- and I think something that I’ve contributed to over the past, you know, informally over the past ten years when I’ve been involved in this type of work is almost- teaching is probably the wrong word, but showing clinicians how to be consumers and users of research, and that has been a very definite outcome and in terms of management. So my, our line manager, they like that because in these days of limited resources there’s a constant need for clinicians to be justifying their existence. And research feeds into that readily, and with me being in that role, I can-, you know, simple stuff that you and I would take for granted, things like doing a proper search within multiple electronic databases, using key words for relevant literature, that kind of thing, you know. I, that’s stuff that no-one else has the experience to do reliably and successfully, so I can do that. I can locate stuff, information for them – whilst it’s not relevant to my PhD I can bring out evidence, so if they ask me about, so say, podiatry as a profession is in terms of patients hugely oversubscribed and there’s quite, an increased level of interest in developing self-management strategies for podiatry patients. So, for instance I’ve been, pull out some literature that was relevant to that, give that to our line managers who can then put, pass that onto the board and it gives them a sort of like justification for the way that they’re developing the service. So, it, whilst me myself I’m not that interested in being a service manager, I think research skills that you bring to the party can massively feed into service development, and I’m quite happy to do it and that. So, it kind of straddles that. So, they see the value in having someone with those skills.
Demonstrating the value of research NMAHPs
For NMAHPs employed in research delivery, being able to demonstrate the value of their role was important. Often people spoke about the need to counter negative stereotypes or misunderstandings held by others, including their non-research clinical colleagues, and many people expressed the feeling that they were not valued or appreciated as much as they should be. By asserting their value, it was hoped this would re-balance the situation and, ultimately, allow them to sustain and grow as a professional group.
Claire talked about the importance of providing evidence of the value of research nurses, to avoid inappropriate changes to the research workforce.
Claire talked about the importance of providing evidence of the value of research nurses, to avoid inappropriate changes to the research workforce.
Age at interview: 35
Sex: Female
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[The future of research nursing] looks bright as long as we take responsibility and evidence the value of our roles. We all know the value but without evidence our roles are likely (and in some cases already are being) to be swapped for lower levels, grades and those without professional qualification.
I'm aware of many more job titles across the country and I believe it really poses a problem to the workforce having such a huge variety. It is difficult enough to demonstrate what we do, to raise our profile and show our worth – having a multitude of titles does not show how valued the research nurse role really is. I don't think we're doing ourselves any favours by not rectifying this or having some sort of national system. The variety is a detriment to a role which is incredibly important. Job titles have been discussed for years when it comes to research nursing roles and unfortunately I think this takes over discussions about the actual value of the work they undertake.
However, showing the value of research NMAHPs could be challenging. Many felt that a lot of their contributions (to patients, staff, their organisation/institution, and beyond) could not be neatly captured or calculated. This included contributions to making research-positive work environments and various aspects of
patient support. Some people felt that the way research NMAHPs are a “bridge” or “link” between different people and organisations was not always recognised as valuable, and that this also complicated any attempts to identify the specific contributions of an individual or team of research NMAHPs.
In their roles, many research NMAHPs faced challenges (e.g. when they were first
adjusting to a research role from a very ‘hands-on’ clinical job and when they were under a lot of pressure in their
research delivery activities). Keeping sight of the ultimate aims of their activities—to improve health care and benefit patients—could help maintain their motivations and sense of value.
Footnotes
*The people interviewed for this website were mostly research NMAHPs (i.e. those employed in a research delivery role). However, we also interviewed some NMAHP researchers (i.e. those leading research as independent researchers). The latter group included people who were undertaking or had completed academic research qualifications, such as PhDs, and many had previously been in (or continued to also be in) research delivery roles. For more information about the distinctions between these roles and the sample of NMAHPs interviewed for this project, please see the
Introduction section.
*Many research NMAHPs and NMAHP researchers felt strongly that they continued to be clinical within their research roles. As such, the wording of ‘research’ NMAHPs/staff and ‘clinical’ NMAHPs/staff can be problematic for implying that research is not also clinical activity. Where the wording ‘clinical staff’ is used on the website, we mean for this refer to non-research clinical staff (i.e. those who are not currently employed to carry out research or enrolled to pursue research through an academic qualification).
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