Giving support to patients and participants was a core part of the role for nurses, midwives and allied health professionals (NMAHPs) in research*. Most people felt this was where their professional backgrounds, skills and knowledges really came to the fore as well as their values of patient advocacy and choice. Melanie thought she brought to her role “all those [nursing] skills and intrinsic sort of things that you’ve taken on board that I don’t really think about anymore, they're just a natural part of who I am”. Sandra commented that “I still tend to call them patients [rather than participants] …I think that might be the nurse in me maybe”.
Although she felt there were definite differences between working clinically in a non-research capacity, Sian liked that there are sometimes opportunities to help patients/participants in the course of research.
Although she felt there were definite differences between working clinically in a non-research capacity, Sian liked that there are sometimes opportunities to help patients/participants in the course of research.
Age at interview: 48
Sex: Female
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How else it compares, it’s different because you’re not giving, you’re not really giving, you’re not giving treatment, you know, you’re delivering what the study is asking you to do. But I am a nurse first, so if a patient presents with a problem if it’s something that they just happen to discuss with you because they like to talk to people they don’t know I can signpost them to the right place. Sometimes throughout the process of actually completing the CRF [Case Report Form] you’ll find a high blood pressure or a very fast pulse and I think that’s great because it means that you’re able to pick up that, take it back to the GP and the patient is gaining in their care experience by having that. So I, I actually find that bit quite exciting because I know that research shows that if you take part in research even if you’d had nothing done to you as such you, your care improves, your likelihood improves so I think that’s really fantastic, you know, by having nothing done to you, yeah it improves so that’s great.
So that’s quite rewarding for me as well that I can be doing the research and then sort of have other issues sign post them off and think well even though I’m not in my kind of nurse caring capacity doing, delivering care I’m still looking after the whole person so it’s still holistic, yeah.
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?”
As an art psychotherapist, Jed had a number of skills which he could translate into supporting research participants.
As an art psychotherapist, Jed had a number of skills which he could translate into supporting research participants.
Age at interview: 44
Sex: Male
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As a psychotherapist you’re sitting with a lot, you know, you sit with a lot of processes and distress, and trauma and, you know, therapy is not always easy, it’s not always comfortable, and it doesn’t always make you feel better straightaway, you know. And so some of the skills that you need to sit with stuff rather than stepping in translate really well. So how you’re being with me now, you know, you’re not leading my questions, you’re listening, I'm sure that there are things that you could say that you’re not saying. And, and in a way I found that some of the skills that you learn when you train to be a therapist are really helpful when you’re learning to be a researcher, particularly if you’re doing interviews and qualitative-, if you’re doing work with people rather than samples, I can’t really speak for the world of quantitative research really, or, or sort of, you know, lab based research. But I think if you’re researching with people, [laughs] there is definitely something that, there’s a real overlap.
The other time that it’s really come to the fore I guess is in the methodology side of things. So thinking in a different way about how you collect data. How you analyse data, how you look at data. What are the risks of asking people to produce things in a particular way? So there’s quite a, there’s quite a focus on using visual and creative methods now in qualitative research. There’s not always the same consideration to the risks of doing it. So I’m often the one putting my hand up saying, “Yeah but sometimes you might plunge somebody into a really difficult place by asking them to make that out of Lego, you know, Lego might trigger them off to somewhere, you know, you’ve got to be able to then support them”. So when I went to ethics and said what I was proposing to do, I didn’t get lots and lots of sort of concerns raised about what I was doing because I was a therapist. So I was able to kind of, I suppose reassure the committee that if people did become distressed (a) you know, I work with people with mental illness and who are dying every day, so it’s my normal. And it’s their normal cos it’s their experience, and so if they became distressed in an interview that I would be able to cope with that and support them, but also that I would know who to refer onto and at what point.
NMAHPs in research delivery roles supported patients and participants in many ways. Some NMAHPs also had experience of other activities that were patient/participant/public-facing and could be supportive, such as raising awareness of health research amongst patients and the public. Katherine’s Public and Patient Involvement (PPI) activities were an important part of her doctoral research on augmentative and alternative communication aids for people with speech difficulties.
Katherine had learnt about the best ways to engage her PPI contributors, including “pictures-based resources”, and she planned to use these approaches in her recruitment resources too.
Katherine had learnt about the best ways to engage her PPI contributors, including “pictures-based resources”, and she planned to use these approaches in her recruitment resources too.
Age at interview: 38
Sex: Female
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So when I first started the PPI group I followed all the guidance, I had lots of easy read documents for them, and an agenda which I sent out in advance so that people could plan and prepare for the meeting. And I felt the first meeting was kind of okay, but that the group members weren’t as involved as I’d hoped, they hadn’t maybe prepared as much as I had thought they might. And they really didn’t engage with any of the paper-based resources that I provided, so the sort of easy-read, I had shown them participant recruitment information for example, and the easy-read leaflets. So, I had given them like the ones you had shown me, I had sent them round by email in advance, I’d brought paper copies to the meetings, and they barely looked at them.
And the feedback from that group was largely, “We, we can’t engage with this sort of media, this material isn’t suitable for our needs.”
So, I used loads of pictures-based resources, annotated all the minutes, I came up with an audio-visual tool which I put on YouTube, and posted people the link beforehand so they could see what the agenda was for the minutes and again used pictures and head shots for that. And within the meeting itself I had some sort of practical activities that the group could engage in, and the following group went much better, people were much more engaged, there was a bit more of a dynamic. People were kind of talking much more with their communication partner, or with their facilitator within the group, and we got much, we got some really nice outcomes from that. And generally the feedback on the resources that I showed them this time round for participant recruitment was much more positive. People really liked the videos, they really liked the pictures on the sheets, the fact that it was colourful, the words were simple, all that sort of thing.
Patient contact – quantity and quality
Some NMAHPs found working in research involved them spending less of their overall working time in contact with patients compared to their previous (or ongoing) clinical non-research roles*. Usually this reduction was a result of them spending more time doing paper/computer-based work related to the research.
However, many found that the quantity of time spent with each patient/participant had increased and that there was room for more flexibility around this. As Osi explained, “you're able to sit there [with the patient] and, especially with the instrumental deliveries, just ask them how it went [without] thinking 'oh my gosh, I need to go and see another patient within like the next ten minutes'”. Claire commented that there was “far more one-to-one contact”. Some NMAHPs felt this provided them with the opportunity to give meaningful and potentially ongoing emotional support.
In some studies, NMAHPs were able to build up a deep rapport with study participants – although this varied (e.g. number of visits, duration of visits, duration of study participation). Sian felt it was important to “build a relationship” with participants, even if she was going to see them for only a one-off visit, in the hope that “when future studies come through the door, they’ll come back again”. At the same time, several people emphasised that the rapport and relationship should not become a pressure for patients to participate.
Jo felt that the relationships she built up with participants in studies was one of the “best things about the job”.
Jo felt that the relationships she built up with participants in studies was one of the “best things about the job”.
Age at interview: 49
Sex: Female
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Oh it’s definitely, you know, one of the, one of the best things about the job because you really get to know people very well and, you know, you see somebody on a monthly basis or a three monthly or a six monthly basis over, you know, a lot of the trials that I run now are in their fourth and fifth year so, you know, it’s a, it’s an ongoing and enduring relationship and it’s you know on both sides I think it’s really therapeutic in some ways. And, you know, even though you’re not in, you’re not responsible for their clinical care they’ll often tell you things and so that you can pass that on you know, there’s lots of different, you know, benefits I think of having that point of contact and then being able to you know, even if I can’t resolve whatever it is that they want, that they’re concerned about I can certainly speak to, you know the nurse, the clinical nurses, the PI’s [Principal Investigators] and, you know, some resolution will always will always be found. I think that, you know, it is, it’s definitely beneficial to get to know patients in that, you know, in that capacity because in the clinical world, you know, you’re time is very pressured.
Nicky liked having the scope in research to “treat people the way you would have liked to” if time had been permitting in clinical non-research roles. However, she also missed the relationships built with patients in this context.
Nicky liked having the scope in research to “treat people the way you would have liked to” if time had been permitting in clinical non-research roles. However, she also missed the relationships built with patients in this context.
Age at interview: 52
Sex: Female
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So, I think sometimes the sort of view of research nurse is that kind of we’ve got plenty of time to sort of sit around having cups of tea, and that sort of thing. So, but then I sort of think ‘well I’ve been a nurse for years, I’ve, you know I kind of know I’ve done all that other stuff as well’, so I kind of, and I usually say to people if I see them at study days, I say, “Well you should give research nursing a try, cos actually I think the thing that’s nice is you’ve actually got time to spend with people, so you can actually treat people the way you would have liked to have treated them when you didn’t have the time when you were doing one of your other roles.” You know, you can really spend the time talking to people and trying to, you know, sort of help them out and that sort of thing.
Then I, but then I think there is a part of me that misses kind of being a clinical nurse, where you’re the person that’s kind of helping somebody, as it were. And, you know, and I suppose that’s why I became a nurse in the first place. So there is a part of me that misses, misses that side of it, sort of being the person that, you know, I don’t know, a patient kind of, you get that relationship where you know you’ve sort of helped somebody and, and you’ve sort of built up a bit of a relationship through that. And, although you do build up relationships with research participants sometimes, if they’re there over time, it’s different.
Ginny felt there needed to be a balance in a research nurse role between building rapport with potential participants and being a “neutral voice”.
Ginny felt there needed to be a balance in a research nurse role between building rapport with potential participants and being a “neutral voice”.
Age at interview: 53
Sex: Female
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I wouldn’t say that I have a particularly kind of close relationship any different to the nurses really, I think that they in a way, I think in a way you see I’ve just done that thing about going particularly with IVF [In-Vitro Fertilisation] I don’t know if it is particularly with IVF I think with whatever it is that the nurses are working on that’s, is the nursing role or at least it should be, I think, is the whole holistic patient-centred thing you know, they often build up good relationships with people and different relationships and sometimes not so good but they have a relationship that’s not a kind of removed objective clinical one. And I think the research nurse person is slightly different, I think it’s a bit of neutrality going on and I don’t think that’s such a bad thing I think if it was kind of, kind of really friendly, I mean it’s not that it’s friendly I don’t think it’s particularly, I don’t feel like it’s close and I don’t think you can have that, so I think you need to have a little bit of objectivity somehow.
I’m not doing it on purpose particularly but I think that’s how it is I don’t think, I think there’s a bit of a, insider/outsider thing I think you’ve always got that slight barrier I think.
Maybe that’s not such a bad thing because I think theoretically I think we’re supposed to be a neutral voice anyway. So that’s the other thing, funnily enough that’s going back to the recruitment thing as well so if the role of a research nurse is to recruit people to studies that’s kind of really against that idea of them being a kind of autonomous, you know, an independent voice to be able to tell people about the study neutrally and all the rest of it because you can’t, if you’re trying to get people to do something then clearly you’re going to use persuasion and make things attractive otherwise you wouldn’t be doing it so.
A few people felt it was important to be flexible when making arrangements for taking consent and study visits. As Carole said in the context of being a research midwife, “you can't exactly have it all your own way, you've got to work around women”. In some studies, it was possible to fit around appointments that patients already had booked. However, finding appropriate spaces in which to see potential participants could be a challenge. Some NMAHPs offered home visits, or check-ins over the phone, to help accommodate the preferences and needs of participants.
Supporting patients and participants
Several people highlighted how important it was to be sensitive when approaching patients or their families about research – particularly if they had just received ‘bad news’. Many of those we interviewed said they would not approach if they felt it was inappropriate to do so at that time, and insight from other colleagues caring for the patient could help with this decision. At the same time, this was balanced against wanting to provide patients with access to research opportunities and, as Ellen said, the fact that “your trial might be helping” people. In certain situations, such as paramedic and emergency research involving unconscious patients, the typical model of approaching, recruiting and consenting patients was not always possible.
There were different approaches research NMAHPs took to introducing themselves and studies to patients, and in some situations they were introduced initially by other staff. If approaching on their own, some people also found it was helpful to mention early on that they worked with the patient’s consultant.
Sanjos would first see the patient with a consultant who would explain the study. There would then be a separate opportunity to discuss it with the patient.
Sanjos would first see the patient with a consultant who would explain the study. There would then be a separate opportunity to discuss it with the patient.
Age at interview: 38
Sex: Male
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Because that is a good-, that basically makes a good relationship with the patient, that starts the good relationship with the patient because once they may have some other questions which they don’t want to ask the consultant but if it’s a specific consultant based question I would redirect it to them. Whereas if we can answer those questions, then we try and answer them with the patient when we separately talk to them in the clinic, which is a good idea so we go in-depth about trial, where the trial is coming from, more about the background about the trial and how the patients benefited from it and what are the-, with regards to benefits and, you know, non-benefits about the trials. Which is quite good because the patients want to know everything before they sign up for the trials, so obviously quite a lot of shared decision-making, informed consent, you know, informed decisions about the patient wanting to enter into the particular trial. Sometimes it can be quite complex-, complicated for the patient to ask the consultant of the time and date of such studies so they depend on us to, because we are the specialist research radiographers, we can go through a little bit more. We can spend our time more with the patient to discuss the study more.
Which actually helps the patient and also for our own professional, you know, betterment as well, it’s good.
Helen found patients were more receptive to hearing about research opportunities when their consultant’s name was mentioned by research NMAHPs.
Helen found patients were more receptive to hearing about research opportunities when their consultant’s name was mentioned by research NMAHPs.
Age at interview: 53
Sex: Female
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Just another little thing that we do as well is we don’t just sort of come in and, you know, see patients and say, you know, “I’m, I’m part of the research team,” what we always say is “I work with your consultant and he or she has asked me to come and see you today.” And that’s made quite a big difference because we had a study several years ago now where we just went up and saw patients and we were getting quite a, quite a high, patients were declining and then we changed our tack a little bit and then we started saying oh, you know, “Your consultant, Dr A, has asked us to come and see you today,” and straight away you’ve got that, “Oh, okay, is that, alright, okay,” and then, you know, and it was an observational study but recruitment increased [laugh] significantly just because, because of that.
Alice worked on several studies and had to approach patients in different circumstances. Since being in the role, she had started explaining to people why she has approached them about the research.
Alice worked on several studies and had to approach patients in different circumstances. Since being in the role, she had started explaining to people why she has approached them about the research.
Age at interview: 29
Sex: Female
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So it depends on the setting, so obviously in fertility it’s a different setting compared to gynae, maternity. So obviously maternity tend to be a bit more jolly as someone is having a baby so that’s good but if I’m, if I’m attending someone who maybe had a miscarriage or is a, has had a bleed and might be about, and might, you know, might be worried about their baby’s health and the pregnancy at early stages then I try to look a bit more maybe professional maybe just, you know try to listen a bit more serious. And in fertility I think it’s again different because patients tend to want to be listened more and have higher expectations because obviously fertility takes long not, I mean it’s just a long process that you have to go through in order to have a baby and some patients have been trying for a baby for a few years unsuccessfully and they’re very frustrated so they’re very, very delicate so any words if it’s not said in the right way can really affect them and affect their perception of the care they’re having which may or may not be reflective of, you know, reality.
But I think it’s yeah communication in fertility is a lot harder than maternity where, you know, you, someone’s having a baby so they’re happy, excited they might be worried about things obviously it comes with the package of anxiety but it’s a different it’s obviously a different layout. So now I’m mainly working in maternity so if I approach someone who is having scans or while they’re having scan I will try and keep it brief because I don’t want to interrupt the you know, the relationship with the sonographer and the patient but obviously because I walk in the room I would say ‘Hi I’m the research mid- I’m Alice I’m the research midwife and I’m just going to have a look at the notes to see if you’re eligible for one of our studies if you’re happy with that?’ and most patients are because it’s just about checking if they’re eligible they don’t have to, you know, make any, any agreement or they don’t have to then take part in the study.
So I will check the notes and then see how they interact with the sonographer and then I will say to the sonographer if they’re eligible and then I, they will wait for me outside the room once the scan is finished and then I will then see them and introduce myself again and explain in a bit more detail what the study’s about and why they’re eligible, that’s another big problem, sometimes we even say to the patient why them.
I think it’s, it’s something maybe I wasn’t doing when I started and, and some patients are very defensive about why me why would I want to be a guinea pig or why I would want to be, you know something that just an experiment and it’s very important to say, you know, you’re eligible because this is your first baby or you’re eligible because you have twins, you’re eligible and it makes a big difference because they immediately know why they can trust the study because that’s why we target them so that’s the first, the second thing after introducing that I try to say. And then what we’re trying to achieve with the study because they might be thinking why am I wasting my time here, what am I doing so what the study is trying to achieve why it’s important. So if we’re trying to prevent disease, why is the disease important and what it entails and why they may or may not be at higher risk of having that disease.
If patients were interested in taking part, careful explanation about the study was required and especially around concepts like randomisation. Most people felt that simple, clear language was best and they incorporated ways to check comprehension as well as opportunities for patients to ask questions. Many research NMAHPs emphasised that it was important to support and respect patient decisions about whether or not to take part. Sometimes this involved discussing related concerns about what study participation would mean – for example, whether/how many extra visits would be involved and the possible risks from taking part. Other key details to communicate included: taking part in research was an optional activity, and that it was separate/additional to the standard clinical care they would receive. Studies had different timeframes in which patients could consider whether or not they wanted to take part.
Providing the study information had been explained clearly and seemed to have been understood by the potential participant, some research NMAHPs saw getting a ‘no’ from a potential participant as a positive thing because it demonstrated their ability to choose for themselves. Likewise, some highlighted that it was important to make sure participants knew they could withdraw from research. Christine, Sugrah and Dawn felt these aspects were especially crucial in the context of paediatric studies – the parents might be keen but, where possible, it was important to respect the wishes of the children. Ginny also highlighted that fertility treatments often involve “a couple… that’s really important that both of them are in agreement” about whether to take part in a study.
In paediatric studies, Sugrah saw it as her role to advocate for the child or young person.
In paediatric studies, Sugrah saw it as her role to advocate for the child or young person.
Age at interview: 48
Sex: Female
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And then there have been times when you are telling them about it and they’re a little bit guarded, and then you let them know that it’s voluntary, they’re in control, and it’s amazing when you see just the expression, everything, the body language change because they know, and it, it turns it around, they actually say yes. Because they’re given the control, like this is voluntary, you don’t have to, it doesn’t affect your care. And even with the youngsters, and you see it on their face, then it’s, where we advocate for them, so I can see on his face he doesn’t want to do it, and you say, “It’s okay to say no, if you don’t want to, it’s alright,” and they’ll start laughing and will say, “I don’t want to,”, “That’s okay.” And I think that’s our job to make sure that they actually, you know, we’re not making it hard for them, and we make it easy for them to also say no if they really don’t want to do it. And if you’ve got a youngster, Mum and Dad want it, and they’re like screaming, ripping it up and throwing it at you, you’re not going to do it. You’re going to take it away and say, “No they don’t want it.” I know Mum and Dad do, but they don’t want it. They’re saying no in their own way, and that’s our job, we need to make sure that we take that on board, and you know we represent that child.
Sandra felt it was important that potential participants had sufficient time to think about whether they wanted to take part in studies. She also said it was important to check their understanding of what the study would entail.
Sandra felt it was important that potential participants had sufficient time to think about whether they wanted to take part in studies. She also said it was important to check their understanding of what the study would entail.
Age at interview: 43
Sex: Female
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So I would definitely say allow time to think about it, some studies are dead easy, it’s a blood test and a questionnaire, you either want to do it or you don’t want to do it, it’s now, oh you can do it now, or you can do it later. That’s easy. Studies that, where they’ve got regular follow up, well it might mean extra visits, they’re the ones where they need to have a bit more time to think about it. Perhaps talk to someone else, ask the questions and think, okay, can I really commit to this, is it something I want to do? Is it going to make a difference? Especially when perhaps it’s a study where there’s not going to be any benefit for them right now. So, some of the palliative care studies there won’t be any benefit necessarily to the people who are doing that right now, but it might make a difference for other people in the future. So, it depends where, where they’re at. So, it’s about time, give them time to think about it; information, making sure they’ve understood it. So, I often get people to, I’ll say, “Well just tell me what you think I’ve asked you to, what, what your involvement is going to be, what you will have to do, just so as I can be sure we’re both on the same page” so that they’ve got that. I think also making sure that you don’t always make the assumption that everybody can read. In some of the areas in [city] I would say there are definitely people who are perhaps not able to read, read English sometimes, but reading in general. And people can be embarrassed about that. So I would say that, you know, just paraphrasing what’s there, by getting them to repeat it you can pick up on that. And then, or you know, sometimes I’ve said to people, “I’m gonna read this through to you,” if I’ve got a sense that’s not quite right I’ll say to them, “I know it’s a bit boring, but I have to do this,” and I’ll read it through with them so that they don’t feel bad about it, but I can be confident that they’ve understood it. Cos even if they can’t read, it shouldn’t mean that they can’t take part, as long as I feel they’ve clearly understood all the facts and understand and can give their consent.
Melanie thought it was important to clearly explain expectations and any extra commitments involved in study participation.
Melanie thought it was important to clearly explain expectations and any extra commitments involved in study participation.
Age at interview: 43
Sex: Female
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And I always try and make sure that they understand the impact on their lives. So, often people might be quite interested, especially if it's a new drug that they think might have a wonderful effect, and they're very keen to be part of the study. I do just try and make sure that, OK yes, it might, but you're also going to have to come for 20 appointments, and you might be here all day on some days, and sometimes it's really boring and, you know, we try and make it as pleasant for people as we can, but you know, the nature of the work that we do there's a bit of hanging about and waiting for pharmacy.
So, I just try and tell people that upfront cos I don’t like -, I wouldn’t -, I wouldn’t want to be part way through a study and, you know, have a nasty surprise, or think, 'Oh well, you know, I can't do this anymore,' or 'I'm too busy or work's too much,' or whatever, and we do try to be really flexible and accommodating and, you know, have an appointment when, when people can come in, cos I appreciate people work and they’ve got families and all the rest of it. So, I guess it's just trying to be as honest and upfront with people as early as possible.
And then they’ll have a conversation with the consultant as well as us, and yeh, we can go back and forwards as many times as they want really till they're happy to take part, or not, whichever.
Some NMAHPs spoke about ways they supported patients through providing access to treatments and interventions that they might otherwise not have had. Studies were sometimes seen as the ‘only’ or ‘last’ option for patients when other avenues had been ‘exhausted’, were otherwise unsuitable or financially inaccessible. Whilst most studies also had risks involved, some also had potential benefits for study participants – including those which were physiological (such as symptom management or disease reduction), preventative (early or enhanced detection) and psycho-social (improvements in quality of life).
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.
Laura X worked in a sexual health clinic and was involved in a trial that was of interest to a lot of potential participants. It was difficult to decline those who were not eligible to take part.
Laura X worked in a sexual health clinic and was involved in a trial that was of interest to a lot of potential participants. It was difficult to decline those who were not eligible to take part.
Age at interview: 37
Sex: Female
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So we were recruiting patients through our [Trust] clinics. So, this is a gay or bi-sexual men with high risk sexual behaviour. I would say that almost every single patient wanted to be on the trial. There was no-one that didn’t want to enrol on the, because we already know the drug is safe, there’s been another clinical trial that’s shown the drug is safe. What this trial is actually looking at is not the safety, and how effective the drug it is, it’s looking at patterns of uptake, and how long people use it for, and does it change their sexual behaviour patterns. So, we knew the drug was good, we knew that it worked, and the patients knew that it worked. The problem we had was telling people they weren’t eligible for the trial. It wasn’t about telling them they were, because everybody, you know, we had such an overwhelming demand for the number of places that we had. So, for me the problem was more about saying to someone you don’t actually meet the, the criteria.
A study Layla worked on was about prenatal testing technology. The potential impacts for participants were complicated and sensitive.
A study Layla worked on was about prenatal testing technology. The potential impacts for participants were complicated and sensitive.
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Certainly when I was working on the [study name] study, which was non-invasive prenatal testing, that was different because we were looking at screening for chromosomal abnormalities. And then there's the whole can of worms of what do you do if you get a high risk result? And it's trying to explain the difference between the current programme of screening and the benefit of the screening that's coming in, and. So for the women- it was singleton pregnancies in that study, they wouldn't get a result. So essentially they're taking part in this research for the benefit of women in the future, there was no direct benefit to them or their baby by taking part in that study. But they were really doing it for, you know, just people in the future. Whereas the women in the [study name] twin study did get a result. And so they then would be faced with the possibility of having a high risk result from the study test and a low risk result from the current screening, and then what do you do? And then do you have an invasive test on top of that? And so there are a lot of issues that you had to think about and try to convey to the women that they needed to think about before they agreed to take part as well.
Many NMAHPs talked about the emotional support they gave to patients and their families. This included giving patients opportunities to talk, providing extra information or advice, and signposting to suitable resources and services. Sandra felt research participation could be very personally rewarding for patients, including those involved in palliative care studies: “they feel it’s an opportunity to give something back, it’s about legacy, it’s about taking control of something when everything else is out of your control”. Alison highlighted an early pregnancy study which provided a lot of additional contact with health professionals in the study team: “not only are they getting lot more reassurance but they're also learning a lot more about their own bodies and early embryology, that the usual maternity care package doesn’t offer”.
Whilst direct benefit to individual patients participating in studies was not always possible in research, many of the NMAHPs highlighted the overarching value of health research: building an evidence-base and changing practice for future patient benefit. Helen explained that commercial studies were an important part of this, as “the massive financial deficit [the NHS is in means it] could not be doing drug development”.
Through research, Graham has been able to connect up data on paramedic practice with patient experiences. This has potential for future patient benefit and builds the professional evidence base.
Through research, Graham has been able to connect up data on paramedic practice with patient experiences. This has potential for future patient benefit and builds the professional evidence base.
Age at interview: 40
Sex: Male
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It [connecting up data on paramedic practice with patient experiences] makes you think about what you’re doing in a different sense, and it makes you realise what the impact of what you do has in a different sense. ‘Cos we see people for a very short period of time and that could be quite a charged, emotional, intense short period of time and often you’re sort of relying on going back to training, back to your protocols to, very concentrating on, “I’m doing this, I'm doing this, I’m doing this, I’m doing this, I’m going to get them to here,” and then it’s over. And you’re on to the next patient, you’re on to the next job, you do whatever else. And it’s, for you it becomes, you know, another job on another day on another shift. For that patient, that’s a life changing experience potentially and for their family it can be-, their family, their friends, the bystanders, whoever was involved in the situation, it can be a huge event. So actually to be able to get that insight into what impact your actions, your words, your, your mannerisms have. It makes you reflect and think about what could I do differently next time, how would I do it better? What, what would I say or what would I do that would improve this experience, that would make us come across better, that would, you know, your- these experiences don’t all have good outcomes but we can make them better or we can make them worse. But without, without that feedback, without completing the loop, it’s often very difficult to get the insight into what you could have done better. And I think that’s one of the things where research can help, and that’s one of the things where I’ve certainly learnt from having that patient contact and going out and talking to people.
But I suppose on the flip side of that, it’s also showing some of the good that we can do. And again we don’t often-, it’s not just negative feedback, it’s positive feedback we often lack, ‘cos we do what we do, we hand them over to the hospital and the hospital takes the patient on what, on what could be a short or a long journey [laugh]. And they have whatever outcome they have, but sometimes that can be a very good outcome, sometimes we can have a very positive impact in a situation and it’s nice to hear that as well. And that again can reinforce some of the good areas of practice. And just show the values sometimes in what we do.
Dawn had heard about research suggesting that research-active hospitals “generally give better care overall to their patients”, not just those enrolled on studies.
Dawn had heard about research suggesting that research-active hospitals “generally give better care overall to their patients”, not just those enrolled on studies.
Age at interview: 55
Sex: Female
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I feel that we’re providing-, the patients we get on our studies you know get better care. And hospitals that provide research to their patients and research studies to their patients generally give better care overall to their patients. Not just the patients that are on the study. And so I think for that reason as well, I want my, my patients and my hospital and my, and the wards that I work alongside, to provide the best care possible for the patients. And that’s important. And I feel as if we’re changing what’s gonna happen in the future. And that actually some of the studies we do might have a different outcome to what, what we would want, but that’s information still really important. Really important.
Data collected in the course of studies was sometimes useful for patients and their health or medical professionals. It depended on the study, but some allowed or required individual results to be shared with participants and their health or medical professionals. This included studies which involved telling the patient about their outcomes in relation to a technology being tested, such as a study Tabitha worked on about anomaly risk scores in twin pregnancies. Carole worked on a study asking pregnant women to self-monitor their blood pressure. If she saw high results, she would get in touch with them in addition to the electronic system sending a message about the result to the patient; for her, this extra follow-up was part of her midwifery “duty of care to take active measures”.
Other times, research NMAHPs had uncovered a result (such as a high blood pressure reading) in the course of routine data collection or spotted a discrepancy in the medical notes that was not directly related to the study. In these cases, the NMAHP could encourage the patient to contact their usual care health professionals or set up this contact for them. These situations could also be an opportunity to share their professional advice, for example on lifestyle changes that might help. Sian and Sandra both enjoyed the scope for “health promotion” within their roles. However, Ella highlighted the fine line in what should be said: “you have to be wise in how you communicate so that it remains positive. You don't want to destroy the relationship between the GP and the patient”.
Sandra described a study where she had opportunities to use her knowledge to help patients in addition to carrying out the study activities.
Sandra described a study where she had opportunities to use her knowledge to help patients in addition to carrying out the study activities.
Age at interview: 43
Sex: Female
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So because I was talking to people, some people didn’t have any gastroenterology problems, but people with Barrett’s Oesophagus or reflux I could talk to, if they said things about their condition or their symptoms I could say to them, “Oh well you could try this, you could try that,” you know, “Have you thought about this?” But always allowing them to, you know, “It’s your choice but these are some options you could try.” And also if I found people who perhaps they seemed more unwell than I’d been led to believe from the information I’d got about them in advance, that I could point them back to other health professionals. So, I’d say, “Well actually I think that probably does need looking at, you could go back to, you should go back to your GP.” Or if their medication, they were saying they had side effects from the medication I could say to them, “You know, well there are other options for this type of medication on the market, so go back to your GP”, they’re not always keen to change for whatever reason, but you could go ahead and see if they can make other suggestions, and then leave it with them, but it was a good opportunity to give them that one to one time. And no rushing, you just took as long as it needed to take, and it was nice for them cos they felt they could actually ask you things, cos you weren’t in a rush.
Alice gave an example about something she picked up in the course of carrying out research. She also felt she had gained more insight into the patient experience.
Alice gave an example about something she picked up in the course of carrying out research. She also felt she had gained more insight into the patient experience.
Age at interview: 29
Sex: Female
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I think another good example is probably when we do data collection that we can pick up things that aren’t sometimes done. Quite recently we noticed that aspirin isn’t always prescribed when there are risk factors at booking and I’m not sure if it’s, I’m pretty sure it’s not just our Trust I think it’s something that can happen very often because early pregnancy seems to be nobody’s business sometimes because the GP tends to send the patients back to the obstetric team and the obstetrics team will send the patients back to the GP and then this goes on and on until the patient is so frustrated sometimes they just wait to see the midwife at 20 something weeks and it’s something that I think we should work on and sometimes we’re able to pick that up especially some studies were where we recruit patients quite early and we can you know, do something about that and we’ve had to really see sometimes step by step what the patients, the patients are going through.
We do something that maybe as a clinical midwife I wasn’t aware so after discharge I will think okay I’m working a 12 hour shift so the patient doesn’t need to be in so we’re going to discharge her and maybe refer her to a midwife and I wasn’t quite aware of how it may be difficult, the process is for the patient who actually access the services or sometimes getting the answers that she wants, it’s sometimes also a bit frustrating.
Patients enrolled in studies often asked research NMAHPs questions not directly related or relevant to the study. This included questions that the patient had forgotten to ask one of their other health or medical professionals at a previous time, and sometimes it was to seek clarification about what had been said to them. As James explained, “they may not have understood the words that they've been given by the consultant”. Ellen thought this type of ‘translational’ role (“the doctor explains to the patient and then they go away and the patient says, “What do they mean?””) was a familiar experience for nurses, including those in research.
Alice talked about providing extra support and reassurance in her role as a research midwife.
Alice talked about providing extra support and reassurance in her role as a research midwife.
Age at interview: 29
Sex: Female
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I think it’s its different because in research because it’s something that it’s not mandatory by definition so it’s an option for, for a patient but it’s not something that they have to take part in, I think the relationship is it can sometimes provide that extra care that the patient may not get when it’s, you know, busy and in the busy clinical environment where if you’re, if you’re seriously ill the healthcare professionals and doctors might be focussing on some aspects of your care because obviously they care about you and your baby and they want to provide you with the best care possible. And sometimes some other aspects of the care are a bit neglected I think and that’s not, and it’s something that, you know, that, it it’s something that we all want to avoid but it can happen when you have to prioritise and you have a busy environment. So I think research can provide that extra support and we can also, you know, we have some time to listen to the patients as well and very often we identify things that weren’t quite picked up in clinical practice. We have a close relationship with our patients as well so they sometimes text us or, you know, they call us if they have a problem so they do end up sometimes getting extra, extra care extra support and I think it’s really nice that we can, you know, we can provide that and most patients in research are usually quite obviously I’m biased [laughs] but I think they’re quite happy and I think that they feel that, you know, they’re being listened to and that they’re given something extra that they wouldn’t have normally so I think that’s something that it’s, it’s quite important and it does reflect on the, the way we communicate with them and we, I think we provide some extra reassurance which is sometimes something that patients feel like it’s lacking.
Ellen described the extra support that research participants sometimes had which was not strictly study related.
Ellen described the extra support that research participants sometimes had which was not strictly study related.
Age at interview: 50
Sex: Female
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You're, you're the- if they weren't on this research study, they wouldn't be having-, a lot of them, if they didn't come on the research study, they wouldn't be having this contact with the hospital. And they've got our direct number, so they've really got a direct line to the hospital, because we have the ear of the consultant. So they phone us with a problem, which is nothing to do with the research [laugh] or- well, usually it's something to do with stroke. And we go and speak to the consultants and get back to them. So it's quite valuable. Well it's very valuable, I would say.
So, I get satisfaction from that, that we're providing them with a good service. I was going to say a holistic service. It isn't really, is it. But we do cover lots of different aspects. Because they'll get into-, because it's stroke, and we're trying to prevent another one so they'll get into weight loss and oh, depression and anxiety and, you know, mindful-, all sorts of different things that we could maybe recommend and find out about for them. Local groups they can go to and that sort of thing.
Sarah would ask potential participants what they understood about their situation, and she could then help “fill in the gaps”.
Sarah would ask potential participants what they understood about their situation, and she could then help “fill in the gaps”.
Age at interview: 31
Sex: Female
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Because of what I do, I often ask them what they know about why they've come in, often. Especially if it's a particularly sensitive topic. So, yeah. Ask them about their understanding about what they-, why they're here. What they've been told already. And then try and see if I can fill in the gaps. And then explain to them how this study kind of fits in with where they are in the process.
People have very, very different understandings. And sometimes incorrect understandings, about why they are in the situation. Or they've misunderstood. Or somebody hasn't given them correct information about why they've been admitted, or something like that. What does that help, how does that-, what does that help me do? It helps me not patronise them. It helps me not tell them things that they already know. Which I just think puts people's backs up. It allows me to actually add something, possibly add something, which hopefully benefits them in some way.
Some research NMAHPs found that patients opened up to them about the wider context and concerns of their lives, in part because of the rapport established through study participation. Sometimes this highlighted concerns in relation to their health and how it impacted on wider aspects of their lives, such as affecting their family and daily routines. For some, listening and responding in a helpful or sympathetic manner was seen as part of the care they provided to patients through their research role. For some research NMAHPs, it was one of the most rewarding aspects of their role and which they felt benefitted participants significantly. Michael explained that, as a cancer research nurse, “you’re giving holistic care, so you’re asking patients about their marriage, about their sex life, about life with cancer, and when you step into that kind of intimate circle with someone it’s very special and very unique”. However, some people found there was a balance to be struck if the conversation became irrelevant – they sometimes had to politely disengage or set boundaries, particularly if it was negatively impinging on being able to carry out the research study activities in a timely manner.
Ella found that elderly participants were keen to chat. This wasn’t usually a burden on her time as she could listen whilst carrying out data collection activities.
Ella found that elderly participants were keen to chat. This wasn’t usually a burden on her time as she could listen whilst carrying out data collection activities.
Age at interview: 56
Sex: Female
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So, coming to research, when you have the time to communicate with the participant, it's always good. And then you make yourself approachable. And you listen. There are some patients who will come to take part in the study and they are-, they have got emotional burdens they are carrying. And there's some who are lonely. In some studies, you find if you- especially if you have to do studies with the elderly. There's some who are lonely, very lonely. And the time with you is a precious time for them. So they may come with stories and wanting to talk a lot. So you have to be wise how you use the time so that you listen at the same time do your work. Because it's not only that participant, you have got others who are going to come at the allocated time. But when you’ve built a rapport with them, then they know their time is this to that time. It kind of works. I don't know how it works, but it works. You listen to them.
But you're not rude, to tell them, “No, I can't listen to you”, you know, that kind of thing. You listen and you still do your work. Because some of them only need somebody to listen to them.
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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