Nurses, midwives & allied health professionals in research
The extra activities of research nurses, midwives and AHPs beyond research delivery
Some nurses, midwives and allied health professionals (NMHAPs) employed in research delivery roles* were involved in additional research-related activities. There were many different examples and the most frequently mentioned ones are covered in this section, such as: assessing feasibility for potential studies; study coordination; promoting a research-positive environment; profile-raising activities aimed at patients and the public; building research capacity; and involvement in study design.
For research NMAHPs, opportunities to be involved in these and other activities varied. It differed from place to place, team to team and study to study. Some people were employed in posts which specified both research delivery activities and additional responsibilities, including for trial coordination (for overarching trial documentation and/or liaising across recruitment sites, usually for one specific study). Others had become involved in extra activities when opportunities became available, as an addition to their main role. As Sarah explained, “I think if you meet your targets [e.g. for recruitment], then you should be able to do other things as well”. Those people in leadership roles had responsibilities for managing research staff and often for training/teaching about research.
And now in my current position, I actually sit down and I’m fully involved in the design and writing of a protocol and the study, in the study design.
Purely because I know first of all what is feasible on the ground, in the real world, what you can and you can’t recruit in, generally. I mean with all the respect, sometimes medics they have these things they think that-, there is a discrepancy in the numbers, they always seem to think that there are a lot more people that will be recruited than there really are. And I try to tame, temper them on that, kind of probably lets, let’s be a bit more optimistic. But yes, now I’m involved in the design of the study, all the process of the application and granting all the approvals.
And then setting up the studies, to the close of the study, then training the staff and all that.
Assessing feasibility for potential studies
Simona’s current role included leading a team, having input into study design (including feasibility), and setting up as well as closing down studies.
Simona’s current role included leading a team, having input into study design (including feasibility), and setting up as well as closing down studies.
SHOW TEXT VERSION
PRINT TRANSCRIPT
Purely because I know first of all what is feasible on the ground, in the real world, what you can and you can’t recruit in, generally. I mean with all the respect, sometimes medics they have these things they think that-, there is a discrepancy in the numbers, they always seem to think that there are a lot more people that will be recruited than there really are. And I try to tame, temper them on that, kind of probably lets, let’s be a bit more optimistic. But yes, now I’m involved in the design of the study, all the process of the application and granting all the approvals.
And then setting up the studies, to the close of the study, then training the staff and all that.
Many research NMAHPs talked about the importance of having realistic participant recruitment targets in terms of numbers and timeframes. Some had input into deciding which studies would be carried out at their sites. The processes of assessing feasibility usually involved multiple steps. Nicky explained that one aspect would be checking databases for the numbers of patients likely to be eligible and then adjusting for expected uptake based on what the study would involve. She thought assessing feasibility should be “a team thing” and involve all of the departments who would be affected to find out about their capacity for the extra work, their facilities and skills. In Carlos’ joint role as a trial coordinator and research physiotherapist, he helped sites assess their suitability via feasibility questionnaires and, “if there are still doubts, we can go on a feasibility visit” to meet the team and discuss the study further.
Not all research NMAHPs were involved in assessing feasibility at the decision-making stage (i.e. when a site was choosing whether or not to take on a study), but many were still involved in planning out how best to reach targets once a study was due to start. Often their insights were based on their past experiences of other studies and of working with particular groups of patients (e.g. children, pregnant women, those with a specific health condition)
I do get involved in the feasibility stage. I get involved from the expression of interest stage. All the emails for paediatric research that is coming up, all the new, the new research comes to me. And then I’ll read it and if we don’t see that patient population and I know we don’t, I will reply, we will reply to it and say, “We couldn’t consider it here”. If it’s a population that I’m not sure whether we would definitely have that, because I don’t know everything, then I would forward it to the consultants. But if it’s, if it’s a study and I do think we could run it, I would roll it out and forward it to all the consultants in the Trust, not just the ones that are research active, to everybody, cos it maybe that one of the other consultants it’s their specialised area and they will be wanting, the ones that are interested in it.
And then I help with the expression of interest forms, we do them together, the consultants, myself and the R&D [Research & Development] department. And then when the feasibility we would all, once we-, and the sooner we can get hold of the protocols, the better. I don’t think they give us enough information at the expression of interest point for us to be able to make a, a decision about whether, or we would feasibly be able to run the studies.
And it may be at that point, you get the protocol and you think ‘it’s not, I can’t-, there’s no way we can run this’, or we’ll, we will pick out areas where, of weaknesses within that, where we may not be able to, we might be able to say, “Well actually we can do all this, this, this, this and this, but actually this part we, no we can’t provide that here,” or, “Are you going to provide it?” or, or “Actually we won’t be able to do that because we don’t have the out-of-hours pathology support to provide that, to be able to collect that sample at that point in time.” And then we could negotiate, so there’s a, you can negotiate with the study team at that point.
I mean we have to phase them, so we would have to look at both the number of studies that the department can support at any one time, whether they’re the same pool of patients, and it may well be that you’re going ‘yes well we, we can do this study, but we won’t be able to start recruiting until, you know, for six months, because we are currently recruiting for this study, and we can’t do both at once’, or, and that maybe cos there aren’t enough patients, or it may just be sheer resource, that it, and there is a limit to how many different protocols you can expect a clinical team to keep in their head, and to deliver and, and it is harder to treat patients to a clinical protocol as well, you know, so you don’t want to over burden the clinical team. So yeah, I think we have to be mindful of not over burdening the same group of people.
Well I just say, “We’re doing this study, it’s going to be patients on this, in this area that we’re going to be looking at. The study is whatever it’s about this is what they’re looking for, this is what they think they might find, what do you think about that? Do you think we will find these patients here? What, how many, how do you think is the best way for me to come every morning and have a look, is the best way for you to give me a ring when you see, you know, when you see patients like that, how do you think we should play it?” you know, and see what the feedback is. And then you’d get like you can judge then by the response you get, what input is gonna work the best.
Study coordination
Dawn had a role in deciding which paediatric research studies to run at her Trust. This was challenging without access to the protocols and could mean finding unexpected issues at a later date.
Dawn had a role in deciding which paediatric research studies to run at her Trust. This was challenging without access to the protocols and could mean finding unexpected issues at a later date.
SHOW TEXT VERSION
PRINT TRANSCRIPT
And then I help with the expression of interest forms, we do them together, the consultants, myself and the R&D [Research & Development] department. And then when the feasibility we would all, once we-, and the sooner we can get hold of the protocols, the better. I don’t think they give us enough information at the expression of interest point for us to be able to make a, a decision about whether, or we would feasibly be able to run the studies.
And it may be at that point, you get the protocol and you think ‘it’s not, I can’t-, there’s no way we can run this’, or we’ll, we will pick out areas where, of weaknesses within that, where we may not be able to, we might be able to say, “Well actually we can do all this, this, this, this and this, but actually this part we, no we can’t provide that here,” or, “Are you going to provide it?” or, or “Actually we won’t be able to do that because we don’t have the out-of-hours pathology support to provide that, to be able to collect that sample at that point in time.” And then we could negotiate, so there’s a, you can negotiate with the study team at that point.
Karen highlighted that, in very research-active environments, it was important to stagger studies.
Karen highlighted that, in very research-active environments, it was important to stagger studies.
SHOW TEXT VERSION
PRINT TRANSCRIPT
Jo liaised with colleagues to plan out the best way to meet recruitment targets.
Jo liaised with colleagues to plan out the best way to meet recruitment targets.
SHOW TEXT VERSION
PRINT TRANSCRIPT
Some people had trial coordination in their job descriptions. Activities varied but tended to include input into seeking ethics approvals, liaising across multiple study sites, and offering support to sites with recruitment and retention issues. Some people, such as Claire and Nicky, were PIs (Principal Investigators) for studies and others aspired to take on this role in the future.
I think it made me quite sympathetic to what was going on in other places. So because in most cases. So, because in most cases I would be working with the local research nurses to set up the project, although we all had to go through our R&D units and various other, you know, sort of official sort of, you know, routes to follow. But yeah, and I could talk to them. That was another experience as well, recognising, I'm very fortunate the actual, the physical site where I work, I can walk to any of the clinics that I go to you know, I can catch up with the consultants that I need to. And in many places, that's just not the option that they have. And, and that's been interesting to sort of experience that through other people and then try and figure out there have been a few sites who've had tremendous problems with their data collection and follow through. Great frustration. And I know I'm quite sympathetic to them.
A few people didn’t explicitly have a study coordination role but had been involved in aspects of related activities. Melanie explained that she was “not necessarily filling in IRAS [Integrated Research Application System – for research permission] forms, but certainly being part of those discussions and part of that planning”.
Barbara was in a combined research nurse and study co-ordinator post. She gained insights from each role which held relevance to the other.
Barbara was in a combined research nurse and study co-ordinator post. She gained insights from each role which held relevance to the other.
SHOW TEXT VERSION
PRINT TRANSCRIPT
Promoting a research-positive work environment
Research NMAHPs were often involved in raising the profile of and support for research amongst their colleagues*. This could help overcome barriers, such as clinical non-research staff [link to TS15] gatekeeping access to potential participants or making dismissive comments about research in front of patients. Helen felt it was “a drip, drip, drip” process to educate staff (including support services) about research activity. Simona pointed out that a high turn-over of clinical non-research staff makes this especially challenging. Examples of activities to promote a working environment where research would be integrated and viewed positively included:
- talking about research in meetings and training courses – disseminating findings, discussing upcoming studies, highlighting research secondments, and teaching on various courses for staff (including induction courses and mandatory training days);
- running a journal club open to clinical and research NMAHPs;
- presenting about research to student NMAHPs and/or offering student placements;
- encouraging clinical staff (especially new starters) to shadow the research team for a few hours or a day;
- nomination and reward schemes; and
- poster campaigns about research.
Some activities aimed to further convince staff of the value of health research for patients and the overall health system. Many of the activities to promote a research-positive environment were designed to be engaging and fun, and to incentivise staff to be supportive towards research. Helen described a rewards scheme in place at her Trust for colleagues who have “really supported research - that might be they’re more than happy to provide information for us or they might be a histopathology secretary who’s happy to [help] […] We nominate them and then we do a little write up about them, and give them some cakes and biscuits and things like that, which is really nice actually”.
I also do education for the unit, so every month for example there’s a study day where- so because of the size of our unit, so we have staff from Band 5’s up to a Band 7, on one day a month it’s like their sort of mandatory training update day. And we have a research slot on that every month, and so we give them an update on all the studies that we’re doing, any positive feedback, any areas where we’ve perhaps encountered any challenges, and also we give them the chance to ask us any questions about anything they’ve spotted. It’s also a chance for us to say if we’ve got any secondments, any posts coming up. If there were any conferences coming up and how they go about writing something up.
So we use that as our chance to kind of really engage with people from the unit once a month in a more sort of formal way, and that helps us to promote that research culture but also helps them to ask any questions. ‘Cos I think it’s quite hard on a day-to-day basis, especially when families are there, for staff to turn around and go, “Why are you doing this study?” Like, “Is this really necessary?” But I think the important message that we give the unit is ‘we know that research isn’t for everybody, but what we need them to do is just to support the activity and especially to support families if they’ve made the decision to take part in something’.
I was, I was originally on the mentor register when I was on the wards. And research has only just started taking student nurses. At the moment from here. We’ve only had one student and they’re currently third year students. And we’re in the process of developing a training package for them because research is very, very intense. A lot of it can be quite boring and laborious, and it’s how we keep a student interested. So, I’ve been actively involved in setting up that, and we’re getting our second student coming, who’s going to be working with me, where initially my first student that I just had for three days on different times. I was more of a support mentor, this time I’m going to have them for two weeks so that we can actually be specific, and what we learnt from our last student in the feedback was that we’re not, we don’t need to be too broad. We need to be more specific. So, give them an overview of what’s going on and then say because they’re third year students, “Is there a particular area that you’re looking at? Are you interested in breast? Are you in bladder? Is it lung that you’re more interested in? And then try and be, to, to guide them into one protocol, understanding one protocol. Because protocols are all the same, they just say different stuff. But you follow it and they’re all, they’re all the same at the end of the day.
So, getting them to understand about why we do the paperwork, what it involves, why we ask the questions we ask, why is that important? Knowing and trying to explain to them the different types of studies. Why it’s important that we look at toxicities when people are taking drugs. Why, the one that I’m going to be working on at the moment is my bladder cancer one, cos it’s a questionnaire one, and it’s looking at people’s experiences from diagnosis to treatment, and how that works. How people feel about the moment they’re told the bad news, to how long it took to get that bad news, and how that works.
Profile-raising about health research to patients and the public
Julie ran sessions on various training courses for new staff. She thought this had helped develop a research supportive environment and working relationships.
Julie ran sessions on various training courses for new staff. She thought this had helped develop a research supportive environment and working relationships.
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
So we use that as our chance to kind of really engage with people from the unit once a month in a more sort of formal way, and that helps us to promote that research culture but also helps them to ask any questions. ‘Cos I think it’s quite hard on a day-to-day basis, especially when families are there, for staff to turn around and go, “Why are you doing this study?” Like, “Is this really necessary?” But I think the important message that we give the unit is ‘we know that research isn’t for everybody, but what we need them to do is just to support the activity and especially to support families if they’ve made the decision to take part in something’.
Paul talked about mentoring nursing students on placements in his research team.
Paul talked about mentoring nursing students on placements in his research team.
SHOW TEXT VERSION
PRINT TRANSCRIPT
So, getting them to understand about why we do the paperwork, what it involves, why we ask the questions we ask, why is that important? Knowing and trying to explain to them the different types of studies. Why it’s important that we look at toxicities when people are taking drugs. Why, the one that I’m going to be working on at the moment is my bladder cancer one, cos it’s a questionnaire one, and it’s looking at people’s experiences from diagnosis to treatment, and how that works. How people feel about the moment they’re told the bad news, to how long it took to get that bad news, and how that works.
Many research NMAHPs were also keen to spread awareness about health research to patients and the public. For some, this was about widening access and fostering a ‘demand’ for more research to ultimately benefit more patients. As Alison explained, “that’s a public engagement thing, to create that element of expectation [amongst patients]”. Some research NMAHPs had set up social media pages to promote research taking place in their work setting. Those who also worked in a non-research clinical capacity sometimes ended up talking to patients about research if they showed an interest or asked about their ‘other’ job.
There were events for ‘awareness days’, such as the International Clinical Trials Day and World Cancer Day, and some people had also visited schools and local festivals. This included setting up and running stalls to highlight health research in general and specific studies. In addition to the often mentioned appeal of cakes at these stalls, there were examples of creative ways to engage patients and the public. Rachel X had heard about an initiative undertaken by research midwives at another Trust: “they have a trolley with all the [study] posters stuck around the side… then they just fill it with sweets and cake and everything, and they literally wheel it round all of the ward”. Alison described a water balloon game for secondary school students which replicated midwifery-related activities, like palpating and ultrasound: “it perfectly encompasses a lot of those concepts around mystery, and researchers also use a lot of detective skills”.
So Clinical Trials Day is coming up and so, I'm pretty inventive. So for Clinical Trials Day which I'll explain randomisation, so I don’t know if you remember the Wheel of Fortune?
Yes [laughs].
[Nods] So, I've actually -, what we're going to do this year is use a Wheel of Fortune to explain generally. So and it's going to have the Wheel, and patients will come over and they’ll turn it around and it'll have like A, B, C, D, and then they’ll have four jars and have A, B, C, D with like I don’t know, sweets, chocolate, empty kind of thing just to explain. So you get-, you-, randomisation is actually random, so it's an allocation that was not predicted by anyone. And then A would represent etc., but for the particular-, when I explain to them about the study I don’t use the Wheel of- randomisation; that’s just for clinical trials day, so having a bit of fun. I would explain to them that it's done by a computer, so it's not done by anybody in partic-, as a person, to reduce bias. And therefore, you going into the trial I can't tell you what you're going to be randomised to. And I just explain to them that it's-, it's not being based on any aspect of yourself kind of thing. I've had to put your details into create like a study number, but the random-, the actual randomisation bit is not specific to-, it was not created that-, so let's say you get randomised to B, it was not created specifically, because, to B because of anything to do with you, if that makes sense?
Some people have been a bit hesitant on that though, ‘cos they’ll be like 'oh, computer's gonna -, gonna destine what I'm going to be doing.' And it's-, we just have to explain that’s the safest way to do it ‘cos if a human being was to do it they would be-, there would be some part of bias at least. And they’ve always got the option to withdraw if they don’t want to actually participate.
And I think, yeah just really spreading the word and working regionally, and being, being seen to do different things. We’ve done some charity work and we’ve raised some money for different charities and that particularly try to be involved with research, brain tumour research. We’ve had a bit of a high profile raising money for them. I think just the general social media thing has, you know, really gone out there. The staff bulletins, you know if we’ve got a study that a lot of staff can take part, it goes on the staff bulletin that everybody gets. We’ve had cake stalls in the reception that, you know, we have International Clinical Trials Day once a year that, you know, we try and put ourselves out there. [Regional event] that was a massive big publicity for us, which was great, you know, we had some banners and we had our own stand and it was we recruited really well to [regional health study] as well as screening for diabetes-, type II diabetes. So yeah, yeah, it’s, it’s really evolved over the last few years.
These activities also could spark useful discussions between research staff and patients, potentially overcoming commonplace misconceptions about research. Some examples were explaining that research is done on lots of topics (not only about cancer) and challenging the idea that research participants are ‘guinea pigs’. Some research NMAHPs found there were challenges in their outreach activities to patients and the public. For example, those who had set up social media accounts (or planned to do so) often found current ethical and governance regulations prevented them from using these to advertise studies.
Building research capacity
As part of International Clinical Trials Day and to raise awareness of research, Osi was planning a stand to help engage people with the concept of randomisation.
As part of International Clinical Trials Day and to raise awareness of research, Osi was planning a stand to help engage people with the concept of randomisation.
SHOW TEXT VERSION
PRINT TRANSCRIPT
Yes [laughs].
[Nods] So, I've actually -, what we're going to do this year is use a Wheel of Fortune to explain generally. So and it's going to have the Wheel, and patients will come over and they’ll turn it around and it'll have like A, B, C, D, and then they’ll have four jars and have A, B, C, D with like I don’t know, sweets, chocolate, empty kind of thing just to explain. So you get-, you-, randomisation is actually random, so it's an allocation that was not predicted by anyone. And then A would represent etc., but for the particular-, when I explain to them about the study I don’t use the Wheel of- randomisation; that’s just for clinical trials day, so having a bit of fun. I would explain to them that it's done by a computer, so it's not done by anybody in partic-, as a person, to reduce bias. And therefore, you going into the trial I can't tell you what you're going to be randomised to. And I just explain to them that it's-, it's not being based on any aspect of yourself kind of thing. I've had to put your details into create like a study number, but the random-, the actual randomisation bit is not specific to-, it was not created that-, so let's say you get randomised to B, it was not created specifically, because, to B because of anything to do with you, if that makes sense?
Some people have been a bit hesitant on that though, ‘cos they’ll be like 'oh, computer's gonna -, gonna destine what I'm going to be doing.' And it's-, we just have to explain that’s the safest way to do it ‘cos if a human being was to do it they would be-, there would be some part of bias at least. And they’ve always got the option to withdraw if they don’t want to actually participate.
Louise described a variety of ways she had helped raise awareness about health research to staff, patients and the public.
Louise described a variety of ways she had helped raise awareness about health research to staff, patients and the public.
SHOW TEXT VERSION
PRINT TRANSCRIPT
Many research NMAHPs were keen to encourage “home-grown” research from their Trust or department, and for studies which would be profession-led (e.g. nurse-led). Initiatives to help build this research capacity included:
- secondments or relatively minor opportunities for clinical staff to carry out research;
- support to develop research ideas;
- support to present at conferences and/or publish articles; and
- support to undertake Master’s or PhD qualifications.
The types of support offered could include general encouragement but also practical help and financial assistance. However, funding could be a major challenge, especially in the context of short-term contracts.
At the moment from a clinical research team perspective a lot of our research that we do is research delivery for portfolio studies, which are very medical, and there’s not much nurse-led research about at the moment. I think that’s something that will be of great benefit to our patients in the future, because yes, the medical innovations are, are fantastic, but we also need some nurse-led research for our professional growth to help the care of our patients and ensure that their experiences are as good as they can be.
So for example my day today has been a lot of work preparing work for conference submission, so very, we’re very careful to scrutinise all the work that goes in. So we’re very careful first of all to encourage our nursing and allied health staff on ITU to submit work for conferences, to share what we’re doing. Paediatric intensive care is quite a small community and especially in terms of units that have over ten patients, ten beds. And so actually we all need to learn from each other. And so we have a very strong approach on our unit to support people to put work in for conferences and to also write it up for publication. That side of it needs a bit more work, but the public-, the conference presentations we do really well at. And we have lots of really high-quality work and we make sure that when it’s written up it’s also conducted to a high standard. So a big part of my job is helping people to do that, so I spent four hours yesterday reviewing posters [laughs] but it’s a worthwhile investment because actually staff very quickly pick up those skills and then the next time they come to do a piece of work, actually it’s a lot easier. It’s a much better standard, so it’s takes less investment in the long run.
For some people, building research capacity was an explicit component of their job title and description. Sandra worked with “research naïve” settings such as hospices and care homes; it could be challenging but rewarding to persuade staff that research was a choice for patients, not a “burden”, and that it would complement rather than be “a priority over their [patient] care”.
Imogen would “ideally like to grow a bit more nurse-led research in emergency medicine” in her department.
Imogen would “ideally like to grow a bit more nurse-led research in emergency medicine” in her department.
SHOW TEXT VERSION
PRINT TRANSCRIPT
Julie encouraged both research and ward staff in her unit to present at conferences and publish. There are various ways she supported this, including reviewing drafts of conference posters.
Julie encouraged both research and ward staff in her unit to present at conferences and publish. There are various ways she supported this, including reviewing drafts of conference posters.
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
Drawing on her research nursing expertise, Sandra had a “facilitation role” supporting hospices to develop their research capacity and activities.
Drawing on her research nursing expertise, Sandra had a “facilitation role” supporting hospices to develop their research capacity and activities.
SHOW TEXT VERSION
PRINT TRANSCRIPT
Amazing group of people to work with. So we talked about what did they need to have in place as their organisation to take part in research, what training would they need, how we were going to identify studies, what about staff and time and all of that, and the network provided some funding for a research nurse to work at those sites for one day a week. And what we decided was it was better if that person was somebody already working in the hospice cos they knew all the hospice stuff, and people knew them, and that was a big barrier to overcome, and they started to work one day a week on a study we identified, but in between when they didn’t have any patients they’d do research raising awareness and tell people about research and get some buy-in and hopefully break down some of those barriers. So they’ve, my hospices in the centre of the region have been working on that now for three years I would say they’ve been research active. And they’re very engaged, they’re now looking for their own studies, they’ve got policies and procedures in place, they have groups that talk about it, they’ve got patient representatives who can give opinions, and they’re even starting to think of their own ideas, of what research they might want to do at their organisations. So, they’re doing a great job, yeah.
Some NMAHPs in research delivery roles had input into research design, analysis and dissemination. For example, Layla wrote an article about one study she worked on, “looking at it from a midwifery perspective”. Louise had commented on a paper from a study she had helped to carry out and anticipated that she would be listed as a co-author. A few people talked about working with individuals or groups of PPI (Public and Patient Involvement) contributors, which had shaped the research design or implementation in important ways.
However, most NMAHPs employed in research delivery roles did not have input into the design, analysis or dissemination of the studies they were involved with. Some were fine with this and saw their strengths in the other activities (like recruitment and data collection) or felt it was an understandable situation with large trials involving multiple sites and staff. Others felt a sense of exclusion and unfairness that such opportunities weren’t readily available to them or that, more broadly, their names and contributions were rarely acknowledged in publications.
Yeah I haven’t, I haven’t got to that bit yet with any of the studies that I’ve been on, so, but I doubt it. I think there’s, there’s only one where I might potentially be required to say something, and I’d be very surprised, very happy, but very surprised if I was asked to contribute to the writing up of that. Also I think, you never really get mentioned do you, when the paper gets written up, you never get mentioned in the, in the writing up or you know there’s a whole tranche of people that work on that study that never get their name in lights, but I mean I kind of understand that from the other side now that I’m doing my own study, cos I think it’s my flipping name up there, not yours, get off.
Huh but it does seem like a shame really that you don’t, cos there’s a lot of work that goes into, to carrying out a study. But I guess it’s not part of our role to be, our role is to gather the most clean data that we can, and to keep it in as clean a way as we can so that when it comes to being analysed it can be analysed properly. That’s our role, I would say in it, you know my work life role is all about gathering good data and knowing, knowing what good data looks like and what bad data looks like. And, and being true, true to that really. That, that’s my role. So, I, a part of write up probably not, I’d be surprised. But I think we’re there in the fine detail because we will have gathered good data and if we haven’t gathered good data then the write-ups not going to be good, and it’s got to be true. So it’s important really.
Well at the moment the studies that, that the two, two of the studies are from a different university, so not really. Your data goes onto the online database and then gets fed back to the main site. So not with that one. With the main, one, the main microbiome study is from our Trust. Again we’re not really in that phase. I mean clinical research fellows tend to have their own projects going on, but not really, there’s not a lot of writing up involved. There is, there are small opportunities, so there’s an opportunity for some data analysis for a scanning machine that we’re using, it has a new type of technology, that’s needing to be analysed and it hasn’t yet. So, I’m hopefully going to try and take that up at some point in the future just because nobody else is. But there’s no real routine inclusion in that, which I think is a shame, I would like to be involved in, in the end, the endings, the more, more fully rounded picture of the of the study because you can be involved, you’re definitely involved in the initiation of the study, and then you run it, and then it finishes and then all the data goes out to, to whoever, and then suddenly a paper appears and there’s no mention of what you’ve done.
Many research NMAHPs described issues with being notified of study findings. This included dismay at the length of time it took for findings to become available, the way that findings were announced (at conference they didn’t/couldn’t attend, through journals they couldn’t access), and the need to chase the study team. James thought the delays and inconsistencies with hearing about study findings “takes away the rewarding part” of his role. Nikki felt it was important to pass on the outcomes of research to all staff who had supported the studies in some way, and Nicky thought it was a shame for study participants to not know the outcomes. Reflecting across her time working in research, Ginny described frustration when studies hadn’t led to improvements or had inconclusive findings.
Obviously findings of studies tend to take quite a long time to come out. I mean it’s as much as two years, I always think it should be quicker now with the internet, it should be easier to get these things out there. But because things don’t go out till they’re published in journals, if they ever get published in journals, it can take a long time. So there’s two parts. There’s firstly managing patient expectation of when they might get some results. So always tell people it’s going to be a long time before you hear anything back about results. Unless it was a drug-based trial in which case you would hear if there was something important you needed to know, you would hear that straightaway, cos they want to know that they’re safe. But everything else tends to come much later on. And managing that expectation, cos if they think they’re gonna hear, no, it’s, it’s 18 months, two years. If it’s a ten-year study, it could be ten years. You know so it’s managing that. But for myself what I tend to do is the studies that I’ve worked on I tend to sort of set myself a reminder that every six to eight months I might contact the study team and say, “Just wondering if you’ve got any interim findings that you might be willing to share?” With the care home stuff we’re doing, if we’ve taken part in any studies, going back to the study team again and just saying, you know, “Have you got anything we can share with our homes to say you know, this is the study you took part in, this is the information, anything that they can use or we can cascade out? Are you going to be doing any training based on what you’ve established?” But it does take a long time to get out, so it’s a case of finding that out for yourself. Or alternatively looking at research that has nothing to do with what I’m working on, but in the same like disease specialities, so what research has already gone on in care homes, what can I, what lessons can we learn, what can I take out to other people and say, “Okay these have gone on, I understand you want to,” so for instance , “I want to, you want to know more about end of life care in care homes, this is what the current research says, these are the tools that I’ve been able to identify, here’s the information,” and it’s up to them then what they do with it, but trying to bring research in that’s perhaps already gone on, rather than just leaving them with nothing.
The appeal of different research activities and NMAHP researchers
Libby would be “very surprised” if she were included in writing up study findings. Even so, the contributions of research NMAHPs like herself are “there in the fine detail because we will have gathered good data”.
Libby would be “very surprised” if she were included in writing up study findings. Even so, the contributions of research NMAHPs like herself are “there in the fine detail because we will have gathered good data”.
SHOW TEXT VERSION
PRINT TRANSCRIPT
Huh but it does seem like a shame really that you don’t, cos there’s a lot of work that goes into, to carrying out a study. But I guess it’s not part of our role to be, our role is to gather the most clean data that we can, and to keep it in as clean a way as we can so that when it comes to being analysed it can be analysed properly. That’s our role, I would say in it, you know my work life role is all about gathering good data and knowing, knowing what good data looks like and what bad data looks like. And, and being true, true to that really. That, that’s my role. So, I, a part of write up probably not, I’d be surprised. But I think we’re there in the fine detail because we will have gathered good data and if we haven’t gathered good data then the write-ups not going to be good, and it’s got to be true. So it’s important really.
Rachel X felt there were limited opportunities to be included in the analysis and write-up of study findings. It is an activity she would like to do in the future.
Rachel X felt there were limited opportunities to be included in the analysis and write-up of study findings. It is an activity she would like to do in the future.
SHOW TEXT VERSION
PRINT TRANSCRIPT
Sandra set reminders to contact study teams about results every six to eight months. In this absence, being able to signpost staff and patients to published research on similar topics was helpful.
Sandra set reminders to contact study teams about results every six to eight months. In this absence, being able to signpost staff and patients to published research on similar topics was helpful.
SHOW TEXT VERSION
PRINT TRANSCRIPT
For some people, the appeal of extra research-related activities stemmed from feeling their research delivery roles were too limited. Ginny disliked that an emphasis on recruitment targets made her research nurse role into “a sales job… if that’s all it is, it’s frustrating and also just not very inspiring really”. Mary had been in a research nurse job after completing her Master’s but also felt it “compartmentalised into a particular role”.
However, some people who were involved in extra research-related activities highlighted that it could mean missing out on or reducing others. In particular, it sometimes meant less contact with patients and ‘hands-on’ research delivery activities (like recruitment and follow-ups).
The actual practical tasks of the role can be sort of, maybe not a surprise, but there's a lot of practical skills, so lab skills, becoming trained in basic processing of samples and centrifuges. And sometimes that’s a surprise because perhaps at the outset of becoming a research midwife, you're actually thinking what all the -, burning ideas that you’ve been harbouring and wanting to get on to. So, there is a little bit of a dance and a readjustment I think, and I won't say that it's -, I won't say that it's disappointment, but it's a regrouping of how perhaps I, or other people I can see, think of being of research midwife, cos sometimes it's a little bit removed from the ideas. But it also affords you many, many, many opportunities and perhap -, like for example, working in a clinical research team that’s doing interesting things round early pregnancy or early embryology; it affords you a huge, rich window into that particular speciality.
That wouldn’t have been there had you continued in a -, a sort of clinic -, purely clinical role.
So, so, it's interesting because it's very task based.
And the practical side of things, and also it's a bit like being in project management because understanding the process of how somebody in your team, or somewhere else, got an idea and how you actually -, how you actually get something out of the idea – a question, a research question; how does that happen? And I actually kind of enjoy that sort of process thing. It maybe is the micro-manager in me; I like thinking about how it will run on the shop floor.
But sometimes I think that’s the difference between a well planned and well executed study or not; one that’s actually thought about – 'Well, how's this going to sit in the setting? How's that going to work with the antenatal clinic midwives who aren't directly involved in the project?' And I think you have to have a real sort of business almost mind for that.
I don’t mind doing other people's work; I don’t mind that at all.
And I'm much more -. I think my personality type, I'm not a -, I'm not one of these what do you call them, these creator inventor type of people. I'm much better at ‘you give me a job to do-, you give me a study to run and I'll make it work’, whereas if you said to me, "Go and write a study," I'm a bit like ‘ooh, I don’t know what to do.' But I sort of wonder whether it would be nice to push myself in that direction a bit. I sort of feel that I'm not the ideas person, but I do have a couple of ideas that might work maybe.
Some NMAHPs we spoke to had pursued academic qualifications as a step to establishing an independent research career. Some said they were spurred on to do so because they felt a research delivery role was too limited. Others had different reasons. In her role as a research team leader, Simona felt the extra research-related and managerial activities had reduced her patient contact: “probably that’s what determined me to go and do my PhD, to have that kind of exposure to again seeing some patients”.
When she first went into a research midwife role, Alison expected to be more involved in study design.
When she first went into a research midwife role, Alison expected to be more involved in study design.
SHOW TEXT VERSION
PRINT TRANSCRIPT
That wouldn’t have been there had you continued in a -, a sort of clinic -, purely clinical role.
So, so, it's interesting because it's very task based.
And the practical side of things, and also it's a bit like being in project management because understanding the process of how somebody in your team, or somewhere else, got an idea and how you actually -, how you actually get something out of the idea – a question, a research question; how does that happen? And I actually kind of enjoy that sort of process thing. It maybe is the micro-manager in me; I like thinking about how it will run on the shop floor.
But sometimes I think that’s the difference between a well planned and well executed study or not; one that’s actually thought about – 'Well, how's this going to sit in the setting? How's that going to work with the antenatal clinic midwives who aren't directly involved in the project?' And I think you have to have a real sort of business almost mind for that.
Although Melanie had thought about writing her own studies one day, she enjoyed her role as it was and felt it suited her.
Although Melanie had thought about writing her own studies one day, she enjoyed her role as it was and felt it suited her.
SHOW TEXT VERSION
PRINT TRANSCRIPT
And I'm much more -. I think my personality type, I'm not a -, I'm not one of these what do you call them, these creator inventor type of people. I'm much better at ‘you give me a job to do-, you give me a study to run and I'll make it work’, whereas if you said to me, "Go and write a study," I'm a bit like ‘ooh, I don’t know what to do.' But I sort of wonder whether it would be nice to push myself in that direction a bit. I sort of feel that I'm not the ideas person, but I do have a couple of ideas that might work maybe.
Many of the NMAHPs who had undertaken academic qualifications had also retained their employed research delivery role and/or research team leadership role whilst doing so. This was the case for Ginny who completed a PhD whilst employed as a research nurse; she continued to be employed in this role but now saw herself as more (or also) a nurse researcher and she was keen to expand her post with other opportunities. Other people were no longer in, or had never been officially employed in, research delivery roles. This was the case for Mary and Karen, who had both established independent research careers in which they led their own research studies from design to dissemination.
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).
Copyright © 2024 University of Oxford. All rights reserved.