Sandra

Age at interview: 43

Brief Outline:

Sandra has been a research nurse for 12 years and she currently works for the Clinical Research Network. She now works mainly on palliative care research and has a role in capacity-building for research in care homes.

Background:

Sandra is a research nurse. She is married and has children. Her ethnic background is White British.

More about me...

Sandra is a research nurse for the Clinical Research Network. There are two main components to her current job, which she has held for about four years: one is to support palliative care research, the other is capacity-building for research in care homes. Sandra has worked in research for around 12 years and in nursing for a total of 20 years. She first sought out a research nurse job as she felt that she “needed a challenge”. Sandra initially worked on gastroenterology studies, an area she was knowledgeable in, and felt the move to research offered the chance to learn new skills. She started her first post on a short term contract, which she saw as an advantage: “it kind of gave me a get out without feeling like I’d quit or given up”. Her contract has since been renewed several times and she is now on a permanent contract.

When she began her role, Sandra found the transition challenging: “I was thinking what on earth have I let myself in for… It was a bit chaotic in the respect of I didn’t really enjoy not knowing what I was going to do”. Although she did not receive much formal training at this time, Sandra shadowed colleagues to gain “a feel for how it works”. She found some aspects of the role difficult to adjust to, including data administration. There were “lots of boring bits” and periods of time when Sandra did not have much patient contact. However, as she began to take on new studies, Sandra started enjoying the role and decided to stay in research. She discovered “other things that I enjoyed, so the health promotion and also the fact that I was making a difference for tomorrow, not just for today”.

Sandra is involved in recruiting patients to studies and ensuring that they are fully informed about what participation involves. Depending on the study, she visits patients either in their home or at the hospital, takes blood samples and assists with questionnaires as well as inputting or processing the data collected. During home visits in particular, Sandra is able to spend time with patients, talking to them about treatment options and offering advice. This is something she really enjoys about her role: “those kind of bits were the bits that actually made it more exciting for me… Giving that one-to-one back to someone was a real privilege”. Sandra has a research facilitation role too, which involves her supporting other research nurses as well as talking to care organisations about why research is important. 

Maintaining good relationships is important to Sandra. For example, she feels well-supported by her line managers and has regular contact with the study teams she works with, both of whom she can approach with questions and suggestions. She works hard to maintain good and trusting relationships with the clinical nurses responsible for the care of participants, which can help the research run smoothly: “they can see that I’ve put the patient first”. However, she finds that some health professionals are less keen to engage their patients in research. She thinks this reluctance sometimes comes from a fear that patients will be overburdened. However, Sandra feels it is important that patients can decide this for themselves, and has invested a lot of energy “talking about why research is important... We must give people a choice”. She tries to manage patient expectations around receiving findings from research. Although Sandra is proactive with chasing up results from studies she has been involved with, this can be a long process.

Sandra feels that passion and planning are central qualities of a good research nurse, as well as communication and organisational skills. Sandra emphasises that patient wellbeing must be at the forefront when recruiting for studies: “you have to be careful, some patients are so willing to help that they’re doing it because they want to help me and not because they want to help themselves”. Similarly, she thinks language or literacy problems can be a barrier for some. Sandra feels strongly about enabling research participation for these individuals. She tries to use accessible language and explain concepts in a way people can understand: “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”. In the future, Sandra plans to continue working in research. She feels that she has “more to give” in her career, but is not sure where this will take her. She would like to continue developing research capacity in areas where this is not yet well-established, including the health of prison populations.

Sandra thought that her background as a nurse mattered to her clinical colleagues and reassured them that she had prioritised patients.

We do have colleagues sometimes find it difficult to they want to protect the patients. So they don’t want to feel that they are creating a burden or adding things for them to do, but if you can help them to see that it’s about choices, we’re all about choices. You would never say you can’t have this, you’ve got to have that, it’s choices all the way. So, if we can give them, research should be a valid choice for everyone, exactly the same as anything else. And if they say no, that’s okay. And I think being a nurse helps to overcome some of those barriers with colleagues, cos I can, you know they can see I’m a nurse, we’re on the same page. Patients are our priority. Nothing else is more important than the patient. And I think because they know that they then start to trust the process a bit more, so they can be more engaged.

Sandra felt unsure about her job for the first few weeks. The pace of the work was very different to what she had been used to.

I was thinking what on earth have I let myself in for. It was a bit chaotic in the respect of I didn’t really enjoy not knowing what I was going to do. And the time restraints or conditions were very different to what I’d been used to being in a busy unit, to going to research where there could either be nothing or everything. So it was the two extremities of that, I did get to go out with a couple of other colleagues to begin with so as I could see them doing it, get a feel for how it works, they could see me do it. So, we all felt confident we were doing it in the correct way. But back then there wasn’t really a lot of training, so it was a case of you learnt about that study, but you didn’t really learn about the bigger picture. I did have to do good clinical practice training, but it wasn’t a pre-requisite that I had to do it before I started. So, I’d been doing it for six months before I’d done that training. It is obviously now. But when I went I was like, “Oh my goodness, there’s all these things that I didn’t really know about,” and but I used that then as a way of learning what I could improve and what to do better next time. And actually, when I went to the second one, I was like, “Oh yeah, I’m doing that, I’m doing that.” I can cross those off my list. I knew I’d improved, but every time, I started going every year then cos I knew I was keeping myself on track and improving things all the time. But yeah in the beginning there was lots of time where I perhaps didn’t have any patients to see, and that was quite a hard adjustment, and there were, there were boring bits. There’s no point pretending there’s not, there are lots of boring bits. But I learned to see that the other things that I enjoyed, so the health promotion, and also the fact that I was making a difference for tomorrow, not just for today, and not for, I’m not firefighting, I’m actually hopefully going to find something that eliminates the fire in the first place.

Sandra described a study where she had opportunities to use her knowledge to help patients in addition to carrying out the study activities.

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.

Sandra described some of the training, checklists and approaches used by the Clinical Research Network for research nurses.

There’s been training on and off I think for many years, and there’s different things and they get reinvented, don’t they? But a couple of years ago now the network, so we need to have a standardised document that when we’ve got new nurses coming in they can see what things they need to learn. What kind of conversations we need to have, what training they might need, and we can, we need to sign off to say that we feel that they understand it and they’re competent to do that. And that power then means that you, you know, I know I’m doing a good job, and I can do all of these things. And there’s no areas of concern. Obviously if there was a problem, if you couldn’t do something, then we need to address it, and see what the training is out there. So, the network does lots and lots of training, it’s one of the best organisations to work for, cos I just get loads of opportunity. And all the things like Good Clinical Practice training, we do that, but we also have bite size pieces of it, so two hours, two, three-hour sessions of individual aspects that you can go in and learn more about. So, you can go to one of those, so for instance if you wanted to know more about consenting people lacking capacity, we have a session on that, so you can go along to that, ask any questions, find out the information, and it, you can develop your skills. And then we’d use the competency document, have a conversation with the individual, talk, get them to talk about their experience, what they’ve done, what training they’ve done, and then we can say, “Okay, yeah, I feel you really understand that now, we can sign you off on that section.” Or if they came and they still didn’t really get it, we could say, “Okay, what I think we should do is go out and see a few people together, you watch me, then you can have a go, and we can see what you’re doing.” So, it means that we’re all on the same page and we’re giving the same level of service and standards of care to our patients.

When recruitment for a study was a struggle, Sandra found it useful to get advice from research nurses at another site.

Yes so we had a study that was looking at pain relief and recruitment was very poor and so I contacted a research nurse from another Trust, and said we’ve got the same study as you, but we’re not managing to recruit people, what are you doing that’s to increase your yield of patients coming through? And she said she had started going to the multi-disciplinary team meetings, sat in the meetings and then could just be like a big red flag that, to point people to the study. So what was happening was they would be seen in MDT [Multi-Disciplinary Team], they would discuss everything that needed to be discussed, but because there wasn’t a member from the research team there they would almost forget about the research, or they might remember later, and it was a bit too late. So she used to attend the meeting and then she could record potential participants and then she would be able to go back to the consultants afterwards and say, “you mentioned this person, it sounds like they might be suitable for this study,” and that, so then I started going to some of the MDT meetings for studies, for that study, and that did yield a better increase, yeah.

Sandra thought it was helpful to have data support to assist research nurses. She highlighted that entering data in a consistent way was key.

There probably are not enough data managers, data support people. We’ve often said, actually, it’s a different skill set to a nursing skill set but it’s an essential part of the role if you want the research to be valid. So, although some people are one finger typers, it could take quite a long time to do. So, I think investing in data people is really important, and actually the network has just appointed five new people to do that, so that hopefully we can focus more on the nursing aspects and they can input the data for us to save time. But they’ll probably do some basic research studies as well, where perhaps they don’t need to take any bloods, so they don’t need any clinical skills, but it’s just questionnaires and they can take in information and do that as well. I think it’s acknowledging that there’s different skills for different parts of the team, and yes, one person can do all of those things but are they doing it to the best of their ability, are we using the best use of their time and resources? Possibly not. So I think having someone who can input your data is great. I think one of the things we’ve found out in my first study was we did appoint another research nurse to work with us at one point, so there were three of us, and we suddenly realised when we were all inputting the data in differently, so yeah we had to then transfer, change the, you know, use find and search and change the information. So, some of us were putting “Yes and No,” and some of the people were putting “0” or “1” so “0” was no, and “1” was yes. And then, so we had to go back and change all that information so that we were all doing the same. And things like where we stored the samples in the freezer, what order do we put them in the box? So, some of us were going like this, and some of us were going like this, and it seems like nothing, but actually when you’re trying to find something later on that order is important. So then having standardised practises of working, if you’re working with multiple people, agree even the simplest thing. This is how we’re doing it. So, we’re all doing it the same. So later on, when I want to find the sample I’ll know that it’s going to be here, and it’s easier to map what, what we’re doing so.

Drawing on her research nursing expertise, Sandra had a “facilitation role” supporting hospices to develop their research capacity and activities.

So in my current role in palliative care, so I’ve been doing that now for four years, it started off by going out to hospices and talking to them about what research is, why it’s important, why it’s important in palliative care, and I was quite fortunate to approach them at a time when two documents that were really important, so the Liverpool Care Pathway had been de-bunked and was totally not going to be used anymore, cos it wasn’t evidence based. And also, there was a document brought out about hospice research and how hospices need to think about research. So, off the back of that it was a really good place to say to people well there’s this document, it talks about three different levels of research, about knowing about research and signposting people, about taking part in other people’s research, and about doing your own research. And it was a really good time to be talking to them about it, and sharing what the vision would be, and then once you’ve got some buy-in then say, “Oh we need to have at least three people who are interested cos one person can’t do it on their own, two people could do it but if one of them goes off sick you’re back to the first scenario, so three people would mean that you could probably move forward with it, and you’ve got to get some senior buy-in.” And I was quite fortunate my hospices were all very proactive, really interested, wanted to move forward, realised it was going to be difficult and a struggle, but actually they were committed to doing this for their patients.

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.

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.

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.

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.

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.

Sandra encouraged research nurses to be “proactive” and keep following up others they work with if need be.

I think this is not a job for someone who is, just waits for things to come to them. You have to be proactive, and that’s not a negative thing to a study team, they’ve got a billion things that they’re working on, and sometimes I think when they’re removed from us it’s easy to forget about the people on the ground, and what’s happening. So, going back to them and just saying, “Hi it’s me, I’m just wondering is this?” And again, I’ve never had anybody say, “Oh it’s that nurse ringing us again,” it’s not like that, they understand that we want to know cos we want to share. So just keep asking, and I don’t think there’s a problem with that.

Sandra highlighted the importance of good working relationships with Principal Investigators. She also encouraged engagement with study centres, especially if there are uncertainties or problems in studies.

So obviously the PI, the Principal Investigator, always work very closely with them. Make sure that they know what’s going on, where we’re at with the study. Have there been any changes? Do, you know we have regular meetings just to check in and see where we’re at, cos obviously they’re responsible for the study, I’m not, I’m responsible for my patients. They’re responsible for the study. So, they need to know everything that’s going on, and making sure that they’re aware. Working with the study teams, it’s really important to have really clear conversations, and if you’re not sure about something ask, I’ve never met a study team that have gone, “Phew what are you asking that for?” No, they always, always willing to help, I’ve never had any problems with my study teams. I don’t know whether I’ve just been lucky or whether that’s the case for everybody but they, we’re here to help them do their study, and they can’t get their results without us, and actually if we’ve got results but we don’t give it to them nothing’s going to happen with it. So again, it’s that partnership working, but yeah always go back to them and ask them questions, if I’ve got any concerns. There are study teams that are very new to research and actually I probably know a lot more about research than they do, so sometimes if I read something and I think, “Oh I’m not really sure that that’s quite right,” I’ll go back to them and say, “ it’s just a query, I’ve worked on studies before and this bit doesn’t really make sense to me. Can you explain to me how that works?” Or, “Are you considering changing that bit at all?”

Asking the question cos sometimes it changes and especially in palliative care, the time frames nearly always have to be extended because it takes longer to achieve the results than we’re expecting. And that happens in lots of studies not just in palliative care but because we don’t know, and you’re kind of thinking, “Oh yeah, can do this, this and this,” and because they take a timeline, but patients don’t conform to timelines. They conform to whatever path they’re on, so it depends where you intercept with them and is that going to work. So just keeping really clear, if you’re having any problems going back to the study team and say, “The patients are saying this, this is the reason I’m not-” so screening logs, and keeping that information as to why people say ‘no’, can be just as important as why they say ‘yes’.

In Sandra’s experience, the situation with having rooms to see patients about research had improved over time. It still required planning and could be an issue.

Yes so one of the things we try and do is when we’re saying we’re going to go out, is where will we be based? What room is available? Rooms can be difficult. I think over the ten, 15 years I’ve been doing this it’s got better, because I think it’s becoming more of every day, so as I think before it was a case of you were an add on and you just had to find somewhere, you know, this cupboard here. You know, any small place where you could have confidence that your patient was safe but also confidentiality could be maintained, that would be the room you would be in. Whereas now I think there’s more planning gone into that, so, you know, we look for ‘are there any rooms available in clinic that I could come into?’ Or working alongside the CNS’s [Clinical Nurse Specialists] so you could be in the same room as them and that they-, once they’ve done their bit you can do your bit. And sharing that responsibility. But rooms are a premium space. So, find-, you just have to find what works. But part of what the set up now is that you would go in and say, “Okay, these are the rooms available, this is how it’s going to work,” and if there isn’t a room, you can’t recruit people ‘cos you need somewhere that, that’s confidential. So if you want it to work, you’ll find a space, wherever that might be.

Sandra would like to continue supporting research capacity building and maybe carry this through to other “research naïve areas”.

I think I do feel that I’ve got more to give in my career but I’m not sure what that’s going to be yet. I don’t have any imminent plans to leave research. I love what I do. I think I work for a great organisation, I feel very cared for and looked after I think there’s great opportunity, I think there’s always new things coming up, I think I do, have realised that I like setting up new things, so when I came into working with palliative care and setting all the stuff up with the hospices, which wasn’t necessarily as much my nursing side, more a facilitation role, I’ve really enjoyed that helping other people to be able to do this, and I can’t do all of that on my own, but seeing that actually multiply that up by all these people, it’s really good. And the same with my care home work, I’ve been able to do those same sort of things. So, whether I think there might be some opportunity to work with other research naive areas, so I think that’s something that I’m quite interested in, so possibly doing more work with maybe schools, or with prisons. Areas that perhaps research doesn’t go on quite so much in but is equally valid areas for people to do it. Apart from that I’m not really sure. I feel that I want to do more, but I haven’t quite got a handle on what that is, but I’m not in a rush to find it because I’m enjoying what I’m doing right here, right now.

Sandra described the key skills and characteristics of an ideal research nurse. These included being patient, believing in the value of health research, problem-solving, good communication and working well with others.

So someone who is patient, it can’t be rushed, and it takes a lot of time. I think you have to be able to bear with the bits that you don’t like and really make the role what you want it to be. So, see pick out, pick out the bits that you really enjoy, you’ve still got to do all the other things, but like I said, like the health promotion aspect for me was really something that gave me something to anchor in while I settled into my research post, and really something that I could give back. I think passion, if you can be passionate and really believe in what you’re doing. So, there’s no point, if you work on a study and you don’t think this, you think it’s a load of rubbish, or it’s not really for you, then you’re probably not going to do very good at it. So, you’ve got to believe that you are making a difference and that you, you know, that it’s important. I think you have to have an eye for detail, and for process cos you need to be able to do things in a correct order, in order to be able to do everything that needs to be done. And I think as much as anything it’s about that, the autonomy to think, “Okay, this isn’t working, what can I do differently?” So, problem solving, thinking about how I can get the best results in the time frame that I’ve got, good communication skills. You’ve got to balance a lot of people and work with a lot of different types of people. So really understanding what everybody’s motivation is for where they are and thinking, okay so, like, like I said before, the CNSs [Clinical Nurse Specialists], what, what are the problems, why don’t they want to be involved? If you can identify what those barriers are, then you’re part of the way to overcoming them and then giving great opportunity for the patient to take part. So yeah, so communication, organisation, planning and passion.