Helen
Helen has worked as a research nurse for 22 years. She is now the Lead Research Nurse and the Clinical Trials Manager for her Trust, with oversight for a team of research nurses and allied health professionals.
Helen is the lead research nurse and clinical trials manager for her Trust. She is married and has children. Her ethnic background is White British.
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Helen has worked as a research nurse for 22 years. She has a background in oncology and was “headhunted” by a consultant for a research nurse post. Helen had no official training or induction when she started and was “just thrown into it”, but had good support from her manager (who was an experienced research nurse) and shared an office with other research nurses. Helen is now the Lead Research Nurse and the Clinical Trials Manager for her Trust. The roles involve managing a research team of around 23 full-time equivalent staff, but she still has patient contact as this is very important to her. She enjoys her job and finds that “every day is different, a new challenge”.
Across her career, Helen has seen the roles and responsibilities of research nurses change in a number of ways. For example, when she first started, consenting patients to studies was not a task that research nurses undertook. Instead, she was involved in other activities to support patients through studies – including collecting toxicities, giving medications, and conducting follow-ups. Now, Helen and many of the research nurses or allied health professionals in her team take informed consent from patients and this is “a part of the role that I enjoy probably the most”. Other components of being Lead Research Nurse and Clinical Trials Manager include screening for eligible patients, teaching Good Clinical Practice, attending clinical governance meetings, liaising with study teams, and undertaking reviews of ongoing studies. Helen has managerial responsibilities for research health professionals in her team. Most research staff are now on permanent contracts but some are fixed-term; it can be a “tense time” when contract renewals loom, subject to funding. There is currently a hiring freeze in Helen’s Trust which means she has not been able to replace research staff who have left.
Helen is passionate about raising the profile of health research and research nursing. She thinks there has long been a perception that research nurses have little to no contact with patients and sit at a desk entering data all day. Helen acknowledges that research nurses spend a portion of their time on paperwork but that this is “relevant paperwork – it’s all to do with the patient and it’s valuable”. She feels there’s now more appreciation for the importance of research and that research nurses are “the glue that keeps it all together”, although this recognition continues to be a “drip, drip, drip” process. Helen has worked hard to develop good relationships with clinical staff, including Clinical Nurse Specialists with whom she sees some role similarities, meaning that, “where there aren’t enough Clinical Nurse Specialists, we most certainly plug that gap”.
Helen feels that there remain obstacles around research to overcome with patients and clinical staff alike. For example, the word ‘trial’ can conjure up negative connotations and so she encourages her research team to use ‘study’ instead. Talking about ‘placebos’ can also be confusing. She worries that such terminology can be off-putting for patients and a barrier to becoming truly informed about a study to make a decision – whether that be to take part or decline. She thinks it is important that research nurses find ways to check understanding but to do so in a way which doesn’t make the patient feel they are being tested. Helen cautions against clinical staff gatekeeping research nurses away from certain patients. She emphasises that research nurses are trained and knowledgeable about patient distress, and that it should be up to the patient to choose if they want to take part in studies. Helen thinks it is good that research nurses in her Trust now wear the Clinical Nurse Specialist uniform because it highlights research as their speciality, helps others to recognise them as part of the clinical team (whilst differentiating them from ward staff), and reinforces their identities as nurses.
Helen comments that research nurses should have good communication skills, motivation, belief in the value of research, and the ability to prioritise tasks and work autonomously. She encourages student nurses to engage with research teams to understand what they do. She doesn’t recommend that student nurses go straight into research after qualifying, and suggests they should gain broader experience first, but highlights ways that they can support research as well. For example, she encourages clinical nurses to be aware of studies taking place and respond positively when patients say they are participating in one. Helen feels that, with increased awareness about research nurses, there have been improved career pathway options. She hopes to become a nurse prescriber which would be beneficial in running drug trials.
There are many ways that Helen and her colleagues have tried to raise the profile of research and how it contributes to improving healthcare.
There are many ways that Helen and her colleagues have tried to raise the profile of research and how it contributes to improving healthcare.
Helen and her research team recently started wearing Clinical Nurse Specialist uniforms. She thinks this has been beneficial.
Helen and her research team recently started wearing Clinical Nurse Specialist uniforms. She thinks this has been beneficial.
I know in some places research staff don’t wear uniforms but I feel quite strongly that we do wear uniforms because I think that I’m a nurse and in fact in the past we had lots of discussions with my manager at the time about perhaps we all just wear the same, the same uniform and it’s a specific research uniform. And I’m a nurse and I’ve trained to be a nurse, I’m a Sister and I don’t want that taken away from me because that’s how I identify myself and that’s what I want to be. So to me, your uniform is very important and also by wearing a uniform I think you are seen as part of the clinical team. When all my Band 6’s wore the CNS [Clinical Nurse Specialist] uniform they suddenly found it a lot better as well because I think what was happening before that was they were going onto wards and they-, obviously the ward staff would all be everywhere and then, you know, the doctor would come on or relatives would come on and start asking questions and we’d always feel we were going, “Oh sorry, I don’t know, I don’t know”, and actually now we’ve got the CNS uniforms the doctors know that we’re not part of the ward team because we’re CNS’s so we’re, you know, we’re coming in and doing what we need to do and then we’re going out, so that’s actually helped quite, quite a bit. But I do feel quite strongly about, about uniforms because I think it identifies us.
Helen, a lead research nurse and clinical trials manager, talked about there being a variety of roles for research nurses.
Helen, a lead research nurse and clinical trials manager, talked about there being a variety of roles for research nurses.
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.
Helen talked about Site Initiation Visits. These meetings went best when attended by representatives from all teams and departments who would be involved in the study at that site.
Helen talked about Site Initiation Visits. These meetings went best when attended by representatives from all teams and departments who would be involved in the study at that site.
So an ideal Site Initiation Visit would be that I would invite as many people as possible because I think if you get engagement at the very start with the CNS’s as well and support services if they’re ever able to come, then that would be great because they understand about the study form the very beginning. But in reality that doesn’t always happen, that everyone gets involved, but I do, I would invite everybody who I thought might want to be there. And then the ideal would be that they would go through the protocol at the very beginning and everybody was there and ask any questions and that might take about an hour and then at that point all the clinical team, the non-research staff can all go because they don’t wanna go through the Case Report Forms and the electronic CRF and, you know, all the sample handling and things, so that would be-, you know, we’d probably carry for about another hour and then yeah that would be, but that’s a great opp-, I take loads and loads of notes and then from that I start working out the work instructions for the study and how we’re gonna run the study.
In practice.
Helen talked about fostering good working relationships with Clinical Nurse Specialists in particular. She felt it was important to convey that research was about ultimately about patient choice and benefit.
Helen talked about fostering good working relationships with Clinical Nurse Specialists in particular. She felt it was important to convey that research was about ultimately about patient choice and benefit.
Helen explained a bit about the funding arrangements for research NMAHPs in her team.
Helen explained a bit about the funding arrangements for research NMAHPs in her team.
Helen’s team worked flexibly to recruit patients from waiting list initiative clinics which were often outside of their core working hours.
Helen’s team worked flexibly to recruit patients from waiting list initiative clinics which were often outside of their core working hours.
Which is a shame.