Nurses, midwives & allied health professionals in research
What research delivery activities do nurses, midwives and AHPs do? An overview
Those in research delivery roles—whether nurses, midwives, allied health professionals (NMAHPs), or others—are the people ‘on the ground’ who carry out study activities. As Osi said about research midwives, “they make it happen”. Whilst the protocol or research plan will usually have been designed by someone else, they carry out research but do not necessarily have input into design, analysis or dissemination of the research. Not everyone we spoke to for this study was in a solely research delivery role, but many were*.
Research delivery roles can involve a huge range of activities. These varied from place to place, team to team and study to study but, at their core, they involve working with patients, collecting data and liaising with the wider research team. People with the same or similar job title might be involved in some activities (whether or not acknowledged in their job description), whilst others were not. Sometimes this was down to personal choices by the individual, other times it was to do with the way the research role or teams were structured and managed, and what types of opportunities for extra activities were available or encouraged
Okay, so I guess the research role, research nurse role is very different across the board so, you know, you could go to a clinic-, phase 1 clinical trials unit where you’ll have the nurses actually giving the drugs and things. So we, we’ve, our roles evolved here, so when I first started here back in 2000 I was one of those nurses up giving the chemotherapy but then I realised that actually that wasn’t, that wasn’t my area of expertise, my area of expertise was the research, was understanding about randomisation, reading protocols and understanding about novel therapies and things. So what I try to impress on my team, and it’s particularly difficult for generic research nurses who are perhaps involved in 15, 16 different specialties perhaps none of which are their-, might have been their speciality that, you know, your skills are research that, that’s your, you’re a research specialist so and we try and, we’ve done a bit of work on that at our sort of away-day and things like that.
Recruitment and data collection
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.
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At the core of the research delivery activities described by research NMAHPs were:
- recruiting participants to studies (identifying and approaching eligible patients, and taking consent), and
- data collection and management (including reporting adverse events).
These activities varied depending on study type and the topic of interest, as well as sponsor/funder (e.g. academic, commercial). Most people we spoke to were involved in supporting several projects simultaneously, often with a great deal of variety. There were certain steps and activities involved in most studies which were undertaken by research NMAHPs. For example, the majority involved identifying eligible participants who were then approached in person to see if they would be interested in taking part in the study. If they were willing to be enrolled, they usually signed consent forms.
However, there were a few contexts where these types of research delivery activities flowed or occurred in a different way to the ‘norm’. Graham explained that paramedic studies do not generally identify patients and then approach them for consent to enrol, owing to the emergency situations and because patients may be unconscious. Instead, he said that cluster randomisation (in which a group of patients, rather than individuals, are randomised) and retrospective consent was often used.
Some of the studies have been recruiting participants, as I say, for a medicines trial. And those were children that had been recruited, to take part in a large study. And so talking to parents coming into outpatient clinic about what would be involved in the study. The clinician would be taking informed consent, and I'd be sort of providing information, supporting the parents and the children through that process.
And then, yeah, collecting all the study information. So, baseline data prior to them receiving the trial medication. And then seeing parents and the children at follow-up appointments as well. So most of that was sort of validated questionnaire scales. But also collecting diaries that the parents were returning. And medication that the parents were returning, unused. And there were also clinical assessments done, in that case by audiologist. So I'd be helping to sort of coordinate that and ensure that the data collected during the clinical assessment was then recorded for the purposes of the study.
And checking sort of notes, entries, and those sorts of things.
In research, basically we deal with any patients who are, you know, put down for any radiotherapy clinical trials. We screen the patients, we see them in the clinic, we introduce the clinical trial to them and then once if they are happy with the clinical trial information then we consent patients to the trials. We collect all their baseline medical information, we put them onto clinical report forms, inform the study centre and, while they’re on radiotherapy treatment, we follow them up, we do a weekly review or two weekly reviews on patients to see how they are on the clinical trial with the radiotherapy treatment, how they are getting on. And obviously to make sure they’re absolutely fine with no problems and with the radiotherapy trials usually they are fine, they don’t-, it’s not a systematic treatment so they are absolutely normal most of them apart from sometimes they can have some skin toxicities mainly from radiotherapy but apart from that they’re usually okay.
And yeah, so review them. And also after they’re finished their radiotherapy treatment we follow them up regularly like three monthly or six monthly again to make sure there are any late toxicities of radiotherapy are still there and seen by clinicians as well, obviously.
Other related sections on the website
As a research nurse, Vicky was involved in many activities as part of a trial for children with glue ear.
As a research nurse, Vicky was involved in many activities as part of a trial for children with glue ear.
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And then, yeah, collecting all the study information. So, baseline data prior to them receiving the trial medication. And then seeing parents and the children at follow-up appointments as well. So most of that was sort of validated questionnaire scales. But also collecting diaries that the parents were returning. And medication that the parents were returning, unused. And there were also clinical assessments done, in that case by audiologist. So I'd be helping to sort of coordinate that and ensure that the data collected during the clinical assessment was then recorded for the purposes of the study.
And checking sort of notes, entries, and those sorts of things.
Sanjos, a research radiographer, gave an overview of his research activities.
Sanjos, a research radiographer, gave an overview of his research activities.
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And yeah, so review them. And also after they’re finished their radiotherapy treatment we follow them up regularly like three monthly or six monthly again to make sure there are any late toxicities of radiotherapy are still there and seen by clinicians as well, obviously.
The roles of research NMAHPs are multidimensional, involving a variety of activities and skills. Within this, it often involved:
- liaising/working with colleagues (including Principal Investigators in study teams or centres and non-research clinical colleagues*) and
- supporting patients during research.
Some people we spoke to were also involved in extra activities beyond research delivery including assessing the feasibility of studies and research team management as well as helping raise awareness about the value of research via publicity and teaching.
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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