Giving support to patients and participants was a core part of the role for nurses, midwives and allied health professionals (NMAHPs) in research*. Most people felt this was where their professional backgrounds, skills and knowledges really came to the fore as well as their values of patient advocacy and choice. Melanie thought she brought to her role ‘all those [nursing] skills and intrinsic sort of things that you’ve taken on board that I don’t really think about anymore, they’re just a natural part of who I am’. Sandra commented that ‘I still tend to call them patients [rather than participants] I think that might be the nurse in me maybe’.
NMAHPs in research delivery roles supported patients and participants in many ways. Some NMAHPs also had experience of other activities that were patient/participant/public-facing and could be supportive, such as raising awareness of health research amongst patients and the public. Katherine’s Public and Patient Involvement (PPI) activities were an important part of her doctoral research on augmentative and alternative communication aids for people with speech difficulties.
Patient contact – quantity and quality
Some NMAHPs found working in research involved them spending less of their overall working time in contact with patients compared to their previous (or ongoing) clinical non-research roles*. Usually this reduction was a result of them spending more time doing paper/computer-based work related to the research.
However, many found that the quantity of time spent with each patient/participant had increased and that there was room for more flexibility around this. As Osi explained, ‘you’re able to sit there [with the patient] and, especially with the instrumental deliveries, just ask them how it went [without] thinking ‘oh my gosh, I need to go and see another patient within like the next ten minutes”. Claire commented that there was ‘far more one-to-one contact’. Some NMAHPs felt this provided them with the opportunity to give meaningful and potentially ongoing emotional support.
In some studies, NMAHPs were able to build up a deep rapport with study participants – although this varied (e.g. number of visits, duration of visits, duration of study participation). Sian felt it was important to ‘build a relationship’ with participants, even if she was going to see them for only a one-off visit, in the hope that ‘when future studies come through the door, they’ll come back again’. At the same time, several people emphasised that the rapport and relationship should not become a pressure for patients to participate.
A few people felt it was important to be flexible when making arrangements for taking consent and study visits. As Carole said in the context of being a research midwife, ‘you can’t exactly have it all your own way, you’ve got to work around women’. In some studies, it was possible to fit around appointments that patients already had booked. However, finding appropriate spaces in which to see potential participants could be a challenge. Some NMAHPs offered home visits, or check-ins over the phone, to help accommodate the preferences and needs of participants.
Supporting patients and participants
Several people highlighted how important it was to be sensitive when approaching patients or their families about research – particularly if they had just received ‘bad news’. Many of those we interviewed said they would not approach if they felt it was inappropriate to do so at that time, and insight from other colleagues caring for the patient could help with this decision. At the same time, this was balanced against wanting to provide patients with access to research opportunities and, as Ellen said, the fact that ‘your trial might be helping’ people. In certain situations, such as paramedic and emergency research involving unconscious patients, the typical model of approaching, recruiting and consenting patients [was not always possible.
There were different approaches research NMAHPs took to introducing themselves and studies to patients, and in some situations they were introduced initially by other staff. If approaching on their own, some people also found it was helpful to mention early on that they worked with the patient’s consultant.
If patients were interested in taking part, careful explanation about the study was required and especially around concepts like randomisation. Most people felt that simple, clear language was best and they incorporated ways to check comprehension as well as opportunities for patients to ask questions. Many research NMAHPs emphasised that it was important to support and respect patient decisions about whether or not to take part. Sometimes this involved discussing related concerns about what study participation would mean – for example, whether/how many extra visits would be involved and the possible risks from taking part. Other key details to communicate included: taking part in research was an optional activity, and that it was separate/additional to the standard clinical care they would receive. Studies had different timeframes in which patients could consider whether or not they wanted to take part.
Providing the study information had been explained clearly and seemed to have been understood by the potential participant, some research NMAHPs saw getting a ‘no’ from a potential participant as a positive thing because it demonstrated their ability to choose for themselves. Likewise, some highlighted that it was important to make sure participants knew they could withdraw from research. Christine, Sugrah and Dawn felt these aspects were especially crucial in the context of paediatric studies – the parents might be keen but, where possible, it was important to respect the wishes of the children. Ginny also highlighted that fertility treatments often involve ‘a couple that’s really important that both of them are in agreement’ about whether to take part in a study.
Some NMAHPs spoke about ways they supported patients through providing access to treatments and interventions that they might otherwise not have had. Studies were sometimes seen as the ‘only’ or ‘last’ option for patients when other avenues had been ‘exhausted’, were otherwise unsuitable or financially inaccessible. Whilst most studies also had risks involved, some also had potential benefits for study participants – including those which were physiological (such as symptom management or disease reduction), preventative (early or enhanced detection) and psycho-social (improvements in quality of life).
Many NMAHPs talked about the emotional support they gave to patients and their families. This included giving patients opportunities to talk, providing extra information or advice, and signposting to suitable resources and services. Sandra felt research participation could be very personally rewarding for patients, including those involved in palliative care studies: ‘they feel it’s an opportunity to give something back, it’s about legacy, it’s about taking control of something when everything else is out of your control’. Alison highlighted an early pregnancy study which provided a lot of additional contact with health professionals in the study team: ‘not only are they getting lot more reassurance but they’re also learning a lot more about their own bodies and early embryology, that the usual maternity care package doesn’t offer’.
Whilst direct benefit to individual patients participating in studies was not always possible in research, many of the NMAHPs highlighted the overarching value of health research: building an evidence-base and changing practice for future patient benefit. Helen explained that commercial studies were an important part of this, as ‘the massive financial deficit [the NHS is in means it] could not be doing drug development’.
Data collected in the course of studies was sometimes useful for patients and their health or medical professionals. It depended on the study, but some allowed or required individual results to be shared with participants and their health or medical professionals. This included studies which involved telling the patient about their outcomes in relation to a technology being tested, such as a study Tabitha worked on about anomaly risk scores in twin pregnancies. Carole worked on a study asking pregnant women to self-monitor their blood pressure. If she saw high results, she would get in touch with them in addition to the electronic system sending a message about the result to the patient; for her, this extra follow-up was part of her midwifery ‘duty of care to take active measures’.
Other times, research NMAHPs had uncovered a result (such as a high blood pressure reading) in the course of routine data collection or spotted a discrepancy in the medical notes that was not directly related to the study. In these cases, the NMAHP could encourage the patient to contact their usual care health professionals or set up this contact for them. These situations could also be an opportunity to share their professional advice, for example on lifestyle changes that might help. Sian and Sandra both enjoyed the scope for ‘health promotion’ within their roles. However, Ella highlighted the fine line in what should be said: ‘you have to be wise in how you communicate so that it remains positive. You don’t want to destroy the relationship between the GP and the patient’.
Patients enrolled in studies often asked research NMAHPs questions not directly related or relevant to the study. This included questions that the patient had forgotten to ask one of their other health or medical professionals at a previous time, and sometimes it was to seek clarification about what had been said to them. As James explained, ‘they may not have understood the words that they’ve been given by the consultant’. Ellen thought this type of ‘translational’ role (‘the doctor explains to the patient and then they go away and the patient says, ‘What do they mean?”) was a familiar experience for nurses, including those in research.
Some research NMAHPs found that patients opened up to them about the wider context and concerns of their lives, in part because of the rapport established through study participation. Sometimes this highlighted concerns in relation to their health and how it impacted on wider aspects of their lives, such as affecting their family and daily routines. For some, listening and responding in a helpful or sympathetic manner was seen as part of the care they provided to patients through their research role. For some research NMAHPs, it was one of the most rewarding aspects of their role and which they felt benefitted participants significantly. Michael explained that, as a cancer research nurse, ‘you’re giving holistic care, so you’re asking patients about their marriage, about their sex life, about life with cancer, and when you step into that kind of intimate circle with someone it’s very special and very unique’. However, some people found there was a balance to be struck if the conversation became irrelevant – they sometimes had to politely disengage or set boundaries, particularly if it was negatively impinging on being able to carry out the research study activities in a timely manner.
*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).