Theme 1: External drives and internal motives for involvement in ARLD applied health research
The existing evidence gap on ARLD treatment consisted of an external drive for supporting the trialling new interventions. The multidisciplinary nature of ARLD meant that widespread research priorities were reported across the hepatology and addiction fields. As noted by P16:
“I think a lot of the research on ARLD has been done by hepatologists, and there’s a major philosophical difference between the way hepatology and addictions research is done. I don’t think the literature captures that at all.” (P16, clinician-researcher, dual role)
From an addictions’ perspective, and as illustrated by P13, the incorporation of a harm reduction approach and adaptation of services should be further researched:
“How can services adapt or encourage people? That is going to be slightly different about how we can promote abstinence or harm reduction from alcohol use. That’s just an unanswered question at present.” (P13, nurse, clinical-facing role)
From a hepatology point of view, P11 indicated that ARLD patients are an understudied population whose health outcomes could benefit from earlier identification and intervention:
“Patients with ARLD present quite late. By the time they come to the hospital, they are severely decompensated, so there is not much of an interest or a research interest in identifying patients and treating them early on.” (P11, clinician, clinical-facing role)
Contributing towards the improvement of patient outcomes through research consisted of an internal motivation. Despite the above differences, a recurrent view amongst participants was a sense of duty towards improving patient outcomes, aligned with their professional ethos. Thus, the generation and translation of high-quality evidence motivated research involvement. This was described by P16:
“In my role there’s a great deal of death. And that takes an emotional toll, and research has an emotional function for me. It enables me to still feel like I’m doing something to help, while not spending all my time in that emotional space, so it’s very protective in that way.” (P16, clinician-researcher, dual role)
Participant 16 proceeded to emphasise the role of research in guiding practice and policy as an external drive for conducting research. Particularly, embedding research designs into real-world, clinical settings allowed for a better translation of evidence:
“I think it also gives you a really good idea of what’s important to patients to focus on, because you’re talking to them all the time (..) you are very aware of what a clinically meaningful outcome is, which I would distinguish from a statistically meaningful outcome (…) that shift probably comes from being immersed in clinical practice.” (P16, clinician-researcher, dual role)
Personal interest was an additional internal motive for supporting applied health research. For participants with a clinical-facing role only, such as P11, the ability to develop a researcher identity prompted an active involvement:
“I’m not in a formal post of research, but it’s a personal interest and there are future aspirations to have an academic career alongside my clinical work.” (P11, clinician, clinical-facing role)
Participants valued and found it rewarding for their professional identity to develop research skills relevant to their area of expertise. This was explained by P5, who had recently formally started a research post in addition to their clinical role:
“The novelty of it (...) I know that there isn’t very much about this area in this field, and that’s quite interesting. And the whole process of research is new to me since starting here doing this role, so I guess it’s like another skill, it’s everything that comes along with it (…) the whole process is new and interesting.” (P5, clinician-researcher, dual role)
Theme 2: Research-clinical interface: collaborations, knowledge and skill-sharing
A common theme surfacing across all participants was the researcher-clinician collaborations. For participants with clinical duties, interaction with research frequently involved the identification and referral of potential participants to ongoing clinical trials. As described by P4:
“If I get new referrals from patients in the clinic or the wards and if there’s a potential candidate, I just give them the number and then they decide whether the patient is suitable or not.” (P4, nurse, clinical-facing role)
Participants with a research-facing role often accompanied clinicians on ward rounds to get familiar with patients and obtain a more detailed insight into their clinical profiles. This allowed research teams to better ascertain patients’ suitability for the trials while strengthening researcher-clinician links. In addition, as observed by P9, the integration of research teams was also noted to shape patients’ perceptions of research:
“That means the research team can understand a bit more about the patient what is being said to them on that day. If you show the patients that we all work together, they see it in a completely different way - some patients can be reluctant to engage because they see it as separate.” (P9, clinical research nurse, research-facing role)
The co-location of teams and shared use of clinical resources enabled an exchange of knowledge and skills. By accommodating each other’s needs, this exchange strengthened interpersonal links and optimised research procedures taking place. This was noted to ease the research burden upon clinicians while improving patient experience. P1 explained these points:
“We try as much as we can to work along with them, because at the end of the day we’re looking after the same patients (…) we accommodate their patients, do their FibroScans and record it for them. I have initiated for some of their nurses to be trained on how to use the FibroScan. That will save time for the patient and for the staff as well.” (P1, nurse, clinical-facing role)
Theme 3: Implementation of ARLD applied health research: challenges and recommendations for future research
Despite being eager to be involved in applied health research, participants reported challenges in supporting research processes. Namely, these included competing demands, role conflict, and insufficient resource availability, which shaped research capacity.
As noted in the interview data, research involvement was often described as burdensome. This was mostly due to competing demands and time constraints and echoed across participants involved in hepatology and addictions care. For example, P10, a participant with a clinical-facing role in addictions, identified that workload as limiting research capacity:
“We’re interested in doing and seeing the data and the results of a study, but also is it going to put pressure on the team and our clinical caseload? That’s my worry when a study is mentioned to me, that is this going to be heavy to the team.” (P10, nurse, clinical-facing role)
The same observation was mirrored by hepatology staff. Despite the importance of applied health research, P4, with a role in hepatology, recognised that time constraints prevented further participation:
“I know research is important, and it’s part of our roles, but I cannot get involved with more than I do at the moment because I’m on my own in the unit, so it will be stretching my role a lot.” (P4, nurse, clinical-facing role)
As suggested above by P4, participants described a pressuring expectation to be involved in research. This expectation, often described as an imposition as opposed to a complement to their formal duties, represented a source of role conflict. Role conflict refers to incompatible, conflicting expectations and demands experienced in the workplace [33]. This can be within (intraprofessional) and between (extraprofessional) roles. The excerpts below, by P17 and P7, illustrate how research processes originated conflicts within and between roles, respectively:
“You cannot say no. I will just do what am I told to do. I remember one of my colleagues saying ‘we should just do what our boss tells us’ because it’s research and there are expectations.” (P7, clinical research nurse, research-facing role)
“It’s just put on the team, we really don’t have a choice if the study is there. It should be clarified that ‘this is not going to be additional to your caseload’. The NHS is very short-staffed, and we all have pressure on timeframe and performance” (P10, nurse, clinical-facing role)
Intraprofessional role conflict was reported by clinician-researchers. At the stage of recruitment, experiential knowledge of the setting and clinical population were heuristic devices facilitating patient approach and recruitment (P14). However, research processes often conflict with clinical demands (P5). This is described in the statements below:
“I think as a medic I know my way around with the time limitations that I have. So I found it quite easy to find the right people to ask which patients are suitable for my studies.” (P14, clinician-researcher, dual role)
“I find it a bit difficult to just combine it at the same time, in the sense that if I see them in the clinic, it’s the ideal setting for recruiting as well. But if the clinic’s busy it’s difficult to recruit them at the same time” (P5, clinician-researcher, dual-role)
Intraprofessional role conflict at the stages of recruitment and intervention delivery was also experienced by participants who were exclusively dedicated to research. This often consisted of barriers to fulfilling recruitment and study targets due to resource strains, described by P9 below:
“I guess the more people you have in the team, the more resources you put in, the more likely you are to be able to offer research to patients. That’s the problem we have sometimes: we haven’t got the resources to deliver all the trials safely, so if you haven’t got enough resources to look after all the patients then you need to make a pause.” (P9, clinical research nurse, research-facing role)
During the above stages, participants also reported extraprofessional role conflict when supporting research. From an administrative perspective, delivering interventions as part of standard care posed operational challenges. This was described by P8 and P11, involved in ARLD care and research, and had implications for patient experience:
“The only thing with clinics is that they are very full. And we can’t keep overbooking because if you keep overbooking, the time is shorter with patients.” (P8, administrative, clinical-facing role)
“Although it is not that arduous in terms of my reviewing them in the clinic, it definitely takes up my clinic slot, which I’m not able to offer to someone who needs it. Or I have to overbook my clinic, which creates a strain on my clinic list.” (P11, clinician, clinical-facing role)
At the operational level, an additional source of extraprofessional role conflict was due to the availability of facilities to embed research in clinical settings. As noted, the co-location of research and clinical structures can enhance patient experience and reduce research attrition, through familiarity and minimisation of research. It may also foster a sustained alliance between healthcare providers, researchers, and patients. P4 attributed this to ease of access and convenience:
“It’s good because they’re easy to contact and patients can see either the clinicians or the nurses at the same time they see the research team. It’s more comfortable for them and for the staff.” (P4, nurse, clinical-facing role)
However, as reported by P7, due to the broad spectrum of liver aetiologies and respective numerous research teams, resource coverage and facilities to conduct research in clinical environments were insufficient:
“We need more rooms to prepare the medications for the patients and conduct assessments. We only have one room at the moment, and we are fighting over that, or we have to wait for clinical rooms to be vacant for us to be able to use them.” (P7, clinical research nurse, research-facing role)
Within this intersection of research care, the shortage of physical spaces resulted in an additional source of extraprofessional role conflict:
“Most of the time all the rooms are occupied, and this affects the research team. If we are on board, and they [research team] understand that they need to come out of the room before the clinic, that gives my team time to tidy up the room and get it ready for consultations. Where I have a problem is when they go over time, and whoever needs that room to start their clinic is waiting outside. That means I’m not coordinating well; I’m not organising well.” (P1, nurse, clinical-facing role)
Resource shortage and lack of funding were therefore reported as barriers to applied health research. Participants showed concerns about the insufficient financial resources available to trial novel interventions for ARLD. As explained by P12:
“Addiction is not a very funded area, even though it’s important that we have the information to be able to put forward solutions. I just think it’s seen as a lower priority, with an already quite a low budget.” (P12, nurse, clinical-facing role)
While seeking an understanding of the above, two explanations were obtained. The first, indicated by P14, related to stigma historically associated with substance use and respective funding allocation:
“I think in the past there was a big stigma surrounding these patients and there wasn’t the research interest. I think we’re behind cause of that. Lack of research interest in the past, lack of resources.” (P14, clinician-researcher, dual role)
Another justification offered for the underfunding of ARLD research was linked to the role of industry in funding research. P11 suggested that this was due to a lower financial interest in non-commercial research:
“When there’s a potential pharmaceutical involved the money is injected in there and that propels the research. Whereas that’s not the case for ARLD. And if it’s hard to get funding, then clinicians are naturally not inclined to explore research in this field. If you’ve got money then you can have resources, nurses, space, but without funding it is difficult.” (P11, clinician, clinical-facing role)
Finally, pressures upon clinical care also influenced research procedures. P16 explained how the rapid throughput of patients during hospitalisation affected patient enrolment into research:
“Because of modern-day bed pressures and the use of hot clinics, people are discharged quite early on in their recovery, meaning that they are gone very quickly! Which gives you quite a limited space to see them, consent them, recruit them, all of that.” (P16, clinician-researcher, dual role)
Staff’s perspectives on future directions for applied health research
Participants were unanimous in the view that equal participation across all phases of research, as well as further organisational support, could enhance future research. P9 stated a need for more agency to be given to stakeholders across the research life cycle:
“I think a problem is that before this was done mainly by PIs only. The research nurse and the poor fellow would have to just deal with that and try to meet targets. Whilst if everyone gets involved and the nurses get a voice, and then we can say ‘let’s commit to do less. If we then have the resources and the capacity to do more then we can’. So then we don’t have as much pressure from the sponsors to recruit.” (P9, clinical research nurse, research-facing role)
Protected time was an additional recommendation for future research. Participants with clinical-facing roles, such as P15, identified a need for dedicated time to develop research skills and support ongoing studies:
“It’s quite interesting doing it, gives you something else to do other than your daily job. It would be nice to have allocated time every week to do research, to look into research, to build our own project.” (P15, nurse, clinical-facing role)
Finally, an additional suggestion relates to a need for further support to foster collaboration across research teams by sharing resources and data. As noted by P14, this can optimise applied health research and improve patient experience:
“In my opinion we should find a way to share samples. There are so many competing studies that I think it would be better for patient experience if there was a way to collaborate so that only one sample is taken, and you share the sample.” (P14, clinician-researcher, dual role)