North of England Alcohol Team (NEAT) research partnership: barriers and opportunities to deliver research into alcohol related liver disease in the north of England

Online survey of research capacity

A region-wide survey of experience, training and confidence in research was done online using a google form. This survey was shared widely amongst all practitioners working with people with alcohol excess and/or ArLD. A further survey aimed specifically at hepatologists who are most likely to act as chief investigators or principal investigators was done in tandem with another NIHR funded research partnership, ALPINE. These surveys were anonymous and response was voluntary. Respondents were asked to indicate their professional background but no identifying information was recorded

Analysis of meeting outputs

Face-to-face meetings were held across the north of England in Manchester, Leeds and Middlesbrough and a further meeting held online where barriers to research were explored in more detail. These meetings were facilitated by an independent meeting leader to ensure that all attendees had the opportunity to present their opinions. Views of barriers to research were captured with free text and photographs. Potential solutions to perceived research barriers were discussed. Free text was recorded and themes identified with word frequency analysis to produce word clouds. No identifiable information about participants was recorded. Areas of research into ArLD that should be a priority for research attention were discussed and meeting attendees invited to record these with free text.

Patient and public involvement

The NEAT project included funding to support the development of a dedicated patient and public involvement and engagement (PPIE) group. A liver charity group, LiverNorth, was engaged from the outset of the project and acted as co-applicants for the initial application.

Statistical analysis, consent and ethics

The outcome of meetings to discuss research was summarised using text analyses to identify common themes, including generation of word frequency and visualised with word cloud images. We did not seek ethical approval for this work as no sensitive data were collected regarding for example gender, age, ethnicity or sexual orientation. All reponses to online surveys or in meetings were voluntary and anonymous and are reported as simple aggregate data. In view of this, and the hybrid nature of meetings (i.e. a combination of virtual and face to face events) we sought verbal consent to make notes of the words that people put onto post-it notes.

Barriers to research

Training, education and experience. Seventy-five respondents completed an online survey to report their experience of medical research. This included 28 nurses, doctors and 12 additional workers. There was a marked spread of experience, confidence and training in research (Figure 1). Overall a minority of respondents (43%) reported some or lots of experience of research, 27% reported being fairly confident or very confident doing research and 27% of respondents reported receiving some or lots of research training (Figure 1).

Figure 1. Survey of research experience, confidence and training amongst ArLD research stakeholders in the north of England.

Experience, confidence and training in research differed by professional background. Respondents who considered themselves academic reported very high levels of each metric as did medical doctors, whereas alcohol and addiction practitioners and nursing staff reported lower levels of experience (supplementary table)⁴.

Perceived barriers to research. Face to face meetings were held across the north of England (in Manchester, Middlesbrough and Leeds) and online. At each meeting attendees considered current barriers to research in alcohol related liver disease. Common barriers identified were stigma around ArLD, a lack of practitioners’ time for research, and a lack of training and experience (Figure 2). Sorting these barriers into themes showed that practical problems, in particular time, were the biggest barriers to research in ArLD, as well as stigma, training and funding. Further to this, in collaboration with another NIHR funded research partnership (ALPINE) we undertook another survey of the medical workforce in gastroenterology or hepatology to explore current time available for research. Of twenty respondents, 8 reported that they had protected research time in their job plan but overall the average time available for research was low - a median of 1 session per week and there was scepticism that doing research was feasible with current arrangements: only 6 of the respondents considered that research was feasible with current demands on their time.

Figure 2. Word cloud to demonstrate perceived barriers to research in alcohol related liver disease.

Potential solutions to the identified barriers were discussed. Similar thematic analysis of attendees’ responses showed a need for increased opportunities for research and greater experience as common themes in improving research. Further categorisation of the proposed solutions to improve rates of research prioritisation showed that the NEAT group considered improving access to research for participants, and improving education and training for practitioners as the most important factors.

Online introduction to research

In light of the findings of the online survey and the discussions in meetings, we developed a training package for allied health professionals that addressed basic foundations of research and put this in the context of liver disease. This has been developed to be delivered as an online course to increase its accessibility.

Research Prioritisation

The NEAT group considered future research into ALD, and the research questions that should be answered. Common themes that were considered important were broadly grouped as research into natural history (How do metabolic or psychological cofactors influence the development of ALD?), interventional (How can we prevent progression of ALD), structural (How can we improve engagement with medical services? How does the built environment influence ALD?). Further research into palliative care was considered important, and moving research into primary care or community settings was also identified as a priority. Themes for future research are summarised in Figure 3.

Figure 3. Priorities for research in ALD identified by the NEAT group.

PPIE group

We developed a dedicated PPIE group to support the activities of NEAT. We recruited to the PPIE group through direct approaches to people with lived experience of disease in clinical services, and invitations to those with an interest in PPIE through established connections with the NEAT team. We held a series of virtual meetings initially to discuss the terms of reference for the group, and to discuss NEAT activities and future plans.

Research development

In light of the work of the NEAT group to identify barriers to research and future research priorities, potential research studies were developed and discussed. Online meetings were held with the NEAT co applicants, the NEAT PPI group and finally a combined meeting of both groups. Overall the groups felt that a research study that explored new ways of delivering specialist care to people with advanced disease, by providing community liver clinics would address many of the important issues that were identified.

The LOCAL study (LOcally delivered Care in people at high risk of liver Outcomes) will explore if providing liver clinics in communities where people live, rather than providing clinics in hospitals in the traditional model, improves outcomes through better engagement of care. This will be delivered in several sites across the north of England, in areas of high prevalence of disease and with historically lower rates of research participation.