WHAT IS ALREADY KNOWN ON THIS TOPIC

Expansion of palliative care research is a National Institute for Health and Care Research priority and fundamental to meeting the increasing demands on the specialty and the highest quality care for patients and families is provided.

Despite this, research in the field is under-resourced, with a very small workforce of clinical academics and limited funding opportunities leading to a sparse evidence base.

WHAT THIS STUDY ADDS

This survey demonstrates that palliative medicine consultants are qualified and motivated to conduct clinical research; but barriers including insufficient dedicated research time and infrastructure, and lack of recognition of the unique challenges to palliative care research limit activity.

Research activity could be facilitated by greater collaboration, within and across disciplines and organisations, with recognition that developing palliative care research requires tailored support. Investment, from both a funding and time perspective, is required to build much-needed capacity.

HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY

Specialty-specific solutions are required to improve capacity and capability in palliative care research including embedding a collaborative research culture, more dedicated research time for clinicians and ring-fenced opportunities.

Focused efforts should be made to support those at transition points in academic careers, such as those progressing from Integrated Academic Training or higher research degrees, to research-active consultant roles.

Introduction

An estimated 63%–82% of people will need palliative care.1–3 The 2022 Health and Social Care Bill describes the provision of such care as a basic human right.4 The need for palliative care is projected to rise rapidly due to ageing and increased prevalence of complex life-limiting illness.5–7 Robust clinical research focusing on complex interventions8 is vital for practice and service remodelling. Without it, palliative care service provision will remain inequitable and lacking in an evidence base.9 However, palliative care research is underdeveloped. Due to methodological and structural challenges,10–13 as well as ethical challenges relating to gatekeeping and perceived vulnerability of patients at the end of life.14 15

Palliative care research is also underdeveloped due to lack of resources, both in terms of funding and workforce. In the UK, it currently receives less than 1% of all cancer research spending, despite one-third of hospital inpatients being in the last year of life.16 Both palliative care provision and research are dependent on charitable giving and consequently, activity fluctuates significantly with the economic climate. For example, the COVID-19 pandemic resulted in suspension of many charity-funded research grants. The Royal College of Physicians Census (2019) reported that palliative medicine consultants have less academic time in their job plans compared with any other medical specialty.17 18

Limited institutional capacity of small isolated palliative care teams to perform research has also been described, impacting on the ability to run large, well-conducted studies.11 One study in the hospice setting identified a lack of culture and ethos conducive to conducting research, and isolated working without National Health Service (NHS) or university research partnerships as challenges to conducting research.19 There is limited evidence outside of the hospice setting.

Strategies to integrate research culture in medical training and practice exist but research exposure and integration of research into clinical training varies internationally20 21 (see figure 1). In the UK, palliative care has been slow to grasp opportunities to increase medical research capacity such as Integrated Academic Training (IAT)22 (see figure 1). There are proportionally four times fewer academic trainees in palliative medicine than oncology, with wide geographical variation. In 2017, a national survey (n=1239) concluded that IAT is associated with positive progression as a clinician researcher in most specialties.23 However, there is limited knowledge on the effect of palliative medicine IAT posts on academic career progression. For many trainees, certificate of completion of training appears to represent a glass ceiling for their research careers and academic trainees often take up full time clinical posts.24

Figure 1

How is research integrated into palliative medicine training in the UK and internationally?

In 2020, a survey sent to all 225 UK palliative medicine trainees (academic and non-academic) with a response rate of 45%, found 95/102 trainees were either ‘very interested’ or ‘quite interested’ in conducting research. However, trainees reported that opportunities were limited due to lack of dedicated research time and available supervision, with only 35% (36/102) reporting that they had access to a supervisor with research experience.25 This survey was limited to the perspective of palliative medicine trainee and training programme directors and identified a need to understand the barriers to research participation at consultant level, to support research and build capacity as an important area for future research.

The experience of UK palliative medicine consultants and IATs in conducting research is incompletely understood. We aimed to understand interest and capacity to conduct palliative care research and identify the key facilitators and barriers to research activity.

MethodStudy design and survey development

We undertook a national online survey with multiple choice and free text questions. There are no validated surveys assessing research interest, experience, barriers and opportunities for doctors. Therefore, a scoping literature review and piloting were used to produce an online survey (Jisc Online survey software-https://www.jisc.ac.uk/) (online supplemental appendix 1). Separate question banks were used for current IATs, previous IATs, consultants who had not completed IAT but had completed an MD/PhD, and consultants who had not completed IAT nor an MD/PhD. A survey design was chosen so as to gather a broad range of views from across this professional group, in line with the design of previous studies on this topic.25

Population

All UK palliative medicine consultants were invited to participate (estimated total n=622). We also surveyed current and previous UK IATs (estimated total n=30), to explore their research experiences during the transition from training to consultant roles. We estimated the potential number of participants (denominator) using the National Institute for Health and Care Research (NIHR) data on palliative medicine academic training numbers and Association for Palliative Medicine of Great Britain and Ireland (APM) workforce data on the total number of UK consultants.

An email containing the survey link was cascaded through two national organisations (APM and UK Palliative trainee Research Collaborative, UKPRC) inviting consultants and academic trainees to participate.

We used snowball methodology to improve the response rate: all recipients of the survey were asked to distribute the survey in their locality; this took advantage of local contact lists of consultants and academic trainees. Regular encouragement to complete the survey was posted on social media. The survey was live for 5 months (May–October 2021).

Data collection

This study was carried out using the structures, processes and networks of the UKPRC. The UKPRC consists of 35 core committee members, representing 16 (out of 19) UK training regions including Scotland, Wales and Northern Ireland. Trainee led, the collaborative is guided by an experienced academic as research lead and a consultant as clinical lead.26

Analysis

Responses were anonymised and stored on a secure website. Survey responses were quantified using descriptive statistics and free-text responses analysed using framework analysis.27

Framework analysis relied first on three researchers, YT (palliative medicine trainee/non-IAT), CC (palliative medicine consultant/previous IAT)) and SE (current palliative medicine IAT) independently familiarising themselves with and coding the data to produce an initial thematic framework. The framework was predominantly inductively developed, but we included a priori defined areas of dedicated time and resource constraints (due to system and local factors). This framework was used to tabulate the free text responses (rows were transcripts and column headings were grouped according to the themes). While developing and populating the framework, the researchers paid attention to any responses which did not ‘fit’ or were minority views, and adapted the framework to incorporate them. By doing so, we were able to ensure all views were represented and avoid one-sided interpretations.28 The researchers then compared the framework with the original data and discussed the findings. Where there was disagreement in data interpretation, this was discussed within the research team until consensus was reached. Based on these discussions, we produced a summary matrix depicting inter-relationships in identified themes. Responses were considered based on respondents’ research background (1) current/previous academic trainee, (2) consultant with/without academic qualification.

Exemplar quotes for each theme are included in the manuscript.

ResultsRespondents

We received 195 survey responses. Including:

Twenty-nine per cent of all UK palliative medicine consultants (n=180/622) based on latest available APM workforce data.

Fifty per cent of previous/current IATs (n=15/30), based on latest data supplied by the NIHR.

Respondent details are shown in table 1.

Table 1

Summary of all respondents, total n=195

Quantitative resultsResponses specific to IAT

Overall, those who had completed IAT found it a positive experience, with 66% stating that they felt it had prepared them well for a career in academic medicine. Seventy-eight per cent of current IATs agreed with this. Eighty-nine per cent of current and 88% of previous IATs responded that they would be ‘likely’ or ‘very likely’ to recommend an academic training post to others interested in a research career.

However, respondents considered the next step difficult, with 60% reporting that it was difficult to continue with a research career at the end of their IAT. Only 20% (1/5) of previous IATs had managed to secure a consultant post with academic time within their job plan.

Responses specific to those who did not do IAT

One hundred and eighty respondents were consultants who had not completed IAT. Most non-IAT respondents were interested in research, and research interest was higher in those who had already completed a higher research degree (74% were extremely or very interested in conducting research, compared with 29% of those without a higher degree). However, most consultants had no research time within their job plan (n=149/180, 83%) (figure 2). Those with an MD/PhD were more likely to have dedicated research time and 26% (9/35) had 5 (ie, 2.5 days per week) or more research sessions (table 2).

Figure 2

Consultant academic time (1 session/programmed activity (PA) =approximately 4 hours per week).

Table 2

Consultant who did not do IAT (180 respondents)

Qualitative results

Synergy was found between free text and multiple-choice responses, in that most participants considered research important. However, actual involvement in research was moderated by two key areas: research culture and integration, and resources (time and funding). These moderators influenced research participation at both local and systems level and could act either as barriers or facilitators to research participation (table 3).

Table 3

Moderators of research involvement in palliative medicine

Participants expressed the importance of research in palliative medicine, and potential benefits across the health system. A lack of current evidence to guide practice was described. Most participants wanted to be involved in research during their careers, whether as a clinical academic, or as part of a clinical role.

I strongly feel research is very important in pall care as most of what we do is not evidence based. The funding needs to come from the govt[sic] as there is great potential in improving quality of care for the healthcare system as whole.

Respondent 1 (Consultant who has completed a PhD but did NOT do IAT)

Research culture and integration

Opportunities to collaborate promoted research participation at both local and systemic levels. Respondents felt links with active research groups or universities aided research participation. However, they identified that such links were not always possible as there are few active research centres in palliative care. Some put this even more strongly, expressing that high-quality research is only possible through collaboration.

Facilitators are; strong and effective research leads …….People are often unrealistic about what is needed to undertake research. One of the key messages for me is that research is a collaborative business; you cannot and should not try to do it alone/in small studies/locally—much better to team up with a research centre and do it well.

Respondent 2 (Consultant who has completed an PhD but did NOT do IAT.)

Yet isolation rather than collaboration was the norm. A common response was that of the ‘lone researcher’—participants who were the only clinician in a unit interested in pursuing research. This issue is particularly relevant to palliative medicine, where much of the workforce is based in small teams in hospitals or hospices. Isolation and a lack of institutional research culture made it more difficult for participants to get research projects off the ground.

Skills of others around you, if you are the only person with research skills it can be hard to lead the project and need to upskill others along the way.

Respondent 3 (Consultant who has completed a PhD but did NOT do IAT.)

Increased collaboration between research-focussed individuals and other colleagues was a facilitating factor and described as important to both guide research questions and widen research participation.

Local research networks going beyond academic institutions & including clinical staff. good links between clinical and academic teams.

Respondent 4 (Current IAT.)

Research collaboratives were mentioned as ways to participate in research without a formal university link, and it was seen as important to involve staff at all levels, particularly trainees.

Isolation from others who are currently doing research Improved by developing networks of research

Respondent 5 (Consultant who has completed an MD but did NOT do IAT.)

Research recognition

For some participants, lack of recognition of the importance of research was a barrier, and there was a widespread perception of a lack of opportunities to take part in research

my Trust see [research as] it more of a hobby and don't see it as "real work

Respondent 6(Consultant who has NOT completed an MD/PhD and did NOT do IAT.)

A limited understanding of palliative care research by other specialties or research ethics committees was also cited as a barrier, and could be viewed as a form of stigma against research in this area.

“lack of understanding of the concepts and methodologies relating to palliative care research from other academics”. Respondent 7(Current IAT.)

Research ethics committees do not understand research in palliative care

Respondent 8 (Consultant who has NOT completed an MD/PhD and did NOT do IAT.)

Training pathways

A clear and flexible academic training pathway was raised as an important facilitator by those who had conducted research through an IAT post. But for most, these pathways were not seen as flexible enough. Participants identified difficulties moving from one step to the next in the IAT pathway. In particular, for those transitioning into consultant roles, there was a perceived cliff edge of opportunity after which clinical roles predominated. Additional concern relating to the potential impact of ‘shape of training’ on IAT was expressed. (Shape of training in the UK, involves reducing the time palliative medicine trainees spend in specialist palliative care in order to accredit in General Internal Medicine).

I think the integrated academic training pathway needs to provide flexibility to support trainees to have two research PAs as a min as a consultant to enable them to apply for additional grant funding.

Respondent 9 (Current IAT.)

Shape of training is likely to adversely affect integrated training for palliative medicine and there does not seem to be any proposed solutions to this yet.

Respondent 10 (Current IAT.)

Some participants who had not undertaken IAT felt that limited research exposure resulted in a lack of confidence to pursue research as a consultant. Information early in training on how to gain research exposure was welcomed.

Lack of experience and teaching during training means I now feel very lacking in the skills, knowledge and confidence to do research. It feels like something so academically difficult that only an elite few do rather than something we might all be capable of doing, but perhaps this is just due to lack of involvement and exposure as a trainee.

Respondent 11 (Consultant who has NOT completed an MD/PhD and did NOT do IAT.)

Resources: time and funding

Time and funding limited palliative care research on a local and systemic level. Even with good academic links and research culture, lack of time was cited repeatedly as a barrier to research involvement at a local level, with some participants expressing that research was difficult to incorporate into job plans. Even if research was in job plans there was pressure to prioritise clinical and other work due to staffing shortages.

lack of time available in job plan, with so many other competing commitments (e.g. teaching, supervision, management, appraisal, etc

Respondent 12 (Consultant who has NOT completed an MD/PhD and did NOT do IAT.)

The process of securing funding for research was a systemic barrier, not least because this itself took time. A lack of opportunities for funding, specifically in the proportionally underfunded field of palliative care was described.

Lack of dedicated funding for pall med research. Lack of grants available for pall med research—very small proportion of overall research monies dedicated to this speciality, despite it being a clinical spec that covers all specialities and affects us all.

Respondent 13 (Consultant who has completed an MD/PhD but did NOT do IAT.)

Even where funding was secured it was often short-term, and longer-term funding, seen as a facilitator for research activity, was seldom available.

I only have the current research funding on a short-term basis—two external grants of between 1.5-3 years

Respondent 14 (Consultant who has completed an MD/PhD but did NOT do IAT.)

Research infrastructure or lack thereof was relevant. One participant felt local networks did not support palliative care research. Another participant found the historical positioning of palliative care under an NHS cancer directorate was also a barrier to research activity, especially for non-cancer studies.

I did attempt to join a multicentre study but palliative care in my trust is in cancer directorate and this was non cancer research so they could/would not help me

Respondent 15(Consultant who has NOT completed an MD/PhD and did NOT do IAT.)

Recognition of the chronic underfunding of palliative care research and greater resource availability with longer-term grants and ring-fenced funding, were seen as facilitators to greater research activity.

At the local level, research funding was seen as a particular challenge for those working in the charitable sector, due to conflicts between research and clinical requirements. The overarching need to meet charitable goals of service provision could limit resources available for research.

for those of us working in the charitable sector the difficulty in allocating funding for research above service development/delivered

Respondent 16 (Consultant who has completed an MD/PhD but did NOT do IAT.)

The upshot was that academic time was rarely sufficient. A commitment over and above usual working hours was needed to participate in academic work.

I do participate in research studies as much as possible and usually in my own time

Respondent 17 (Consultant who has completed an MD/PhD but did NOT do IAT).

A perceived solution was to gain protected research time within clinical roles. Protected research time, alongside collaborative working arrangements, was frequently cited as a facilitator to research activity.

More posts with some research time in job plan, even if a small amount of time. local research networks going beyond academic institutions & including clinical staff. good links between clinical and academic teams

Respondent 18 (Current IAT.)

Discussion

This study found palliative medicine consultants to be highly motivated to conduct clinical research (78% interested and 38% ‘very’ or ‘extremely’ interested). Many respondents were highly qualified to conduct research; 20% had completed a doctorate (n=18 MD, n=17 PhD) and a further 29% had completed a masters/diploma/postgraduate certificate which included a research component. However, palliative medicine clinicians lack dedicated research time; 83% of consultant respondents having no research time, less than other medical specialties. Negotiating dedicated research time into job plans was extremely challenging, and that even when it was agreed, they felt under pressure to prioritise other competing commitments such as clinical work due to a lack of institutional recognition of the value of research. Funding was hard to obtain and was usually on a short-term basis.

The ageing population and increased prevalence of those with multiple long-term conditions and living longer with advanced disease are rapidly increasing the demands on palliative care. Further research is essential to identify how we can meet these demands and enable people with serious illness and their families to receive high-quality, cost-effective and equitable access to palliative care. In addition to generic barriers to conducting research, we have identified barriers specific to palliative care. In particular, the lack of research culture and integration was a key barrier identified. Unlike larger and well-established specialties such as oncology and cardiology, the palliative care workforce is not only small in number, it is also extremely thinly spread. Teams are often small and isolated, leading to fragmented, silo working and challenges to embed a research culture. In addition, many palliative medicine physicians work across multiple settings, often with a mix of NHS and non-NHS work, requiring the navigation of poorly aligned governance structures in multiple organisations. Both institutions and research ethics committees do not always appear to appreciate how palliative care can differ from other clinical research, often involving different methodologies (fewer randomised clinical trials, greater emphasis on qualitative research) and working with a vulnerable patient group. This combination of challenges are unique to our specialty but are likely to be shared on an international level. For this reason, palliative medicine may benefit from being considered a special case, in need of a tailored solution to support us to build infrastructure and capacity to grow our research base. This could be facilitated by better collaborative working across organisations and building partnerships between NHS, charity sector and university partners, to build capacity for high-quality well-designed studies, rather than attempting to work alone. This builds on previous recommendations to overcome the challenges of building collaboration and capacity in the hospice setting.12 19 29–32

IAT is designed to support the training of doctors in England to develop clinical academic careers. The first Integrated Academic Trainees in palliative medicine only started this training 12 years ago and so numbers are small in comparison to other specialties (even taking account the overall small training numbers). Views of academic training in our survey were overwhelmingly positive, with 88% and 89% of previous and current trainees (respectively) reporting they would recommend it. However, regardless of whether IAT or purely clinical training had been completed, securing a consultant post with research time was a challenge as most consultant posts were fully clinical to meet the demands of the service.

The RCP has published guidance, emphasising the importance of clinical research,17 and that this is vital to improve patient care and should be considered part of our core work rather than an optional extra. This report also highlights unequal opportunities to participate in research, with women physicians being less likely to undertake research despite expressing an interest in doing so. In palliative medicine, women are the majority of the workforce and consultants are more likely to work less than full time than other specialties (table 4). This is reflected in our survey respondents; 76% identified as female and the average number of clinical PAs worked was 6. The RCP report suggests that it is not only time pressure alone that makes women less likely to participate in research; as women who are conducting research are less likely than men to be employed in a formal research role. This suggests more complex issues contributing to the gender gap. Previous work has suggested a gender bias for those further along in their academic career, with the most prestigious plenary sessions at palliative care conferences being more likely to be offered to men33; however, it seems likely that this gender bias is present even at the outset of a woman’s career, making it more challenging to get on the first rung of the academic ladder. Medical workplace cultures that push non-clinical activity outside of paid PAs, clashing with societal expectations and biases relating to women and caring duties further fortifies barriers. This must be addressed when reshaping research culture and infrastructure.34

Table 4

A comparison of average number of total programmed activities (PAs), average research PAs and percentage of consultants working LTFT, compared with other medical specialties (based on Royal College of Physicians of UK and Ireland (RCP) census data) 1 PA=approximately 4 hours worked (half a day)

With the rising demand and need for high-quality palliative care for all, and limited access to funding, there is a need to develop a research culture that eschews competition between organisations, and instead promotes widespread collaboration, across disciplines and geography. Better understanding from both funders and organisations about how palliative medicine research differs, with additional longer-term ring-fenced funding to support capacity building is needed. Additional support at transition points, such as those at the end of IAT, would be invaluable to retain those who have already had substantial investment to continue their academic career, and in turn they will become the next generation to support and mentor further palliative medicine clinicians in clinical research.

Strengths and limitations of the study

Strengths of this study include; achieving a high response rate for a non-incentivised survey and successfully engaging clinicians working across different organisations at a national level. Robust qualitative analysis was undertaken to investigate a previously understudied area.

The main limitation of the study is a risk of response bias, as those more interested in research were more likely to respond to the survey, thus biasing the representativeness of the sample. Palliative medicine IAT has only been in existence for the past 12 years so those who trained prior to its introduction may have had a very different route into academia with different perceptions of the challenges faced and outcomes. We did not include nurses, allied health professionals, primary care specialists or specialty doctor and associate specialists all of whom have played a significant role in developing and leading research in this field. These groups should be included in future work.

Conclusion

The growing number of people living with life limiting conditions, their carers and families, need high-quality evidence based palliative care to live as well as possible until they die. Our findings indicate that as well as generic factors to improve palliative medicine research such as increased time and funding, specialty-specific barriers and facilitators are critical to improving patient care in this field. A collaborative and future-proofed research culture, which acknowledges the unique challenges of a workforce that works across NHS and non-NHS settings, reduces the reliance on variable charitable funding for staff research time and grant awards, and embeds and normalises palliative care research for trainees through into consultant practice will reap benefits for patients and drive progress towards palliative care goals of adding life to days and a ‘good-death’ for all.

Data availability statement

Please contact the corresponding author to request access to the anonymised study dataset.

Ethics statementsPatient consent for publication

Not applicable.

Ethics approval

This study involves human participants and ethics approval was obtained from Newcastle University (ref:8128/2020). Participants gave informed consent to participate in the study before taking part.

Acknowledgments

The authors would like to thank all members of UKPRC steering group, the APM trainees committee and APM regional reps for their vital support with this work, especially in disseminating the survey widely with colleagues across the UK. We also wish to send a special thanks to Professor Mike Bennett, for his support, in discussing the original ideas and plans to develop this study. With thanks to the team at Kings College London (KCL) for kindly giving us permission to use their survey software to conduct the survey.