Determination of priority research areas in palliative care according to patients, caregivers, palliative care workers and volunteers

In the medical field, the patient is at the center of research, whether this research is public health, biomedical, social, ethical, human sciences... Yet for several years, it has been highlighted that researchers and patients do not have the same priorities on research axes. The vast majority of current research focuses on drug or surgical treatments, while patient demand focuses on other areas. Indeed, in the Tallon et al study, only 9% of knee osteoarthritis patients wanted more studies on treatments, whereas 80% of research is clinical trials on treatments. What's more, the main results found by researchers in some studies, particularly in rheumatoid arthritis patients, are not those relevant to patients. Few studies focus on the common ground shared by researchers, patients, clinicians and family members. Out of 334 studies on all themes, only 9 compared the priorities of researchers and patients. Family members and clinicians are rarely consulted. It therefore seems appropriate to reorient research in the medical field towards the needs of patients, relatives and clinicians. Worldwide, $100 billion is spent on biomedical research, but this doesn't even bring in the $1 million a year in publications. In reality, research projects are numerous, but few reach publication, and therefore few are accessible to the main stakeholders: patients.

In a literature review of 79 follow-up studies, only 53% after 9 years were published. What's more, the problem of research in the medical field also involves unnecessary and poor-quality research topics. It was pointed out that, out of 234 clinical trials, 26% had unclear explanations of the course and administration of therapeutics. Concerning diagnostic studies, out of 487, 20% used other gold standards, and 17% did not carry out double-blind studies.

In any field of medicine, today's researchers must therefore ask themselves new and good questions. Means are limited, but this research must also be relevant to patients, so they must be questioned in every discipline. We also need better-quality work in terms of methodology, and we need this work to be published so that it is accessible to all.

In the field of palliative care, the problem is the same, although resources are even more limited than in other disciplines. In the UK, the proportion of funding devoted to work on end-of-life and palliative care is less than 0.7%. Palliative care outside the field of oncology seems even less studied. Palliative care research is poorly represented in France and internationally.

It therefore seems important, in a context of limited resources, to refocus research on the needs of patients, carers and caregivers. To this end, several UK organizations jointly conducted a public consultation to define the research questions relating to end-of-life and palliative care deemed most important by patients, carers and caregivers. The list of issues was refined and narrowed down (83, then 28, then 10) in several stages (broad surveys, research expertise through systematic literature reviews, then consensus-building by nominal group). They were thus able to identify 10 priority areas for research between patients and caregivers.

The aim of this study taking place in France is to highlight the common priority on research axes between researchers, caregivers, carers and patients.

In the healthcare field, research themes are defined by researchers, and the share of research concerning treatments is preponderant.

We need to ask ourselves what the patient wants to know, what lines of research interest him or her. In addition, it is also relevant to ask caregivers and clinicians about what is relevant to them in order to prioritize which areas of research to develop.

In the field of palliative care, research although developing, remains very limited, due to financial means, uncoordinated research and also publication difficulties.

The aim of this study is to question patients, caregivers, clinicians and researchers on the areas that seem relevant to them, and above all to prioritize them so that palliative care research is refocused on the main protagonists.