Our work in Wales since 2010 has contributed to a growing programme of palliative care research studies, resulting in over £11m in external funding and increased patient recruitment, up from four patients a year to over 160 a year.
Our aim is to develop and support well designed research in palliative care, with the focus on design and conduct of pragmatic studies which will translate into better patient care.
We always work with patients and carers to find out their priorities are the best ways to do research. We continue to give a clear message that palliative care patients want to take part in research studies and that they should have access to an equivalent number of studies as cancer, cardiac, respiratory and neurological patients.
Our research spans a range of methodologies and types of research, inlcuding:
- multicentre mixed methods studies
- large-scale phase 3 clinical trials
- teaching and supervision of PhD, MSc and intercalation students
- evaluation projects
Research governance toolkit
Care settings may define a patient’s or carer’s access to research. Although palliative care research has been growing in Wales over the last eight years, research taking place within independent hospice settings is limited. This means the majority of patients are unable to access research opportunities once they leave a secondary care setting.
We have developed a research governance toolkit providing guidance to hospices in order to promote research as part of everyday care in these settings. The Hospice Research Governance Toolkit is also available as an App.
Public and patient involvement
From the outset there has been a clear aim that public and patient involvement should be central to all that we do. Our vision is to work with patients and other partners to develop and deliver research excellence which benefits the health and welfare of people in Wales and beyond. We embed our unique model of public and patient involvement at all stages of study design, implementation and evaluation.
Our Scientific Director, Prof Annmarie Nelson, is also the academic lead for public and patient involvement (PPI) at the Wales Cancer Research Centre (WCRC) and in the Division of Population Medicine. The PPI framework she has developed, along with Jim Fitzgibbon (lay lead, WCRC), is described in a recent annual report.
Both leads are active within their respective areas. Prof Nelson has registered a project on the COMET database to develop a core outcome set for PPI, intended to be used within research to record and report PPI activities. She is also a member of the METHODICAL group addressing research priorities for PPI.
Jim Fitzgibbon is an active member of multiple governance and strategy groups, including the executive board of the WCRC, and the Public Health Delivery Board for Welsh Government.