The National Institute for Health Research (NIHR) is responsible for funding, delivery and monitoring of clinical research studies in the NHS. The main subset of NHS studies relevant to hospices is categorised under ‘Supportive and Palliative Care’ and ‘Psychosocial Oncology and Survivorship’ (SPC/POS). In the NIHR, the Clinical Research Network (CRN): Cancer Cluster is responsible for overseeing the delivery of this subset within the NIHR portfolio, not only in cancer but also extending to advanced non-malignant disease.
Since January 2018, non-NHS sites such as hospices are also officially recognised as sites for NHS-based studies. Of course, hospices have been involved and indeed leading in clinical research for many years – the Cancer Cluster office is now regularly tracking this important contribution. In 2016–2017, there were a total of 49 studies open in the SPC/POS group, of which 43 were actively recruiting. There is a balanced mixture of observational and interventional research. Participating sites included 22 hospices and 125 hospital trusts. (Some hospices may be listed under their local trust name.) There is wide variation across England and the devolved nations with respect to participation in these studies.
Funding for studies relevant to hospices came mainly from NIHR and other major charities, including Marie Curie, Macmillan, research councils. A few studies have commercial sponsorship.
The NIHR CRN is committed to helping the hospice sector to increase its access to clinical trials, through the NIHR Charities Consortium. It will do this by disseminating information and supporting the research workforce, working with Hospice UK. The Consortium held its first national conference on hospice and community-based research in April 2018. This will become an annual event and there will be prizes to reward hospices and other SPC/POS research teams for making significant contributions to the national NIHR portfolio.
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