The Cicely Saunders Institute houses the Department of Palliative Care, Policy & Rehabilitation and its programme has delivered clinical and public health research across sub-Saharan Africa. Working with clinical services, non-governmental organisations and universities, the Institute has pioneered the development and validation of outcome measurement in Africa. This focus on measurement of both patient-reported outcomes and effectiveness ensures the wise allocation of scarce resources.

Advancing care through better science
Through research to determine the clinical research priorities of end of life care providers in Africa, the Institute identified a common demand for tools to measure and improve patient care. In response to this challenge, the Institute sought the views of a wide range of professionals in order to develop and validate an outcome tool across diagnoses, settings and countries. The resulting tool is now endorsed by Governmental and NGO agencies across Africa and is being used to measure routine clinical care as well as drive forward research.

The Institute has worked in partnership with leading local agencies to generate evidence for the urgent provision of palliative care in sub-Saharan Africa. These data are clinical, in both infectious and non-infectious disease, and also public health policy-oriented, looking at the availability of essential symptom controlling drugs.

Building capacity
In order to implement capacity building in research, the Institute has employed the first palliative care research nurses in Africa and secured full post-graduate scholarships for Africans to study palliative care at King’s Health Partners. These students are now collecting novel data as part of their studies to directly influence their local setting. Looking beyond Africa, the Institute also been active in teaching and research in Cuba and Argentina.

Models of partnership and collaboration
The Institute’s focus on measurement also leads us to spearhead global palliative care research with partners in high-income settings, providing the opportunity for two-way learning between African innovation and European science. This interaction allows us to drive forward the science of palliative and end of life care with highly experienced  partners in the field and to transfer learning to African communities in the UK. An example is the publication of UK guidance on the spiritual care of Africans with advanced disease, which was endorsed by Archbishop Tutu.