CECo is an equal partnership between researchers at five universities (Southampton, Liverpool, Lancaster, Manchester and Nottingham) clinical organisations (including the four largest hospices in England, and ‘Help the Hospices’) and user representatives.

We aim 1) to work together to make substantive progress in research capacity and the quality of research in supportive and palliative care over the next five years 2) to do so in a way that ensures that progress is maintained beyond this period.

We are addressing three inter-related research themes: innovative approaches to complex symptoms; planning for the care of older adults towards the end of life; and narratives of cancer and other life limiting illnesses. These provide platforms on which to build our research capacity-building activities.

We recognise that experiences of serious and advanced illness are shaped by a wide range of physical and social factors and this makes consumer perspectives vital to their understanding. We therefore adopt user involvement, (referred to as Research Partners), as a key strategy. We are looking afresh at challenging problems, developing new conceptual and theoretical frameworks and adding analytical depth to interpretation of the evidence-base. We aim to build research capacity, support emerging researchers and seek to improve the quality and impact of our own research.

Firmly rooted in clinical realities and problems, we aim to create a vibrant community of collaboration to build capacity, raise research standards, leverage new resources, publish in high impact journals, encourage emergent ideas, support relevant organisations, develop new methods and bring about a ‘step change’ in both research capacity and the quality of supportive and palliative care research, such that service development becomes knowledge rich and clinical innovation is evidence based.

The aims and objectives of our collaborative are as follows:

Aims:

1. To work together to make significant and substantive progress in both research capacity and the quality of research in supportive and palliative care over the five years of the Collaborative
2. To do so in a way that ensures that progress is maintained beyond this period

Objectives:

1. To bring together a Collaborative of researchers with established track records in SuPaC from a range of health and social science disciplines in five different academic centres of SuPaC research, to work together with users and clinicians to become a vibrant research community that is recognised as an international centre of excellence and which is greater than its existing parts, thereby creating synergy and a stimulating scholarly environment, enabling the sharing of infrastructure and resources, preventing the duplication of effort, providing attractive and supportive learning environments for junior and novice researchers, and leading to overall improvements in both research capacity and the quality of research
2. To work with academics outside SuPaC with expertise relevant to the Collaborative’s three research themes so that the Collaborative’s work is informed by and integrated with contemporary theory, policy and research in relevant health and social science disciplines, and thus to enhance the excellence of its research when compared to other work in these disciplines, not just within palliative and supportive care
3. To have close dialogue with a range of clinicians within cancer and non-cancer palliative and supportive care, to ensure the work of the Collaborative is firmly rooted in clinical realities and problems
4. To establish and support a Partnership Group and other mechanisms to ensure users’ views influence the Collaborative’s work, whilst seeking other methods for including people affected by cancer and other life-limiting illnesses through participatory, user-led and action research projects
5. To use the Collaborative’s research themes as platforms to develop and test common methods of negotiating research ethics and research governance submissions, data capture and handling, and of enhancing recruitment in multi-site qualitative and quantitative studies
6. To establish excellent communications between Collaborative members, including full use of web, telephone and video-based technologies
7. To increase research methods expertise within SuPaC, at basic and advanced level, via the provision of web-based materials, workshops, mentorship, and access to statistical and health economic expertise
8. To attract and retain high quality clinical researchers to SuPaC care research by providing scholarships of three months for non-medical clinicians and mentoring to clinicians with developing interests in research and by enabling more experienced researchers (both clinical and non-clinical) to develop their own independent research programmes and to become Principal Investigators with sustained research programmes
9. To provide support to organisations within palliative care (especially independent hospices) that currently lack a well-developed research culture, enabling them to develop research appreciation and expertise and to become research active
10. To publish the findings of Collaborative research studies in high impact academic journals, as well as in appropriate professional and lay publications
11. To obtain peer-reviewed research funding to enable substantial progress to be made in the Collaborative’s three research themes
12. To bring about a ‘step change’ in the quality of SuPaC care research, such that service development becomes knowledge rich and clinical innovation is evidence based
13. To manage the resources of the Collaborative efficiently, effectively and fairly in order to meet its overall aims

Our Collaborative has two particular defining features.

First, our focus is on the experiences of people affected by cancer, by which term we refer to those with the disease; their family, friends and companions; health and social care professionals; volunteers and members of advocacy and self-help groups; and the wider public. We recognise these experiences to be multi-faceted and shaped by a wide range of physical and social factors. User involvement is therefore a key strategy in the Collaborative and will be a major research focus underpins, all three research themes. We will also extend understanding of the impact of cancer, investigate how variations in experience are shaped, and ensure that clinical and service interventions are informed by and appropriate for all people affected by the disease, in the context of providing optimal treatment and care.

Second, we will act collectively as a ‘critical friend’ to those providing and commissioning SuPaC services, by looking afresh at challenging problems in a questioning and analytical manner. We will develop new conceptual and theoretical frameworks to illuminate issues, to lend analytical depth to interpretation of the evidence-base, and to enable us to generate and evaluate creative and innovative responses to the challenges of providing care. Our skills and expertise are drawn from palliative medicine, nursing, health services research, health psychology, sociology, primary care, gerontology, psychiatry, complementary therapies, social policy, social work, public health, statistics, health economics, epidemiology, and oncology. The Collaborative also includes service users and health and social care professionals to ensure our work is grounded in the day to day realities of living with cancer, and of service provision.