The RIPEN network - Research in Palliative and End of Life Care North East

When end-of-life is approaching, health and social services aim to help people to come to terms with illness, manage pain and other issues, and experience a comfortable passing.

End-of-life care needs are greater and more complex in poor areas, and providing services is often difficult in remote or rural areas – and the North East has all of these challenges.

However, end-of-life care research in the North East is not well developed. This is important, because research plays a role in promoting high quality care, and shaping new services.

The work of our RIPEN network aims to tackle that gap, with a plan to grow palliative and end-of-life care research in an area where patients and families are likely to benefit.

Our aim is to develop strong and lasting links between researchers and the people who provide palliative and end-of-life care, and to encourage more people into this area of research.

We will develop proposals for research to improve people’s experiences at the end-of-life in the North East and beyond.

Our work is funded by the National Institute for Health and Care Research (NIHR) through its Palliative and End of Life Care Partnership Funding Call 2021.

This funding will support us to build sustainable partnerships leading to improved access to research and care, for people in the North East.

How will we do this?

• RIPEN (Research In Palliative and End of life care NE) is a group of clinicians and academics from across the region who aim to bring together different people and organisations from a wide range of backgrounds, to ensure the delivery of this work, alongside supporting partner organisations.  Alongside this, we have public contributors and community organisations represented throughout the workstreams.
• We will bring researchers with the right skills and interests from regional universities together with people from the hospice, primary and social care and hospital services.
• We’ll also be working closely with the NIHR Applied Research Collaboration (ARC) North East and North Cumbria (NENC), Research Design Service (RDS) North East and North Cumbria, and other National Institute for Health and Care Research funded units in the North East to help with all aspects of research training and conduct, and sharing findings.
• These include the NIHR Clinical Research Network (CRN) NENC, the NIHR Innovation Observatory (IO), The NIHR School for Public Health Research, NIHR Biomedical Research Centre, and NIHR Policy Research Unit Older People and Frailty.

Our five strands of work are:

Workstream 1

Promoting a research culture in North East around palliative and end-of-life care

Promote a long-lasting research culture in North East palliative and end-of-life care. This will include a series of meetings about research methods and findings will spark interest and thinking, and offer training, particularly for people new to research. We will have a particular focus on supporting social care and allied healthcare practitioners.

Workstream 2

Making best use of information – a qualitative study on data linkage

People are often cared for in different places (e.g. home, care home, hospital, hospice) at the end-of life, but information about care is not always joined up. Linked data can help improve care, and be useful for research. We will interview people in strategic roles about what is needed to make these linkages, and the time, funding and agreements that would be needed.

Workstream 3

Developing a searchable database of palliative care research /innovation landscape

We will work with the NIHR Innovation Observatory to create a searchable database of palliative care innovations/intelligence

Workstream 4

Developing research project proposals

A research sandpit event (an interactive meeting to define a topic, facilitate discussion and formulate outputs) will be held to bring researchers and practitioners together to kickstart at least one research proposal. We will start with our strengths – care of older people with frailty, multiple long-term conditions and social inequalities, as well as dementia care at the end of life.

Workstream 5

Patient and public involvement (PPI)

A PPI partner group with representation from diverse faith groups and ethnically minoritised communities will help shape our research, and develop new ways of working that are fit for end-of-life and palliative care.

Supporting organisations:

• NIHR Applied Research Collaboration (ARC) North East and North Cumbria (NENC).
• NIHR Innovation Observatory (NIHRIO)
• NIHR School for Public Health Research, (SPHR)
• NIHR Clinical Research Network (CRN) NENC
• NIHR Research Design Service (RDS) NENC
• NIHR Biomedical Research Centre (BRC)​
• NIHR Policy Research Unit Older People and Frailty
• Newcastle University
• Northumbria University
• NECS: North East Commissioning Support Unit
• Hospices North East
• Marie Curie Hospice, Newcastle
• St Oswald’s Hospice
• St Benedict’s Hospice
• North East NHS Trusts

Network leads

Co-leads: Professor Barbara Hanratty and Dr Katherine Frew, Newcastle University.

Co-applicants: Felicity Dewhurst, Sonia Dalkin, Donna Wakefield, Paul Paes, Felicity Shenton, Fiona Matthews, Dawn Craig, Adam Todd, Joanne Atkinson, Catherine Exley, Daniel Stow, Shona Haining, Yu Fu, Olivia Grant, Kathryn Mannix

For more information about the RIPEN network, or if you would like to join our research community, please email [email protected]