KEech End of life research Partnership NETwork (KEEPNET): A partnership network to enhance research capacity and capability to improve access of palliative and end-of-life care among the ethnic minority population across Hertfordshire, Bedfordshire, and Milton Keynes

RESEARCH QUESTION

How can we improve access and uptake to palliative and end-of-life (EoL) care services to reduce inequalities among ethnic minority populations who reside in Bedfordshire, Hertfordshire, and Milton Keynes? BACKGROUND

The Better Endings report ‘Right care, Right place, Right Time’, states that patients who receive care from specialist palliative care teams tend to have a better death than those without access to this care. Despite this, evidence continues to suggest that ethnic minority groups are less likely than their white British counterparts to access and use end-of-life care services, and when they do, there is evidence of unmet needs.

Barriers, which include lack of information about services, religious and family issues, communication and structural barriers have all been shown to contribute to the limited uptake of EoL care services among the UK’s ethnic minority population. AIMS AND OBJECTIVES

This project is Phase 1 of a research partnership programme that aims to support the building of research capacity and capability which will inform Phase 2 of a fully costed co-produced NIHR research bid application (due to be submitted in 2022). This will be achieved through the following three objectives:

(1) Conduct a mapping review of all palliative and End of Life (EoL) care services across Bedfordshire, Hertfordshire, and Milton Keynes (BHMK) (Work Package 1)

(2) To establish a palliative and EoL care Research Partnership Network (RPN) to represent the diverse multi-ethnic and multi-faith communities across BHMK. (Work package 2)

(3) To develop, train, and mentor a Public Engagement Group (PEG) Group to represent the diverse multi-ethnic and multi-faith communities across BHMK (Work Package 3). METHODS

Work package 1: We will map all the current services that provide palliative and EoL care and support across BHMK to build a repository that will inform who we invite to our RPN. These localities all host significant ethnic minority communities with pockets of high deprivation. Research activity has also been historically low within the BHMK area.

Work package 2: We will set up a RPN and conduct semi-structured interviews with network members to identify training needs and barriers to research collaborations. We will deliver based on this a range of knowledge exchange activities in a bid to upskill our research partners, building consensus on research priorities.

Work package 3: We will develop a PEG, comprised of lay community members who will represent the diverse communities who reside across Bedfordshire, Hertfordshire, and Milton Keynes. We will train, mentor and support our PEG group to co-develop an NIHR funding research proposal (which we plan to submit in 2022) through the facilitation of mini’ roundtable workshops.

ANTICIPATED IMPACT AND DISSEMINATION

This research partnership will inform recommendations and best practice guidelines in terms of inclusive and culturally competent research practice. It will also address a significant gap in research infrastructure by ensuring robust inclusive and representative public engagement and ensuring all relevant stakeholders from palliative and EoL are involved all of which will benefit Phase 2.

Key learnings, findings, and implications will be disseminated widely through the partnership network, digital communication and social media, and public engagement events.