TY - JOUR
T1 - A framework for more equitable, diverse, and inclusive Patient and Public Involvement for palliative care research
AU - Mitchell, Sarah
AU - Turner, Nicola
AU - Fryer, Kate
AU - Beng, Jude
AU - Ogden, Margaret E
AU - Watson, Melanie
AU - Gardiner, Clare
AU - Bayly, Joanne
AU - Sleeman, Katherine E
AU - Evans, Catherine J
N1 - Funding Information:
This paper reports new approaches and resources to improve equity, diversity and inclusion in PPI developed during a research partnership project funded by the National Institute of Health Research (NIHR) for 12 months (2022), the RE-EQUIPP Care (REducing inEQUalities through Integration of Primary and Palliative Care) Partnership. The project was carried out following the COVID-19 pandemic, during a cost-of-living crisis in the UK, when health inequalities and population need for good palliative care were both rising [, ]. Throughout the report, Patient and Public Involvement (noun) is abbreviated to “PPI”. The term “PPI members” describes patient and public partners and was agreed to promote a sense of equal partnership and belonging. This paper reports patient and public involvement, not a research study.
Funding Information:
This article presents independent PPI funded by the National Institute for Health Research (NIHR) National Institute for Health Research (NIHR) HTA Palliative Care Partnership: REducing inEQUalities through integration of Primary and Palliative Care (RE-EQUIPP). NIHR 135170. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.
Publisher Copyright:
© The Author(s) 2024.
PY - 2024/2/8
Y1 - 2024/2/8
N2 - BACKGROUND: There are marked inequalities in palliative care provision. Research is needed to understand how such inequalities can be addressed, so that everyone living with advanced illness can receive the care they need, when they need it. Research into inequalities in palliative care should be guided by Patient and Public Involvement (PPI) that includes people from diverse backgrounds, who are less likely to receive specialist services. Multi-disciplinary research partnerships, bringing together primary care (the main providers of palliative care to diverse communities) and specialist palliative care, have the potential to work together in new ways to do research to address inequalities and improve palliative care in practice. This report describes a research partnership between primary care and palliative care that aimed to: (1) create opportunities for more inclusive PPI in palliative care research, (2) co-design new resources to support more equitable, diverse and inclusive PPI for palliative care, (3) propose a new framework for inclusive PPI in palliative care research.METHODS: PPI members were recruited via primary care and palliative care research networks from three diverse areas of the UK. A pragmatic, collaborative approach was taken to achieve the partnership aims. Online workshops were carried out to understand barriers to inclusive PPI in palliative care and to co-design resources. Evaluation included a "you said, we did" impact log and a short survey. The approach was informed by good practice principles from previous PPI, and existing theory relating to equity, equality, diversity, and inclusion.RESULTS: In total, 16 PPI members were recruited. Most were White British (n = 10), other ethnicities were Asian (n = 4), Black African (n = 1) and British mixed race (n = 1). The research team co-ordinated communication and activities, leading to honest conversations about barriers to inclusive PPI. Resources were co-designed, including a role description for an Equity, Equality, Diversity and Inclusion Champion, a "jargon buster", an animation and an online recipe book ( http://www.re-equipp.co.uk/ ) to inform future PPI. Learning from the partnership has been collated into a new framework to inform more inclusive PPI for future palliative care research.CONCLUSION: Collaboration and reciprocal learning across a multi-disciplinary primary care and palliative care research partnership led to the development of new approaches and resources. Research team commitment, shared vision, adequate resource, careful planning, relationship building and evaluation should underpin approaches to increase equality, diversity and inclusivity in future PPI for palliative care research.
AB - BACKGROUND: There are marked inequalities in palliative care provision. Research is needed to understand how such inequalities can be addressed, so that everyone living with advanced illness can receive the care they need, when they need it. Research into inequalities in palliative care should be guided by Patient and Public Involvement (PPI) that includes people from diverse backgrounds, who are less likely to receive specialist services. Multi-disciplinary research partnerships, bringing together primary care (the main providers of palliative care to diverse communities) and specialist palliative care, have the potential to work together in new ways to do research to address inequalities and improve palliative care in practice. This report describes a research partnership between primary care and palliative care that aimed to: (1) create opportunities for more inclusive PPI in palliative care research, (2) co-design new resources to support more equitable, diverse and inclusive PPI for palliative care, (3) propose a new framework for inclusive PPI in palliative care research.METHODS: PPI members were recruited via primary care and palliative care research networks from three diverse areas of the UK. A pragmatic, collaborative approach was taken to achieve the partnership aims. Online workshops were carried out to understand barriers to inclusive PPI in palliative care and to co-design resources. Evaluation included a "you said, we did" impact log and a short survey. The approach was informed by good practice principles from previous PPI, and existing theory relating to equity, equality, diversity, and inclusion.RESULTS: In total, 16 PPI members were recruited. Most were White British (n = 10), other ethnicities were Asian (n = 4), Black African (n = 1) and British mixed race (n = 1). The research team co-ordinated communication and activities, leading to honest conversations about barriers to inclusive PPI. Resources were co-designed, including a role description for an Equity, Equality, Diversity and Inclusion Champion, a "jargon buster", an animation and an online recipe book ( http://www.re-equipp.co.uk/ ) to inform future PPI. Learning from the partnership has been collated into a new framework to inform more inclusive PPI for future palliative care research.CONCLUSION: Collaboration and reciprocal learning across a multi-disciplinary primary care and palliative care research partnership led to the development of new approaches and resources. Research team commitment, shared vision, adequate resource, careful planning, relationship building and evaluation should underpin approaches to increase equality, diversity and inclusivity in future PPI for palliative care research.
KW - Patient and public involvement
KW - Patient engagement
KW - Inequalities
KW - Primary care
KW - Palliative care
KW - Equity
KW - Equality
KW - Diversity
KW - Inclusion
UR - http://www.scopus.com/inward/record.url?scp=85185333354&partnerID=8YFLogxK
U2 - 10.1186/s40900-023-00525-3
DO - 10.1186/s40900-023-00525-3
M3 - Article
C2 - 38331966
SN - 2056-7529
VL - 10
JO - Research involvement and engagement
JF - Research involvement and engagement
IS - 1
M1 - 19
ER -
