{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,11,4]],"date-time":"2026-11-04T23:56:59Z","timestamp":1793836619308,"version":"4.6.1"},"reference-count":30,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2024,2,8]],"date-time":"2024-02-08T00:00:00Z","timestamp":1707350400000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2024,2,8]],"date-time":"2024-02-08T00:00:00Z","timestamp":1707350400000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"DOI":"10.13039\/501100000272","name":"National Institute for Health and Care Research","doi-asserted-by":"publisher","award":["135170"],"award-info":[{"award-number":["135170"]}],"id":[{"id":"10.13039\/501100000272","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100000272","name":"National Institute for Health and Care Research","doi-asserted-by":"publisher","award":["135170"],"award-info":[{"award-number":["135170"]}],"id":[{"id":"10.13039\/501100000272","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100000272","name":"National Institute for Health and Care Research","doi-asserted-by":"publisher","award":["135170"],"award-info":[{"award-number":["135170"]}],"id":[{"id":"10.13039\/501100000272","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100000272","name":"National Institute for Health and Care Research","doi-asserted-by":"publisher","award":["135170"],"award-info":[{"award-number":["135170"]}],"id":[{"id":"10.13039\/501100000272","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100000272","name":"National Institute for Health and Care Research","doi-asserted-by":"publisher","award":["135170"],"award-info":[{"award-number":["135170"]}],"id":[{"id":"10.13039\/501100000272","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100000272","name":"National Institute for Health and Care Research","doi-asserted-by":"publisher","award":["135170"],"award-info":[{"award-number":["135170"]}],"id":[{"id":"10.13039\/501100000272","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100000272","name":"National Institute for Health and Care Research","doi-asserted-by":"publisher","award":["135170"],"award-info":[{"award-number":["135170"]}],"id":[{"id":"10.13039\/501100000272","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Res Involv Engagem"],"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>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 \u201cyou said, we did\u201d 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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>\n                      In total, 16 PPI members were recruited. Most were White British (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200910), other ethnicities were Asian (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u20094), Black African (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u20091) and British mixed race (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u20091). 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 \u201cjargon buster\u201d, an animation and an online recipe book (\n                      <jats:ext-link xmlns:xlink=\"http:\/\/www.w3.org\/1999\/xlink\" ext-link-type=\"uri\" xlink:href=\"http:\/\/www.re-equipp.co.uk\/\">http:\/\/www.re-equipp.co.uk\/<\/jats:ext-link>\n                      )\u00a0to inform future PPI. Learning from the partnership has been collated into a new framework to inform more inclusive PPI for future palliative care research.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1186\/s40900-023-00525-3","type":"journal-article","created":{"date-parts":[[2024,2,8]],"date-time":"2024-02-08T05:02:42Z","timestamp":1707368562000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":23,"title":["A framework for more equitable, diverse, and inclusive Patient and Public Involvement for palliative care research"],"prefix":"10.1186","volume":"10","author":[{"given":"Sarah","family":"Mitchell","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nicola","family":"Turner","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kate","family":"Fryer","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jude","family":"Beng","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Margaret E.","family":"Ogden","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Melanie","family":"Watson","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Clare","family":"Gardiner","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Joanne","family":"Bayly","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Katherine E.","family":"Sleeman","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Catherine J.","family":"Evans","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2024,2,8]]},"reference":[{"issue":"1","key":"525_CR1","doi-asserted-by":"publisher","first-page":"79","DOI":"10.1186\/s12916-020-01544-7","volume":"18","author":"T Jackson","year":"2020","unstructured":"Jackson T, Pinnock H, Liew SM, Horne E, Ehrlich E, Fulton O, et al. Patient and public involvement in research: from tokenistic box ticking to valued team members. BMC Med. 2020;18(1):79.","journal-title":"BMC Med"},{"issue":"2","key":"525_CR2","doi-asserted-by":"publisher","first-page":"142","DOI":"10.1136\/bmjspcare-2020-002719","volume":"12","author":"J Tobin","year":"2022","unstructured":"Tobin J, Rogers A, Winterburn I, Tullie S, Kalyanasundaram A, Kuhn I, Barclay S. Hospice care access inequalities: a systematic review and narrative synthesis. BMJ Supp Palliative Care. 2022;12(2):142\u201351.","journal-title":"BMJ Supp Palliative Care"},{"issue":"3","key":"525_CR3","doi-asserted-by":"publisher","first-page":"e23","DOI":"10.1136\/bmjspcare-2017-001367","volume":"10","author":"J Buck","year":"2020","unstructured":"Buck J, Webb L, Moth L, Morgan L, Barclay S. Persistent inequalities in Hospice at Home provision. BMJ Supp Pall Care. 2020;10(3):e23.","journal-title":"BMJ Supp Pall Care"},{"issue":"4","key":"525_CR4","doi-asserted-by":"publisher","first-page":"e1002782","DOI":"10.1371\/journal.pmed.1002782","volume":"16","author":"JM Davies","year":"2019","unstructured":"Davies JM, Sleeman KE, Leniz J, Wilson R, Higginson IJ, Verne J, et al. Socioeconomic position and use of healthcare in the last year of life: a systematic review and meta-analysis. PLOS Med. 2019;16(4):e1002782.","journal-title":"PLOS Med"},{"issue":"8","key":"525_CR5","doi-asserted-by":"publisher","first-page":"1514","DOI":"10.1177\/02692163211022959","volume":"35","author":"S Bajwah","year":"2021","unstructured":"Bajwah S, Edmonds P, Yorganci E, Chester R, Russell K, Lovell N, et al. The association between ethnicity, socioeconomic deprivation and receipt of hospital-based palliative care for people with Covid-19: a dual centre service evaluation. Palliat Med. 2021;35(8):1514\u20138.","journal-title":"Palliat Med"},{"issue":"8","key":"525_CR6","doi-asserted-by":"publisher","first-page":"969","DOI":"10.1177\/0269216319858247","volume":"33","author":"E Chambers","year":"2019","unstructured":"Chambers E, Gardiner C, Thompson J, Seymour J. Patient and carer involvement in palliative care research: an integrative qualitative evidence synthesis review. Palliat Med. 2019;33(8):969\u201384.","journal-title":"Palliat Med"},{"key":"525_CR7","doi-asserted-by":"publisher","first-page":"e065574","DOI":"10.1136\/bmj-2021-065574","volume":"376","author":"RA Powell","year":"2022","unstructured":"Powell RA, Njoku C, Elangovan R, Sathyamoorthy G, Ocloo J, Thayil S, et al. Tackling racism in UK health research. Br Med J. 2022;376:e065574.","journal-title":"Br Med J"},{"issue":"8","key":"525_CR8","doi-asserted-by":"publisher","first-page":"626","DOI":"10.1136\/bmjqs-2015-004839","volume":"25","author":"J Ocloo","year":"2016","unstructured":"Ocloo J, Matthews R. From tokenism to empowerment: progressing patient and public involvement in healthcare improvement. BMJ Qual Saf. 2016;25(8):626\u201332.","journal-title":"BMJ Qual Saf"},{"issue":"1","key":"525_CR9","doi-asserted-by":"publisher","first-page":"53","DOI":"10.1186\/s40900-021-00296-9","volume":"7","author":"J Reynolds","year":"2021","unstructured":"Reynolds J, Ogden M, Beresford R. Conceptualising and constructing \u2018diversity\u2019 through experiences of public and patient involvement in health research. Res Involv Engage. 2021;7(1):53.","journal-title":"Res Involv Engage"},{"issue":"7696","key":"525_CR10","doi-asserted-by":"publisher","first-page":"405","DOI":"10.1016\/S0140-6736(71)92410-X","volume":"297","author":"HJ Tudor","year":"1971","unstructured":"Tudor HJ. The inverse care law. The Lancet. 1971;297(7696):405\u201312.","journal-title":"The Lancet"},{"issue":"10","key":"525_CR11","doi-asserted-by":"publisher","first-page":"1975","DOI":"10.1177\/02692163211040981","volume":"35","author":"SB O'Donnell","year":"2021","unstructured":"O\u2019Donnell SB, Bone AE, Finucane AM, McAleese J, Higginson IJ, Barclay S, et al. Changes in mortality patterns and place of death during the COVID-19 pandemic: a descriptive analysis of mortality data across four nations. Palliat Med. 2021;35(10):1975\u201384.","journal-title":"Palliat Med"},{"key":"525_CR12","unstructured":"Marmot M, Allen J, Goldblatt P, Herd E, Morrison J Build back fairer: The COVID-19 marmot review. https:\/\/www.health.org.uk\/publications\/build-back-fairer-the-covid-19-marmot-review: The Health Foundation; 2020 Dec 2020."},{"issue":"1","key":"525_CR13","doi-asserted-by":"publisher","first-page":"151","DOI":"10.1177\/0269216320956819","volume":"35","author":"H Johnson","year":"2021","unstructured":"Johnson H, Ogden M, Brighton LJ, Etkind SN, Oluyase AO, Chukwusa E, et al. Patient and public involvement in palliative care research: What works, and why? A qualitative evaluation. Palliat Med. 2021;35(1):151\u201360.","journal-title":"Palliat Med"},{"key":"525_CR14","doi-asserted-by":"publisher","first-page":"14","DOI":"10.1186\/s40900-018-0097-z","volume":"4","author":"LJ Brighton","year":"2018","unstructured":"Brighton LJ, Pask S, Benalia H, Bailey S, Sumerfield M, Witt J, et al. Taking patient and public involvement online: qualitative evaluation of an online forum for palliative care and rehabilitation research. Res Involv Engagem. 2018;4:14.","journal-title":"Res Involv Engagem"},{"issue":"654","key":"525_CR15","doi-asserted-by":"publisher","first-page":"36","DOI":"10.3399\/bjgp17X688765","volume":"67","author":"L Walton","year":"2017","unstructured":"Walton L, Ratcliffe T, Jackson BE, Patterson D. Mining for deep end GPs: a group forged with steel in Yorkshire and Humber. Br J Gen Pract. 2017;67(654):36\u20137.","journal-title":"Br J Gen Pract"},{"issue":"2","key":"525_CR16","doi-asserted-by":"crossref","first-page":"205979912093724","DOI":"10.1177\/2059799120937242","volume":"13","author":"LM Kelly","year":"2020","unstructured":"Kelly LM, Cordeiro M. Three principles of pragmatism for research on organizational processes. Methodol Innov. 2020;13(2):2059799120937242.","journal-title":"Methodol Innov"},{"key":"525_CR17","doi-asserted-by":"publisher","first-page":"100798","DOI":"10.1016\/j.ssmph.2021.100798","volume":"14","author":"GR Bauer","year":"2021","unstructured":"Bauer GR, Churchill SM, Mahendran M, Walwyn C, Lizotte D, Villa-Rueda AA. Intersectionality in quantitative research: a systematic review of its emergence and applications of theory and methods. SSM Popul Health. 2021;14:100798.","journal-title":"SSM Popul Health"},{"issue":"2","key":"525_CR18","doi-asserted-by":"publisher","first-page":"456","DOI":"10.1111\/hex.13186","volume":"24","author":"I Melchior","year":"2021","unstructured":"Melchior I, van der Heijden A, Stoffers E, Suntjens F, Moser A. Patient and public involvement cultures and the perceived impact in the vulnerable context of palliative care: a qualitative study. Health Expect. 2021;24(2):456\u201367.","journal-title":"Health Expect"},{"issue":"5","key":"525_CR19","doi-asserted-by":"publisher","first-page":"836","DOI":"10.1111\/hex.12519","volume":"20","author":"L Locock","year":"2017","unstructured":"Locock L, Boylan A-M, Snow R, Staniszewska S. The power of symbolic capital in patient and public involvement in health research. Health Expect. 2017;20(5):836\u201344.","journal-title":"Health Expect"},{"key":"525_CR20","doi-asserted-by":"crossref","unstructured":"Wilson P, Mathie E, Keenan J, McNeilly E, Goodman C, Howe A, et al. Health services and delivery research. ReseArch with patient and public involvement: a RealisT evaluation \u2013 the RAPPORT study. Southampton (UK): NIHR Journals Library UK; 2015.","DOI":"10.3310\/hsdr03380"},{"issue":"4","key":"525_CR21","doi-asserted-by":"publisher","first-page":"195","DOI":"10.1136\/archdischild-2017-313480","volume":"104","author":"SJ Mitchell","year":"2019","unstructured":"Mitchell SJ, Slowther A-M, Coad J, Akhtar S, Hyde E, Khan D, et al. Ethics and patient and public involvement with children and young people. Arch Dis Child Educ Pract Ed. 2019;104(4):195\u2013200. https:\/\/doi.org\/10.1136\/archdischild-2017-313480. (Epub 2018 Feb 9 PMID: 2944012722).","journal-title":"Arch Dis Child Educ Pract Ed"},{"key":"525_CR22","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.j3453","volume":"358","author":"S Staniszewska","year":"2017","unstructured":"Staniszewska S, Brett J, Simera I, Seers K, Mockford C, Goodlad S, et al. GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research. Br Med J. 2017;358: j3453.","journal-title":"Br Med J"},{"key":"525_CR23","unstructured":"Ogden M. https:\/\/eapcnet.wordpress.com\/2022\/02\/02\/reflections-from-a-public-patient-involvement-member-on-being-part-of-an-out-of-hours-community-palliative-care-research-study\/: European association of Palliative care. 2022. [cited 2023]."},{"issue":"1","key":"525_CR24","doi-asserted-by":"publisher","first-page":"133","DOI":"10.1186\/s12916-020-01555-4","volume":"18","author":"P Bower","year":"2020","unstructured":"Bower P, Grigoroglou C, Anselmi L, Kontopantelis E, Sutton M, Ashworth M, et al. Is health research undertaken where the burden of disease is greatest? Observational study of geographical inequalities in recruitment to research in England 2013\u20132018. BMC Med. 2020;18(1):133.","journal-title":"BMC Med"},{"issue":"4","key":"525_CR25","doi-asserted-by":"publisher","first-page":"530","DOI":"10.1177\/02692163221132091","volume":"37","author":"J Koffman","year":"2023","unstructured":"Koffman J, Bajwah S, Davies JM, Hussain JA. Researching minoritised communities in palliative care: an agenda for change. Palliat Med. 2023;37(4):530\u201342.","journal-title":"Palliat Med"},{"key":"525_CR26","doi-asserted-by":"publisher","unstructured":"Bajwah S, Koffman J, Hussain J, Bradshaw A, Hocaoglu MB, Fraser LK, Oluyase A, Allwin C, Dunleavy L, Preston N, Cripps R, Maddocks M, Sleeman KE, Higginson IJ, Walshe C, Murtagh FEM. CovPall study team. Specialist palliative care services response to ethnic minority groups with COVID-19: equal but inequitable-an observational study. BMJ Supp Palliat Care. 2021:bmjspcare-2021-003083. https:\/\/doi.org\/10.1136\/bmjspcare-2021-003083.","DOI":"10.1136\/bmjspcare-2021-003083"},{"key":"525_CR27","unstructured":"Marie Curie research centre CU, . Public involvement in research impact toolit https:\/\/www.cardiff.ac.uk\/marie-curie-research-centre\/patient-and-public-involvement\/public-involvement-in-research-impact-toolkit-pirit [accessed 16.10.12]."},{"issue":"732","key":"525_CR28","doi-asserted-by":"publisher","first-page":"326","DOI":"10.3399\/bjgp23X733461","volume":"73","author":"C Mitchell","year":"2023","unstructured":"Mitchell C, Fryer K, Guess N, Aminu H, Jackson B, Gordon A, et al. Underserved \u2018deep end\u2019 populations: a critical analysis addressing the power imbalance in research. Br J Gen Pract. 2023;73(732):326\u20139.","journal-title":"Br J Gen Pract"},{"issue":"7","key":"525_CR29","doi-asserted-by":"publisher","first-page":"1202","DOI":"10.1007\/s00247-022-05345-3","volume":"52","author":"RS Ayyala","year":"2022","unstructured":"Ayyala RS, Coley BD. Promoting gender equity and inclusion through allyship. Pediatr Radiol. 2022;52(7):1202\u20136.","journal-title":"Pediatr Radiol"},{"issue":"5","key":"525_CR30","doi-asserted-by":"publisher","first-page":"810","DOI":"10.1177\/02692163211012887","volume":"35","author":"JA Hussain","year":"2021","unstructured":"Hussain JA, Koffman J, Bajwah S. Invited editorials. Palliat Med. 2021;35(5):810\u20133.","journal-title":"Palliat Med"}],"container-title":["Research Involvement and Engagement"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s40900-023-00525-3.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1186\/s40900-023-00525-3\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s40900-023-00525-3.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,2,8]],"date-time":"2024-02-08T05:09:51Z","timestamp":1707368991000},"score":1,"resource":{"primary":{"URL":"https:\/\/researchinvolvement.biomedcentral.com\/articles\/10.1186\/s40900-023-00525-3"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,2,8]]},"references-count":30,"journal-issue":{"issue":"1","published-online":{"date-parts":[[2024,12]]}},"alternative-id":["525"],"URL":"https:\/\/doi.org\/10.1186\/s40900-023-00525-3","relation":{},"ISSN":["2056-7529"],"issn-type":[{"value":"2056-7529","type":"electronic"}],"subject":[],"published":{"date-parts":[[2024,2,8]]},"assertion":[{"value":"17 July 2023","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"30 November 2023","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"8 February 2024","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"Ethical approval for the workshops was granted in July 2022 by the University of Sheffield Research Ethics Committee (ref: 044731). All participants provided informed consent.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval and consent to participate"}},{"value":"Not applicable.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}},{"value":"SM is the National Clinical Director for Palliative and End of Life Care for NHS England (Interim 1.5.23 -31.10.23).","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}],"article-number":"19"}}