{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,23]],"date-time":"2026-09-23T10:09:08Z","timestamp":1790158148793,"version":"4.1.0"},"reference-count":31,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2026,9,23]],"date-time":"2026-09-23T00:00:00Z","timestamp":1790121600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2026,9,23]],"date-time":"2026-09-23T00:00:00Z","timestamp":1790121600000},"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":["206842"],"award-info":[{"award-number":["206842"]}],"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>Patient and public involvement (PPI) is at the centre of high-quality health research, but PPI representatives are often limited in terms of demographic diversity and are often absent from methodology research. In maternity research, this exclusion is consequential, as Black women experience significant healthcare inequities, are often excluded from research, and yet are rarely involved in shaping how research is designed and conducted.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Aim<\/jats:title>\n                    <jats:p>To critically reflect with our PPI members on the development, processes, and impacts of PPI in the methodology study \u2013 PROMISE, which aimed to support Research Delivery Teams to engage Black women in discussions about opportunities to participate in maternal health research.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>PROMISE embedded PPI across the research lifecycle, including grant development, recruitment strategy design, data interpretation, and the co-design of outputs. A purposively recruited national PPI group of Black women with lived experience of pregnancy worked in partnership with researchers and a community engagement organisation. Together with PPI representatives, we drew upon the GRIPP2 long-form framework to articulate learning around conducting meaningful, inclusive PPI in maternal health and methodology research with Black women.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>PPI shaped the study focus, challenged early assumptions about engagement, strengthened interpretation of qualitative findings, and helped co-design the main outputs of the PROMISE study, which included Principles of Engagement for supporting research delivery teams to engage Black women in maternity research. Through this reflective piece we co-developed lessons for conducting inclusive PPI with Black women, highlighting the importance of trust-building, cultural specificity, flexibility, emotional safety, and a recognition of the importance of interpreting findings through lived experience.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>Conceptually, the study positions inclusive PPI with Black women as a methodological necessity that reshapes research design, interpretation, and implementation. Alongside our reflections supported by the GRIPP2 framework, we describe practical approaches to implementing inclusive PPI processes in methodology research.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Trial registration<\/jats:title>\n                    <jats:p>Not applicable.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1186\/s40900-026-00983-5","type":"journal-article","created":{"date-parts":[[2026,9,23]],"date-time":"2026-09-23T09:35:22Z","timestamp":1790156122000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Involving a black woman patient and public involvement group in maternal health methodology research: learning from the PROMISE Study"],"prefix":"10.1186","volume":"12","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-9847-8269","authenticated-orcid":false,"given":"Sophie S.","family":"Hall","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Georgia","family":"Clancy","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Shireen","family":"Patel","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bhuvan","family":"Majmudar","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Fatou","family":"Benga","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Makini","family":"Jones","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Catherine","family":"Henshall","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2026,9,23]]},"reference":[{"issue":"10","key":"983_CR1","doi-asserted-by":"publisher","first-page":"858","DOI":"10.1136\/bmjqs-2017-006954","volume":"27","author":"KA Gray-Burrows","year":"2018","unstructured":"Gray-Burrows KA, Willis TA, Foy R, Rathfelder M, Bland P, Chin A, et al. Role of patient and public involvement in implementation research: a consensus study. BMJ Qual Saf. 2018;27(10):858\u201364.","journal-title":"BMJ Qual Saf"},{"issue":"4","key":"983_CR2","doi-asserted-by":"publisher","first-page":"1436","DOI":"10.1111\/hex.13787","volume":"26","author":"E Agyei-Manu","year":"2023","unstructured":"Agyei-Manu E, Atkins N, Lee B, Rostron J, Dozier M, Smith M, et al. The benefits, challenges, and best practice for patient and public involvement in evidence synthesis: A systematic review and thematic synthesis. Health Expect. 2023;26(4):1436\u201352.","journal-title":"Health Expect"},{"issue":"1","key":"983_CR3","doi-asserted-by":"publisher","first-page":"76","DOI":"10.1186\/s40900-025-00748-6","volume":"11","author":"W Lammons","year":"2025","unstructured":"Lammons W, Buffardi AL, Marks D. Measuring impacts of patient and public involvement and engagement (PPIE): a narrative review synthesis of review evidence. Res Involv Engagem. 2025;11(1):76.","journal-title":"Res Involv Engagem"},{"key":"983_CR4","doi-asserted-by":"publisher","first-page":"100896","DOI":"10.1016\/j.invent.2025.100896","volume":"43","author":"MHM van Vliet","year":"2026","unstructured":"van Vliet MHM, van Eersel RA, Poot CC, Faber JS, Aardoom JJ, Meijer E, et al. A practical step-by-step approach for patient and public involvement in eHealth intervention research: lessons learned from three case projects. Internet Interv. 2026;43:100896. PubMed PMID: 41551032. PMCID: PMC12811673. Epub 20251203. eng.","journal-title":"Internet Interv"},{"issue":"1","key":"983_CR5","doi-asserted-by":"publisher","first-page":"70","DOI":"10.1186\/s12939-025-02431-4","volume":"24","author":"S Pardhan","year":"2025","unstructured":"Pardhan S, Sehmbi T, Wijewickrama R, Onumajuru H, Piyasena MP. Barriers and facilitators for engaging underrepresented ethnic minority populations in healthcare research: an umbrella review. Int J Equity Health. 2025;24(1):70.","journal-title":"Int J Equity Health"},{"issue":"1","key":"983_CR6","doi-asserted-by":"publisher","first-page":"8","DOI":"10.1186\/s12961-020-00644-3","volume":"19","author":"J Ocloo","year":"2021","unstructured":"Ocloo J, Garfield S, Franklin BD, Dawson S. Exploring the theory, barriers and enablers for patient and public involvement across health, social care and patient safety: a systematic review of reviews. Health Res policy Syst. 2021;19(1):8.","journal-title":"Health Res policy Syst"},{"issue":"1","key":"983_CR7","doi-asserted-by":"publisher","first-page":"93","DOI":"10.1186\/s13063-022-06980-9","volume":"24","author":"C Buckley","year":"2023","unstructured":"Buckley C, Treweek S, Laidlaw L, Shiely F. Patient and Public Involvement (PPI) in outcome selection in breast cancer and nephrology trials. Trials. 2023;24(1):93.","journal-title":"Trials"},{"key":"983_CR8","doi-asserted-by":"publisher","first-page":"246","DOI":"10.1016\/j.jclinepi.2023.03.018","volume":"159","author":"MM Schlussel","year":"2023","unstructured":"Schlussel MM, Sharp MK, de Beyer JA, Kirtley S, Logullo P, Dhiman P, et al. Reporting guidelines used varying methodology to develop recommendations. J Clin Epidemiol. 2023;159:246\u201356.","journal-title":"J Clin Epidemiol"},{"issue":"1","key":"983_CR9","doi-asserted-by":"publisher","first-page":"139","DOI":"10.1186\/s13063-024-07968-3","volume":"25","author":"T Coffey","year":"2024","unstructured":"Coffey T, Williamson PR, Gillies K, Groups TMRPW. Understanding implementation of findings from trial method research: a mixed methods study applying implementation frameworks and behaviour change models. Trials. 2024;25(1):139.","journal-title":"Trials"},{"issue":"1","key":"983_CR10","doi-asserted-by":"publisher","first-page":"458","DOI":"10.1186\/s13063-022-06415-5","volume":"23","author":"S Pirosca","year":"2022","unstructured":"Pirosca S, Shiely F, Clarke M, Treweek S. Tolerating bad health research: the continuing scandal. Trials. 2022;23(1):458.","journal-title":"Trials"},{"issue":"3","key":"983_CR11","doi-asserted-by":"publisher","first-page":"e243339","DOI":"10.1001\/jamanetworkopen.2024.3339","volume":"7","author":"S Schandelmaier","year":"2024","unstructured":"Schandelmaier S, Guyatt G. Same Old Challenges in Subgroup Analysis\u2014Should We Do More About Methods Implementation? JAMA Netw Open. 2024;7(3):e243339\u2013e.","journal-title":"JAMA Netw Open"},{"key":"983_CR12","unstructured":"MMBRRACE-UK. Lessons learned to inform maternity care from the UK and Ireland confidential enquiries into maternal deaths and morbidity 2018-20 2022 [Available from: https:\/\/www.npeu.ox.ac.uk\/assets\/downloads\/mbrrace-uk\/reports\/maternal-report-2022\/MBRRACE-UK_Maternal_MAIN_Report_2022_UPDATE.pdf"},{"key":"983_CR13","unstructured":"Committee HoCHaSC. Black maternal health: Third report of session 2024\u201326 (HC 895). UK Parliament; 2025."},{"issue":"4","key":"983_CR14","first-page":"306","volume":"33","author":"S Esegbona-Adeigbe","year":"2023","unstructured":"Esegbona-Adeigbe S. Under-representation of Black women in UK research. MIDIRS Midwifery Digest. 2023;33(4):306\u20138.","journal-title":"MIDIRS Midwifery Digest"},{"issue":"2","key":"983_CR15","doi-asserted-by":"publisher","first-page":"e0282088","DOI":"10.1371\/journal.pone.0282088","volume":"18","author":"H Lovell","year":"2023","unstructured":"Lovell H, Silverio SA, Story L, Skelton E, Matthew J. Factors which influence ethnic minority women\u2019s participation in maternity research: A systematic review of quantitative and qualitative studies. PLoS ONE. 2023;18(2):e0282088.","journal-title":"PLoS ONE"},{"key":"983_CR16","unstructured":"Washington HA. Medical apartheid: the dark history of medical experimentation on Black Americans from colonial times to the present. Doubleday; 2006."},{"key":"983_CR17","unstructured":"Skloot R. The immortal life of Henrietta lacks. Broadway Paperbacks; 2017."},{"key":"983_CR18","unstructured":"Roberts D. Killing the black body: Race, reproduction, and the meaning of liberty. Vintage; 2014."},{"issue":"1","key":"983_CR19","doi-asserted-by":"publisher","first-page":"337","DOI":"10.1186\/s13063-021-05276-8","volume":"22","author":"S Treweek","year":"2021","unstructured":"Treweek S, Banister K, Bower P, Cotton S, Devane D, Gardner HR, et al. Developing the INCLUDE Ethnicity Framework\u2014a tool to help trialists design trials that better reflect the communities they serve. Trials. 2021;22(1):337.","journal-title":"Trials"},{"key":"983_CR20","unstructured":"Available from: https:\/\/www.trialforge.org\/"},{"issue":"1","key":"983_CR21","doi-asserted-by":"publisher","first-page":"227","DOI":"10.1186\/s12874-024-02342-y","volume":"24","author":"K Biggs","year":"2024","unstructured":"Biggs K, Hullock K, Dix C, Lane JA, Green H, Treweek S, et al. Time to STEP UP: methods and findings from the development of guidance to help researchers design inclusive clinical trials. BMC Med Res Methodol. 2024;24(1):227.","journal-title":"BMC Med Res Methodol"},{"key":"983_CR22","doi-asserted-by":"publisher","unstructured":"Medved K, Johnston K, Thomas SS, Hegarty J, Casey G, Connolly RM et al. Patient and public involvement in randomised controlled trial design and implementation: a process evaluation of the linking you to support and advice (LYSA) trial. Res Involv Engagem. 2025;11(1):74. https:\/\/doi.org\/10.1186\/s40900-025-00746-8.","DOI":"10.1186\/s40900-025-00746-8"},{"key":"983_CR23","doi-asserted-by":"publisher","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. BMJ. 2017;358:j3453. https:\/\/doi.org\/10.1136\/bmj.j3453.","DOI":"10.1136\/bmj.j3453"},{"issue":"1","key":"983_CR24","doi-asserted-by":"publisher","first-page":"532","DOI":"10.1186\/s12913-024-11021-z","volume":"24","author":"S Hammoud","year":"2024","unstructured":"Hammoud S, Alsabek L, Rogers L, McAuliffe E. Systematic review on the frequency and quality of reporting patient and public involvement in patient safety research. BMC Health Serv Res. 2024;24(1):532. PubMed PMID: 38671476. PMCID: PMC11046929. Epub 20240426. eng.","journal-title":"BMC Health Serv Res"},{"issue":"2","key":"983_CR25","doi-asserted-by":"publisher","first-page":"e70638","DOI":"10.1111\/hex.70638","volume":"29","author":"K Mand","year":"2026","unstructured":"Mand K, Lavis A, Stepney M, Mooney R, Bhui K. No Ethics Needed? Towards an Ethics of Care for Public and Patient Involvement and Engagement. Health Expect. 2026;29(2):e70638.","journal-title":"Health Expect"},{"key":"983_CR26","doi-asserted-by":"publisher","first-page":"160940692412940","DOI":"10.1177\/16094069241294040","volume":"23","author":"H Udah","year":"2024","unstructured":"Udah H. Decolonising research for justice: Ethical imperatives and practical applications. Int J Qualitative Methods. 2024;23:16094069241294040.","journal-title":"Int J Qualitative Methods"},{"key":"983_CR27","doi-asserted-by":"crossref","unstructured":"Hall SSCG, Patel S, Thorpe N, Majmudar B, Merriman C, Agyapong S, Usman J, Henshall C. A systematic review and meta-synthesis to explore the barriers and facilitators to Black women\u2019s participation in healthcare research. Research Square [preprint]; 2026.","DOI":"10.21203\/rs.3.rs-8730318\/v1"},{"key":"983_CR28","doi-asserted-by":"crossref","unstructured":"Clancy G, Patel S, Majmudar B, Henshall C, Hall SS. Co-Producing Principles of Engagement to Improve the Inclusion of Black Women in UK Maternity and Neonatal Research: A Qualitative Study. 2026.","DOI":"10.21203\/rs.3.rs-9418759\/v1"},{"issue":"2","key":"983_CR29","doi-asserted-by":"publisher","first-page":"e14020","DOI":"10.1111\/hex.14020","volume":"27","author":"K Liabo","year":"2024","unstructured":"Liabo K, Asare L, Ruthen P, Burton J, Staunton P, Day J. Emotion in public involvement: A conceptual review. Health Expect. 2024;27(2):e14020.","journal-title":"Health Expect"},{"issue":"1","key":"983_CR30","doi-asserted-by":"publisher","first-page":"117","DOI":"10.1007\/s40615-017-0350-4","volume":"5","author":"MJ Shen","year":"2018","unstructured":"Shen MJ, Peterson EB, Costas-Mu\u00f1iz R, Hernandez MH, Jewell ST, Matsoukas K, et al. The effects of race and racial concordance on patient-physician communication: a systematic review of the literature. J racial ethnic health disparities. 2018;5(1):117\u201340.","journal-title":"J racial ethnic health disparities"},{"issue":"1","key":"983_CR31","doi-asserted-by":"publisher","first-page":"43","DOI":"10.1136\/bmjinnov-2018-000317","volume":"5","author":"K Deane","year":"2019","unstructured":"Deane K, Delbecque L, Gorbenko O, Hamoir AM, Hoos A, Nafria B, et al. Co-creation of patient engagement quality guidance for medicines development: an international multistakeholder initiative. BMJ innovations. 2019;5(1):43\u201355.","journal-title":"BMJ innovations"}],"container-title":["Research Involvement and Engagement"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s40900-026-00983-5.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1186\/s40900-026-00983-5","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s40900-026-00983-5.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,9,23]],"date-time":"2026-09-23T09:35:28Z","timestamp":1790156128000},"score":1,"resource":{"primary":{"URL":"https:\/\/link.springer.com\/10.1186\/s40900-026-00983-5"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,9,23]]},"references-count":31,"journal-issue":{"issue":"1","published-online":{"date-parts":[[2026,12]]}},"alternative-id":["983"],"URL":"https:\/\/doi.org\/10.1186\/s40900-026-00983-5","relation":{},"ISSN":["2056-7529"],"issn-type":[{"value":"2056-7529","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,9,23]]},"assertion":[{"value":"9 June 2026","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"19 September 2026","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"23 September 2026","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"Ethical approval was granted by the Faculty of Medicine and Health Sciences Research Ethics Committee at the University of Nottingham in October 2024 (Ref: 284\u20130924). Informed consent was collected via an online form.","order":1,"name":"Ethics","label":"Ethics approval and consent to participate","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"All participants\/PPI explicitly gave consent for their anonymised data to be used in publications.","order":2,"name":"Ethics","label":"Consent for publication","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"The authors declare no competing interests.","order":3,"name":"Ethics","label":"Competing interests","group":{"name":"EthicsHeading","label":"Declarations"}}],"article-number":"152"}}