{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,4]],"date-time":"2026-06-04T19:07:00Z","timestamp":1780600020566,"version":"3.54.1"},"reference-count":19,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2024,7,4]],"date-time":"2024-07-04T00:00:00Z","timestamp":1720051200000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2024,7,4]],"date-time":"2024-07-04T00:00:00Z","timestamp":1720051200000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"name":"National Institute for Health and Care Research,United Kingdom","award":["PR-PRU-1217-21202"],"award-info":[{"award-number":["PR-PRU-1217-21202"]}]},{"DOI":"10.13039\/501100000769","name":"University of Oxford","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100000769","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><jats:sec>\n                <jats:title>Background<\/jats:title>\n                <jats:p>Policy research aims to provide evidence to inform government policy decisions about health and social care. Engaging and involving the public and patients in this work is widely recognised as essential. Research funders prioritise equality, diversity and inclusion (EDI) in patient and public involvement and engagement (PPIE), but people who are most likely to experience poor outcomes are also those least likely to be involved in research. This paper describes our experience of setting out to understand how to overcome barriers to EDI in PPIE in the research carried out by the National Institute for Health and Care Research (NIHR) Policy Research Unit in Maternal and Neonatal Health and Care (PRU-MNHC), in a PPIE consultation project we called <jats:italic>The Listening Series<\/jats:italic>.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Methods<\/jats:title>\n                <jats:p>We convened five video-recorded online discussion groups involving 20 individuals advocating for groups who are under-represented in our research. Those taking part included people working with Black and Asian women and families, young parents, those from socially deprived backgrounds, and women and families with physical and learning disabilities. Discussions focussed on practical solutions to addressing challenges to people being excluded, and how to improve EDI in our research.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Learning and reflection<\/jats:title>\n                <jats:p>Five key themes were identified: \u2018build trust\u2019; \u2018involve us from the beginning\u2019; \u2018show us impact\u2019; \u2018use clear, appropriate and inclusive communication\u2019; and \u2018imagine life in our shoes\u2019. We used the learning to create a guidance document for researchers and an accompanying 15-minute film. We also took practical steps to embed the learning strategically by expanding our Task Group for PPIE in the PRU-MNHC to include four <jats:italic>Listening Series<\/jats:italic> invitees with a remit to champion EDI in our research and ensure that it is embedded in our PPIE activities. We continue to reflect on and work to address the associated challenges.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Conclusions<\/jats:title>\n                <jats:p><jats:italic>The Listening Series<\/jats:italic> helped us rethink our processes for inclusion to go beyond traditional methods of involvement and engagement. The themes identified pose challenges that require time, resource and empathic engagement from researchers to be meaningfully resolved. This has implications for policy makers and research funders who need to consider this in their processes.<\/jats:p>\n              <\/jats:sec>","DOI":"10.1186\/s40900-024-00601-2","type":"journal-article","created":{"date-parts":[[2024,7,4]],"date-time":"2024-07-04T14:02:22Z","timestamp":1720101742000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":12,"title":["\u2018The Listening Series\u2019: increasing equity, diversity and inclusion in patient and public involvement and engagement for policy research by listening to and learning from under-represented groups"],"prefix":"10.1186","volume":"10","author":[{"given":"Charlotte","family":"Bevan","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Fiona","family":"Alderdice","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sally","family":"Darby","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Serena","family":"Gilzean-Hughes","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jenny","family":"McLeish","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sumayya","family":"Mulla","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rachel","family":"Plachcinski","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sophia","family":"Wilkinson","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Harriet","family":"Williams","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rachel","family":"Rowe","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2024,7,4]]},"reference":[{"key":"601_CR1","unstructured":"National Institute for Health and Care Research. Policy Research London: NIHR. 2023 [Accessed 14th December 2023]. https:\/\/www.nihr.ac.uk\/explore-nihr\/funding-programmes\/policy-research.htm."},{"key":"601_CR2","unstructured":"National Perinatal Epidemiology Unit. PRU-MNHC Oxford: National Perinatal Epidemiology Unit, University of Oxford. 2023 [Accessed 14th December 2023]. https:\/\/www.npeu.ox.ac.uk\/pru-mnhc."},{"issue":"1","key":"601_CR3","doi-asserted-by":"publisher","first-page":"63","DOI":"10.1186\/s40900-020-00239-w","volume":"6","author":"J Russell","year":"2020","unstructured":"Russell J, Fudge N, Greenhalgh T. The impact of public involvement in health research: what are we measuring? Why are we measuring it? Should we stop measuring it? Res Involv Engagem. 2020;6(1):63.","journal-title":"Res Involv Engagem"},{"key":"601_CR4","unstructured":"Watt T, Raymond A, Rachet-Jacquet L. Quantifying health inequalities in England London: The Health Foundation; 2022 [Accessed 14th December 2023]. https:\/\/www.health.org.uk\/news-and-comment\/charts-and-infographics\/quantifying-health-inequalities."},{"key":"601_CR5","unstructured":"Webster K, NMPA Project Team. Ethnic and Socio-economic Inequalities in NHS Maternity and Perinatal Care for Women and their Babies. and 31 March 2018 across England, Scotland and Wales. London: RCOG; 2021. : Assessing care using data from births between 1 April 2015."},{"key":"601_CR6","unstructured":"Draper E, Gallimore I, Smith L, Matthews R, Fenton A, Kurinczuk J et al. MBRRACE-UK Perinatal Mortality Surveillance Report, UK Perinatal Deaths for Births from January to December 2020. Leicester: The Infant Mortality and Morbidity Studies, Department of Health Sciences, University of Leicester; 2022."},{"key":"601_CR7","volume-title":"Saving lives, improving mothers\u2019 Care Core Report - lessons learned to inform maternity care from the UK and Ireland Confidential enquiries into maternal deaths and morbidity 2018-20","author":"M Knight","year":"2022","unstructured":"Knight M, Bunch K, Patel R, Shakespeare J, Kotnis R, Kenyon S, et al. Saving lives, improving mothers\u2019 Care Core Report - lessons learned to inform maternity care from the UK and Ireland Confidential enquiries into maternal deaths and morbidity 2018-20. Oxford: National Perinatal Epidemiology Unit, University of Oxford; 2022."},{"key":"601_CR8","unstructured":"Imison C, Kaur M, Dawson S. Supporting equity and tackling inequality: how can NIHR promote inclusion in public partnerships? An agenda for action. London: National Institute for Health and Care Research; 2022. https:\/\/www.learningforinvolvement.org.uk\/content\/resource\/supporting-equity-and-tackling-inequality-how-can-nihr-promote-inclusion-in-public-partnerships."},{"key":"601_CR9","unstructured":"Beresford P. Beyond the Usual Suspects. London: Shaping our Lives; 2013 8th September 2023]. https:\/\/shapingourlives.org.uk\/report\/beyond-the-usual-suspects-research-report\/."},{"key":"601_CR10","unstructured":"National Institute for Health and Care Research. NIHR Public Involvement Feedback Survey 2020\u20132021: The results London: NIHR. 2022 [Accessed 8th September 2023]. https:\/\/www.nihr.ac.uk\/documents\/nihr-public-involvement-feedback-survey-2020-2021-the-results\/29751."},{"issue":"1","key":"601_CR11","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"},{"key":"601_CR12","unstructured":"healthtalk.org. Patient and public involvement in research: Difficulties and barriers to involvement Oxford: The Dipex Charity. 2019 [Accessed 8th September 2023]. https:\/\/healthtalk.org\/experiences\/patient-and-public-involvement-research\/difficulties-and-barriers-to-involvement\/."},{"issue":"1","key":"601_CR13","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"},{"key":"601_CR14","doi-asserted-by":"publisher","first-page":"92","DOI":"10.1186\/1472-6963-10-92","volume":"10","author":"SM Flanagan","year":"2010","unstructured":"Flanagan SM, Hancock B. Reaching the hard to reach\u2019--lessons learned from the VCS (voluntary and community Sector). A qualitative study. BMC Health Serv Res. 2010;10:92.","journal-title":"BMC Health Serv Res"},{"issue":"1","key":"601_CR15","doi-asserted-by":"publisher","first-page":"46","DOI":"10.1186\/s40900-021-00292-z","volume":"7","author":"S Islam","year":"2021","unstructured":"Islam S, Joseph O, Chaudry A, Forde D, Keane A, Wilson C, et al. We are not hard to reach, but we may find it hard to trust \u2026 Involving and engaging \u2018seldom listened to\u2019 community voices in clinical translational health research: a social innovation approach. Res Involv Engagem. 2021;7(1):46.","journal-title":"Res Involv Engagem"},{"key":"601_CR16","unstructured":"National Institute for Health and Care Research. Payment guidance for researchers and professionals London: NIHR. 2022 [Accessed 14th December 2023]. https:\/\/www.nihr.ac.uk\/documents\/payment-guidance-for-researchers-and-professionals\/27392."},{"key":"601_CR17","unstructured":"Plachcinski R, Alderdice F, Bevan C, Wilkinson S, Rowe R. The Listening Series: including everyone in public engagement with research. Guidance for researchers. 2022 Date Accessed. https:\/\/tv.ndph.ox.ac.uk\/wp-content\/uploads\/2022\/01\/Listening-Series-Guide-for-Researchers.pdf."},{"key":"601_CR18","unstructured":"Policy Research Unit in Maternal and Neonatal Health and Care. Listening Series [Video]. Oxford: Oxford Population Health. 2022 [ https:\/\/tv.ndph.ox.ac.uk\/ppie\/."},{"key":"601_CR19","volume-title":"Developing training and support for public involvement in research","author":"INVOLVE","year":"2012","unstructured":"INVOLVE. Developing training and support for public involvement in research. Eastleigh: INVOLVE; 2012."}],"container-title":["Research Involvement and Engagement"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s40900-024-00601-2.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1186\/s40900-024-00601-2\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s40900-024-00601-2.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,7,4]],"date-time":"2024-07-04T14:05:15Z","timestamp":1720101915000},"score":1,"resource":{"primary":{"URL":"https:\/\/researchinvolvement.biomedcentral.com\/articles\/10.1186\/s40900-024-00601-2"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,7,4]]},"references-count":19,"journal-issue":{"issue":"1","published-online":{"date-parts":[[2024,12]]}},"alternative-id":["601"],"URL":"https:\/\/doi.org\/10.1186\/s40900-024-00601-2","relation":{},"ISSN":["2056-7529"],"issn-type":[{"value":"2056-7529","type":"electronic"}],"subject":[],"published":{"date-parts":[[2024,7,4]]},"assertion":[{"value":"13 February 2024","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"28 June 2024","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"4 July 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":"Formal research ethics approval was not required for this PPI consultation. We sought consent from all participants in The Listening Series for inclusion of extracts in the film.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval and consent to participate"}},{"value":"Consent sought and obtained.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}},{"value":"The authors declare no competing interests.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}],"article-number":"71"}}