{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,10]],"date-time":"2026-10-10T18:43:22Z","timestamp":1791657802002,"version":"4.3.4"},"reference-count":40,"publisher":"SAGE Publications","issue":"11","license":[{"start":{"date-parts":[[2024,9,12]],"date-time":"2024-09-12T00:00:00Z","timestamp":1726099200000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"},{"start":{"date-parts":[[2024,9,12]],"date-time":"2024-09-12T00:00:00Z","timestamp":1726099200000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["The Cleft Palate Craniofacial Journal"],"published-print":{"date-parts":[[2025,11]]},"abstract":"<jats:p>Many areas of health research increasingly involve end users of research (typically patients and their families\/caregivers) in study design, management, and dissemination. Beyond recruiting patients as research participants, the shift is towards engaging patients, parents and caregivers as active partners on the research team, who are recognised and valued as \u2018experts-by-experience\u2019 (EbyE). Currently, involving EbyE is not routine in global craniofacial research. This paper highlights the value of EbyE involvement, addresses how to incorporate EbyE at all stages of research and discusses key considerations in facilitating positive experiences for EbyE.<\/jats:p>","DOI":"10.1177\/10556656241283195","type":"journal-article","created":{"date-parts":[[2024,9,13]],"date-time":"2024-09-13T23:25:08Z","timestamp":1726269908000},"page":"1975-1980","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":5,"title":["Involving Experts by Experience in Craniofacial Research"],"prefix":"10.1177","volume":"62","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-6370-752X","authenticated-orcid":false,"given":"Amanda","family":"Bates","sequence":"first","affiliation":[{"name":"Centre for Health Services Studies, University of Kent, Canterbury, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8105-3926","authenticated-orcid":false,"given":"Kenny","family":"Ardouin","sequence":"additional","affiliation":[{"name":"University of Canterbury"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1766-4175","authenticated-orcid":false,"given":"Danielle","family":"McWilliams","sequence":"additional","affiliation":[{"name":"Canterbury Christ Church University"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2024,9,12]]},"reference":[{"key":"e_1_3_3_2_2","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0122499"},{"key":"e_1_3_3_3_2","doi-asserted-by":"publisher","DOI":"10.1186\/s12961-018-02824"},{"key":"e_1_3_3_4_2","doi-asserted-by":"publisher","DOI":"10.14324\/rfa.06.1.19"},{"key":"e_1_3_3_5_2","doi-asserted-by":"publisher","DOI":"10.18546\/rfa.02.2.07"},{"key":"e_1_3_3_6_2","doi-asserted-by":"publisher","DOI":"10.1186\/s40900-020-00224-3"},{"key":"e_1_3_3_7_2","unstructured":"National Institute for Health Research (NIHR). Accessed August 5 2024. https:\/\/www.nihr.ac.uk\/about-us\/what-we-do\/"},{"key":"e_1_3_3_8_2","unstructured":"Patient-Centred Outcomes Research Institute (PCORI). Accessed August 5 2024. https:\/\/www.pcori.org\/"},{"key":"e_1_3_3_9_2","unstructured":"National Institute of Dental and Craniofacial Research (NIDCR). July 2024. Accessed August 5 2024. https:\/\/www.nidcr.nih.gov\/"},{"key":"e_1_3_3_10_2","volume-title":"Strategy for Patient-Oriented Research","author":"Government of Canada CI of HR","unstructured":"Government of Canada CI of HR. Strategy for Patient-Oriented Research. CIHR; March 24, 2023. Accessed August 30, 2023. https:\/\/cihr-irsc.gc.ca\/e\/41204.html"},{"key":"e_1_3_3_11_2","unstructured":"National Ethics Advisory Committee. 3. research and M\u0101ori. 3. Research and M\u0101ori | National Ethics Advisory Committee. October 10 2023. Accessed April 17 2024. https:\/\/neac.health.govt.nz\/national-ethical-standards\/part-two\/3-research-and-maori"},{"key":"e_1_3_3_12_2","unstructured":"University of Otago. Research consultation with M\u0101ori Policy. Research Consultation with M\u0101ori Policy. September 12 2023. Accessed April 17 2024. https:\/\/www.otago.ac.nz\/administration\/policies\/policy-collection\/research-consultation-with-maori-policy"},{"key":"e_1_3_3_13_2","unstructured":"Guidelines for researchers on health research involving M\u0101ori. Health Research Council of New Zealand. August 12 2003. Accessed April 17 2024. https:\/\/www.hrc.govt.nz\/resources\/guidelines-researchers-health-research-involving-maori"},{"key":"e_1_3_3_14_2","unstructured":"Rare Disease Advisory Councils National Organization for Rare Disorders. Accessed July 24 2024. https:\/\/rarediseases.org\/policy-issues\/rare-disease-advisory-councils\/"},{"key":"e_1_3_3_15_2","doi-asserted-by":"publisher","DOI":"10.1186\/s40900-015-0003-x"},{"key":"e_1_3_3_16_2","unstructured":"Priority Setting Partnerships James Lind Alliance. Accessed July 24 2024. https:\/\/www.jla.nihr.ac.uk\/"},{"key":"e_1_3_3_17_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.ijporl.2012.11.035"},{"key":"e_1_3_3_18_2","unstructured":"Cleft Lip and Palate James Lind Alliance. Accessed April 17 2024. https:\/\/www.jla.nihr.ac.uk\/priority-setting-partnerships\/cleft-lip-and-palate\/"},{"key":"e_1_3_3_19_2","unstructured":"Cleft lip and palate top 10 James Lind Alliance. Accessed September 7 2023. https:\/\/www.jla.nihr.ac.uk\/priority-setting-partnerships\/cleft-lip-and-palate\/top-10-priorities\/"},{"key":"e_1_3_3_20_2","doi-asserted-by":"publisher","DOI":"10.1186\/s40900-018-0098-y"},{"key":"e_1_3_3_21_2","doi-asserted-by":"publisher","DOI":"10.12688\/f1000research.15162.1"},{"key":"e_1_3_3_22_2","doi-asserted-by":"publisher","DOI":"10.3310\/hsdr03380"},{"key":"e_1_3_3_23_2","doi-asserted-by":"publisher","DOI":"10.7861\/fhj.2022-0108"},{"key":"e_1_3_3_24_2","doi-asserted-by":"publisher","DOI":"10.1136\/bmjqs-2015-004839"},{"key":"e_1_3_3_25_2","doi-asserted-by":"publisher","DOI":"10.1186\/s40900-019-0170-2"},{"key":"e_1_3_3_26_2","unstructured":"Training for involvement and engagement. National Institute for Health and Care Research School for Primary Care Research. Accessed September 7 2023. https:\/\/www.spcr.nihr.ac.uk\/PPI\/resources-for-researchers\/training-for-involvement-and-engagement"},{"key":"e_1_3_3_27_2","unstructured":"Working with Patients & Families as Advisors (Implementation Handbook). Accessed August 5 2024. https:\/\/www.ahrq.gov\/sites\/default\/files\/wysiwyg\/professionals\/systems\/hospital\/engagingfamilies\/strategy1\/Strat1_Implement_Hndbook_508_v2.pdf"},{"key":"e_1_3_3_28_2","doi-asserted-by":"publisher","DOI":"10.1093\/oxfordhb\/9780199580521.013.0049"},{"key":"e_1_3_3_29_2","doi-asserted-by":"publisher","DOI":"10.1111\/hex.12952"},{"key":"e_1_3_3_30_2","doi-asserted-by":"publisher","DOI":"10.1186\/s40900-021-00330-w"},{"key":"e_1_3_3_31_2","volume-title":"Payment Guidance for Researchers and Professionals","unstructured":"Payment Guidance for Researchers and Professionals. NIHR. Accessed April 17, 2024. https:\/\/www.nihr.ac.uk\/documents\/payment-guidance-for-researchers-and-professionals\/27392"},{"key":"e_1_3_3_32_2","unstructured":"How to Guide \u2013 How to involve the public as co-authors. Health Innovation East Midlands (UK). Accessed August 5 2024. https:\/\/healthinnovation-em.org.uk\/images\/resource-hub\/PPI%20documents\/How%20to%20guidance\/How_to_involve_people_as_co-authors.pdf"},{"key":"e_1_3_3_33_2","doi-asserted-by":"publisher","DOI":"10.1186\/s13063-021-05701-y"},{"key":"e_1_3_3_34_2","doi-asserted-by":"publisher","DOI":"10.1111\/hex.13713"},{"key":"e_1_3_3_35_2","doi-asserted-by":"publisher","DOI":"10.1111\/hex.12597"},{"key":"e_1_3_3_36_2","unstructured":"Beresford P. Beyond the usual suspects: Towards inclusive user involvement. 2013. Accessed August 5 2024. https:\/\/shapingourlives.org.uk\/report\/beyond-the-usual-suspects-research-report\/"},{"key":"e_1_3_3_37_2","doi-asserted-by":"publisher","DOI":"10.1093\/qje\/qjx029"},{"key":"e_1_3_3_38_2","doi-asserted-by":"publisher","DOI":"10.1038\/s41562-022-01406-7"},{"key":"e_1_3_3_39_2","doi-asserted-by":"publisher","DOI":"10.1186\/s40900-021-00296-9"},{"key":"e_1_3_3_40_2","doi-asserted-by":"publisher","DOI":"10.1177\/13558196221124740"},{"key":"e_1_3_3_41_2","doi-asserted-by":"publisher","DOI":"10.1525\/california\/9780520207950.001.0001"}],"container-title":["The Cleft Palate Craniofacial Journal"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/10556656241283195","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/full-xml\/10.1177\/10556656241283195","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/10556656241283195","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,4,28]],"date-time":"2026-04-28T16:21:21Z","timestamp":1777393281000},"score":1,"resource":{"primary":{"URL":"https:\/\/journals.sagepub.com\/doi\/10.1177\/10556656241283195"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,9,12]]},"references-count":40,"journal-issue":{"issue":"11","published-print":{"date-parts":[[2025,11]]}},"alternative-id":["10.1177\/10556656241283195"],"URL":"https:\/\/doi.org\/10.1177\/10556656241283195","relation":{},"ISSN":["1055-6656","1545-1569"],"issn-type":[{"value":"1055-6656","type":"print"},{"value":"1545-1569","type":"electronic"}],"subject":[],"published":{"date-parts":[[2024,9,12]]}}}