{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,13]],"date-time":"2026-10-13T08:54:44Z","timestamp":1791881684020,"version":"4.3.4"},"reference-count":51,"publisher":"Wiley","issue":"8","license":[{"start":{"date-parts":[[2026,10,13]],"date-time":"2026-10-13T00:00:00Z","timestamp":1791849600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2026,10,13]],"date-time":"2026-10-13T00:00:00Z","timestamp":1791849600000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"funder":[{"DOI":"10.13039\/501100020643","name":"Medical Research Centre","doi-asserted-by":"publisher","award":["MR\/W003732\/1"],"award-info":[{"award-number":["MR\/W003732\/1"]}],"id":[{"id":"10.13039\/501100020643","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Sociology Health &amp; Illness"],"published-print":{"date-parts":[[2026,11]]},"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:p>Patient engagement in the drug development life cycle is becoming normalised, and the return on investment is being quantified. We sought to understand what motivates biotechnology organisations to undertake patient engagement throughout the drug development life cycle, to enable us to generate theoretically and empirically grounded knowledge to optimise patient engagement. This paper draws upon ethnographic research including 200\u00a0hours of informal observation, 50\u00a0hours of formal observation, 10 interviews with biotechnology staff and documentary analysis. With patient input throughout this research, we identified a multitude of motives for patient engagement, including regulatory requirements, corporate social responsibility and return on investment. Less evident was the translation of those motives into a framework that could optimise patient engagement over time and at scale. This was due to the dynamic nature of the drug pipeline, the limited critical space in which patient engagement can occur and misconceptions about patient engagement mechanisms, incentives and metrics. Exploring existing vocabularies of motive within an industry\u2010led initiative identified organisational practice in both drug development processes and wider industry practices that have the potential to inhibit meaningful and sustainable engagement, and thus limit translation and optimisation of discovery\u2010to\u2010prescription translation for a wider group of patients.<\/jats:p>","DOI":"10.1111\/1467-9566.70274","type":"journal-article","created":{"date-parts":[[2026,10,13]],"date-time":"2026-10-13T08:31:59Z","timestamp":1791880319000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Exploring Vocabularies of Motive to Optimise Patient Engagement for Drug Development"],"prefix":"10.1111","volume":"48","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-3503-5911","authenticated-orcid":false,"given":"Julia","family":"Frost","sequence":"first","affiliation":[{"name":"Health and Community Sciences University of Exeter Medical School University of Exeter  Exeter UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"name":"Widening Engagement Patient Advisory Group","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5218-4732","authenticated-orcid":false,"given":"Jessica","family":"Mandizha","sequence":"additional","affiliation":[{"name":"Royal Devon University Healthcare NHS Foundation Trust, Royal Devon and Exeter Hospital (Wonford)  Exeter UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Chantal","family":"van den Dungen","sequence":"additional","affiliation":[{"name":"ABFFP Association Belge Francophone contre la Fibrose Pulmonaire  Rebecq Belgium"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8935-6702","authenticated-orcid":false,"given":"Catherine","family":"Pope","sequence":"additional","affiliation":[{"name":"Nuffield Department of Primary Care Health Sciences  Oxford UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2026,10,13]]},"reference":[{"key":"e_1_2_13_2_1","doi-asserted-by":"publisher","DOI":"10.1080\/15265161.2025.2457713"},{"key":"e_1_2_13_3_1","doi-asserted-by":"publisher","DOI":"10.1080\/03007995.2025.2537888"},{"key":"e_1_2_13_4_1","volume-title":"Patient Engagement in Pharma","author":"Biondi S.","year":"2024"},{"key":"e_1_2_13_5_1","doi-asserted-by":"publisher","DOI":"10.2307\/590609"},{"issue":"1","key":"e_1_2_13_6_1","first-page":"56","article-title":"Container and Thing Contained","volume":"53","author":"Burke K.","year":"1945","journal-title":"Swanee Review"},{"key":"e_1_2_13_7_1","doi-asserted-by":"publisher","DOI":"10.2307\/3710717"},{"key":"e_1_2_13_8_1","doi-asserted-by":"publisher","DOI":"10.3389\/fmed.2022.1082384"},{"key":"e_1_2_13_9_1","doi-asserted-by":"publisher","DOI":"10.1080\/13645579.2013.823281"},{"key":"e_1_2_13_10_1","volume-title":"The Innovation Imperative: The Future of Drug Development II: Barriers, Enablers, and Calls to Action","author":"Economist Intelligence Unit","year":"2018"},{"key":"e_1_2_13_11_1","doi-asserted-by":"publisher","DOI":"10.1111\/hex.13912"},{"key":"e_1_2_13_12_1","doi-asserted-by":"publisher","DOI":"10.23987\/sts.121487"},{"key":"e_1_2_13_13_1","doi-asserted-by":"publisher","DOI":"10.2217\/cer.14.79"},{"key":"e_1_2_13_14_1","unstructured":"European Medicines Agency.2025. \u201cReflection on Patient Experience Data.\u201dhttps:\/\/www.ema.europa.eu\/en\/patient\u2010experience\u2010data\u2010ped\u2010reflection\u2010paper."},{"key":"e_1_2_13_15_1","unstructured":"European Union.2014. \u201cRegulation (EU) No 536\/2014 of the European Parliament and of the Council of 16 April 2014 on Clinical Trials on Medicinal Products for Human Use and Repealing Directive 2001\/20\/EC Text With EEA Relevance.\u201dhttps:\/\/eur\u2010lex.europa.eu\/eli\/reg\/2014\/536\/oj."},{"key":"e_1_2_13_16_1","unstructured":"Food and Drug Administration.2022. \u201cFDA Patient\u2010Focused Drug Development Guidance Series for Enhancing the Incorporation of the Patient\u2019s Voice in Medical Product Development and Regulatory Decision Making.\u201dhttps:\/\/www.fda.gov\/drugs\/development\u2010approval\u2010process\u2010drugs\/fda\u2010patient\u2010focused\u2010drug\u2010development\u2010guidance\u2010series\u2010enhancing\u2010incorporation\u2010patients\u2010voice\u2010medical."},{"key":"e_1_2_13_17_1","doi-asserted-by":"publisher","DOI":"10.2307\/2087964"},{"key":"e_1_2_13_18_1","doi-asserted-by":"publisher","DOI":"10.1186\/s13023\u2010023\u201002682\u2010w"},{"key":"e_1_2_13_19_1","doi-asserted-by":"publisher","DOI":"10.1111\/hex.70260"},{"key":"e_1_2_13_20_1","doi-asserted-by":"publisher","DOI":"10.1111\/hex.70524"},{"key":"e_1_2_13_21_1","doi-asserted-by":"publisher","DOI":"10.1057\/s41292\u2010026\u201000386\u20105"},{"key":"e_1_2_13_22_1","volume-title":"Character and Social Structure: The Psychology of Social Institutions","author":"Gerth H.","year":"1953"},{"key":"e_1_2_13_23_1","doi-asserted-by":"publisher","DOI":"10.1177\/2168479015579521"},{"key":"e_1_2_13_24_1","doi-asserted-by":"crossref","DOI":"10.4324\/9781315146027","volume-title":"Ethnography: Principles in Practice","author":"Hammersley M.","year":"2019"},{"key":"e_1_2_13_25_1","doi-asserted-by":"publisher","DOI":"10.2307\/2094442"},{"key":"e_1_2_13_26_1","unstructured":"International Council for Harmonisation of Technical Requirements for Pharmaceuticals for Human Use (ICH).2021. \u201cGeneral Considerations for Clinical Studies.\u201dhttps:\/\/database.ich.org\/sites\/default\/files\/E8\u2010R1_Guideline_Step4_2021_1006.pdf."},{"key":"e_1_2_13_27_1","doi-asserted-by":"publisher","DOI":"10.1177\/2168479017716715"},{"key":"e_1_2_13_28_1","doi-asserted-by":"publisher","DOI":"10.1177\/1049732315617444"},{"key":"e_1_2_13_29_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmjqs\u20102013\u2010002779"},{"key":"e_1_2_13_30_1","doi-asserted-by":"publisher","DOI":"10.1017\/S0047279418000570"},{"key":"e_1_2_13_31_1","doi-asserted-by":"publisher","DOI":"10.2307\/2084524"},{"key":"e_1_2_13_32_1","doi-asserted-by":"publisher","DOI":"10.30958\/ajss.X\u2010Y\u2010Z"},{"key":"e_1_2_13_33_1","doi-asserted-by":"publisher","DOI":"10.1001\/jama.2024.6314"},{"key":"e_1_2_13_34_1","doi-asserted-by":"publisher","DOI":"10.1186\/s40900\u2010018\u20100107\u20101"},{"key":"e_1_2_13_35_1","doi-asserted-by":"crossref","DOI":"10.4324\/9780429299797","volume-title":"Transforming Healthcare With Qualitative Research","author":"Rapport F.","year":"2020"},{"key":"e_1_2_13_36_1","doi-asserted-by":"publisher","DOI":"10.1007\/s11625\u2010024\u201001496\u20104"},{"key":"e_1_2_13_37_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.k367"},{"key":"e_1_2_13_38_1","doi-asserted-by":"publisher","DOI":"10.1503\/cmaj.250603"},{"key":"e_1_2_13_39_1","doi-asserted-by":"publisher","DOI":"10.2307\/2092239"},{"key":"e_1_2_13_40_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1467\u20109566.2012.01482.x"},{"key":"e_1_2_13_41_1","doi-asserted-by":"publisher","DOI":"10.2189\/asqu.2005.50.1.35"},{"key":"e_1_2_13_42_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.apsb.2022.02.002"},{"key":"e_1_2_13_43_1","doi-asserted-by":"publisher","DOI":"10.2307\/2089195"},{"key":"e_1_2_13_44_1","doi-asserted-by":"crossref","DOI":"10.7208\/chicago\/9780226180458.001.0001","volume-title":"Abductive Analysis: Theorizing Qualitative Research","author":"Tavory I.","year":"2014"},{"key":"e_1_2_13_45_1","doi-asserted-by":"publisher","DOI":"10.1007\/s43441\u2010020\u201000176\u20106"},{"key":"e_1_2_13_46_1","doi-asserted-by":"publisher","DOI":"10.1002\/cpt.2416"},{"key":"e_1_2_13_47_1","volume-title":"MAXQDA 2022","author":"VERBI Software","year":"2021"},{"key":"e_1_2_13_48_1","doi-asserted-by":"publisher","DOI":"10.1177\/0950017096102003"},{"key":"e_1_2_13_49_1","volume-title":"The Theory of Social and Economic Organisation","author":"Weber M.","year":"1947"},{"key":"e_1_2_13_50_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12961\u2010025\u201001421\u2010w"},{"key":"e_1_2_13_51_1","doi-asserted-by":"publisher","DOI":"10.1080\/09581596.2023.2188140"},{"key":"e_1_2_13_52_1","doi-asserted-by":"publisher","DOI":"10.1186\/s40900\u2010022\u201000364\u20108"}],"container-title":["Sociology of Health &amp; Illness"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/1467-9566.70274","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1111\/1467-9566.70274","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/1467-9566.70274","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,10,13]],"date-time":"2026-10-13T08:32:02Z","timestamp":1791880322000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/1467-9566.70274"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,10,13]]},"references-count":51,"journal-issue":{"issue":"8","published-print":{"date-parts":[[2026,11]]}},"alternative-id":["10.1111\/1467-9566.70274"],"URL":"https:\/\/doi.org\/10.1111\/1467-9566.70274","archive":["Portico"],"relation":{},"ISSN":["0141-9889","1467-9566"],"issn-type":[{"value":"0141-9889","type":"print"},{"value":"1467-9566","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,10,13]]},"assertion":[{"value":"2026-02-25","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2026-09-07","order":2,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2026-10-13","order":3,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}],"article-number":"e70274"}}