{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,21]],"date-time":"2026-08-21T11:55:13Z","timestamp":1787313313126,"version":"build-2736575974"},"reference-count":23,"publisher":"Wiley","issue":"6","license":[{"start":{"date-parts":[[2022,9,12]],"date-time":"2022-09-12T00:00:00Z","timestamp":1662940800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100002081","name":"Irish Research Council","doi-asserted-by":"publisher","award":["IRC\/V006371\/1"],"award-info":[{"award-number":["IRC\/V006371\/1"]}],"id":[{"id":"10.13039\/501100002081","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100000269","name":"Economic and Social Research Council","doi-asserted-by":"publisher","award":["ES V006371 1"],"award-info":[{"award-number":["ES V006371 1"]}],"id":[{"id":"10.13039\/501100000269","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Health Expectations"],"published-print":{"date-parts":[[2022,12]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:label\/>\n                    <jats:p>Meaningful and inclusive involvement of all people affected by research in the design, management\u00a0and dissemination of that research requires skills, time, flexibility\u00a0and resources. There continue to be research practices that create implicit and explicit exclusion of some members of the public who may be \u2018seldom heard\u2019 or \u2018frequently ignored\u2019. Our focus is particularly on the involvement of people living with cognitive impairment, including people with one of the many forms of dementia and people with learning disabilities. We reflect especially on issues relating to the precommencement stage of research. We suggest that despite pockets of creative good practice, research culture remains a distinct habitus that continues to privilege cognition and articulacy in numerous ways. We argue that in perpetuating this system, some researchers and the institutions that govern research are committing a form of bureaucratic violence. We call for a reimagining of the models of research governance, funding and processes to incorporate the time and flexibility that are essential for meaningful involved research, particularly at the precommencement stage. Only then will academic health and social science research that is truly collaborative, engaged, accessible\u00a0and inclusive be commonplace.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Public and Patient Contribution<\/jats:title>\n                    <jats:p>This viewpoint article was written by a research network of academics with substantial experience in undertaking and researching patient and public involvement and codesign work with representatives of the public and patients right across the health system. Our work guided the focus of this viewpoint as we reflected on our experiences.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/hex.13576","type":"journal-article","created":{"date-parts":[[2022,9,13]],"date-time":"2022-09-13T00:34:13Z","timestamp":1663029253000},"page":"2609-2613","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":9,"title":["\u2018Language has been granted too much power\u2019.\n                    <sup>1,p.1<\/sup>\n                    \u00a0Challenging the power of words with time and flexibility in the precommencement stage of research involving those with cognitive impairment"],"prefix":"10.1111","volume":"25","author":[{"given":"Louise","family":"Locock","sequence":"first","affiliation":[{"name":"Health Services Research Unit University of Aberdeen Aberdeen Scotland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7562-5484","authenticated-orcid":false,"given":"Deirdre","family":"O'Donnell","sequence":"additional","affiliation":[{"name":"School of Nursing, Midwifery and Health Systems University College Dublin Dublin Ireland"},{"name":"UCD Centre for Interdisciplinary Research, Education and Innovation in Health Systems (IRIS) University College Dublin Dublin Ireland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sarah","family":"Donnelly","sequence":"additional","affiliation":[{"name":"UCD Centre for Interdisciplinary Research, Education and Innovation in Health Systems (IRIS) University College Dublin Dublin Ireland"},{"name":"School of Social Policy, Social Work and Social Justice University College Dublin Dublin Ireland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Liz","family":"Ellis","sequence":"additional","affiliation":[{"name":"Institute of Health Research and Innovation University of the Highlands and Islands Inverness Scotland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Thilo","family":"Kroll","sequence":"additional","affiliation":[{"name":"School of Nursing, Midwifery and Health Systems University College Dublin Dublin Ireland"},{"name":"UCD Centre for Interdisciplinary Research, Education and Innovation in Health Systems (IRIS) University College Dublin Dublin Ireland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"\u00c9id\u00edn N\u00ed","family":"Sh\u00e9","sequence":"additional","affiliation":[{"name":"Graduate School of Healthcare Management Royal College of Surgeons in Ireland Dublin Ireland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sara","family":"Ryan","sequence":"additional","affiliation":[{"name":"Department of Social Care and Social Work Manchester Metropolitan University Manchester UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2022,9,12]]},"reference":[{"key":"e_1_2_10_2_1","doi-asserted-by":"publisher","DOI":"10.1086\/345321"},{"key":"e_1_2_10_3_1","volume-title":"Disability Rights Wrongs Revisited","author":"Shakespeare T","year":"2014"},{"key":"e_1_2_10_4_1","volume-title":"The Experience of Alzheimer's Disease: Life through a Tangled Veil","author":"Sabat SR","year":"2001"},{"key":"e_1_2_10_5_1","doi-asserted-by":"publisher","DOI":"10.1177\/1471301214548143"},{"key":"e_1_2_10_6_1","doi-asserted-by":"publisher","DOI":"10.1186\/s40900-020-00220-7"},{"key":"e_1_2_10_7_1","doi-asserted-by":"publisher","DOI":"10.1111\/hex.13308"},{"key":"e_1_2_10_8_1","doi-asserted-by":"publisher","DOI":"10.1111\/hex.12864"},{"key":"e_1_2_10_9_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(20)30051-9"},{"key":"e_1_2_10_10_1","unstructured":"EscobarO MortonS LightbodyR SeditasK. 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