{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,3,24]],"date-time":"2026-03-24T17:51:23Z","timestamp":1774374683935,"version":"3.50.1"},"reference-count":26,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2019,6,4]],"date-time":"2019-06-04T00:00:00Z","timestamp":1559606400000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2019,6,4]],"date-time":"2019-06-04T00:00:00Z","timestamp":1559606400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100005416","name":"Norges Forskningsr\u00e5d","doi-asserted-by":"publisher","award":["229082"],"award-info":[{"award-number":["229082"]}],"id":[{"id":"10.13039\/501100005416","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100002712","name":"H\u00f8gskolen i Oslo og Akershus","doi-asserted-by":"publisher","award":["no number"],"award-info":[{"award-number":["no number"]}],"id":[{"id":"10.13039\/501100002712","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Res Involv Engagem"],"published-print":{"date-parts":[[2019,12]]},"DOI":"10.1186\/s40900-019-0153-3","type":"journal-article","created":{"date-parts":[[2019,6,5]],"date-time":"2019-06-05T15:03:28Z","timestamp":1559747008000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":43,"title":["Facilitating non-tokenistic user involvement in research"],"prefix":"10.1186","volume":"5","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-0424-5948","authenticated-orcid":false,"given":"Grace Inga","family":"Romsland","sequence":"first","affiliation":[]},{"given":"Kate Louise","family":"Milosavljevic","sequence":"additional","affiliation":[]},{"given":"Tone Alm","family":"Andreassen","sequence":"additional","affiliation":[]}],"member":"297","published-online":{"date-parts":[[2019,6,4]]},"reference":[{"key":"153_CR1","doi-asserted-by":"publisher","first-page":"89","DOI":"10.1186\/1472-6963-14-89","volume":"14","author":"JP Domecq","year":"2014","unstructured":"Domecq JP, Prutsky G, Elraiyah T, Wang Z, Nabhan M, Shippee N, et al. Patient engagement in research: a systematic review. BMC Health Serv Res. 2014;14:89.","journal-title":"BMC Health Serv Res"},{"issue":"3","key":"153_CR2","doi-asserted-by":"publisher","first-page":"217","DOI":"10.1002\/casp.623","volume":"11","author":"R Carrick","year":"2001","unstructured":"Carrick R, Mitchell A, Lloyd K. User involvement in research: power and compromise. J Community Appl Soc Psychol. 2001;11(3):217\u201325.","journal-title":"J Community Appl Soc Psychol"},{"issue":"6","key":"153_CR3","doi-asserted-by":"publisher","first-page":"468","DOI":"10.1192\/bjp.181.6.468","volume":"181","author":"P Trivedi","year":"2002","unstructured":"Trivedi P, Wykes T. From passive subjects to equal partners. Qualitative review of user involvement in research. Br J Psychiatry. 2002;181(6):468\u201372.","journal-title":"Br J Psychiatry"},{"issue":"2","key":"153_CR4","doi-asserted-by":"publisher","first-page":"103","DOI":"10.1108\/09526860510588133","volume":"18","author":"V Minogue","year":"2005","unstructured":"Minogue V, Boness J, Brown A, Girdlestone J. The impact of service user involvement in research. Int J Health Care Qual Assur Inc Leadersh Health Serv. 2005;18(2):103\u201312.","journal-title":"Int J Health Care Qual Assur Inc Leadersh Health Serv"},{"issue":"12","key":"153_CR5","doi-asserted-by":"publisher","first-page":"1805","DOI":"10.1016\/j.socscimed.2009.09.056","volume":"69","author":"SK Smith","year":"2009","unstructured":"Smith SK, Dixon A, Trevena L, Nutbeam D, McCaffery KJ. Exploring patient involvement in healthcare decision making across different education and functional health literacy groups. Soc Sci Med. 2009;69(12):1805\u201312.","journal-title":"Soc Sci Med"},{"issue":"2","key":"153_CR6","doi-asserted-by":"publisher","first-page":"139","DOI":"10.1080\/2156857X.2013.835138","volume":"3","author":"P Beresford","year":"2013","unstructured":"Beresford P. From \u2018other\u2019 to involved: user involvement in research: an emerging paradigm. Nordic Soc Work Res. 2013;3(2):139\u201348.","journal-title":"Nordic Soc Work Res"},{"issue":"2","key":"153_CR7","doi-asserted-by":"publisher","first-page":"189","DOI":"10.1016\/j.dhjo.2015.10.001","volume":"9","author":"N Joss","year":"2016","unstructured":"Joss N, Cooklin A, Oldenburg B. A scoping review of end user involvement in disability research. Disabil Health J. 2016;9(2):189\u201396.","journal-title":"Disabil Health J"},{"issue":"1","key":"153_CR8","doi-asserted-by":"publisher","first-page":"181","DOI":"10.1186\/s12913-018-2969-1","volume":"18","author":"ME Snow","year":"2018","unstructured":"Snow ME, Tweedie K, Pederson A. Heard and valued: the development of a model to meaningfully engage marginalized populations in health services planning. BMC Health Serv Res. 2018;18(1):181.","journal-title":"BMC Health Serv Res"},{"key":"153_CR9","doi-asserted-by":"crossref","unstructured":"Garfield S, Jheeta S, Husson F, Jacklin A, Bischler A, Norton C, et al. Lay involvement in the analysis of qualitative data in health services research: a descriptive study. Res Involv Engage. 2016; 2:26.","DOI":"10.1186\/s40900-016-0041-z"},{"issue":"5","key":"153_CR10","doi-asserted-by":"publisher","first-page":"1591","DOI":"10.1093\/bjsw\/bcp064","volume":"40","author":"H McLaughlin","year":"2009","unstructured":"McLaughlin H. Keeping service user involvement in research honest. Br J Soc Work. 2009;40(5):1591\u2013608.","journal-title":"Br J Soc Work"},{"issue":"3","key":"153_CR11","doi-asserted-by":"publisher","first-page":"179","DOI":"10.1016\/j.healthpol.2013.05.008","volume":"112","author":"C Morrison","year":"2013","unstructured":"Morrison C, Dearden A. Beyond tokenistic participation: using representational artefacts to enable meaningful public participation in health service design. Health Policy. 2013;112(3):179\u201386.","journal-title":"Health Policy"},{"issue":"4","key":"153_CR12","doi-asserted-by":"publisher","first-page":"216","DOI":"10.1080\/01944366908977225","volume":"35","author":"SR Arnstein","year":"1969","unstructured":"Arnstein SR. A ladder of citizen participation. J Am Inst Plann. 1969;35(4):216\u201324.","journal-title":"J Am Inst Plann"},{"key":"153_CR13","unstructured":"Involve. People & participation. How to put citizens at the heart of decision-making. (2005). \n                    involve.org\n                    \n                   URL: \n                    http:\/\/www.involve.org.uk\/resources\/publications\/practical-guidance\/people-and-participation\n                    \n                   Accessed 10 Feb 2018."},{"issue":"4","key":"153_CR14","doi-asserted-by":"publisher","first-page":"759","DOI":"10.1111\/jan.12865","volume":"72","author":"L Forbat","year":"2016","unstructured":"Forbat L, Hubbard G. Service user involvement in research may lead to contrary rather than collaborative accounts: findings from a qualitative palliative care study. J Adv Nurs. 2016;72(4):759\u201369.","journal-title":"J Adv Nurs"},{"key":"153_CR15","first-page":"113","volume":"6","author":"J Kearney","year":"2013","unstructured":"Kearney J, Wood L, Zuber-Skerritt O. Community\u2013university partnerships using participatory action learning and action research (PALAR). Gate Int J Commun Res Engage. 2013;6:113\u201330.","journal-title":"Gate Int J Commun Res Engage"},{"issue":"3","key":"153_CR16","doi-asserted-by":"publisher","first-page":"412","DOI":"10.1046\/j.1365-2702.2003.00755.x","volume":"12","author":"S Maslin-Prothero","year":"2003","unstructured":"Maslin-Prothero S. Developing user involvement in research. J Clin Nurs. 2003;12(3):412.","journal-title":"J Clin Nurs"},{"key":"153_CR17","volume-title":"Perspectives on disability & rehabilitation: contesting assumptions; challenging practice","author":"KW Hammell","year":"2006","unstructured":"Hammell KW. Perspectives on disability & rehabilitation: contesting assumptions; challenging practice. Edinburgh: Churchill Livingstone\/Elsevier; 2006."},{"key":"153_CR18","unstructured":"Chang H. Autoethnography as method: Walnut Creec: Left Coast Press; 2008."},{"key":"153_CR19","unstructured":"Ellis C, Adams T, Bochner A. Autoethnography: an overview. Forum Qual Soc Res. 2011;12:10. \u00a0URL: \n                    http:\/\/www.qualitative-research.net\/index.php\/fqs\/article\/view\/1589\/3095\n                    \n                  . Accessed 10 Feb 2018."},{"issue":"12","key":"153_CR20","doi-asserted-by":"publisher","first-page":"997","DOI":"10.3109\/09638288.2011.629712","volume":"34","author":"FA Bright","year":"2012","unstructured":"Bright FA, Boland P, Rutherford SJ, Kayes NM, McPherson KM. Implementing a client-centred approach in rehabilitation: an autoethnography. Disabil Rehabil. 2012;34(12):997\u20131004.","journal-title":"Disabil Rehabil"},{"key":"153_CR21","doi-asserted-by":"publisher","first-page":"321","DOI":"10.1016\/B978-0-12-799943-2.00010-0","volume-title":"Research in medical and biological sciences","author":"K Moen","year":"2015","unstructured":"Moen K, Middelthon A-L. Qualitative research methods. In: Laake P, Benestad H, Olsen B, editors. Research in medical and biological sciences. Oslo: Elsvier Ltd.; 2015. p. 321\u201378."},{"key":"153_CR22","volume-title":"The ethnographer\u2019s method. Qualitative research methods series. Vol. 46","author":"A Stewart","year":"1998","unstructured":"Stewart A. The ethnographer\u2019s method. Qualitative research methods series. Vol. 46. London: Sage; 1998."},{"issue":"5","key":"153_CR23","doi-asserted-by":"publisher","first-page":"513","DOI":"10.1177\/1468794112446049","volume":"12","author":"D Trigger","year":"2012","unstructured":"Trigger D, Forsey M, Meurk C. Revelatory moments in fieldwork. Qual Res. 2012;12(5):513\u201327.","journal-title":"Qual Res"},{"key":"153_CR24","volume-title":"Participatory learning and action. A trainer\u2019s guide","author":"I Guijt","year":"1995","unstructured":"Guijt I, Thompson J, Scoones I. Participatory learning and action. A trainer\u2019s guide. London: IIED; 1995."},{"key":"153_CR25","doi-asserted-by":"publisher","first-page":"28","DOI":"10.1186\/s40900-017-0077-8","volume":"3","author":"T de Brun","year":"2017","unstructured":"de Brun T, O'Reilly-de Br\u00fan M, Van Weel-Baumgarten E, Burns N, Dowrick C, Lionis C, et al. Using participatory learning & action (PLA) research techniques for inter-stakeholder dialogue in primary healthcare: an analysis of stakeholders\u2019 experiences. Res Involv Engagem. 2017;3:28.","journal-title":"Res Involv Engagem"},{"key":"153_CR26","doi-asserted-by":"publisher","first-page":"13","DOI":"10.1186\/s40900-017-0062-2","volume":"3","author":"S Staniszewska","year":"2017","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. Res Involv Engagem. 2017;3:13.","journal-title":"Res Involv Engagem."}],"container-title":["Research Involvement and Engagement"],"original-title":[],"language":"en","link":[{"URL":"http:\/\/link.springer.com\/content\/pdf\/10.1186\/s40900-019-0153-3.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"http:\/\/link.springer.com\/article\/10.1186\/s40900-019-0153-3\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"http:\/\/link.springer.com\/content\/pdf\/10.1186\/s40900-019-0153-3.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2020,6,2]],"date-time":"2020-06-02T23:18:58Z","timestamp":1591139938000},"score":1,"resource":{"primary":{"URL":"https:\/\/researchinvolvement.biomedcentral.com\/articles\/10.1186\/s40900-019-0153-3"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2019,6,4]]},"references-count":26,"journal-issue":{"issue":"1","published-print":{"date-parts":[[2019,12]]}},"alternative-id":["153"],"URL":"https:\/\/doi.org\/10.1186\/s40900-019-0153-3","relation":{},"ISSN":["2056-7529"],"issn-type":[{"value":"2056-7529","type":"electronic"}],"subject":[],"published":{"date-parts":[[2019,6,4]]},"assertion":[{"value":"22 December 2018","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"22 May 2019","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"4 June 2019","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"This study received ethical approval from the Data Protection Official at the Norwegian Centre for Research Data (NSD). Both researchers and users gave their informed consent to participate in the study. All participants were made aware that they could withdraw from participation at any time during the analysis without affecting their involvement as researchers or panel members in the project in general. The empirical material was anonymised as much as possible, but the participants agreed to take part although anonymisation could not be fully guaranteed, as long as it was known in advance who participated in the project. Confidentiality and respect for each participant were emphasised.","order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval and consent to participate"}},{"value":"Participants have consented to publishing of their data.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}},{"value":"The authors declare that they have no competing interests.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}],"article-number":"18"}}