{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,19]],"date-time":"2026-10-19T16:43:44Z","timestamp":1792428224801,"version":"4.5.0"},"reference-count":46,"publisher":"Wiley","issue":"5","license":[{"start":{"date-parts":[[2026,10,5]],"date-time":"2026-10-05T00:00:00Z","timestamp":1791158400000},"content-version":"vor","delay-in-days":4,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2026,10,1]],"date-time":"2026-10-01T00:00:00Z","timestamp":1790812800000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Health Expectations"],"published-print":{"date-parts":[[2026,10]]},"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Introduction<\/jats:title>\n                    <jats:p>Health consumer representatives (HCRs) are increasingly expected to contribute to decision\u2010making across the health system, including at the level of policy, strategy and system\u2010wide governance. However, while HCR involvement is relatively well established at the direct\u2010care and health service\u2010level context, system level involvement remains underdeveloped and poorly understood as a distinct form of participation. In addition, and arguably because of this, HCR involvement at this level continues to face the persistent challenges, such as role confusion and tokenistic \u2018tick\u2010a\u2010box\u2019 engagement, despite increasing policy commitments. This study explores the lived experiences of HCRs in Australia to better understand how system\u2010level involvement is experienced in practice.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>Thirteen HCRs from across Australia were purposively sampled and participated in semi\u2010structured one\u2010to\u2010one interviews conducted via Zoom or telephone. Interviews were audio\u2010recorded, transcribed and analysed iteratively using an interpretive phenomenological approach.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>\n                      Participants\u2019 experiences were captured by the prominent theme of\n                      <jats:bold>being the \u2018only consumer\u2019<\/jats:bold>\n                      , reflecting both the uniqueness of their role and expertise, but also the feeling of marginalisation they face. Two cross\u2010cutting influences shaped this experience:\n                      <jats:bold>power dynamics<\/jats:bold>\n                      , including structural and interpersonal inequities and\n                      <jats:bold>relational factors<\/jats:bold>\n                      , particularly allyship and supportive relationships. One key element of the consumer experience was the process of\n                      <jats:bold>becoming an expert<\/jats:bold>\n                      as they gained knowledge of systems and confidence in the value of the consumer perspective. Another was\n                      <jats:bold>finding meaning<\/jats:bold>\n                      in their work both through everyday interactions and long\u2010term contributions to systems change.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>The quality of HCR involvement in system\u2010level spaces is shaped not only by governance structures, organisational processes and policy commitments, but also by power dynamics, relationships and the extent to which lived experience is recognised as unique expertise. Underpinning this, the ability for HCRs to find meaning in their roles and in genuine partnerships is what moves their involvement beyond tokenism into supported and valued participation. These findings highlight that meaningful system\u2010level HCR involvement depends not only on having consumers \u2018in the room\u2019, but on recognising their expertise, sharing power, building respectful relationships, and designing structures that allow their contributions to influence decisions.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Patient or Public Contribution<\/jats:title>\n                    <jats:p>Investigator HF holds the dual role of researcher and HCR peak body worker and has personal lived experience of being an HCR at the health\u2010system level. The inception of the research question was grounded in this lived experience and informed by regular input from two highly experienced HCR peers. Study participants contributed to refining themes and the interpretation of data. Importantly, the central objective of the research was to elevate the insights, reflections, and lived experiences of HCRs.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/hex.70901","type":"journal-article","created":{"date-parts":[[2026,10,5]],"date-time":"2026-10-05T11:40:19Z","timestamp":1791200419000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Being \u2018The Only Consumer\u2019 \u2013 Exploring the Lived Experiences of Health Consumer Representatives in Australian Health System Involvement"],"prefix":"10.1111","volume":"29","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-4968-141X","authenticated-orcid":false,"given":"Hannah","family":"Fielder","sequence":"first","affiliation":[{"name":"University of Tasmania, Tasmanian School of Medicine Hobart Tasmania Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7409-8520","authenticated-orcid":false,"given":"Rebecca","family":"Kelly","sequence":"additional","affiliation":[{"name":"University of Tasmania, Tasmanian School of Medicine Hobart Tasmania Australia"},{"name":"The George Institute for Global Health, University of New South Wales Sydney New South Wales Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8208-5818","authenticated-orcid":false,"given":"Phoebe","family":"Griffin","sequence":"additional","affiliation":[{"name":"University of Tasmania, Tasmanian School of Medicine Launceston Tasmania Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2026,10,5]]},"reference":[{"key":"e_1_2_11_2_1","unstructured":"World Health Organization Declaration of Alma\u2010Ata: International Conference on Primary Health Care Alma\u2010Ata USSR Alma\u2010Ata USSR1978."},{"issue":"3","key":"e_1_2_11_3_1","first-page":"A5","article-title":"7 Working in Partnership: Service User Involvement in Healthcare Regulation","volume":"14","author":"Josje K.","year":"2025","journal-title":"BMJ Open Quality"},{"key":"e_1_2_11_4_1","unstructured":"Australian Commission on Safety and Quality in Health Care (ACSQHS) The NSQHS Standards \u2010 Partnering With Consumers Standard: ACSQHS;2024 ttps:\/\/www.safetyandquality.gov.au\/standards\/nsqhs-standards\/partnering-consumers-standard."},{"key":"e_1_2_11_5_1","doi-asserted-by":"publisher","DOI":"10.1071\/AH22022"},{"key":"e_1_2_11_6_1","doi-asserted-by":"publisher","DOI":"10.35680\/2372-0247.1900"},{"key":"e_1_2_11_7_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.healthpol.2023.104946"},{"key":"e_1_2_11_8_1","unstructured":"International Association of Public Participation (IAP2) IAP2 Spectrum of Public Participation: IAP2 International; 2018 https:\/\/iap2.org.au\/resources\/spectrum\/."},{"key":"e_1_2_11_9_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.healthpol.2022.07.007"},{"key":"e_1_2_11_10_1","volume-title":"Strengthening Consumer Engagement \u2010 Summary Report","author":"Billing K. 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