{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,31]],"date-time":"2026-07-31T22:09:25Z","timestamp":1785535765824,"version":"3.56.0"},"reference-count":54,"publisher":"BMJ","issue":"5","content-domain":{"domain":["bmj.com"],"crossmark-restriction":true},"short-container-title":["BMJ Open"],"accepted":{"date-parts":[[2016,5,3]]},"published-print":{"date-parts":[[2016,5]]},"abstract":"<jats:sec>\n                    <jats:title>Introduction<\/jats:title>\n                    <jats:p>Patient involvement in healthcare has expanded from the clinical practice setting to include collaboration during the research process. There has been a growing international interest in patient and public involvement in setting research priorities to reduce the risk of discrepancy between what patients with cancer and their relatives experience as important unanswered questions and those which are actually researched. This study aims to challenge the conventional research process by inviting patients with life-threatening cancer (primary malignant brain tumours or acute leukaemia), relatives and patient organisations to join forces with clinical specialists and researchers to identify, discuss and prioritise supportive care and rehabilitation issues in future research.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods and analysis<\/jats:title>\n                    <jats:p>This is an exploratory qualitative study comprising two sets of three focus group interviews (FGIs): one set for primary malignant brain tumours and the other for acute leukaemia. Separate FGIs will be carried out with patients and relatives including representation from patient organisations and clinical specialists to identify important unanswered questions and research topics within each group. The FGIs will be video\/audio recorded, transcribed and thematically analysed. This study will contribute to a patient-centred research agenda that captures issues that patients, their relatives, clinical specialists and researchers consider important.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Ethics and dissemination<\/jats:title>\n                    <jats:p>The study is registered at the Danish Data Protection Agency (number: 2012-58-0004) and the Scientific Ethics Review Committee of the Capital Region of Denmark (number: H-15001485). Papers will be published describing the methods applied and the supportive care and rehabilitation issues that are identified as important for future research.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Trial registration number<\/jats:title>\n                    <jats:p>ISRCTN57131943; Pre-results.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1136\/bmjopen-2015-010615","type":"journal-article","created":{"date-parts":[[2016,5,24]],"date-time":"2016-05-24T23:49:21Z","timestamp":1464133761000},"page":"e010615","update-policy":"https:\/\/doi.org\/10.1136\/crossmarkpolicy","source":"Crossref","is-referenced-by-count":18,"title":["Patient involvement in research priorities (PIRE): a study protocol"],"prefix":"10.1136","volume":"6","clinical-trial-number":[{"clinical-trial-number":"isrctn57131943","registry":"10.18810\/isrctn"}],"author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-7972-4674","authenticated-orcid":false,"given":"Karin","family":"Piil","sequence":"first","affiliation":[{"name":"University Hospitals Center for Health Research (UCSF) and Center for Integrated Rehabilitation of Cancer Patients (CIRE), Copenhagen, Denmark"},{"name":"Department of Neurosurgery, University of Copenhagen, Rigshospitalet, Copenhagen, Denmark"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mary","family":"Jarden","sequence":"additional","affiliation":[{"name":"University Hospitals Center for Health Research (UCSF) and Center for Integrated Rehabilitation of Cancer Patients (CIRE), Copenhagen, Denmark"},{"name":"Faculty of Health and Medical Sciences, Department of Public Health, University of Copenhagen, Copenhagen, Denmark"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"239","published-online":{"date-parts":[[2016,5,24]]},"reference":[{"key":"2025121603345386000_6.5.e010615.1","doi-asserted-by":"publisher","DOI":"10.1136\/ard.2010.135129"},{"key":"2025121603345386000_6.5.e010615.2","doi-asserted-by":"publisher","DOI":"10.1192\/bjp.181.6.468"},{"key":"2025121603345386000_6.5.e010615.3","doi-asserted-by":"crossref","first-page":"103","DOI":"10.1108\/09526860510588133","article-title":"The impact of service user involvement in research","volume":"18","author":"Minogue","year":"2005","journal-title":"Int J Health Care Qual Assur Inc Leadersh Health Serv"},{"key":"2025121603345386000_6.5.e010615.4","doi-asserted-by":"publisher","DOI":"10.1111\/j.1369-7625.2012.00795.x"},{"key":"2025121603345386000_6.5.e010615.5","doi-asserted-by":"publisher","DOI":"10.1017\/S0266462311000481"},{"key":"2025121603345386000_6.5.e010615.6","doi-asserted-by":"publisher","DOI":"10.2522\/ptj.20080381"},{"key":"2025121603345386000_6.5.e010615.7","doi-asserted-by":"publisher","DOI":"10.1111\/j.1369-7625.2010.00607.x"},{"key":"2025121603345386000_6.5.e010615.8","doi-asserted-by":"publisher","DOI":"10.1002\/art.22091"},{"key":"2025121603345386000_6.5.e010615.9","doi-asserted-by":"publisher","DOI":"10.3109\/09638288.2012.694964"},{"key":"2025121603345386000_6.5.e010615.10","first-page":"233","article-title":"Involving people affected by cancer in research: a review of literature","volume":"17","author":"Hubbard","year":"2008","journal-title":"Eur J Cancer Care (Engl)"},{"key":"2025121603345386000_6.5.e010615.11","doi-asserted-by":"crossref","first-page":"29","DOI":"10.1080\/15265161.2014.900148","article-title":"From subjects to experts\u2014on the current transition of patient participation in research","volume":"14","author":"Johansson","year":"2014","journal-title":"Am J Bioeth"},{"key":"2025121603345386000_6.5.e010615.12","doi-asserted-by":"crossref","first-page":"387","DOI":"10.1007\/s40271-014-0065-0","article-title":"A systematic review of the impact of patient and public involvement on service users, researchers and communities","volume":"4","author":"Brett","year":"2014","journal-title":"Patient"},{"key":"2025121603345386000_6.5.e010615.13","unstructured":"Planetree. 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