{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,10]],"date-time":"2026-08-10T14:50:52Z","timestamp":1786373452174,"version":"build-2736575974"},"reference-count":6,"publisher":"Ovid Technologies (Wolters Kluwer Health)","issue":"10","funder":[{"DOI":"10.13039\/100000062","name":"National Institute of Diabetes and Digestive and Kidney Diseases","doi-asserted-by":"crossref","award":["U01DK123786, U01DK123787, U01DK123812, U01DK123813, U01DK123814, U01DK123816, U01DK123817, U01DK123818, U01DK123821"],"award-info":[{"award-number":["U01DK123786, U01DK123787, U01DK123812, U01DK123813, U01DK123814, U01DK123816, U01DK123817, U01DK123818, U01DK123821"]}],"id":[{"id":"10.13039\/100000062","id-type":"DOI","asserted-by":"crossref"}]}],"content-domain":{"domain":["lww.com","ovid.com"],"crossmark-restriction":true},"short-container-title":["CJASN"],"published-print":{"date-parts":[[2025,10]]},"abstract":"<jats:p>\n                    The HOPE Consortium Trial to Reduce Pain and Opioid Use in Hemodialysis was a randomized, controlled trial funded by the National Institute of Diabetes and Digestive and Kidney Diseases. Patients on hemodialysis suffering from chronic pain were randomly assigned to receive usual care or a 12-week pain coping skills training program delivered remotely by trained coaches followed by 12 weeks of skills reinforcement\n                    <jats:italic toggle=\"yes\">via<\/jats:italic>\n                    interactive voice response. Patient advisors participated in all stages of the study, including study design and development of recruitment materials. During the trial, patient advisors met monthly as an Advisory Board. In addition, patient advisors participated in all Steering Committee meetings, including in-person meetings and biweekly remote meetings. Patient advisors were represented on all study committees, with particularly extensive involvement in the Recruitment and Retention Committee. Patient advisors made important contributions to study design and conduct. Their involvement was critical to the study's successful enrollment and retention of study participants. Patient advisors characterized their involvement positively. They attributed their satisfaction with the experience to their full integration into in all aspects of the study and their treatment as equal partners. Several patient advisors have subsequently taken on other research, patient advocacy, or leadership roles, facilitated in part through their participation in the HOPE Trial. This study details the ways patient advisors were enlisted and decided to participate; outlines their many contributions; describes their experience; and provides guidance on how researchers can successfully incorporate patient advisors into future studies.\n                  <\/jats:p>","DOI":"10.2215\/cjn.0000000866","type":"journal-article","created":{"date-parts":[[2025,8,18]],"date-time":"2025-08-18T17:00:15Z","timestamp":1755536415000},"page":"1461-1469","update-policy":"https:\/\/doi.org\/10.1097\/lww.0000000000001000","source":"Crossref","is-referenced-by-count":6,"title":["Patient Engagement in the Design and Conduct of the HOPE Trial"],"prefix":"10.2215","volume":"20","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-8218-1287","authenticated-orcid":false,"given":"David M.","family":"White","sequence":"first","affiliation":[{"name":"American Association of Kidney Patients, Tampa, Florida"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Paul L.","family":"Kimmel","sequence":"additional","affiliation":[{"name":"Department of Medicine, George Washington University, Washington, DC"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9735-7473","authenticated-orcid":false,"given":"Laura M.","family":"Dember","sequence":"additional","affiliation":[{"name":"Renal, Electrolyte and Hypertension Division, Department of Medicine, University of Pennsylvania Perelman School of Medicine, Philadelphia, Pennsylvania"},{"name":"Department of Biostatistics, Epidemiology and Informatics, University of Pennsylvania Perelman School of Medicine, Philadelphia, Pennsylvania"},{"name":"Center for Clinical Epidemiology and Biostatistics, University of Pennsylvania Perelman School of Medicine, Philadelphia, Pennsylvania"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0009-9212-7001","authenticated-orcid":false,"given":"Caroline","family":"Wilkie","sequence":"additional","affiliation":[{"name":"Punta Gorda, Florida"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Dawn P.","family":"Edwards","sequence":"additional","affiliation":[{"name":"New York, New York"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Joel","family":"Williams","sequence":"additional","affiliation":[{"name":"Minneapolis, Minnesota"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0004-4539-9024","authenticated-orcid":false,"given":"Leah","family":"Bernardo","sequence":"additional","affiliation":[{"name":"Center for Clinical Epidemiology and Biostatistics, University of Pennsylvania Perelman School of Medicine, Philadelphia, Pennsylvania"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nina","family":"Quintana","sequence":"additional","affiliation":[{"name":"Chicago, Illinois"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Martin D.","family":"Cheatle","sequence":"additional","affiliation":[{"name":"Department of Psychiatry, Department of Anesthesiology and Critical Care, University of Pennsylvania Perelman School of Medicine, Philadelphia, Pennsylvania"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6580-4080","authenticated-orcid":false,"given":"James P.","family":"Lash","sequence":"additional","affiliation":[{"name":"Department of Medicine, University of Illinois Hospital and Health Sciences Center, University of Illinois Chicago, Chicago, Illinois"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Michael J.","family":"Fischer","sequence":"additional","affiliation":[{"name":"Department of Medicine, University of Illinois Hospital and Health Sciences Center, University of Illinois Chicago, Chicago, Illinois"},{"name":"Medical Service, Jesse Brown VA Medical Center, Chicago, Illinois"},{"name":"Center of Innovation for Complex Chronic Healthcare, Edward Hines Jr., VA Hospital, Hines, Illinois"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5232-5083","authenticated-orcid":false,"given":"Rebecca","family":"Schmidt","sequence":"additional","affiliation":[{"name":"Division of Nephrology, Department of Medicine, West Virginia University School of Medicine, Morgantown, West Virginia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ardith","family":"Doorenbos","sequence":"additional","affiliation":[{"name":"Biobehavioral Nursing Science College of Nursing, University of Illinois Chicago, Chicago, Illinois"},{"name":"Hennepin Healthcare Research Institute, Minneapolis, Minnesota"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2557-5161","authenticated-orcid":false,"given":"Sarah","family":"Schrauben","sequence":"additional","affiliation":[{"name":"Renal, Electrolyte and Hypertension Division, Department of Medicine, University of Pennsylvania Perelman School of Medicine, Philadelphia, Pennsylvania"},{"name":"Department of Biostatistics, Epidemiology and Informatics, University of Pennsylvania Perelman School of Medicine, Philadelphia, Pennsylvania"},{"name":"Center for Clinical Epidemiology and Biostatistics, University of Pennsylvania Perelman School of Medicine, Philadelphia, Pennsylvania"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6421-361X","authenticated-orcid":false,"given":"Kirsten L.","family":"Johansen","sequence":"additional","affiliation":[{"name":"Hennepin Healthcare Research Institute, Minneapolis, Minnesota"},{"name":"Department of Medicine, University of Minnesota Medical School, Minneapolis, Minnesota"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"name":"for the HOPE Consortium, a member of the HEAL Initiative","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"276","published-online":{"date-parts":[[2025,8,18]]},"reference":[{"issue":"3","key":"B2-20260520","doi-asserted-by":"crossref","first-page":"307","DOI":"10.1111\/hex.12873","article-title":"Patient stakeholder engagement in research: a narrative review to describe foundational principles and best practice activities","volume":"22","author":"Harrison","year":"2019","journal-title":"Health Expect."},{"key":"B3-20260520","doi-asserted-by":"crossref","first-page":"107409","DOI":"10.1016\/j.cct.2023.107409","article-title":"The design and baseline characteristics for the HOPE consortium trial to reduce pain and opioid use in hemodialysis","volume":"136","author":"Dember","year":"2024","journal-title":"Contemp Clin Trials."},{"issue":"2","key":"B4-20260520","doi-asserted-by":"crossref","first-page":"197","DOI":"10.1001\/jamainternmed.2024.7140","article-title":"Pain coping skills training for patients receiving hemodialysis: the HOPE consortium randomized clinical trial","volume":"185","author":"Dember","year":"2025","journal-title":"JAMA Intern Med."},{"issue":"3","key":"B5-20260520","doi-asserted-by":"crossref","first-page":"e20164127","DOI":"10.1542\/peds.2016-4127","article-title":"Patient and researcher engagement in health research: a parent's perspective","volume":"140","author":"Amirav","year":"2017","journal-title":"Pediatrics."},{"issue":"2","key":"B6-20260520","doi-asserted-by":"crossref","first-page":"215","DOI":"10.2215\/CJN.05960521","article-title":"Patient and caregiver experiences and attitudes about their involvement in research in chronic kidney disease","volume":"17","author":"Gutman","year":"2022","journal-title":"Clin J Am Soc Nephrol."},{"issue":"5","key":"B7-20260520","doi-asserted-by":"crossref","first-page":"768","DOI":"10.2215\/CJN.14591218","article-title":"How community engagement is enhancing NIDDK research","volume":"14","author":"Kimmel","year":"2019","journal-title":"Clin J Am Soc Nephrol."}],"container-title":["Clinical Journal of the American Society of Nephrology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.ovid.com\/10.2215\/CJN.0000000866","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,8,10]],"date-time":"2026-08-10T13:45:57Z","timestamp":1786369557000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.ovid.com\/10.2215\/CJN.0000000866"}},"subtitle":["Addressing Chronic Pain in Hemodialysis Patients"],"short-title":[],"issued":{"date-parts":[[2025,8,18]]},"references-count":6,"journal-issue":{"issue":"10","published-print":{"date-parts":[[2025]]}},"URL":"https:\/\/doi.org\/10.2215\/cjn.0000000866","relation":{},"ISSN":["1555-9041","1555-905X"],"issn-type":[{"value":"1555-9041","type":"print"},{"value":"1555-905X","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,8,18]]}}}