{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,8]],"date-time":"2026-09-08T23:15:55Z","timestamp":1788909355140,"version":"build-2803163510"},"reference-count":14,"publisher":"Wiley","issue":"1","license":[{"start":{"date-parts":[[2023,10,3]],"date-time":"2023-10-03T00:00:00Z","timestamp":1696291200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"DOI":"10.13039\/100000049","name":"National Institute on Aging","doi-asserted-by":"publisher","award":["5\u2010U54\u2010AG063546"],"award-info":[{"award-number":["5\u2010U54\u2010AG063546"]}],"id":[{"id":"10.13039\/100000049","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["agsjournals.onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["J American Geriatrics Society"],"published-print":{"date-parts":[[2024,1]]},"abstract":"Abstract<\/jats:title>\n \n Background<\/jats:title>\n The National Institute on Aging (NIA) Imbedded Pragmatic Alzheimer's Disease and Alzheimer's Related Dementia Clinical Trials (IMPACT) Collaboratory convened a Lived Experience Panel (LEP) to inform the development of research priorities and provide input on conducting embedded pragmatic clinical trials (ePCTs) of dementia care interventions. Given the importance of people with lived experience to dementia research, and the unique considerations of engaging people with dementia, we report on our process for the recruitment, selection, and initial convening of the IMPACT LEP.<\/jats:p>\n <\/jats:sec>\n \n Methods<\/jats:title>\n The IMPACT Engaging Partners Team, in partnership with the Alzheimer's Association, sought nominations of individuals with mild cognitive impairment or early\u2010stage dementia, care partners of other people living with dementia (PLWD), and proxy representatives for individuals with mid\u2010to\u2010late stage dementia. The 11\u2010member LEP was composed of individuals with diverse personal experiences in part due to their age, race, ethnicity, gender, sexual orientation, geography, disability, or type of dementia. In its first year, the LEP met with IMPACT's Patient and Caregiver Relevant Outcomes Core and Ethics and Regulation Core.<\/jats:p>\n <\/jats:sec>\n \n Results<\/jats:title>\n LEP members provided valuable insights and nuanced discussion of issues relevant to ePCTs in dementia care from a broad range of personal experience. Panelists identified key research priorities and provided insight on outcomes often studied by researchers. The LEP also informed investigators' approaches to waivers and modifications of written informed consent and evaluation of minimal risk. Summary reports of the LEP meetings with each Core are available on the IMPACT website. At the end of the first year, changes were made to the composition of the LEP, and opportunities were identified for expanding panelist engagement with IMPACT investigators, as were priorities and scope for future input.<\/jats:p>\n <\/jats:sec>\n \n Conclusions<\/jats:title>\n The IMPACT LEP provides a model for engaging PLWD and care partners in the research process as collaborators.<\/jats:p>\n <\/jats:sec>","DOI":"10.1111\/jgs.18621","type":"journal-article","created":{"date-parts":[[2023,10,4]],"date-time":"2023-10-04T04:32:55Z","timestamp":1696393975000},"page":"139-148","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":10,"title":["Development of a\n Lived Experience Panel<\/scp>\n to inform the design of embedded pragmatic trials of dementia care interventions"],"prefix":"10.1111","volume":"72","author":[{"given":"Antonia V.","family":"Bennett","sequence":"first","affiliation":[{"name":"Department of Health Policy and Management University of North Carolina Chapel Hill North Carolina USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kyra","family":"O'Brien","sequence":"additional","affiliation":[{"name":"Department of Neurology University of Pennsylvania Perelman School of Medicine Philadelphia Pennsylvania USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Monica","family":"Moreno","sequence":"additional","affiliation":[{"name":"Care and Support Alzheimer's Association Chicago Illinois USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kerry","family":"Lanigan","sequence":"additional","affiliation":[{"name":"Care and Support Alzheimer's Association Chicago Illinois USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Katie","family":"Maslow","sequence":"additional","affiliation":[{"name":"The Gerontological Society of America Washington DC USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Carolyn A.","family":"Malone","sequence":"additional","affiliation":[{"name":"Department of Health Services, Policy, and Practice Brown University, School of Public Health Providence Rhode Island USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5120-6058","authenticated-orcid":false,"given":"Laura C.","family":"Hanson","sequence":"additional","affiliation":[{"name":"Division of Geriatrics University of North Carolina School of Medicine Chapel Hill North Carolina USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sheryl","family":"Zimmerman","sequence":"additional","affiliation":[{"name":"Cecil G. Sheps Center for Health Services Research and Schools of Social Work and Public Health University of North Carolina at Chapel Hill Chapel Hill North Carolina USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jason","family":"Karlawish","sequence":"additional","affiliation":[{"name":"Penn Memory Center University of Pennsylvania Perelman School of Medicine Philadelphia Pennsylvania USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7536-5077","authenticated-orcid":false,"given":"Emily A.","family":"Largent","sequence":"additional","affiliation":[{"name":"Department of Medical Ethics and Health Policy University of Pennsylvania Perelman School of Medicine Philadelphia Pennsylvania USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mar\u00eda P.","family":"Aranda","sequence":"additional","affiliation":[{"name":"Suzanne Dworak\u2010Peck School of Social Work University of Southern California Los Angeles California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ladson","family":"Hinton","sequence":"additional","affiliation":[{"name":"Department of Psychiatry and Behavioral Sciences University of California Davis Davis California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Brenda P.","family":"Nicholson","sequence":"additional","affiliation":[{"name":"NIA IMPACT Engaging Partners Team, Emeritus Providence Rhode Island USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Louise","family":"Phillips","sequence":"additional","affiliation":[{"name":"NIA IMPACT Engaging Partners Team, Emeritus Providence Rhode Island USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sam","family":"Fazio","sequence":"additional","affiliation":[{"name":"Quality Care and Psychosocial Research Alzheimer's Association Chicago Illinois USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Gary","family":"Epstein\u2010Lubow","sequence":"additional","affiliation":[{"name":"Education Development Center Waltham Massachusetts USA"},{"name":"Department of Psychiatry and Human Behavior Alpert Medical School of Brown University Providence Rhode Island USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2023,10,3]]},"reference":[{"key":"e_1_2_10_2_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jagp.2019.10.015"},{"key":"e_1_2_10_3_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jagp.2019.10.014"},{"key":"e_1_2_10_4_1","doi-asserted-by":"publisher","DOI":"10.1111\/jgs.16630"},{"key":"e_1_2_10_5_1","doi-asserted-by":"publisher","DOI":"10.1111\/jgs.16621"},{"key":"e_1_2_10_6_1","doi-asserted-by":"publisher","DOI":"10.1002\/trc2.12366"},{"key":"e_1_2_10_7_1","unstructured":"Alzheimer's Association.Early Stage Advisory Group. Accessed December 1 2022.https:\/\/www.alz.org\/about\/leadership\/early-stage-advisory-group"},{"key":"e_1_2_10_8_1","unstructured":"NIA IMPACT Collaboratory.Lived Experience Panel. Accessed December 1 2022.https:\/\/impactcollaboratory.org\/lived-experience-panel\/"},{"key":"e_1_2_10_9_1","doi-asserted-by":"crossref","unstructured":"BennettAV HansonLC Epstein\u2010LubowG ZimmermanS.2021\u20102022 Lived Experience Panel: priorities for person and caregiver relevant outcomes in dementia intervention research. NIA IMPACT Collaboratory. Accessed December 1 2022.https:\/\/dcricollab.dcri.duke.edu\/sites\/impact\/Knowledge%20Repository\/2021\u201004\u201001\u2010LEP\u2010priorities.pdf","DOI":"10.58234\/82222234"},{"key":"e_1_2_10_10_1","doi-asserted-by":"crossref","unstructured":"LargentE KarlawishJ JoffeS Epstein\u2010LubowG.2021\u20102022 Lived Experience Panel: ethical challenges in conducting research using a waiver of informed consent with people living with dementia. NIA IMPACT Collaboratory. Accessed December 1 2022.https:\/\/dcricollab.dcri.duke.edu\/sites\/impact\/Knowledge%20Repository\/2021\u201004\u201001\u2010LEP\u2010ethical.pdf","DOI":"10.58234\/92591162"},{"key":"e_1_2_10_11_1","unstructured":"U.S. Centers for Disease Control and Prevention.Preferred terms for select population groups & communities. Inclusive Communication Principles. Accessed December 1 2022.https:\/\/www.cdc.gov\/healthcommunication\/Preferred_Terms.html"},{"key":"e_1_2_10_12_1","unstructured":"Public Health Center of Excellence on Dementia Caregiving.Stakeholder Engagement Advisory Groups. Accessed December 1 2022.https:\/\/bolddementiacaregiving.org\/seags\/"},{"key":"e_1_2_10_13_1","unstructured":"U.S. Department for Health and Human Services Office of the Assistant Secretary for Planning and Evaluation.National plan to address Alzheimer's disease. Accessed December 1 2022.https:\/\/aspe.hhs.gov\/collaborations\u2010committees\u2010advisory\u2010groups\/napa\/napa\u2010documents"},{"key":"e_1_2_10_14_1","unstructured":"Dementia Peer Coalition. Accessed December 1 2022.https:\/\/dementiapeercoalition.wordpress.com"},{"key":"e_1_2_10_15_1","unstructured":"National Council of Dementia Minds. Accessed December 1 2022.https:\/\/dementiaminds.org\/dementia-minds\/"}],"container-title":["Journal of the American Geriatrics Society"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/agsjournals.onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/jgs.18621","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,11,3]],"date-time":"2025-11-03T11:06:13Z","timestamp":1762167973000},"score":1,"resource":{"primary":{"URL":"https:\/\/agsjournals.onlinelibrary.wiley.com\/doi\/10.1111\/jgs.18621"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2023,10,3]]},"references-count":14,"journal-issue":{"issue":"1","published-print":{"date-parts":[[2024,1]]}},"alternative-id":["10.1111\/jgs.18621"],"URL":"https:\/\/doi.org\/10.1111\/jgs.18621","archive":["Portico"],"relation":{},"ISSN":["0002-8614","1532-5415"],"issn-type":[{"value":"0002-8614","type":"print"},{"value":"1532-5415","type":"electronic"}],"subject":[],"published":{"date-parts":[[2023,10,3]]},"assertion":[{"value":"2023-04-26","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2023-09-14","order":2,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2023-10-03","order":3,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}