{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,30]],"date-time":"2026-08-30T02:49:02Z","timestamp":1788058142302,"version":"build-2784847793"},"reference-count":15,"publisher":"Wiley","issue":"6","license":[{"start":{"date-parts":[[2025,12,2]],"date-time":"2025-12-02T00:00:00Z","timestamp":1764633600000},"content-version":"vor","delay-in-days":1,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2025,12,1]],"date-time":"2025-12-01T00:00:00Z","timestamp":1764547200000},"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":[[2025,12]]},"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>In 2021, the National Institutes of Health launched a multi\u2010centre observational study on long Covid: Researching COVID to Enhance Recovery (RECOVER). Six Boston academic medical centres joined community partners to become the Boston COVID Recovery Cohort (BCRC), a consortium of RECOVER sites. Our consortium developed a community engagement model, and this manuscript shares lessons and recommendations.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Design and Participants<\/jats:title>\n                    <jats:p>The BCRC Community Partnership Table, which included community partners, senior equity leaders, academic researchers and health system collaborators, co\u2010developed a charter to advance research, community education, clinical care, social support and institutional and policy change goals. BCRC engaged patients, providers, caregivers and legislators via multiple communication channels.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Findings<\/jats:title>\n                    <jats:p>The BCRC Community Partnership Table faced several challenges: working within a novel, evolving pandemic; structural barriers to successful community engagement; perspectives on trustworthiness of research; and working across multiple organisations with distinct structures, resources and goals. There were also successes: leaders who were invested in community engagement; a focus on inclusive network building; co\u2010production; flexible communication channels; a shift to centring communities and patients; and connection with the legislature to support broader policy impacts.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Discussion<\/jats:title>\n                    <jats:p>To inform future community engagement models, we recommend the following: (1) healthcare research funders should build in time and resources for community engagement; (2) study consortia should include community engagement specialists in decision\u2010making positions from the outset; and (3) community members should have prominent roles leading research engagement efforts.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>Engagement models can enhance the equity impact of long Covid research. Reflections and recommendations in this paper can inform future efforts.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Patient or Public Contribution<\/jats:title>\n                    <jats:p>The project included community leaders, community\u2010based organisations, people with long Covid, and those caring for people with long Covid. Community leaders, community\u2010based organisations and people with long Covid are included in every aspect of the network. They inform decision\u2010making, play a key role in network leadership and are also all represented within the authorship team.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/hex.70493","type":"journal-article","created":{"date-parts":[[2025,12,3]],"date-time":"2025-12-03T05:51:37Z","timestamp":1764741097000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":1,"title":["Community Engagement in Long Covid: Insights From the Boston COVID Recovery Cohort"],"prefix":"10.1111","volume":"28","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-9760-7196","authenticated-orcid":false,"given":"Marisha E.","family":"Palm","sequence":"first","affiliation":[{"name":"Tufts Clinical and Translational Science Institute (CTSI) Tufts University Boston Massachusetts USA"},{"name":"Institute for Clinical Research and Health Policy Studies Tufts Medical Center Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Callie A.","family":"Gu","sequence":"additional","affiliation":[{"name":"Department of Medicine Brigham and Women's Hospital Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ingrid V.","family":"Bassett","sequence":"additional","affiliation":[{"name":"Division of Infectious Diseases, Massachusetts General Hospital Boston Massachusetts USA"},{"name":"Harvard Medical School Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bruce D.","family":"Levy","sequence":"additional","affiliation":[{"name":"Division of Infectious Diseases, Massachusetts General Hospital Boston Massachusetts USA"},{"name":"Harvard Medical School Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Li Qing","family":"Chen","sequence":"additional","affiliation":[{"name":"Harvard Medical School Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Janice","family":"John","sequence":"additional","affiliation":[{"name":"Cambridge Health Alliance Cambridge Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Cheralyn","family":"Johnson","sequence":"additional","affiliation":[{"name":"North Shore Community Health Salem Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jacqui","family":"Lindsay","sequence":"additional","affiliation":[{"name":"Innovation by Design New York New York USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rebecca","family":"Lobb","sequence":"additional","affiliation":[{"name":"Boston University Clinical Translational Science Institute Community Engagement Program Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Netia","family":"McCray","sequence":"additional","affiliation":[{"name":"Mbadkika Cambridge Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bisola","family":"Ojikutu","sequence":"additional","affiliation":[{"name":"Division of Infectious Diseases Brigham and Women's Hospital Boston Massachusetts USA"},{"name":"Division of Global Health Equity Brigham and Women's Hospital Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Linda Sprague","family":"Martinez","sequence":"additional","affiliation":[{"name":"The Health Disparities Institute UConn Health Hartford Connecticut USA"},{"name":"Departments of Medicine and Public Health Sciences UConn Health Farmington Connecticut USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jacqueline","family":"Rodriguez\u2010Louis","sequence":"additional","affiliation":[{"name":"Division of Pulmonary and Critical Care Medicine Brigham and Women's Hospital Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Alice","family":"Rushforth","sequence":"additional","affiliation":[{"name":"Tufts Clinical and Translational Science Institute (CTSI) Tufts University Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Robert","family":"Torres","sequence":"additional","affiliation":[{"name":"Beth Israel Lahey Health Cambridge Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Danielle L.","family":"Zionts","sequence":"additional","affiliation":[{"name":"Medical Practice Evaluation Center, Massachusetts General Hospital Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Cheryl R.","family":"Clark","sequence":"additional","affiliation":[{"name":"Harvard Medical School Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2025,12,2]]},"reference":[{"key":"e_1_2_11_2_1","unstructured":"A Long COVID Definition: A Chronic Systemic Disease State With Profound Consequences. 2024 https:\/\/nap.nationalacademies.org\/catalog\/27768\/a-long-covid-definition-a-chronic-systemic-disease-state-with."},{"key":"e_1_2_11_3_1","doi-asserted-by":"publisher","DOI":"10.1056\/NEJMsb2408466"},{"key":"e_1_2_11_4_1","unstructured":"Researching COVID to Enhance Recovery https:\/\/recovercovid.org\/."},{"key":"e_1_2_11_5_1","doi-asserted-by":"publisher","DOI":"10.7326\/M20-6306"},{"key":"e_1_2_11_6_1","unstructured":"Boston Researching COVID to Enhance Recovery https:\/\/www.bostonrecover.org\/."},{"key":"e_1_2_11_7_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12889-024-19567-7"},{"key":"e_1_2_11_8_1","unstructured":"The Othering & Belonging Institute accessed March 10 2025 https:\/\/belonging.berkeley.edu\/."},{"key":"e_1_2_11_9_1","unstructured":"J. A.Powell accessed March 10 2025 https:\/\/belonging.berkeley.edu\/john-powell."},{"key":"e_1_2_11_10_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ajmo.2024.100071"},{"key":"e_1_2_11_11_1","doi-asserted-by":"publisher","DOI":"10.1007\/s11606-020-05868-1"},{"key":"e_1_2_11_12_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.n434"},{"key":"e_1_2_11_13_1","unstructured":"M.DombandM.Decker An Act to Improve Access to Health Care for People With Long COVID https:\/\/malegislature.gov\/Bills\/194\/HD3839."},{"key":"e_1_2_11_14_1","unstructured":"M.DombandM.Decker An Act Measuring the Impact of Long COVID in the Commonwealth https:\/\/malegislature.gov\/Bills\/194\/HD3840."},{"key":"e_1_2_11_15_1","first-page":"26479","volume-title":"Improving Representation in Clinical Trials and Research: Building Research Equity for Women and Underrepresented Groups","author":"Committee on Improving the Representation of Women and Underrepresented Minorities in Clinical Trials and Research, Committee on Women in Science, Engineering, and Medicine, Policy and Global Affairs, National Academies of Sciences, Engineering, and Medicine","year":"2022"},{"key":"e_1_2_11_16_1","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pmed.1001918"}],"container-title":["Health Expectations"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/hex.70493","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1111\/hex.70493","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/hex.70493","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,8,24]],"date-time":"2026-08-24T13:47:44Z","timestamp":1787579264000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/hex.70493"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,12]]},"references-count":15,"journal-issue":{"issue":"6","published-print":{"date-parts":[[2025,12]]}},"alternative-id":["10.1111\/hex.70493"],"URL":"https:\/\/doi.org\/10.1111\/hex.70493","archive":["Portico"],"relation":{},"ISSN":["1369-6513","1369-7625"],"issn-type":[{"value":"1369-6513","type":"print"},{"value":"1369-7625","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,12]]},"assertion":[{"value":"2025-04-11","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2025-10-16","order":2,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2025-12-02","order":3,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}],"article-number":"e70493"}}