Through the lens of Good Participatory Practice: Findings and lessons learned from the healthcare worker subcommittee of the COVID-19 Healthcare Worker Exposure Response and Outcomes Registry
Participant representation, including the Good Participatory Practice guidelines, in the design and execution of clinical research can profoundly affect research structure and process. Early in the COVID-19 pandemic, an online registry called the Healthcare Worker Exposure Response and Outcomes (HER...
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Cambridge University Press
2025-01-01
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| Series: | Journal of Clinical and Translational Science |
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| Online Access: | https://www.cambridge.org/core/product/identifier/S205986612400668X/type/journal_article |
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| author | Mei Lin Chen-Lim Jayne F. Koellhoffer Kisha Batey Turner Martha Summerlin Anoop George Eileen Handberg Daryl Lawrence Syed Hasan Naqvi Emily O’Brien Lauren Cohen Patty McAdams Laura Webb Renee Leverty |
| author_facet | Mei Lin Chen-Lim Jayne F. Koellhoffer Kisha Batey Turner Martha Summerlin Anoop George Eileen Handberg Daryl Lawrence Syed Hasan Naqvi Emily O’Brien Lauren Cohen Patty McAdams Laura Webb Renee Leverty |
| author_sort | Mei Lin Chen-Lim |
| collection | DOAJ |
| description | Participant representation, including the Good Participatory Practice guidelines, in the design and execution of clinical research can profoundly affect research structure and process. Early in the COVID-19 pandemic, an online registry called the Healthcare Worker Exposure Response and Outcomes (HERO) Registry, was launched to capture the experiences of healthcare workers (HCWs) on the pandemic frontlines. It evolved into a program that distributed COVID-19-related information and connected participants with COVID-19-related research opportunities. Furthermore, a subcommittee of HCWs was created to inform the COVID-19-related clinical research, engagement, and communication efforts. This paper, coauthored by the HERO HCW subcommittee, describes how it was formed, the impact of community participation on the HERO Registry and Research Program, reflections on lessons learned, and implications for future research. Engagement of the HCW Subcommittee resulted in representing their lived experience and ensured that their perspectives as HCWs were incorporated into the HERO Research. The strategies not only supported recruitment and retention efforts but also influenced the HERO research team in framing research questions and data collection pertinent to the participant community. This experience demonstrated the importance of having participants’ input as expert advisors to an investigative team in their research efforts during a global health emergency. |
| format | Article |
| id | doaj-art-a0e9e62ec4e04dd2a95841a376e2fe97 |
| institution | Kabale University |
| issn | 2059-8661 |
| language | English |
| publishDate | 2025-01-01 |
| publisher | Cambridge University Press |
| record_format | Article |
| series | Journal of Clinical and Translational Science |
| spelling | doaj-art-a0e9e62ec4e04dd2a95841a376e2fe972025-01-16T21:50:29ZengCambridge University PressJournal of Clinical and Translational Science2059-86612025-01-01910.1017/cts.2024.668Through the lens of Good Participatory Practice: Findings and lessons learned from the healthcare worker subcommittee of the COVID-19 Healthcare Worker Exposure Response and Outcomes RegistryMei Lin Chen-Lim0Jayne F. Koellhoffer1Kisha Batey Turner2Martha Summerlin3Anoop George4Eileen Handberg5Daryl Lawrence6Syed Hasan Naqvi7Emily O’Brien8Lauren Cohen9Patty McAdams10Laura Webb11Renee Leverty12https://orcid.org/0000-0002-5883-8290College of Nursing, Thomas Jefferson University, Philadelphia, PA, USADoylestown Hospital, Doylestown, PA, USAVanderbilt University Medical Center, Nashville, TN, USADuke Clinical Research Institute, Durham, NC, USATemple University Health System, Philadelphia, PA, USAUniversity of Florida, Gainesville, FL, USAVanderbilt University Medical Center, Nashville, TN, USAUniversity of Missouri, Columbia, MO, USADuke Clinical Research Institute, Durham, NC, USADuke Clinical Research Institute, Durham, NC, USADuke Clinical Research Institute, Durham, NC, USADuke Clinical Research Institute, Durham, NC, USADuke Clinical Research Institute, Durham, NC, USAParticipant representation, including the Good Participatory Practice guidelines, in the design and execution of clinical research can profoundly affect research structure and process. Early in the COVID-19 pandemic, an online registry called the Healthcare Worker Exposure Response and Outcomes (HERO) Registry, was launched to capture the experiences of healthcare workers (HCWs) on the pandemic frontlines. It evolved into a program that distributed COVID-19-related information and connected participants with COVID-19-related research opportunities. Furthermore, a subcommittee of HCWs was created to inform the COVID-19-related clinical research, engagement, and communication efforts. This paper, coauthored by the HERO HCW subcommittee, describes how it was formed, the impact of community participation on the HERO Registry and Research Program, reflections on lessons learned, and implications for future research. Engagement of the HCW Subcommittee resulted in representing their lived experience and ensured that their perspectives as HCWs were incorporated into the HERO Research. The strategies not only supported recruitment and retention efforts but also influenced the HERO research team in framing research questions and data collection pertinent to the participant community. This experience demonstrated the importance of having participants’ input as expert advisors to an investigative team in their research efforts during a global health emergency.https://www.cambridge.org/core/product/identifier/S205986612400668X/type/journal_articleBidirectional engagementclinical researchparticipant advisory committeediversityequityinclusionGood Participatory Practice |
| spellingShingle | Mei Lin Chen-Lim Jayne F. Koellhoffer Kisha Batey Turner Martha Summerlin Anoop George Eileen Handberg Daryl Lawrence Syed Hasan Naqvi Emily O’Brien Lauren Cohen Patty McAdams Laura Webb Renee Leverty Through the lens of Good Participatory Practice: Findings and lessons learned from the healthcare worker subcommittee of the COVID-19 Healthcare Worker Exposure Response and Outcomes Registry Journal of Clinical and Translational Science Bidirectional engagement clinical research participant advisory committee diversity equity inclusion Good Participatory Practice |
| title | Through the lens of Good Participatory Practice: Findings and lessons learned from the healthcare worker subcommittee of the COVID-19 Healthcare Worker Exposure Response and Outcomes Registry |
| title_full | Through the lens of Good Participatory Practice: Findings and lessons learned from the healthcare worker subcommittee of the COVID-19 Healthcare Worker Exposure Response and Outcomes Registry |
| title_fullStr | Through the lens of Good Participatory Practice: Findings and lessons learned from the healthcare worker subcommittee of the COVID-19 Healthcare Worker Exposure Response and Outcomes Registry |
| title_full_unstemmed | Through the lens of Good Participatory Practice: Findings and lessons learned from the healthcare worker subcommittee of the COVID-19 Healthcare Worker Exposure Response and Outcomes Registry |
| title_short | Through the lens of Good Participatory Practice: Findings and lessons learned from the healthcare worker subcommittee of the COVID-19 Healthcare Worker Exposure Response and Outcomes Registry |
| title_sort | through the lens of good participatory practice findings and lessons learned from the healthcare worker subcommittee of the covid 19 healthcare worker exposure response and outcomes registry |
| topic | Bidirectional engagement clinical research participant advisory committee diversity equity inclusion Good Participatory Practice |
| url | https://www.cambridge.org/core/product/identifier/S205986612400668X/type/journal_article |
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