Hernandez-Trujillo Vivian, Hart Mary, Ramos Rose Marie, Mitchell Lynda, Moya Alex Colon, Delarosa Dorothy, Lorenzi Margie, Gieminiani Marcela, Gardner Donna D
Allergy and Immunology Care Center of South Florida and Nicklaus Children's Hospital, Miami, FL, USA.
Allergy & Asthma Network, 10304 Eaton Place, Suite 100, Fairfax, VA, 22030, USA.
Res Involv Engagem. 2024 Nov 14;10(1):123. doi: 10.1186/s40900-024-00656-1.
Inequity in asthma and COVID-19 outcomes and research among Hispanic or Latino individuals is well established. Patient centered outcomes research (PCOR) may help address these inequalities. This report describes the development, implementation, and evaluation of a virtual conference series program titled "Unidos Hablemos de/United, Let's Talk About" intended to address the health literacy of the Hispanic/Latino community regarding asthma and COVID-19 and to encourage involvement in PCOR.
A Project Advisory Group consisting of Hispanic/Latino patient advisors who had been diagnosed with asthma and/or COVID-19, healthcare providers, researchers, a Hispanic faith-based leader, and a program evaluator designed and implemented a six-month series of monthly one-hour virtual sessions. Speakers and topics were selected that fit the Hispanic/Latino community and culture regarding asthma, COVID-19, and PCOR. Recruitment was through a multichannel digital promotion strategy, including social media. The virtual sessions were free on the ZOOM webinar platform and included interactive polling questions, live chat box, and Q&A. All audio and written materials from the sessions were translated into Spanish and English. Evaluations were used to rate the overall satisfaction with the program.
An average of 382 participants attended each of the six sessions, and participation generally increased with each session. The proportion of participants who considered themselves a Hispanic/Latino patient with asthma, caregiver, or clergy who served Hispanic/Latino communities increased by 100% from session one to session two. Preference for materials in Spanish ranged from 12 to 20% of participants over the six sessions. Among the sessions, 74-84% of polling question respondents indicated they would be willing to participate in research or a study, and 88% said they would be willing to serve as a patient partner/advocate. Program evaluations consistently indicated high satisfaction with the session content, session format, and feeling of inclusion.
Unidos Hablemos provided a voice to the Hispanic/Latino community that will inform future strategies to improve equity in asthma management, COVID-19, and PCOR. Patient speakers generated trust from the participants and "bridged the gap" between physicians, researchers, and the Hispanic/Latino community. Providing evidence-based, current information will empower patients and caregivers to make informed healthcare decisions.
哮喘和新冠疫情相关结果以及针对西班牙裔或拉丁裔人群的研究存在不平等现象，这一点已得到充分证实。以患者为中心的结果研究（PCOR）可能有助于解决这些不平等问题。本报告描述了一个名为“Unidos Hablemos de/United, Let's Talk About”的虚拟会议系列项目的开发、实施和评估情况，该项目旨在提高西班牙裔/拉丁裔社区对哮喘和新冠疫情的健康素养，并鼓励他们参与以患者为中心的结果研究。
一个项目咨询小组由被诊断患有哮喘和/或新冠的西班牙裔/拉丁裔患者顾问、医疗服务提供者、研究人员、一位西班牙裔宗教领袖和一名项目评估员组成，他们设计并实施了为期六个月的系列月度一小时虚拟会议。所选的演讲者和主题适合西班牙裔/拉丁裔社区以及关于哮喘、新冠疫情和以患者为中心的结果研究的文化背景。通过多渠道数字推广策略进行招募，包括社交媒体。虚拟会议在ZOOM网络研讨会平台上免费提供，包括互动投票问题、实时聊天框和问答环节。会议的所有音频和书面材料都被翻译成西班牙语和英语。通过评估来评定对该项目的总体满意度。
六场会议平均每场有382名参与者，且参与人数总体上逐场增加。从第一场会议到第二场会议，认为自己是患有哮喘的西班牙裔/拉丁裔患者、照顾者或服务于西班牙裔/拉丁裔社区的神职人员的参与者比例增加了100%。在六场会议中，12%至20%的参与者表示更喜欢西班牙语材料。在各场会议中，74%至84%的投票问题受访者表示愿意参与研究或一项调查，88%的受访者表示愿意担任患者合作伙伴/倡导者。项目评估一直表明对会议内容、会议形式和包容感高度满意。
“Unidos Hablemos”为西班牙裔/拉丁裔社区提供了发声渠道，这将为未来改善哮喘管理、新冠疫情和以患者为中心的结果研究方面的公平性策略提供参考。患者演讲者赢得了参与者的信任，并“弥合”了医生、研究人员与西班牙裔/拉丁裔社区之间的“差距”。提供基于证据的最新信息将使患者和照顾者能够做出明智的医疗保健决策。
