Madison Suzanne, Colon-Moya Alex D, Morales-Cosme Wilfredo, Lorenzi Margie, Diaz Aracelis, Hickson Bridget, Monteiro Kathy, Muniz Ruiz Alexander, Perez Addie, Redondo Richard, Reid Dennis, Robles Janet, Santiago Marsha, Thompson Opal, Wade Joyce, White Mary, Castillo Graciela, Valenzuela Cristian
Patient Partner/Advisor, 6337 Alderwood Circle, #B, St. Paul, MN, 55129, USA.
Patient Partner/Advisor, South Jordan, UT, USA.
Res Involv Engagem. 2022 Aug 24;8(1):42. doi: 10.1186/s40900-022-00377-3.
Despite a movement toward the inclusion of patient partners or advisors as part of the research team in all funded studies, few publications have discussed patient engagement from the patient partners' perspective.
Qualitative interviews were conducted by independent qualitative researchers to collect and summarize the experiences and perspectives of the 16 Patient Partners (PPs) on the study team for PeRson EmPowered Asthma RElief (PREPARE), a large, pragmatic study of 1200 African American/Black (AA/B) and Hispanic/Latinx (H/L) adults with asthma. This study was funded by the Patient-Centered Outcomes Research Institute.
This paper, authored by the PPs themselves, summarizes qualitative interview findings. The journey of the PREPARE PPs began with a desire to learn more about asthma and advocate for other individuals with asthma. Many challenges, including intimidation and lack of trust, were overcome as the research team prioritized building a comfortable environment in which PPs' lived experiences, opinions, and cultural beliefs are valued, and in which PP voices are centered and respected. Over time, the PPs gained confidence in expressing ideas and feedback, and in taking ownership of their role as valued members of the research team. The PP experience has had tremendous personal and professional impact on the PPs themselves, while also modeling a change in the way researchers and PPs relate to and partner with each other.
The partnership between PPs and researchers in the PREPARE study has elevated the PP role from external advisors to integral and empowered members of a collective research team, and the partnership developed and evolved over time.
尽管在所有资助研究中都有将患者合作伙伴或顾问纳入研究团队的趋势，但很少有出版物从患者合作伙伴的角度讨论患者参与情况。
由独立的定性研究人员进行定性访谈，以收集和总结16名患者合作伙伴（PPs）在“以患者为中心的哮喘缓解研究”（PREPARE）研究团队中的经历和观点。PREPARE是一项针对1200名患有哮喘的非裔美国人/黑人（AA/B）和西班牙裔/拉丁裔（H/L）成年人的大型实用性研究。该研究由患者为中心的结果研究所资助。
本文由患者合作伙伴自己撰写，总结了定性访谈结果。PREPARE患者合作伙伴的历程始于他们希望更多地了解哮喘并为其他哮喘患者发声的愿望。随着研究团队优先营造一个舒适的环境，在这个环境中患者合作伙伴的生活经历、意见和文化信仰受到重视，他们的声音得到关注和尊重，许多挑战，包括恐吓和缺乏信任等问题都得以克服。随着时间的推移，患者合作伙伴在表达想法和反馈以及作为研究团队中有价值的成员发挥自身作用方面获得了信心。患者合作伙伴的经历对他们自身产生了巨大的个人和职业影响，同时也为研究人员和患者合作伙伴之间相互关系和合作方式的改变树立了典范。
在PREPARE研究中，患者合作伙伴与研究人员之间的合作将患者合作伙伴的角色从外部顾问提升为集体研究团队中不可或缺且有影响力的成员，并且这种合作随着时间的推移不断发展和演变。
