Porter Kathryn M, Kraft Stephanie A, Speight Candace D, Duenas Devan M, Niyibizi Nyiramugisha K, Mitchell Andrea, O'Connor M Rebecca, Gregor Charles, Liljenquist Kendra, Shah Seema K, Wilfond Benjamin S, Dickert Neal W
Treuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institute, Seattle, Washington, USA.
Department of Pediatrics, University of Washington School of Medicine, Seattle, Washington, USA.
JAMIA Open. 2023 Feb 3;6(1):ooad004. doi: 10.1093/jamiaopen/ooad004. eCollection 2023 Apr.
Research recruitment through patient portals (ie, patient-facing, web-based clinical interfaces) has the potential to be effective, efficient, and inclusive, but best practices remain undefined. We sought to better understand how patients view this recruitment approach.
We conducted 6 focus groups in Atlanta, GA and Seattle, WA with members of patient advisory committees and the general public. Discussions addressed acceptability of patient portal recruitment and communication preferences. Focus groups were audio-recorded, transcribed, and analyzed using deductive and inductive codes. Iterative team discussions identified major themes.
Of 49 total participants, 20 were patient advisory committee members. Participants' mean age was 49 (range 18-74); 59% identified as non-Hispanic White and 31% as Black/African American. Participants were supportive of patient portal recruitment and confident that messages were private and legitimate. Participants identified transparency and patient control over whether and how to participate as essential features. Concerns included the frequency of research messages and the ability to distinguish between research and clinical messages. Participants also discussed how patient portal recruitment might affect diversity and inclusion.
Focus group participants generally found patient portal recruitment acceptable and perceived it as secure and trustworthy. Transparency, control, and attention to inclusiveness were identified as key considerations for developing best practices.
For institutions implementing patient portal recruitment programs, continued engagement with patient populations can help facilitate translation of these findings into best practices and ensure that implemented strategies accomplish intended goals.
通过患者门户网站（即面向患者的基于网络的临床界面）进行研究招募有可能做到有效、高效且具有包容性，但最佳实践仍未明确。我们试图更好地了解患者如何看待这种招募方式。
我们在佐治亚州亚特兰大市和华盛顿州西雅图市与患者咨询委员会成员和公众进行了6次焦点小组讨论。讨论内容涉及患者门户网站招募的可接受性和沟通偏好。焦点小组讨论进行了录音、转录，并使用演绎和归纳编码进行分析。团队反复讨论确定了主要主题。
在总共49名参与者中，20名是患者咨询委员会成员。参与者的平均年龄为49岁（范围为18 - 74岁）；59%的人认定为非西班牙裔白人，31%的人认定为黑人/非裔美国人。参与者支持通过患者门户网站进行招募，并相信信息是私密且合法的。参与者认为透明度以及患者对是否参与和如何参与的控制权是基本特征。担忧包括研究信息的频率以及区分研究信息和临床信息的能力。参与者还讨论了患者门户网站招募可能如何影响多样性和包容性。
焦点小组参与者总体上认为患者门户网站招募是可接受的，并认为其安全可靠。透明度、控制权和对包容性的关注被确定为制定最佳实践的关键考虑因素。
对于实施患者门户网站招募计划的机构而言，持续与患者群体互动有助于将这些研究结果转化为最佳实践，并确保所实施的策略实现预期目标。
