Using patient portals for large-scale recruitment of individuals underrepresented in biomedical research: an evaluation of engagement patterns throughout the patient portal recruitment process at a single site within the All of Us Research Program.

IF 4.7 2区 医学 Q1 COMPUTER SCIENCE, INFORMATION SYSTEMS Journal of the American Medical Informatics Association Pub Date : 2024-10-01 DOI:10.1093/jamia/ocae135
Maura Beaton, Xinzhuo Jiang, Elise Minto, Chun Yee Lau, Lennon Turner, George Hripcsak, Kanchan Chaudhari, Karthik Natarajan
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Abstract

Objective: To evaluate the use of patient portal messaging to recruit individuals historically underrepresented in biomedical research (UBR) to the All of Us Research Program (AoURP) at a single recruitment site.

Materials and methods: Patient portal-based recruitment was implemented at Columbia University Irving Medical Center. Patient engagement was assessed using patient's electronic health record (EHR) at four recruitment stages: Consenting to be contacted, opening messages, responding to messages, and showing interest in participating. Demographic and socioeconomic data were also collected from patient's EHR and univariate logistic regression analyses were conducted to assess patient engagement.

Results: Between October 2022 and November 2023, a total of 59 592 patients received patient portal messages inviting them to join the AoURP. Among them, 24 445 (41.0%) opened the message, 8983 (15.1%) responded, and 3765 (6.3%) showed interest in joining the program. Though we were unable to link enrollment data with EHR data, we estimate about 2% of patients contacted ultimately enrolled in the AoURP. Patients from underrepresented race and ethnicity communities had lower odds of consenting to be contacted and opening messages, but higher odds of showing interest after responding.

Discussion: Patient portal messaging provided both patients and recruitment staff with a more efficient approach to outreach, but patterns of engagement varied across UBR groups.

Conclusion: Patient portal-based recruitment enables researchers to contact a substantial number of participants from diverse communities. However, more effort is needed to improve engagement from underrepresented racial and ethnic groups at the early stages of the recruitment process.

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利用患者门户网站大规模招募在生物医学研究中代表性不足的人员:对 "我们所有人 "研究计划中单一研究机构的患者门户网站招募过程中的参与模式进行评估。
目的评估使用患者门户网站信息在单一招募地点招募历来在生物医学研究领域代表性不足的人员(UBR)参加 "我们所有人研究计划"(AoURP)的情况:哥伦比亚大学欧文医学中心实施了基于患者门户网站的招募。在四个招募阶段,使用患者的电子健康记录(EHR)对患者的参与度进行评估:同意联系、打开信息、回复信息以及表示有兴趣参与。此外,还从患者的电子病历中收集了人口统计学和社会经济学数据,并进行了单变量逻辑回归分析,以评估患者的参与度:2022年10月至2023年11月期间,共有59 592名患者收到了患者门户网站邀请他们加入AoURP的信息。其中,24 445 人(41.0%)打开了信息,8983 人(15.1%)做出了回复,3765 人(6.3%)表示有兴趣加入该计划。虽然我们无法将注册数据与电子病历数据联系起来,但我们估计约有 2% 联系过的患者最终加入了 AoURP。来自代表性不足的种族和民族社区的患者同意联系和打开信息的几率较低,但回复后表示有兴趣的几率较高:讨论:患者门户网站的信息发布为患者和招募人员提供了更有效的外联方法,但不同 UBR 群体的参与模式各不相同:结论:基于患者门户网站的招募使研究人员能够联系到来自不同社区的大量参与者。然而,在招募过程的早期阶段,还需要做出更多努力来提高代表性不足的种族和民族群体的参与度。
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来源期刊
Journal of the American Medical Informatics Association
Journal of the American Medical Informatics Association 医学-计算机:跨学科应用
CiteScore
14.50
自引率
7.80%
发文量
230
审稿时长
3-8 weeks
期刊介绍: JAMIA is AMIA''s premier peer-reviewed journal for biomedical and health informatics. Covering the full spectrum of activities in the field, JAMIA includes informatics articles in the areas of clinical care, clinical research, translational science, implementation science, imaging, education, consumer health, public health, and policy. JAMIA''s articles describe innovative informatics research and systems that help to advance biomedical science and to promote health. Case reports, perspectives and reviews also help readers stay connected with the most important informatics developments in implementation, policy and education.
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