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评估使用患者门户网站招募孕妇和新妈妈参与母婴健康研究的可接受性。

Assessing the acceptability of using patient portals to recruit pregnant women and new mothers for maternal-child health research.

作者信息

Halpin Sean N, Wright Rebecca, Gwaltney Angela, Frantz Annabelle, Peay Holly, Olsson Emily, Raspa Melissa, Gehtland Lisa, Andrews Sara M

机构信息

GenOmics and Translational Research Center, RTI International, Research Triangle Park, NC 27709-2194, United States.

Department of Genetics, University of Chapel Hill, Chapel Hill, NC 27514, United States.

出版信息

JAMIA Open. 2025 May 2;8(3):ooaf027. doi: 10.1093/jamiaopen/ooaf027. eCollection 2025 Jun.

Abstract

OBJECTIVE

Electronic patient portals (PP) allow for targeted and efficient research recruitment. We assessed pre- and postnatal women's recruitment methods preferences, focusing on PP.

MATERIALS AND METHODS

We conducted 4 in-person focus groups with new and expecting mothers. Participants reported demographics, health status, and comfort with technology including PP. We used descriptive statistics to characterize quantitative data and a quasi-deductive approach to analyze qualitative data.

RESULTS

Participants ( = 32) were an average age of 31.9 years, mostly White (65.6%), married (90.6%), and had a 4-year degree or higher (71.9%). Although they preferred PP for research recruitment over other methods (eg, in-person, physical mail), participants suggested potential barriers, including high message frequency, messages feeling like spam, and concerns about confidentiality. Participants suggested solutions, including enhancing autonomy through opt-in methods; integrating their healthcare provider's feedback; sending personal and relevant messages; and assuring their PP data are confidential.

DISCUSSION

PPs are a promising recruitment method for pre- and postnatal women including for maternal-child health studies. To ensure engagement with the method, researchers must respond to known patient concerns and incorporate their feedback into future efforts.

CONCLUSION

Although PP were generally viewed as an acceptable recruitment method, researchers should be mindful of barriers that may limit its reach and effectiveness.

摘要

目的

电子患者门户网站(PP)有助于进行有针对性且高效的研究招募。我们评估了产前和产后女性对招募方法的偏好,重点关注患者门户网站。

材料与方法

我们对初为人母和即将为人母的女性进行了4次面对面焦点小组访谈。参与者报告了人口统计学信息、健康状况以及对包括患者门户网站在内的技术的接受程度。我们使用描述性统计来描述定量数据,并采用准演绎方法来分析定性数据。

结果

参与者(n = 32)的平均年龄为31.9岁,大多为白人(65.6%),已婚(90.6%),拥有四年制或更高学历(71.9%)。尽管相较于其他方法(如面对面、纸质邮件),她们更倾向于通过患者门户网站进行研究招募,但参与者也提出了一些潜在障碍,包括信息推送频率过高、感觉信息像垃圾邮件以及对保密性的担忧。参与者还提出了一些解决方案,包括通过选择加入的方式增强自主性;整合医疗服务提供者的反馈;发送个性化且相关的信息;以及确保她们在患者门户网站上的数据是保密的。

讨论

患者门户网站是一种很有前景的招募产前和产后女性的方法,包括用于母婴健康研究。为确保该方法能吸引参与者,研究人员必须回应患者已知的担忧,并将她们的反馈纳入未来的工作中。

结论

尽管患者门户网站通常被视为一种可接受的招募方法,但研究人员应留意可能限制其覆盖面和有效性的障碍。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/394f/12047077/aab87691a330/ooaf027f1.jpg

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