Ter Meer Janna, Kamyar Royan, Orlovsky Christina, Hung Ting-Yang, Benrey Tamara, Dinh-Luong Ethan, Quer Giorgio, Moore Vogel Julia
Scripps Research Translational Institute, La Jolla, CA 92037, United States.
Owaves Inc, Encinitas, CA 92024, United States.
J Am Med Inform Assoc. 2024 Dec 1;31(12):2908-2915. doi: 10.1093/jamia/ocae185.
Summaries of health research can be a complementary way to return value to participants. We assess how research participants engage with summaries via email communication and how this can be improved.
We look at correlations between demographic subgroups and engagement in a longitudinal dataset of 305 626 participants (77% are classified as underrepresented in biomedical research) from the All of Us Research Program. We compare this against engagement with other program communications and use impact evaluations (N = 421 510) to measure the effect of tailoring communication by (1) eliciting content preferences, (2) Spanish focused content, (3) informational videos, and (4) article content in the email subject line.
Between March 2020 and October 2021, research summaries reached 67% of enrolled participants, outperforming other program communication (60%) and return of results (31%), which have a high uptake rate but have been extended to a subset of eligible participants. While all demographic subgroups engage with research summaries, participants with higher income, educational attainment, White, and older than 45 years open and click content most often. Surfacing article content in the email subject line and Spanish focused content had negative effects on engagement. Video and social media content and eliciting preferences led to a small directional increase in clicks.
Further individualization of tailoring efforts may be needed to drive larger engagement effects (eg, delivering multiple articles in line with stated preferences, expanding preference options). Our findings are likely a conservative representation of engagement effects, given the coarseness of our click rate measure.
Health research summaries show promise as a way to return value to research participants, especially if individual-level results cannot be returned. Personalization of communication requires testing to determine whether efforts are having the expected effect.
健康研究总结可以作为一种向参与者回馈价值的补充方式。我们评估研究参与者如何通过电子邮件交流参与总结内容，以及如何对此加以改进。
我们研究了来自“我们所有人研究计划”的305626名参与者（77%被归类为在生物医学研究中代表性不足）的纵向数据集中人口亚组与参与度之间的相关性。我们将此与其他项目交流的参与度进行比较，并使用影响评估（N = 421510）来衡量通过以下方式定制交流的效果：（1）引出内容偏好；（2）以西班牙语为重点的内容；（3）信息视频；（4）电子邮件主题行中的文章内容。
在2020年3月至2021年10月期间，研究总结覆盖了67%的登记参与者，超过了其他项目交流（60%）和结果反馈（31%），后两者虽然接受率很高，但仅面向部分符合条件的参与者。虽然所有人口亚组都参与研究总结，但收入较高、受教育程度较高、白人以及45岁以上的参与者打开和点击内容的频率最高。在电子邮件主题行中突出文章内容以及以西班牙语为重点的内容对参与度有负面影响。视频和社交媒体内容以及引出偏好导致点击量有小幅定向增加。
可能需要进一步对定制工作进行个性化，以推动更大的参与效果（例如，根据所述偏好提供多篇文章，扩大偏好选项）。鉴于我们点击率测量方法的粗略性，我们的发现可能是对参与效果的保守呈现。
健康研究总结有望成为向研究参与者回馈价值的一种方式，特别是在无法反馈个体层面结果的情况下。交流的个性化需要进行测试，以确定这些努力是否产生了预期效果。
