Carr Rosalyn Leigh, Chan Vita, West Nicholas C, Görges Matthias
The School of Biomedical Engineering, University of British Columbia, 6088 University Boulevard, Vancouver, BC, V6T 1Z3, Canada, 1 6048227810.
Research Institute, BC Children's Hospital, Vancouver, BC, Canada.
Interact J Med Res. 2025 Aug 18;14:e65606. doi: 10.2196/65606.
The increasing prevalence of smart devices has created vast amounts of untapped data, presenting new opportunities for data sharing across various fields, such as environmental sciences, health management, and astrophysics. While a significant portion of the public is willing to donate personal data, we need to better understand how to obtain information about which data assets a person may hold and the risks, benefits, and potential uses of this data exchange mechanism. Developing a trusted data-sharing platform may increase participants' willingness to donate data and researchers' ability to return personalized results from research findings.
This study aimed to develop a preliminary list of core requirements, which can be used to develop design recommendations for standardizing the return of individual research results to study participants across research disciplines.
We conducted a narrative literature review of existing platforms used to return research results to study participants. The search strategy included English-language articles published between May 2013 and May 2023. Concepts related to returning, disseminating, and sharing research results were searched for in (1) published research reports on Web of Science and MEDLINE, (2) gray literature, and (3) the bibliographies of included articles. Screening and data extraction were performed by 2 independent reviewers using Covidence. Inclusion criteria required that the study (1) included human participants, (2) returned information based on data collected from or by participants, (3) was published in English, and (4) included a description of a results-sharing system. Articles that met all 4 inclusion criteria were included in the review; articles that met the first 3 were also presented as supplementary articles. Results and requirements were synthesized thematically.
Overall, 6608 abstracts were screened, and 266 articles underwent full-text review to identify 8 articles describing the development and evaluation of 7 different return of results systems. In total, 7 of the 8 articles reported the use of multimodal dissemination methods, including a combination of physical documents, emails, phone calls, and digital platforms to support text and graphical data representations. One article outlined accessibility features to serve the specific participant population. None of the articles described in detail how results were or were not anonymized. A total of 4 studies relied on an expert or clinician to share results on behalf of the research team. Additional educational or contextual materials were included alongside results in four studies, including specific materials designed for follow-up with experts and clinicians. Participants were not hesitant to receive unfavorable results and instead aimed to incorporate such information into their lives via lifestyle changes, clinical intervention, or seeking community.
Return of results systems should support multiple modes of dissemination for text-based results. Additional educational and lay-language materials are helpful for participants to understand and use information gained from receiving results.
智能设备的日益普及产生了大量未开发的数据，为环境科学、健康管理和天体物理学等各个领域的数据共享带来了新机遇。虽然很大一部分公众愿意捐赠个人数据，但我们需要更好地了解如何获取有关个人可能拥有的数据资产的信息，以及这种数据交换机制的风险、益处和潜在用途。开发一个可信的数据共享平台可能会提高参与者捐赠数据的意愿，以及研究人员根据研究结果返回个性化结果的能力。
本研究旨在制定一份核心要求的初步清单，可用于制定设计建议，以规范跨研究学科向研究参与者返回个人研究结果的行为。
我们对用于向研究参与者返回研究结果的现有平台进行了叙述性文献综述。检索策略包括2013年5月至2023年5月发表的英文文章。在以下方面搜索与返回、传播和共享研究结果相关的概念：（1）科学网和医学期刊数据库上发表的研究报告，（2）灰色文献，以及（3）纳入文章的参考文献。由2名独立评审员使用Covidence进行筛选和数据提取。纳入标准要求研究（1）包括人类参与者，（2）基于从参与者收集或由参与者提供的数据返回信息，（3）以英文发表，（4）包括对结果共享系统的描述。符合所有4项纳入标准的文章纳入综述；符合前3项标准的文章也作为补充文章呈现。结果和要求进行了主题综合。
总体而言，筛选了6608篇摘要，266篇文章进行了全文评审，以确定8篇描述7种不同结果返回系统的开发和评估的文章。8篇文章中有7篇报告使用了多模式传播方法，包括实体文件、电子邮件、电话和数字平台的组合，以支持文本和图形数据表示。一篇文章概述了为特定参与者群体服务的可及性特征。没有一篇文章详细描述结果是如何匿名或未匿名的。共有4项研究依靠专家或临床医生代表研究团队分享结果。4项研究在结果的同时还包括了额外的教育或背景材料，包括专为与专家和临床医生后续跟进设计的特定材料。参与者并不抗拒接收不利结果，而是旨在通过改变生活方式、临床干预或寻求社区支持将此类信息融入他们的生活。
结果返回系统应支持基于文本的结果的多种传播模式。额外的教育和通俗易懂的材料有助于参与者理解和使用从接收结果中获得的信息。
