Co-Designing a wiki-based community knowledge management system for personal science

Personal science is the practice of addressing personally relevant health questions through self-research. Implementing personal science can be challenging, due to the need to develop and adopt research protocols, tools, and methods. While online communities can provide valuable peer support, tools for systematically accessing community knowledge are lacking. The objective of this study is to apply a participatory design process involving a community of personal science practitioners to develop a peer-produced knowledge base that supports the needs of practitioners as consumers and contributors of knowledge. The process led to the development of the Personal Science Wiki, an open repository for documenting and accessing individual self-tracking projects while facilitating the establishment of consensus knowledge. After initial design iterations and a field testing phase, we performed a user study with 21 participants to test and improve the platform, and to explore suitable information architectures. The study deepened our understanding of barriers to scaling the personal science community, established an infrastructure for knowledge management actively used by the community, and provided lessons on challenges, information needs, representations, and architectures to support individuals with their personal health inquiriesComment: supplementary files are on Zenodo at https://zenodo.org/records/1065915

Open Humans:A platform for participant-centered research and personal data exploration

Background Many aspects of our lives are now digitized and connected to the internet. As a result, individuals are now creating and collecting more personal data than ever before. This offers an unprecedented chance for human-participant research ranging from the social sciences to precision medicine. With this potential wealth of data comes practical problems (e.g., how to merge data streams from various sources), as well as ethical problems (e.g., how best to balance risks and benefits when enabling personal data sharing by individuals). Results To begin to address these problems in real time, we present Open Humans, a community-based platform that enables personal data collections across data streams, giving individuals more personal data access and control of sharing authorizations, and enabling academic research as well as patient-led projects. We showcase data streams that Open Humans combines (e.g., personal genetic data, wearable activity monitors, GPS location records, and continuous glucose monitor data), along with use cases of how the data facilitate various projects. Conclusions Open Humans highlights how a community-centric ecosystem can be used to aggregate personal data from various sources, as well as how these data can be used by academic and citizen scientists through practical, iterative approaches to sharing that strive to balance considerations with participant autonomy, inclusion, and privacy.publishedVersio

User Perspectives of a Web-Based Data-Sharing Platform (Open Humans) on Ethical Oversight in Participant-Led Research: Protocol for a Quantitative Study

Background: Advances in medicine rely to a great extent on people’s willingness to share their data with researchers. With increasingly widespread use of digital technologies, several Web-based communities have emerged aiming to enable their users to share large amounts of data, some of which can possibly be employed for research purposes by scientists, or to conduct participant-led research (PLR). Scholarship has recently addressed the necessity of interrogating how existing ethical standards can and should be applied and adapted in view of the specificities of such Web-based activities. So far, no study has explored participants’ beliefs about and attitudes toward ethical oversight when it comes to platforms that involve medical data sharingObjective: This paper presents the protocol for a survey study aimed at understanding users’ beliefs about Web-based data-sharing platforms regarding how research ethics principles should be applied in such a setting. Furthermore, the study aims at quantitatively assessing the relationship between participants’ perspectives on ethical oversight and other variables such as previous participation in research, beliefs about data sharing, and attitudes toward self-experimentation.Methods: We are conducting a Web-based survey with users of a popular Web-based data-sharing platform, Open Humans. The survey has been sent to approximately 4640 users registered for the Open Humans newsletter. To fill out the survey, participants need to have an account on Open Humans. We expect a 5%-10% response rate (between 200 and 400 completed surveys out of approximately 4000 survey invitations sent). Independent variables include past data-sharing behavior and intention, beliefs about data sharing, past participation in research, attitudes toward self-experimentation, perceived knowledge of the platform’s guidelines and terms, perceived importance of having transparent guidelines, and governance-related beliefs. The main dependent variable is participants’ expectations regarding who should ensure that ethical requirements are met within research projects conducted on open data-sharing platforms, based on Emanuel et al’s ethical framework. We will use chi-square tests to assess the relationship between participants’ expectations regarding ethical oversight and their past behavior, future intentions, beliefs, attitudes, and knowledge.Results: Data collection started on June 13, 2018. A reminder to fill out the survey was sent to participants in mid-July. We expect to gain insights on users’ perspectives on the ethical oversight of Web-based data-sharing platforms and on the associated experiences, beliefs, and sociodemographic characteristicsConclusions: When digital tools allow people to engage in PLR including medical data, understanding how people interpret and envision the ethical oversight of their data-sharing practices is crucial. This will be the first study to explore users’ perspectives on ethical oversight of Web-based data-sharing platforms. The results will help inform the development of a framework that can be employed for platforms hosting various kinds of research projects to accommodate participants’ ethical oversight needs.ISSN:1929-074

Correction: Data Sharing Goals for Nonprofit Funders of Clinical Trials

[This corrects the article DOI: 10.2196/23011.]