Having the means to share research data openly is essential to modern science. For human research, a key aspect in this endeavor is obtaining consent from participants, not just to take part in a study, which is a basic ethical principle, but also to share their data with the scientific community. To ensure that the participants' privacy is respected, national and/or supranational regulations and laws are in place. It is, however, not always clear to researchers what the implications of those are, nor how to comply with them. The Open Brain Consent (
Qualitative Data Sharing: Participant Understanding, Motivation, and Consent
Expectations to share data underlying studies are increasing, but research on how participants, particularly those in qualitative research, respond to requests for data sharing is limited. We studied research participants’ willingness to, understanding of, and motivations for data sharing. As part of a larger qualitative study on abortion reporting, we conducted interviews with 64 cisgender women in two states in early 2020 and asked for consent to share de-identified data. At the end of interviews, we asked participants to reflect on their motivations for agreeing or declining to share their data. The vast majority of respondents consented to data sharing and reported that helping others was a primary motivation for agreeing to share their data. However, a substantial number of participants showed a limited understanding of the concept of “data sharing.” Additional research is needed on how to improve participants’ understanding of data sharing and thus ensure fully informed consent.
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- Award ID(s):
- 1823950
- PAR ID:
- 10319966
- Date Published:
- Journal Name:
- Qualitative Health Research
- Volume:
- 32
- Issue:
- 1
- ISSN:
- 1049-7323
- Format(s):
- Medium: X
- Sponsoring Org:
- National Science Foundation
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Abstract https://open-brain-consent.readthedocs.io ) is an international initiative that aims to provide researchers in the brain imaging community with information about data sharing options and tools. We present here a short history of this project and its latest developments, and share pointers to consent forms, including a template consent form that is compliant with the EU general data protection regulation. We also share pointers to an associated data user agreement that is not only useful in the EU context, but also for any researchers dealing with personal (clinical) data elsewhere. -
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The research team, prospective participants, and written materials all influence the success of the informed consent process. As digital health research becomes more prevalent, new challenges for successful informed consent are introduced. This exploratory research utilized a human centered design process in which 19 people were enrolled to participate in one of four online focus-groups. Participants discussed their experiences with informed consent, preferences for receiving study information and ideas about alternative consent approaches. Data were analyzed using qualitative methods. Six major themes and sixteen sub-themes were identified that included study information that prospective participants would like to receive, preferences for accessing information and a desire to connect with research team members. Specific to digital health, participants expressed a need to understand how the technologies worked and how the volume of granular personal information would be collected, stored, and shared.
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Pooling and sharing data increases and distributes its value. But since data cannot be revoked once shared, scenarios that require controlled release of data for regulatory, privacy, and legal reasons default to not sharing. Because selectively controlling what data to release is difficult, the few data-sharing consortia that exist are often built around data-sharing agreements resulting from long and tedious one-off negotiations. We introduce Data Station, a data escrow designed to enable the formation of data-sharing consortia. Data owners share data with the escrow knowing it will not be released without their consent. Data users delegate their computation to the escrow. The data escrow relies on delegated computation to execute queries without releasing the data first. Data Station leverages hardware enclaves to generate trust among participants, and exploits the centralization of data and computation to generate an audit log. We evaluate Data Station on machine learning and data-sharing applications while running on an untrusted intermediary. In addition to important qualitative advantages, we show that Data Station: i) outperforms federated learning baselines in accuracy and runtime for the machine learning application; ii) is orders of magnitude faster than alternative secure data-sharing frameworks; and iii) introduces small overhead on the critical path.more » « less
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Fernández-Alcántara, Manuel (Ed.)Background Nurse identification of patient deterioration is critical, particularly during the COVID-19 pandemic, as patients can deteriorate quickly. While the literature has shown that nurses rely on intuition to make decisions, there is limited information on what sources of data experienced nurses utilize to inform their intuition. The objectives of this study were to identify sources of data that inform nurse decision-making related to recognition of deteriorating patients, and explore how COVID-19 has impacted nurse decision-making. Methods In this qualitative study, experienced nurses voluntarily participated in focused interviews. During focused interviews, expert nurses were asked to share descriptions of memorable patient encounters, and questions were posed to facilitate reflections on thoughts and actions that hindered or helped their decision-making. They were also asked to consider the impact of COVID-19 on nursing and decision-making. Interviews were transcribed verbatim, study team members reviewed transcripts and coded responses, and organized key findings into themes. Results Several themes related to decision-making were identified by the research team, including: identifying patient care needs, workload management, and reflecting on missed care opportunities to inform learning. Participants (n = 10) also indicated that COVID-19 presented a number of unique barriers to nurse decision-making. Conclusions Findings from this study indicate that experienced nurses utilize several sources of information to inform their intuition. It is apparent that the demands on nurses in response to pandemics are heightened. Decision-making themes drawn from participants’ experiences can to assist nurse educators for training nursing students on decision-making for deteriorating patients and how to manage the potential barriers (e.g., resource constraints, lack of family) associated with caring for patients during these challenging times prior to encountering these issues in the clinical environment. Nurse practice can utilize these findings to increase awareness among experienced nurses on recognizing how pandemic situations can impact to their decision-making capability.more » « less
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Bui, T. (Ed.)Prior research has established the feasibility of conducting online interviews and observations, yet there is limited guidance in how to interact with participants when conducting fully mediated research with screen-sharing and video. This study, conducted during early phases of COVID-19, included 15 volunteer tweet-annotators working with an emergency response organization. This method contribution uses cues-related and surveillance theories to reveal challenges and best practices when asking research participants to share their screen, be on video, and participate in a multiple-interview study. The findings suggest that researchers conducting online-mediated research should be prepared to provide technical support for the devices and interfaces participants use during the study, find ways to “see” beyond what is on the mediated screen, and consider ethical issues not often discussed. In addition to these findings, an output of this research is two brief training videos useful for other researchers embarking on conducting fully mediated research.more » « less
- Free Publicly Accessible Full Text
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Accepted Manuscript1.0
- Journal Article:
- https://doi.org/10.1177/10497323211054058
