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Sharing Data Collected with Smartphone Sensors: Willingness, Participation, and Nonparticipation Bias.

ABSTRACT: Smartphone sensors allow measurement of phenomena that are difficult or impossible to capture via self-report (e.g., geographical movement, physical activity). Sensors can reduce respondent burden by eliminating survey questions and improve measurement accuracy by replacing/augmenting self-reports. However, if respondents who are not willing to collect sensor data differ on critical attributes from those who are, the results can be biased. Research on the mechanisms of willingness to collect sensor data mostly comes from (nonprobability) online panels and is hypothetical (i.e., asks participants about the likelihood of participation in a sensor-based study). In a cross-sectional general population randomized experiment, we investigate how features of the request and respondent characteristics influence willingness to share (WTS) and actually sharing smartphone-sensor data. We manipulate the request to either mention or not mention (1) how participation will benefit the participant, (2) participants' autonomy over data collection, and (3) that data will be kept confidential. We assess nonparticipation bias using the administrative records. WTS and actually sharing varies by sensor task, participants' autonomy over data sharing, their smartphone skills, level of privacy concerns, and attitudes toward surveys. Fewer people agree to share photos and a video than geolocation, but all who agreed to share photos or a video actually did. Some nonresponse and nonparticipation biases are substantial and make each other worse, but others jointly reduce the overall bias. Our findings suggest that sensor-data-sharing decisions depend on sample members' situation when asked to share and the nature of the sensor task rather than the sensor type.

SUBMITTER: Struminskaya B

PROVIDER: S-EPMC8483283 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:ImportanceInteroperable patient data exchange across hospitals remains an important policy goal for reducing costs and improving the quality of care. Congress designated 2018 as the goal for nationwide interoperability, and policy makers hoped that aligning financial incentives via alternative payment models (APMs) would help achieve that goal.ObjectiveTo measure interoperability progress since 2014, assess the association between alternative payment model participation and hospital engagement in interoperable data sharing from 2014 to 2018, and evaluate hospital-reported barriers to interoperability in 2018.Design setting and participantsThis cohort study included nonfederal acute care hospitals in the US from January 2014 to December 2018 that responded to the American Hospital Association Annual Survey. Data were analyzed from October 2019 through March 2021.ExposuresParticipation in an APM, including accountable care organizations, bundled payments, or patient-centered medical homes.Main outcomes and measuresHospital engagement in all 4 domains of interoperability: finding/querying for data, sending data electronically, receiving data electronically, and integrating electronic patient data from external care delivery organizations.ResultsThe sample included 3928 hospitals in the US from January 2014 to December 2018. Progress across interoperability domains was uneven, 2430 (88.3%) hospitals sending and 2115 (76.9%) receiving patient data electronically in 2018. However, only 1249 (45.4%) hospitals engaged in all 4 domains of interoperability in 2018, and growth between 2014 and 2018 was slow. There was no evidence that participation in APMs was associated with interoperability, with multivariate models suggesting that participation in an APM was associated with only a non-statistically significant 1-percentage point increase in interoperability engagement (β = 0.01; 95% CI, -0.01 to 0.03). The most commonly cited barrier to interoperability was challenges associated with sharing data across different electronic health record vendors.Conclusions and relevanceIn this cohort study of hospital interoperability, fewer than half of US hospitals were engaged in interoperable data exchange in 2018. There was no observable evidence that hospital APM participation was associated with interoperability engagement. Many hospitals report technical and governance challenges to data sharing that are unlikely to be addressed by the alignment of financial incentives alone.

Project description:Analyzing genomic data across populations is central to understanding the role of genetic factors in health and disease. Successful data sharing relies on public support, which requires attention to whether people around the world are willing to donate their data that are then subsequently shared with others for research. However, studies of such public perceptions are geographically limited and do not enable comparison. This paper presents results from a very large public survey on attitudes toward genomic data sharing. Data from 36,268 individuals across 22 countries (gathered in 15 languages) are presented. In general, publics across the world do not appear to be aware of, nor familiar with, the concepts of DNA, genetics, and genomics. Willingness to donate one's DNA and health data for research is relatively low, and trust in the process of data's being shared with multiple users (e.g., doctors, researchers, governments) is also low. Participants were most willing to donate DNA or health information for research when the recipient was specified as a medical doctor and least willing to donate when the recipient was a for-profit researcher. Those who were familiar with genetics and who were trusting of the users asking for data were more likely to be willing to donate. However, less than half of participants trusted more than one potential user of data, although this varied across countries. Genetic information was not uniformly seen as different from other forms of health information, but there was an association between seeing genetic information as special in some way compared to other health data and increased willingness to donate. The global perspective provided by our "Your DNA, Your Say" study is valuable for informing the development of international policy and practice for sharing genomic data. It highlights that the research community not only needs to be worthy of trust by the public, but also urgent steps need to be taken to authentically communicate why genomic research is necessary and how data donation, and subsequent sharing, is integral to this.

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Sharing Data Collected with Smartphone Sensors: Willingness, Participation, and Nonparticipation Bias.

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