Willingness to share research data is related to the strength of the evidence and the quality of reporting of statistical results.
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ABSTRACT:
SUBMITTER: Wicherts JM
PROVIDER: S-EPMC3206853 | biostudies-literature | 2011
REPOSITORIES: biostudies-literature
Publications
Willingness to share research data is related to the strength of the evidence and the quality of reporting of statistical results.
Wicherts Jelte M JM Bakker Marjan M Molenaar Dylan D
PloS one 20111102 11
<h4>Background</h4>The widespread reluctance to share published research data is often hypothesized to be due to the authors' fear that reanalysis may expose errors in their work or may produce conclusions that contradict their own. However, these hypotheses have not previously been studied systematically.<h4>Methods and findings</h4>We related the reluctance to share research data for reanalysis to 1148 statistically significant results reported in 49 papers published in two major psychology jo ...[more]
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Project description:ImportanceUsing social media to recruit participants is a common and cost-effective practice. Willingness to participate (WTP) in biomedical research is a function of trust in the scientific team, which is closely tied to the source of funding and institutional connections.ObjectiveTo determine whether WTP and willingness to share social media data are associated with the type of research team and online recruitment platform.Design, setting, and participantsThis mixed-methods longitudinal survey and qualitative study was conducted over 2 points (T1 and T2) using Amazon's Mechanical Turk (MTurk) platform. Participants were US adults aged 18 years or older who use at least 1 social media platform. Recruitment was stratified to match race/ethnicity proportions of the 2010 US Census. The volunteer sample consisted of 914 participants at T1, and 655 participants completed the follow-up survey 5 months later (T2).Main outcomes and measuresOutcomes were (1) past experience with online research and sharing social media data for research; (2) WTP in research advertised online; (3) WTP in a study sponsored by a pharmaceutical company, a university, or a federal agency; and (4) willingness to share social media data. Opinions were solicited regarding the European Union's General Data Protection Regulation statute, which came into effect between T1 and T2.ResultsOf 914 participants completing the first survey (T1), 604 (66.1%) were aged 18 to 39 years and 494 (54.0%) were female. Of these, 655 participants (71.7%) responded at T2. While 680 participants (74.4%) indicated WTP in biomedical research, only 454 (49.3%) were willing to share their social media data. Participants were significantly less likely to participate in federally sponsored (odds ratio [OR], 0.58; 95% CI, 0.51-0.64; P < .001) or pharmaceutical company (OR, 0.59; 95% CI, 0.53-0.66; P < .001) research than university-led studies. They were also less likely to share their social medial data for federal (OR, 0.65; 95% CI, 0.58-0.72; P < .001) or pharmaceutical company (OR, 0.50; 95% CI, 0.44-0.56; P < .001) research compared with academic studies. Willingness to participate in pharmaceutical company-led research decreased 11.89% from T1 to T2 (OR for T2, 0.62; 95% CI, 0.54-0.77; P < .001). Reasons for WTP were interest in furthering science, financial incentives, trust in the organization, and data security. While 63.0% of respondents reported seeing new privacy policy emails related to the General Data Protection Regulation law, only 27.1% indicated this positively influenced their WTP. Thematic analysis of responses indicated that WTP may improve with stronger data security measures.Conclusions and relevanceThis study suggests that researchers may see reduced online research participation and data sharing, particularly for research conducted outside academia.
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Project description:The growing smartphone penetration and the integration of smartphones into people's everyday practices offer researchers opportunities to augment survey measurement with smartphone-sensor measurement or to replace self-reports. Potential benefits include lower measurement error, a widening of research questions, collection of in situ data, and a lowered respondent burden. However, privacy considerations and other concerns may lead to nonparticipation. To date, little is known about the mechanisms of willingness to share sensor data by the general population, and no evidence is available concerning the stability of willingness. The present study focuses on survey respondents' willingness to share data collected using smartphone sensors (GPS, camera, and wearables) in a probability-based online panel of the general population of the Netherlands. A randomized experiment varied study sponsor, framing of the request, the emphasis on control over the data collection process, and assurance of privacy and confidentiality. Respondents were asked repeatedly about their willingness to share the data collected using smartphone sensors, with varying periods before the second request. Willingness to participate in sensor-based data collection varied by the type of sensor, study sponsor, order of the request, respondent's familiarity with the device, previous experience with participating in research involving smartphone sensors, and privacy concerns. Willingness increased when respondents were asked repeatedly and varied by sensor and task. The timing of the repeated request, one month or six months after the initial request, did not have a significant effect on willingness.
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Project description:BackgroundWearable devices that are used for observational research and clinical trials hold promise for collecting data from study participants in a convenient, scalable way that is more likely to reach a broad and diverse population than traditional research approaches. Amazon Mechanical Turk (MTurk) is a potential resource that researchers can use to recruit individuals into studies that use data from wearable devices.ObjectiveThis study aimed to explore the characteristics of wearable device users on MTurk that are associated with a willingness to share wearable device data for research. We also aimed to determine whether compensation was a factor that influenced the willingness to share such data.MethodsThis was a secondary analysis of a cross-sectional survey study of MTurk workers who use wearable devices for health monitoring. A 19-question web-based survey was administered from March 1 to April 5, 2018, to participants aged ≥18 years by using the MTurk platform. In order to identify characteristics that were associated with a willingness to share wearable device data, we performed logistic regression and decision tree analyses.ResultsA total of 935 MTurk workers who use wearable devices completed the survey. The majority of respondents indicated a willingness to share their wearable device data (615/935, 65.8%), and the majority of these respondents were willing to share their data if they received compensation (518/615, 84.2%). The findings from our logistic regression analyses indicated that Indian nationality (odds ratio [OR] 2.74, 95% CI 1.48-4.01, P=.007), higher annual income (OR 2.46, 95% CI 1.26-3.67, P=.02), over 6 months of using a wearable device (OR 1.75, 95% CI 1.21-2.29, P=.006), and the use of heartbeat and pulse tracking monitoring devices (OR 1.60, 95% CI 0.14-2.07, P=.01) are significant parameters that influence the willingness to share data. The only factor associated with a willingness to share data if compensation is provided was Indian nationality (OR 0.47, 95% CI 0.24-0.9, P=.02). The findings from our decision tree analyses indicated that the three leading parameters associated with a willingness to share data were the duration of wearable device use, nationality, and income.ConclusionsMost wearable device users indicated a willingness to share their data for research use (with or without compensation; 615/935, 65.8%). The probability of having a willingness to share these data was higher among individuals who had used a wearable for more than 6 months, were of Indian nationality, or were of American (United States of America) nationality and had an annual income of more than US $20,000. Individuals of Indian nationality who were willing to share their data expected compensation significantly less often than individuals of American nationality (P=.02).
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Project description:The replicability of research findings has recently been disputed across multiple scientific disciplines. In constructive reaction, the research culture in psychology is facing fundamental changes, but investigations of research practices that led to these improvements have almost exclusively focused on academic researchers. By contrast, we investigated the statistical reporting quality and selected indicators of questionable research practices (QRPs) in psychology students' master's theses. In a total of 250 theses, we investigated utilization and magnitude of standardized effect sizes, along with statistical power, the consistency and completeness of reported results, and possible indications of p-hacking and further testing. Effect sizes were reported for 36% of focal tests (median r = 0.19), and only a single formal power analysis was reported for sample size determination (median observed power 1 - β = 0.67). Statcheck revealed inconsistent p-values in 18% of cases, while 2% led to decision errors. There were no clear indications of p-hacking or further testing. We discuss our findings in the light of promoting open science standards in teaching and student supervision.
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Project description:BACKGROUND:Patients generate large amounts of digital data through devices, social media applications, and other online activities. Little is known about patients' perception of the data they generate online and its relatedness to health, their willingness to share data for research, and their preferences regarding data use. METHODS:Patients at an academic urban emergency department were asked if they would donate any of 19 different types of data to health researchers and were asked about their views on data types' health relatedness. Factor analysis was used to identify the structure in patients' perceptions of willingness to share different digital data, and their health relatedness. RESULTS:Of 595 patients approached 206 agreed to participate, of whom 104 agreed to share at least one types of digital data immediately, and 78% agreed to donate at least one data type after death. EMR, wearable, and Google search histories (80%) had the highest percentage of reported health relatedness. 72% participants wanted to know the results of any analysis of their shared data, and half wanted their healthcare provider to know. CONCLUSION:Patients in this study were willing to share a considerable amount of personal digital data with health researchers. They also recognize that digital data from many sources reveal information about their health. This study opens up a discussion around reconsidering US privacy protections for health information to reflect current opinions and to include their relatedness to health.
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Project description:For scientific, ethical and economic reasons, experiments involving animals should be appropriately designed, correctly analysed and transparently reported. This increases the scientific validity of the results, and maximises the knowledge gained from each experiment. A minimum amount of relevant information must be included in scientific publications to ensure that the methods and results of a study can be reviewed, analysed and repeated. Omitting essential information can raise scientific and ethical concerns. We report the findings of a systematic survey of reporting, experimental design and statistical analysis in published biomedical research using laboratory animals. Medline and EMBASE were searched for studies reporting research on live rats, mice and non-human primates carried out in UK and US publicly funded research establishments. Detailed information was collected from 271 publications, about the objective or hypothesis of the study, the number, sex, age and/or weight of animals used, and experimental and statistical methods. Only 59% of the studies stated the hypothesis or objective of the study and the number and characteristics of the animals used. Appropriate and efficient experimental design is a critical component of high-quality science. Most of the papers surveyed did not use randomisation (87%) or blinding (86%), to reduce bias in animal selection and outcome assessment. Only 70% of the publications that used statistical methods described their methods and presented the results with a measure of error or variability. This survey has identified a number of issues that need to be addressed in order to improve experimental design and reporting in publications describing research using animals. Scientific publication is a powerful and important source of information; the authors of scientific publications therefore have a responsibility to describe their methods and results comprehensively, accurately and transparently, and peer reviewers and journal editors share the responsibility to ensure that published studies fulfil these criteria.
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Project description:BACKGROUND:Psychiatry research has begun to leverage data collected from patients' social media and smartphone use. However, information regarding the feasibility of utilizing such data in an outpatient setting and the acceptability of such data in research and practice is limited. OBJECTIVE:This study aimed at understanding the outpatients' willingness to have information from their social media posts and their smartphones used for clinical or research purposes. METHODS:In this survey study, we surveyed patients (N=238) in an outpatient clinic waiting room. Willingness to share social media and passive smartphone data was summarized for the sample as a whole and broken down by sex, age, and race. RESULTS:Most patients who had a social media account and who were receiving talk therapy treatment (74.4%, 99/133) indicated that they would be willing to share their social media posts with their therapists. The percentage of patients willing to share passive smartphone data with researchers varied from 40.8% (82/201) to 60.7% (122/201) depending on the parameter, with sleep duration being the parameter with the highest percentage of patients willing to share. A total of 30.4% of patients indicated that media stories of social media privacy breaches made them more hesitant about sharing passive smartphone data with researchers. Sex and race were associated with willingness to share smartphone data, with men and whites being the most willing to share. CONCLUSIONS:Our results indicate that most patients in a psychiatric outpatient setting would share social media and passive smartphone data and that further research elucidating patterns of willingness to share passive data is needed.
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Project description:BackgroundConnected health has created opportunities for leveraging health data to deliver preventive and personalized health care services. The increasing number of personal devices and advances in measurement technologies contribute to an exponential growth in digital health data. The practices for sharing data across the health ecosystem are evolving as there are more opportunities for using such data to deliver responsive health services.ObjectiveThe objective of this study was to explore user attitudes toward sharing personal health data (PHD). The study was executed within the first year after the implementation of the new General Data Protection Regulation (GDPR) legal framework.MethodsThe authors analyzed the results of an online questionnaire survey to explore the willingness of 8004 people using connected health services across four European countries to share their PHD and the conditions under which they would be willing to do so.ResultsOur findings indicate that the majority of users are willing to share their personal PHD for scientific research (1811/8004, 22.63%). Age, education level, and occupation of the participants, in addition to the level of digitalization in their country were found to be associated with data sharing attitudes.ConclusionsPositive attitudes toward data sharing for scientific research can be perceived as an indication of trust established between users and academia. Nevertheless, the interpretation of data sharing attitudes is a complex process, related to and influenced by various factors.
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