Open data, trials and new ethics of using others' work

2020 ◽  
pp. medethics-2019-105898
Author(s):  
Nicholas W Carris ◽  
Byron Cheon ◽  
Jay Wolfson

Data and ideas are the capital of research productivity. Is it ethical to preempt the publication of another researcher’s unpublished data or preliminary analysis, perhaps without citation? The long-established answer is ‘certainly not’—but recent ‘open data’ use suggests otherwise. A research competition was held using data from The Systolic Blood Pressure Intervention Trial (SPRINT). This SPRINT Data Analysis Challenge created a novel environment for using open data as data became open early. This allowed third-party researchers the opportunity to assess some of the trial’s outcomes before trialists. Could this infringe on trialists’ right to analyse their data? Simultaneously, trialists had access to analyses from submissions to the competition that were not formally ‘published’ with a typical author credit or citation. Therefore, trialists had the opportunity to view the competition submissions and published on those ideas first without a typical way to cite the source of that idea. Could this infringe on researchers’ right to be credited for their ideas? This is not intended as a criticism of open data, the SPRINT Data Analysis Challenge, or similar systems/ventures, but is an effort to objectively note what may be remediable flaws in the worthwhile, growing and dynamic uses of open data. We offer preliminary analytics to shed more light and provide fodder for additional discussion.

PLoS ONE ◽  
2018 ◽  
Vol 13 (9) ◽  
pp. e0203305 ◽  
Author(s):  
Mark A. Supiano ◽  
Laura Lovato ◽  
Walter T. Ambrosius ◽  
Jeffrey Bates ◽  
Srinivasan Beddhu ◽  
...  

2018 ◽  
Vol 34 (6) ◽  
pp. 814-824
Author(s):  
Carolyn H Still ◽  
Nicholas M Pajewski ◽  
Gordon J Chelune ◽  
Stephen R Rapp ◽  
Kaycee M Sink ◽  
...  

Abstract Objective To examine the association of global cognitive function assessed via the Montreal Cognitive Assessment (MoCA) and deficiencies in instrumental activities of daily living (IADL) on the Functional Activity Questionnaire (FAQ) in hypertensive older adults in the Systolic Blood Pressure Intervention Trial (SPRINT). Methods In cross-sectional analysis, 9,296 SPRINT participants completed the MoCA at baseline. The FAQ was obtained from 2,705 informants for SPRINT participants scoring <21 or <22 on the MoCA, depending on education. FAQ severity ranged from no dysfunction (Score = 0) to moderate/severe dysfunction (Score = 5+). Results Participants who triggered FAQ administration were older, less educated, and more likely to be Black or Hispanic (p < 0.001). Sixty-one percent (n = 1,661) of participants’ informants reported no functional difficulties in IADLs. An informant report, however, of any difficulty on the FAQ was associated with lower MoCA scores after controlling for age, sex, race/ethnicity, and education (p < 0.05). Partial proportional odds regression indicates that participants scoring lower on the MoCA (in the 10th to <25th, fifth to <10th, and <fifth percentiles) had higher adjusted odds of their informant indicating dysfunction on the FAQ, relative to participants scoring at or above the 25th percentile on the MoCA (p < 0.001). Conclusions While lower global cognitive function was strongly associated with IADL deficits on FAQ, informants indicated no functional difficulties for the majority of SPRINT participants, despite low MoCA scores. These findings can help with designing future studies which aim to detect mild cognitive impairment and/or dementia in large, community-dwelling populations.


2016 ◽  
Vol 19 (2) ◽  
pp. 116-125 ◽  
Author(s):  
Carlos J. Rodriguez ◽  
Carolyn H. Still ◽  
Katelyn R. Garcia ◽  
Lynne Wagenknecht ◽  
Suzanne White ◽  
...  

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