Biomedical Big Data: New Models of Control Over Access, Use and Governance
AbstractEmpirical evidence suggests that while people hold the capacity to control their data in high regard, they increasingly experience a loss of control over their data in the online world. The capacity to exert control over the generation and flow of personal information is a fundamental premise to important values such as autonomy, privacy, and trust. In healthcare and clinical research this capacity is generally achieved indirectly, by agreeing to specific conditions of informational exposure. Such conditions can be openly stated in informed consent documents or be implicit in the norms of confidentiality that govern the relationships of patients and healthcare professionals. However, with medicine becoming a data-intense enterprise, informed consent and medical confidentiality, as mechanisms of control, are put under pressure. In this paper we explore emerging models of informational control in data-intense healthcare and clinical research, which can compensate for the limitations of currently available instruments. More specifically, we discuss three approaches that hold promise in increasing individual control: the emergence of data portability rights as means to control data access, new mechanisms of informed consent as tools to control data use, and finally, new participatory governance schemes that allow individuals to control their data through direct involvement in data governance. We conclude by suggesting that, despite the impression that biomedical big data ...
Abstract ObjectivesTo evaluate how oral and general health‐risk behaviours cluster among Brazilian adolescents. MethodsThe study comprised a total of 109 104 adolescents (52.2% female) participating in the Brazilian National School‐based Student Health Survey (PeNSE). Seventeen behaviours (including diet; oral and hand hygiene; frequency of dental visits; tobacco, alcohol and drug use; sexual behaviour; physical activity, and risk for external causes) were measured using a self‐reported questionnaire. Pairwise correlations between the health‐risk behaviours were performed, and clustering was assessed by the hierarc...
Authors: PMID: 29166204 [PubMed - in process]
Authors: Yue JK, Winkler EA, Sharma S, Vassar MJ, Ratcliff JJ, Korley FK, Seabury SA, Ferguson AR, Lingsma HF, Meeuws S, Adeoye OM, Rick JW, Robinson CK, Duarte SM, Yuh EL, Mukherjee P, Dikmen SS, McAllister TW, Diaz-Arrastia R, Valadka AB, Gordon WA, Okonkwo DO, Manley GT, , Hansen Deng Predictors of mTBI admission, referral and outcome, , and the TRACK-TBI Investigators Abstract OBJECTIVE: To investigate the clinical management and medical follow-up of patients with mild traumatic brain injury (mTBI) presenting to emergency departments (EDs). METHODS: Overall, 168 adult patients with mTBI from the prospective...
CONCLUSIONS: Accordingly, we demonstrate the potential of mammalian hair follicles serving as an additional source for biomarker discovery and for diagnosing mTBI with high accessibility. PMID: 29157017 [PubMed - as supplied by publisher]
Authors: Mercier E, Tardif PA, Cameron PA, Émond M, Moore L, Mitra B, Ouellet MC, Frenette J, de Guise E, Le Sage N Abstract BACKGROUND: This systematic review aimed to determine the prognostic value of neuron-specific enolase (NSE) to predict post-concussion symptoms following mild traumatic brain injury (TBI). METHODS: Seven databases were searched for studies evaluating the association between NSE levels and post-concussion symptoms assessed ≥ 3 months (persistent) or ≥ 7 days
CONCLUSION: Pre-injury psychosocial and demographic factors may be more important than injury severity for predicting some long-term functional outcomes post-TBI. It would likely be beneficial to assess these factors in the inpatient setting, with input from a multidisciplinary team, as an early understanding of prognostic indicators can help guide treatment for optimal functional outcomes. PMID: 29157000 [PubMed - as supplied by publisher]
Authors: Ibañez Pérez De La Blanca MA, Fernández Mondéjar E, Gómez Jimènez FJ, Alonso Morales JM, Lombardo MDQ, Viso Rodriguez JL Abstract PRIMARY OBJECTIVE: To identify risk factors for intracerebral lesion (ICL) in older adults with mild traumatic brain injury (MTBI) and evaluate the influence of comorbidities on outcomes. RESEARCH DESIGN: Prospective cohort study. METHODS AND PROCEDURES: Information was gathered on clinical history/examination, cranial computed tomography, admission Glasgow Coma Scale (GCS) score, analytical and coagulation findings, and mortalit...
CONCLUSIONS: rmTBI produces acute cognitive and anxiety-like disturbances associated with inflammatory changes in brain regions involved in spatial memory and anxiety. PMID: 29156991 [PubMed - as supplied by publisher]
CONCLUSION: Young patients reported psychological problems in several areas during the chronic phase of injury, which may hinder complete reintegration and participation in society. Larger functional improvement during sub-acute rehabilitation seemed to be associated with less psychological problems in the chronic phase. PMID: 29156990 [PubMed - as supplied by publisher]
Authors: Faugeras F, Rohaut B, Valente M, Sitt J, Demeret S, Bolgert F, Weiss N, Grinea A, Marois C, Quirins M, Demertzi A, Raimondo F, Galanaud D, Habert MO, Engemann D, Puybasset L, Naccache L Abstract BACKGROUND: The prognosis value of early clinical diagnosis of consciousness impairment is documented by an extremely limited number of studies, whereas it may convey important information to guide medical decisions. OBJECTIVE: We aimed at determining if patients diagnosed at an early stage (
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