Data Sharing and Privacy in Pharmaceutical Studies

2021 ◽  
Vol 27 ◽  
Author(s):  
Rufan Chen ◽  
Yi Zhang ◽  
Zuochao Dou ◽  
Feng Chen ◽  
Kang Xie ◽  
...  

Abstract: Adverse drug events have been a long-standing concern for the wide-ranged harms on public health, and the substantial disease burden. The key to diminish or eliminate the impacts is to build a comprehensive pharmacovigilance system. Application of the “big data” approach has been proved to assist the detection of adverse drug events by involving previously unavailable data sources and promoting health information exchange. Even though, challenges and potential risks still remain. The lack of effective privacy-preserving measures in the flow of medical data is the most important Accepted: one, where urgent actions are required to prevent the threats and therefore facilitate the construction of pharmacovigilance systems. Several privacy protection methods are reviewed in this article, which may be helpful to break the barrier.

Author(s):  
Alice Noblin ◽  
Kendall Cortelyou-Ward

Since 2004, the services of the Florida Health Information Exchange (HIE) have grown, and in 2011, the state contracted with Harris Corporation to provide some basic services to the Florida health care industry and provide functional improvements to the expanding state-wide HIE. The endeavors of this public-private partnership continue to the present day; however, as HIE services have expanded, challenges continue to be encountered. Ultimately, successful exchange of medical data requires patient engagement and “buy-in.” The purpose of this article will consider why patient engagement is important for HIE success, offer recommendations to improve both patient and provider interest, and consider the importance of online patient portals to increase the effectiveness of health record keeping and the sharing of vital patient medical information needed by caregivers and their patients.


BMJ ◽  
2020 ◽  
pp. m4143
Author(s):  
Nathan Ford ◽  
Grania Brigden ◽  
Tom Ellman ◽  
Edward J Mills

Abstract Objective To identify any medical or public health rationale for claims that the time to act is now. Design Pseudo-systematic review. Data sources PubMed. Study selection Studies that included the claim “time is now” in the title, with or without exclamation marks. No language or date restriction was applied. Results 512 articles were included for review. No relationship was identified between time to act and disease burden, severity, or specialty. Claims that the time to act was Christmas were almost entirely without basis. A clustering of claims that it is time to act in the first quarter of the year suggested a possible association with New Year’s resolutions. Conclusions Now is as good a time as any.


2015 ◽  
Vol 7 (1) ◽  
Author(s):  
Jenna Iberg Johnson ◽  
Komal Brown

The goal of this analysis is to compare the results of influenza-like-illness (ILI) text and International Classification of Diseases (ICD) code classifiers applied to the Louisiana Office of Public Health (OPH) syndromic surveillance data reported by New Orleans area emergency departments and the Greater New Orleans Health Information Exchange (GNOHIE) data reported by New Orleans area outpatient clinics. This study adds to the evidence supporting the emerging use of outpatient data for syndromic surveillance.


2019 ◽  
Vol 6 (10) ◽  
Author(s):  
Joseph Sharp ◽  
Christine D Angert ◽  
Tyania Mcconnell ◽  
Pascale Wortley ◽  
Eugene Pennisi ◽  
...  

Abstract Background Public health information exchanges (HIEs) link real-time surveillance and clinical data and can help to re-engage out-of-care people with HIV (PWH). Methods We conducted a retrospective cohort study of out-of-care PWH who generated an HIE alert in the Grady Health System (GHS) Emergency Department (ED) between January 2017 and February 2018. Alerts were generated for PWH who registered in the GHS ED without Georgia Department of Public Health (GDPH) CD4 or HIV-1 RNA in the prior 14 months. The alert triggered a social work (SW)–led re-linkage effort. Multivariate logistic regression analyses used HIE-informed SW re-linkage efforts as the independent variable, and linkage to care and 3- and 6-month viral suppression (HIV-1 RNA < 200 c/mL) as primary outcomes. Patients admitted to the hospital were excluded from primary analysis. Results One hundred forty-seven out-of-care patients generated an alert. Ninety-eight were included in the primary analysis (mean age [SD], 41 ± 12 years; 70% male; 93% African American), and 20 received the HIE-informed SW intervention. Sixty percent of patients receiving the intervention linked to care in 6 months, compared with 35% who did not. Patients receiving the intervention were more likely to link to care (adjusted risk ratio [aRR], 1.63; 95% confidence interval [CI], 0.99–2.68) and no more likely to achieve viral suppression (aRR, 1.49; 95% CI, 0.50–4.46) than those who did not receive the intervention. Conclusions An HIE-informed, SW-led intervention systematically identified out-of-care PWH and may increase linkage to care for this important population. HIEs create an opportunity to intervene with linkage and retention strategies.


2020 ◽  
Vol 41 (S1) ◽  
pp. s423-s423
Author(s):  
Alana Cilwick ◽  
Alexis Burakoff ◽  
Wendy Bamberg ◽  
Geoffrey Brousseau ◽  
Nisha Alden ◽  
...  

Background: Healthcare-associated group A Streptococcus (GAS) infections can cause severe morbidity and death. Invasive GAS is a reportable condition in the 5-county metropolitan area of Denver, Colorado. Prior to August 2018, methodology to identify long-term care facility (LTCF) residency among reported GAS cases was accomplished by reviewing addresses reported electronically, and identification of postsurgical cases and outbreaks relied on reporting by healthcare facilities. We evaluated whether the use of a health information exchange (HIE) to identify healthcare exposures improved our ability to detect and rapidly respond to these events. Methods: In August 2018, we implemented a review of health records available in the HIE accessible by the Colorado Department of Public Health and Environment for all incoming reports of GAS for selected healthcare exposures: LTCF residency, surgery, delivery, wound care, and other relevant exposures. We defined an LTCF-related case as GAS in a current or recent resident (ie, in the 14 days prior to the positive culture) of an LTCF. Postpartum and postsurgical cases were defined as GAS isolated from a sterile site or wound during the inpatient stay or within 7 days of discharge following a delivery or surgical procedure. Outbreaks in each of these settings were defined as 2 or more cases within a 3-month period. We compared the number of cases and outbreaks identified in each category during a 1-year period before and after implementation of the use of the HIE in the case ascertainment process. Results: During August 2017 through July 2018, prior to implementation of the HIE process, we detected 45 LTCF cases and conducted outbreak investigations in 9 facilities. Moreover, 1 postsurgical case and 1 postpartum outbreak were reported by healthcare facilities; none were detected via surveillance. During August 2018 through July 2019, after the implementation of HIE process, we identified 70 LTCF cases and conducted outbreak investigations in 13 LTCFs. We detected 5 postsurgical cases and 3 postpartum cases, which resulted in 2 outbreak investigations. Conclusions: Enhanced GAS surveillance through use of a HIE resulted in detection of more healthcare-associated GAS infections and outbreaks. Timely identification of healthcare-associated GAS infections can allow for prompt response to outbreaks and promotion of proper infection control practices to prevent further cases. Jurisdictions in which GAS is a reportable condition should consider the use of HIEs as part of routine surveillance to identify GAS outbreaks in high-risk settings. HIEs should be made available to public health agencies for case ascertainment and outbreak identification.Funding: NoneDisclosures: None


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