scholarly journals What Should Health Departments Do with HIV Sequence Data?

Viruses ◽  
2020 ◽  
Vol 12 (9) ◽  
pp. 1018
Author(s):  
Ethan Romero-Severson ◽  
Arshan Nasir ◽  
Thomas Leitner

Many countries and US states have mandatory statues that require reporting of HIV clinical data including genetic sequencing results to the public health departments. Because genetic sequencing is a part of routine care for HIV infected persons, health departments have extensive sequence collections spanning years and even decades of the HIV epidemic. How should these data be used (or not) in public health practice? This is a complex, multi-faceted question that weighs personal risks against public health benefit. The answer is neither straightforward nor universal. However, to make that judgement—of how genetic sequence data should be used in describing and combating the HIV epidemic—we need a clear image of what a phylogenetically enhanced HIV surveillance system can do and what benefit it might provide. In this paper, we present a positive case for how up-to-date analysis of HIV sequence databases managed by health departments can provide unique and actionable information of how HIV is spreading in local communities. We discuss this question broadly, with examples from the US, as it is globally relevant for all health authorities that collect HIV genetic data.

2020 ◽  
Vol 12 (s1) ◽  
Author(s):  
Rami Kantor ◽  
John P. Fulton ◽  
Jon Steingrimsson ◽  
Vladimir Novitsky ◽  
Mark Howison ◽  
...  

AbstractGreat efforts are devoted to end the HIV epidemic as it continues to have profound public health consequences in the United States and throughout the world, and new interventions and strategies are continuously needed. The use of HIV sequence data to infer transmission networks holds much promise to direct public heath interventions where they are most needed. As these new methods are being implemented, evaluating their benefits is essential. In this paper, we recognize challenges associated with such evaluation, and make the case that overcoming these challenges is key to the use of HIV sequence data in routine public health actions to disrupt HIV transmission networks.


2019 ◽  
Vol 8 (1) ◽  
pp. 36 ◽  
Author(s):  
Giovanni Lorenzin ◽  
Franco Gargiulo ◽  
Arnaldo Caruso ◽  
Francesca Caccuri ◽  
Emanuele Focà ◽  
...  

HIV-1 diversity is increasing in European countries due to immigration flows, as well as travels and human mobility, leading to the circulation of both new viral subtypes and new recombinant forms, with important implications for public health. We analyzed 710 HIV-1 sequences comprising protease and reverse-transcriptase (PR/RT) coding regions, sampled from 2011 to 2017, from naive patients in Spedali Civili Hospital, Brescia, Italy. Subtyping was performed by using a combination of different tools; the phylogenetic analysis with a structured coalescence model and Makarov Chain Monte Carlo was used on the datasets, to determine clusters and evolution. We detected 304 (43%) patients infected with HIV-1 non-B variants, of which only 293 sequences were available, with four pure subtypes and five recombinant forms; subtype F1 (17%) and CRF02_AG (51.1%) were most common. Twenty-five transmission clusters were identified, three of which included >10 patients, belonging to subtype CRF02_AG and subtype F. Most cases of alleged transmission were between heterosexual couples. Probably due to strong migratory flows, we have identified different subtypes with particular patterns of recombination or, as in the case of the subtype G (18/293, 6.1%), to a complete lack of relationship between the sequenced strains, revealing that they are all singletons. Continued HIV molecular surveillance is most important to analyze the dynamics of the boost of transmission clusters in order to implement public health interventions aimed at controlling the HIV epidemic.


Author(s):  
Trevor Hoppe

As the HIV epidemic wore on in the 2000s, public health authorities became enamored with the idea of “ending AIDS.” That is, if they could just get HIV-positive people to take their pills and stop infecting other people. Health departments began to track HIV-positive clients more closely, aiming to control their behavior and ensure their adherence to treatment regimens. This chapter explores how local health authorities ensure that HIV-positive clients behave in a manner officials deem responsible—and how they catch and punish those who do not. While the state maintains that the work of local health officials is done solely in the interests of promoting public health, their efforts to control HIV-positive clients reveal that they are also engaged in policing and law enforcement.


Viruses ◽  
2020 ◽  
Vol 12 (9) ◽  
pp. 921
Author(s):  
Shannan N. Rich ◽  
Veronica L. Richards ◽  
Carla N. Mavian ◽  
William M. Switzer ◽  
Brittany Rife Magalis ◽  
...  

Molecular HIV surveillance is a promising public health strategy for curbing the HIV epidemic. Clustering technologies used by health departments to date are limited in their ability to infer/forecast cluster growth trajectories. Resolution of the spatiotemporal dynamics of clusters, through phylodynamic and phylogeographic modelling, is one potential strategy to develop a forecasting tool; however, the projected utility of this approach needs assessment. Prior to incorporating novel phylodynamic-based molecular surveillance tools, we sought to identify possible issues related to their feasibility, acceptability, interpretation, and utility. Qualitative data were collected via focus groups among field experts (n = 17, 52.9% female) using semi-structured, open-ended questions. Data were coded using an iterative process, first through the development of provisional themes and subthemes, followed by independent line-by-line coding by two coders. Most participants routinely used molecular methods for HIV surveillance. All agreed that linking molecular sequences to epidemiological data is important for improving HIV surveillance. We found that, in addition to methodological challenges, a variety of implementation barriers are expected in relation to the uptake of phylodynamic methods for HIV surveillance. The participants identified several opportunities to enhance current methods, as well as increase the usability and utility of promising works-in-progress.


2020 ◽  
Vol 4 (1) ◽  
Author(s):  
Anne De Biasi ◽  
Megan Wolfe ◽  
Jane Carmody ◽  
Terry Fulmer ◽  
John Auerbach

Abstract Background and Objectives The public health system in America—at all levels—has relatively few specialized initiatives that prioritize the health and well-being of older adults. And when public health does address the needs of older adults, it is often as an afterthought. In consultation with leaders in public health, health care, and aging, an innovative Framework for an Age-Friendly Public Health System (Framework) was developed outlining roles that public health could fulfill, in collaboration with aging services, to address the challenges and opportunities of an aging society. Research Design and Methods With leadership from Trust for America’s Health and The John A. Hartford Foundation, the Florida Departments of Health and Elder Affairs are piloting the implementation of this Framework within Florida’s county health departments and at the state level. The county health departments are expanding data collection efforts to identify older adult needs, creating new alliances with aging sector partners, coordinating with other agencies and community organizations to implement evidence-based programs and policies that address priority needs, and aligning efforts with the age-friendly communities and age-friendly health systems movements. Results, and Discussion and Implications The county health departments in Florida participating in the pilot are leveraging the Framework to expand public health practice, programs, and policies that address health services and health behaviors, social, and economic factors and environmental conditions that allow older adults to age in place and live healthier and more productive lives. The model being piloted in Florida can be tailored to meet the unique needs of each community and their older adult population.


2020 ◽  
Vol 13 (1) ◽  
pp. 111-121 ◽  
Author(s):  
Stuart Rennie ◽  
Mara Buchbinder ◽  
Eric Juengst ◽  
Lauren Brinkley-Rubinstein ◽  
Colleen Blue ◽  
...  

Abstract Web scraping involves using computer programs for automated extraction and organization of data from the Web for the purpose of further data analysis and use. It is frequently used by commercial companies, but also has become a valuable tool in epidemiological research and public health planning. In this paper, we explore ethical issues in a project that “scrapes” public websites of U.S. county jails as part of an effort to develop a comprehensive database (including individual-level jail incarcerations, court records and confidential HIV records) to enhance HIV surveillance and improve continuity of care for incarcerated populations. We argue that the well-known framework of Emanuel et al. (2000) provides only partial ethical guidance for the activities we describe, which lie at a complex intersection of public health research and public health practice. We suggest some ethical considerations from the ethics of public health practice to help fill gaps in this relatively unexplored area.


2017 ◽  
Author(s):  
Brian Rice ◽  
Travis Sanchez ◽  
Stefan Baral ◽  
Paul Mee ◽  
Keith Sabin ◽  
...  

UNSTRUCTURED To guide HIV prevention and treatment activities up to 2020, we need to generate and make better use of high quality HIV surveillance data. To highlight our surveillance needs, a special collection of papers in JMIR Public Health and Surveillance has been released under the title “Improving Global and National Responses to the HIV Epidemic Through High Quality HIV Surveillance Data.” We provide a summary of these papers and highlight methods for developing a new HIV surveillance architecture.


2018 ◽  
Vol 10 (1) ◽  
Author(s):  
Janelle Kibler ◽  
Scott McNabb ◽  
James Lavery ◽  
Ziad Memish ◽  
Affan Shaikh ◽  
...  

ObjectiveThe goal of this editorial is to shed light on the lack of transparency that exists in the sharing of Public Health data and to reverse this presumption in favour of open public health information properly vetted and openly accessible. Open public health information is a critical step to revitalize public health practice and is a human right.IntroductionPublic health practice that prevents, detects, and responds to communicable and noncommunicable disease threats is hindered by poor access to public health data and information. This includes timely sharing of case-based information, respecting patent and publication rights, and the ethical sharing of specimens. Disagreements about information shared and under what circumstances plus who has right to the data, clinical specimens, and their derivative products impede research and countermeasures. Delayed or inaction by public health authorities undermines trust and exacerbates the crisis. Evident in 2014 by the delayed Public Health Emergency of International Concern declaration of the Ebola virus outbreak in West Africa by the World Health Organization, the governing presumption is that access to public health information should be restricted, constrained, or even hoarded; this is a failed approach. This lack of transparency prevents information availability when and where it is needed and obstructs public health efforts to efficiently and ethically prevent, detect, and respond to emerging threats. A better way forward is to reverse this presumption in favour of open public health information properly vetted and openly accessible. Open public health information is a critical step to revitalize public health practice and is a human right.While there is limited global consensus among scientists and public health practitioners on best practices to guide national health authorities, researchers, NGOs, and industry as they navigate the ethical, political, technical, and economic challenges associated with the sharing of essential public health information (e.g., pathogen isolates, clinical specimens, and patient-related data), grounding this discussion on the guiding principles of open public health information can help navigate the complex privacy, security, communication, and access needs, and ensure that collaboration and sharing occur in a manner that is ethically and socially just, efficient, and equitable. Built on existing governance frameworks such as the International Health Regulations (IHRs) and the Pandemic Influenza Preparedness Framework (PIP), open public health can transform public health surveillance, allowing for the rapid sharing of data and products during outbreaks for mutual benefit and enhanced global health security.MethodsThis abstract represents a larger editorial style manuscript, thus no methods were developed in the abstract.ResultsThis editorial style manuscript aims to reverse the presumption that public health data is damaging to one in favour of open public health information properly vetted and openly accessible.ConclusionsSimilar to other open movements (i.e., open data, open government, open development, and open science) that seek to address the world’s greatest challenges through transparency, collaboration, reuse of and free access to ideas, open public health offers an ideal solution to overcome the challenges in the 21st century.


2018 ◽  
Author(s):  
Auntre Hamp ◽  
Rupali Doshi ◽  
Garret Lum ◽  
Adam Allston

BACKGROUND Accurate HIV surveillance data is essential to monitoring the trends to end the HIV epidemic. Due to strict policies around data security and confidentiality, HIV surveillance data has not been routinely shared across jurisdictions, with the exception of a biannual case-by-case review process to identify and remove duplicate cases (Routine Interstate Duplicate Review, RIDR). HIV surveillance estimates for the District of Columbia (DC) are complicated by migration and care-seeking throughout the metropolitan area, which includes Maryland (MD) and Virginia (VA). To address gaps in HIV surveillance data, the health departments of DC, MD and VA established HIV surveillance data sharing agreements. While the Black Box (a privacy data integration tool external to the health departments) facilitated the secure exchange of data between DC, MD and VA, its previous iterations were limited by frequency and scope of information exchanged. The health departments of DC, MD and VA engaged in data sharing to further improve HIV surveillance estimates. OBJECTIVE The objectives of this evaluation were to assess the impact of cross-jurisdictional data-sharing on the estimation of persons living with HIV (PLWH) in DC and the reduction of cases in the RIDR process. METHODS The data sharing agreements established in 2014 allowed for the exchange of HIV case information (e.g. current residential address) and laboratory information (e.g. test types, result dates and results) from the enhanced HIV/AIDS Reporting System (eHARS). Regular data exchanges began in 2017. The participating jurisdictions transferred data (via secure file transfer protocol) for individuals having a residential address in a partnering jurisdiction at the time of HIV diagnosis and/or evidence of receiving HIV-related services at a facility located in a partnering jurisdiction. DC DOH compared the data received to the DC eHARS and imported updated data that matched to existing cases. Evaluation of changes in current residential address and HIV prevalence were conducted by comparing data before and after the HIV surveillance data exchanges. RESULTS After the HIV surveillance data exchange, an average of 390 fewer cases were estimated to be living in DC for each year from 2012 to 2016. Among cases with a residential status change, 66.4% of cases had relocated to MD and 19.8% had relocated to VA; the majority of these cases had relocated to counties bordering DC. Relocation in and out of DC differed by mode of transmission, race/ethnicity, age group and gender. After the data exchange, the volume of HIV cases needing RIDR decreased by 74% for DC-MD and 81% for DC-VA. CONCLUSIONS The HIV surveillance data exchange between the public health departments of DC, MD and VA reduced the number of cases misclassified as DC residents and reduced the number of cases needing RIDR. Continued data exchanges will enhance the ability of the DC DOH to monitor the local HIV epidemic.


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