scholarly journals Transforming Public Health Surveillance Through Open Public Health Information

2018 ◽  
Vol 10 (1) ◽  
Author(s):  
Janelle Kibler ◽  
Scott McNabb ◽  
James Lavery ◽  
Ziad Memish ◽  
Affan Shaikh ◽  
...  
Keyword(s):  
Public Health ◽  
Health Information ◽  
Public Health Surveillance ◽  
Public Health Practice ◽  
Health Data ◽  
Health Surveillance ◽  
Health Practice ◽  
Public Health Data ◽  
Health Authorities ◽  
Public Health Information

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.

Tuberculosis surveillance and its discontents: the ethical paradox

2020 ◽  
Vol 24 (5) ◽  
pp. 9-14
Author(s):  
R. Bayer ◽  
A. L. Fairchild ◽  
M. Zignol ◽  
K. G. Castro
Keyword(s):  
Public Health ◽  
Public Health Surveillance ◽  
Ethical Issues ◽  
Human Subjects ◽  
Public Health Practice ◽  
Health Surveillance ◽  
World Health ◽  
Ethical Review ◽  
Health Practice ◽  
Health Organization

In June 2017, the World Health Organization issued the Guidelines on Ethical Issues in Public Health Surveillance. Using the frame of public health ethics, the guidance declared that countries have an affirmative duty to undertake surveillance and that the global community had an obligation to support those countries whose resources limited their capacity. The centrality of TB surveillance has long been recognized as a matter of public health practice and ethics. Nevertheless, contemporary global realities make clear that TB surveillance falls far short of the goal of uniform notification. It is this reality that necessitated the paradoxical turn to research studies that require informed consent and human subjects' ethical review, the very burdens that mandated notification were designed to overcome.

Public Health Data Collection and Implementation of the Revised Common Rule

2019 ◽  
Vol 47 (2) ◽  
pp. 232-237 ◽  
Author(s):  
Lisa M. Lee
Keyword(s):  
Public Health ◽  
Data Collection ◽  
Historical Development ◽  
Public Health Surveillance ◽  
Health Data ◽  
Health Surveillance ◽  
Common Rule ◽  
The Public ◽  
Public Health Data ◽  
First Time

For the first time, the revised Common Rule specifies that public health surveillance activities are not research. This article reviews the historical development of the public health surveillance exclusion and implications for other foundational public health practices.

scholarly journals Public Health Informatics in Global Health Surveillance: A Review

2021 ◽  
Vol 2 (2) ◽  
pp. 74-88
Author(s):  
Puteri Nureylia Amir ◽  
Mohd Fazeli Sazali ◽  
Loganathan Salvaraji ◽  
Nafsah Dulajis ◽  
Syed Sharizman Syed Abdul Rahim ◽  
...  
Keyword(s):  
Public Health ◽  
Health Informatics ◽  
Public Health Surveillance ◽  
New Technologies ◽  
Public Health Practice ◽  
Health Surveillance ◽  
Public Health Informatics ◽  
Health Practice ◽  
Disease Notification ◽  
Healthcare Facilities

   Background: Surveillance is the backbone for effective public health practice. Traditionally, surveillance system relies on the collection of information regarding health-related events through healthcare facilities, disease notification system from the physician, syndromic notification networks, selected sentinel healthcare facilities, or by event-based data. However, there are several limitations in using conventional surveillance.  Methods: With the advancement of technology and computer science, overcoming those limitations and complementing the traditional method has been recommended. Three leading emerging technologies are applied in public health surveillance: the internet of things, artificial intelligence, and blockchain.  Results: Application of informatics in public health surveillance could raise several issues including accessibility and affordability of innovations; public health informatics’ experts, law, and regulation to protect patients’ information; social and ethical considerations, norms, and standards of implementing new technologies; data ownership; privacy and sharing of information; biosecurity; biosafety; and cybersecurity.  Conclusion: This article aimed to review several applications of informatics system in public health surveillance practice and its several issues related to the use of technology. Several applications of informatics could be useful for incoming challenges in public health. However, application of informatics can pose significant issues and must be taken into consideration in public health practice. 

scholarly journals An implementation science approach to evaluating pathogen whole genome sequencing in public health

2021 ◽  
Vol 13 (1) ◽  
Author(s):  
Angeline S. Ferdinand ◽  
Margaret Kelaher ◽  
Courtney R. Lane ◽  
Anders Gonçalves da Silva ◽  
Norelle L. Sherry ◽  
...  
Keyword(s):  
Public Health ◽  
Whole Genome Sequencing ◽  
Genome Sequencing ◽  
Public Health Surveillance ◽  
Public Health Practice ◽  
Health Surveillance ◽  
Health Impacts ◽  
Whole Genome ◽  
Health Departments ◽  
Health Practice

Abstract Background Pathogen whole genome sequencing (WGS) is being incorporated into public health surveillance and disease control systems worldwide and has the potential to make significant contributions to infectious disease surveillance, outbreak investigation and infection prevention and control. However, to date, there are limited data regarding (i) the optimal models for integration of genomic data into epidemiological investigations and (ii) how to quantify and evaluate public health impacts resulting from genomic epidemiological investigations. Methods We developed the Pathogen Genomics in Public HeAlth Surveillance Evaluation (PG-PHASE) Framework to guide examination of the use of WGS in public health surveillance and disease control. We illustrate the use of this framework with three pathogens as case studies: Listeria monocytogenes, Mycobacterium tuberculosis and SARS-CoV-2. Results The framework utilises an adaptable whole-of-system approach towards understanding how interconnected elements in the public health application of pathogen genomics contribute to public health processes and outcomes. The three phases of the PG-PHASE Framework are designed to support understanding of WGS laboratory processes, analysis, reporting and data sharing, and how genomic data are utilised in public health practice across all stages, from the decision to send an isolate or sample for sequencing to the use of sequence data in public health surveillance, investigation and decision-making. Importantly, the phases can be used separately or in conjunction, depending on the need of the evaluator. Subsequent to conducting evaluation underpinned by the framework, avenues may be developed for strategic investment or interventions to improve utilisation of whole genome sequencing. Conclusions Comprehensive evaluation is critical to support health departments, public health laboratories and other stakeholders to successfully incorporate microbial genomics into public health practice. The PG-PHASE Framework aims to assist public health laboratories, health departments and authorities who are either considering transitioning to whole genome sequencing or intending to assess the integration of WGS in public health practice, including the capacity to detect and respond to outbreaks and associated costs, challenges and facilitators in the utilisation of microbial genomics and public health impacts.

Health Information Privacy and Public Health

2003 ◽  
Vol 31 (4) ◽  
pp. 663-671 ◽  
Author(s):  
James G. Hodge
Keyword(s):  
Public Health ◽  
Health Information ◽  
Public Health Practice ◽  
Health Data ◽  
Treatment Programs ◽  
Local Health ◽  
Health Authorities ◽  
Public Health Authorities ◽  
Public Health Functions ◽  
State And Local

Protecting the privacy of individually-identifiable health data and promoting the public’s health often seem at odds. Privacy advocates consistently seek to limit the acquisition, use, and disclosure of identifiable health information in governmental and private sector settings. Their concerns relate to misuses or wrongful disclosures of sensitive health data that can lead to discrimination and stigmatization against individuals. Public health practitioners, on the other hand, seek regular, ongoing access to and use of identifiable health information to accomplish important public health objectives. The collection and use of identifiable health data by federal, tribal, state, and local health authorities support nearly all public health functions and goals.Identifiable health data are the lifeblood of public health practice. When aggregated, these data help authorities monitor the incidence, patterns, and trends of injury and disease in populations. Health data are acquired by public health authorities through testing, screening, and treatment programs.

scholarly journals The Pathogen Genomics in Public HeAlth Surveillance Evaluation (PG-PHASE) Framework: An Implementation Science Approach to Evaluating Pathogen Whole Genome Sequencing in Public Health

2020 ◽  
Author(s):  
Angeline S Ferdinand ◽  
Margaret Kelaher ◽  
Courtney R Lane ◽  
Anders Gonçalves da Silva ◽  
Norelle Sherry ◽  
...  
Keyword(s):  
Public Health ◽  
Whole Genome Sequencing ◽  
Genome Sequencing ◽  
Public Health Surveillance ◽  
Public Health Practice ◽  
Health Surveillance ◽  
Health Impacts ◽  
Whole Genome ◽  
Health Departments ◽  
Health Practice

Abstract Background Pathogen whole genome sequencing (WGS) is being incorporated into public health surveillance and disease control systems worldwide and has the potential to make significant contributions to infectious disease surveillance, outbreak investigation and infection prevention and control. However, to date, there are limited data regarding: (i) the optimal models for integration of genomic data into epidemiological investigations, and (ii) how to quantify and evaluate public health impacts resulting from genomic epidemiological investigations. Methods We developed the Pathogen Genomics in Public HeAlth Surveillance Evaluation (PG-PHASE) Framework to guide examination of the use of WGS in public health surveillance and disease control. We illustrate the use of this framework with three pathogens as case studies: Listeria monocytogenes, Mycobacterium tuberculosis and SARS-CoV-2. Results The framework utilises an adaptable whole-of-system approach towards understanding how interconnected elements in the public health application of pathogen genomics contribute to public health processes and outcomes. The three phases of the PG-PHASE Framework are designed to support understanding of WGS laboratory processes, analysis, reporting and data sharing, and how genomic data are utilised in public health practice across all stages, from the decision to send an isolate or sample for sequencing to the use of sequence data in public health surveillance, investigation and decision-making. Importantly, the phases can be used separately or in conjunction, depending on the need of the evaluator. Subsequent to conducting evaluation underpinned by the framework, avenues may be developed for strategic investment or interventions to improve utilisation of whole genome sequencing. Conclusions Comprehensive evaluation is critical to support health departments, public health laboratories and other stakeholders to successfully incorporate microbial genomics into public health practice. The PG-PHASE Framework aims to assist public health laboratories, health departments and authorities who are either considering transitioning to whole genome sequencing or intending to assess the integration of WGS in public health practice, including the capacity to detect and respond to outbreaks and associated costs, challenges and facilitators in the utilisation of microbial genomics and public health impacts.

Disaggregation of Latina/o Child and Adult Health Data: A Systematic Review of Public Health Surveillance Surveys in the United States

2021 ◽  
Vol 40 (1) ◽  
pp. 61-79
Author(s):  
Carmela Alcántara ◽  
Shakira F. Suglia ◽  
Irene Perez Ibarra ◽  
A. Louise Falzon ◽  
Elliot McCullough ◽  
...  
Keyword(s):  
Public Health ◽  
United States ◽  
Systematic Review ◽  
Public Health Surveillance ◽  
The United States ◽  
Health Data ◽  
Health Surveillance ◽  
Adult Health

Structural Transphobia, Homophobia, and Biphobia in Public Health Practice: The Example of COVID-19 Surveillance

2021 ◽  
pp. e1-e7
Author(s):  
Randall L. Sell ◽  
Elise I. Krims
Keyword(s):  
Public Health ◽  
United States ◽  
Race And Ethnicity ◽  
Public Health Surveillance ◽  
Public Health Practice ◽  
The United States ◽  
Health Surveillance ◽  
Essential Information ◽  
And Gender ◽  
Public Health Surveillance System

Public health surveillance can have profound impacts on the health of populations, with COVID-19 surveillance offering an illuminating example. Surveillance surrounding COVID-19 testing, confirmed cases, and deaths has provided essential information to public health professionals about how to minimize morbidity and mortality. In the United States, surveillance has also pointed out how populations, on the basis of geography, age, and race and ethnicity, are being impacted disproportionately, allowing targeted intervention and evaluation. However, COVID-19 surveillance has also highlighted how the public health surveillance system fails some communities, including sexual and gender minorities. This failure has come about because of the haphazard and disorganized way disease reporting data are collected, analyzed, and reported in the United States, and the structural homophobia, transphobia, and biphobia acting within these systems. We provide recommendations for addressing these concerns after examining experiences collecting race data in COVID-19 surveillance and attempts in Pennsylvania and California to incorporate sexual orientation and gender identity variables into their pandemic surveillance efforts. (Am J Public Health. Published online ahead of print June 10, 2021: e1–e7. https://doi.org/10.2105/AJPH.2021.3062727 )

scholarly journals Public Health Surveillance: Electronic Reporting as a Point of Reference

2019 ◽  
Vol 47 (S2) ◽  
pp. 19-22 ◽  
Author(s):  
Jennifer Black ◽  
Rachel Hulkower ◽  
Walter Suarez ◽  
Shreya Patel ◽  
Brandon Elliott
Keyword(s):  
Public Health ◽  
Health Information ◽  
Health Professionals ◽  
Public Health Surveillance ◽  
Health Surveillance ◽  
Federal State ◽  
Electronic Reporting ◽  
Reporting Systems ◽  
State And Local ◽  
Point Of Reference

Federal, state, and local laws shape the use of health information for public health purposes, such as the mandated collection of data through electronic disease reporting systems. Health professionals can leverage these data to better anticipate and plan for the needs of communities, which is seen in the use of electronic case reporting.

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