Public Health Data Collection and Implementation of the Revised Common Rule

2019 ◽  
Vol 47 (2) ◽  
pp. 232-237 ◽  
Author(s):  
Lisa M. Lee

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.

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.


2021 ◽  
Vol 40 (1) ◽  
pp. 61-79
Author(s):  
Carmela Alcántara ◽  
Shakira F. Suglia ◽  
Irene Perez Ibarra ◽  
A. Louise Falzon ◽  
Elliot McCullough ◽  
...  

2017 ◽  
Vol 9 (7) ◽  
pp. 1106 ◽  
Author(s):  
Amruta Nori-Sarma ◽  
Anobha Gurung ◽  
Gulrez Azhar ◽  
Ajit Rajiva ◽  
Dileep Mavalankar ◽  
...  

2017 ◽  
Vol 133 (1) ◽  
pp. 45-54 ◽  
Author(s):  
Alfonso Rodriguez-Lainz ◽  
Mariana McDonald ◽  
Maureen Fonseca-Ford ◽  
Ana Penman-Aguilar ◽  
Stephen H. Waterman ◽  
...  

Objective: Despite increasing diversity in the US population, substantial gaps in collecting data on race, ethnicity, primary language, and nativity indicators persist in public health surveillance and monitoring systems. In addition, few systems provide questionnaires in foreign languages for inclusion of non-English speakers. We assessed (1) the extent of data collected on race, ethnicity, primary language, and nativity indicators (ie, place of birth, immigration status, and years in the United States) and (2) the use of data-collection instruments in non-English languages among Centers for Disease Control and Prevention (CDC)–supported public health surveillance and monitoring systems in the United States. Methods: We identified CDC-supported surveillance and health monitoring systems in place from 2010 through 2013 by searching CDC websites and other federal websites. For each system, we assessed its website, documentation, and publications for evidence of the variables of interest and use of data-collection instruments in non-English languages. We requested missing information from CDC program officials, as needed. Results: Of 125 data systems, 100 (80%) collected data on race and ethnicity, 2 more collected data on ethnicity but not race, 26 (21%) collected data on racial/ethnic subcategories, 40 (32%) collected data on place of birth, 21 (17%) collected data on years in the United States, 14 (11%) collected data on immigration status, 13 (10%) collected data on primary language, and 29 (23%) used non-English data-collection instruments. Population-based surveys and disease registries more often collected data on detailed variables than did case-based, administrative, and multiple-source systems. Conclusions: More complete and accurate data on race, ethnicity, primary language, and nativity can improve the quality, representativeness, and usefulness of public health surveillance and monitoring systems to plan and evaluate targeted public health interventions to eliminate health disparities.


2011 ◽  
Vol 21 (6) ◽  
pp. 1031-1043 ◽  
Author(s):  
C. M. Bann ◽  
R. Kobau ◽  
M. A. Lewis ◽  
M. M. Zack ◽  
C. Luncheon ◽  
...  

2016 ◽  
Vol 8 (1) ◽  
Author(s):  
Peter Hicks ◽  
Julie A. Pavlin ◽  
Atar Baer ◽  
David J. Swenson ◽  
Rebecca Lampkins ◽  
...  

The "Preliminary Look into the Icd9/10 Transition Impact on Public Health Surveillance" roundtable will provide a forum for the syndromic surveillance Community of Practice (CoP) to discuss the public health impacts from the ICD-10-CM conversion, and to support jurisdictional public health practices with this transition. The discussion will be aimed at identifying conversion challenges, solutions, and best practices.


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