scholarly journals Participatory Disease Surveillance Systems: Ethical Framework (Preprint)

2018 ◽  
Author(s):  
Lester Darryl Geneviève ◽  
Andrea Martani ◽  
Tenzin Wangmo ◽  
Daniela Paolotti ◽  
Carl Koppeschaar ◽  
...  
Keyword(s):  
Public Health ◽  
Research Ethics ◽  
Public Health Surveillance ◽  
Ethical Issues ◽  
Well Being ◽  
Health Surveillance ◽  
Ethical Framework ◽  
Surveillance Systems ◽  
Ethical Challenges ◽  
Participatory Surveillance

UNSTRUCTURED Advances in information technology are changing public health at an unprecedented rate. Participatory surveillance systems are contributing to public health by actively engaging digital (eg, Web-based) communities of volunteer citizens to report symptoms and other pertinent information on public health threats and also by empowering individuals to promptly respond to them. However, this digital model raises ethical issues on top of those inherent in traditional forms of public health surveillance. Research ethics are undergoing significant changes in the digital era where not only participants’ physical and psychological well-being but also the protection of their sensitive data have to be considered. In this paper, the digital platform of Influenzanet is used as a case study to illustrate those ethical challenges posed to participatory surveillance systems using digital platforms and mobile apps. These ethical challenges include the implementation of electronic consent, the protection of participants’ privacy, the promotion of justice, and the need for interdisciplinary capacity building of research ethics committees. On the basis of our analysis, we propose a framework to regulate and strengthen ethical approaches in the field of digital public health surveillance.

scholarly journals Evaluation of Measles Surveillance Systems in Ginnir District, Bale Zone, Southeast Ethiopia: A Concurrent Embedded Mixed Quantitative/Qualitative Study 

2020 ◽  
Author(s):  
Falaho Sani ◽  
Mohammed Hasen ◽  
Mohammed Seid ◽  
Nuriya Umer
Keyword(s):  
Public Health ◽  
Qualitative Study ◽  
Surveillance System ◽  
Public Health Surveillance ◽  
Health Surveillance ◽  
Health Facilities ◽  
Surveillance Data ◽  
Surveillance Systems ◽  
Southeast Ethiopia ◽  
Bale Zone

Abstract Background: Public health surveillance systems should be evaluated periodically to ensure that the problems of public health importance are being monitored efficiently and effectively. Despite the widespread measles outbreak in Ginnir district of Bale zone in 2019, evaluation of measles surveillance system has not been conducted. Therefore, we evaluated the performance of measles surveillance system and its key attributes in Ginnir district, Southeast Ethiopia.Methods: We conducted a concurrent embedded mixed quantitative/qualitative study in August 2019 among 15 health facilities/study units in Ginnir district. Health facilities are selected using lottery method. The qualitative study involved purposively selected 15 key informants. Data were collected using semi-structured questionnaire adapted from Centers for Disease Control and Prevention guidelines for evaluating public health surveillance systems through face-to-face interview and record review. The quantitative findings were analyzed using Microsoft Excel 2016 and summarized by frequency and proportion. The qualitative findings were narrated and summarized based on thematic areas to supplement the quantitative findings.Results: The structure of surveillance data flow was from the community to the respective upper level. Emergency preparedness and response plan was available only at the district level. Completeness of weekly report was 95%, while timeliness was 87%. No regular analysis and interpretations of surveillance data, and the supportive supervision and feedback system was weak. The participation and willingness of surveillance stakeholders in implementation of the system was good. The surveillance system was found to be useful, easy to implement, representative and can accommodate and adapt to changing conditions. Report documentation and quality of data was poor at lower level health facilities. Stability of the system has been challenged by shortage of budget and logistics, staff turnover and lack of update trainings.Conclusions: The surveillance system was acceptable, useful, simple, flexible and representative. Data quality, timeliness and stability of the system were attributes that require improvement. The overall performance of measles surveillance system in the district was poor. Hence, regular analysis of data, preparation and dissemination of epidemiological bulletin, capacity building and regular supervision and feedback are recommended to enhance performance of the system.

Electronic notifiable disease reporting system from primary care health centres in Qatar: a comparison of paper-based versus electronic reporting

2020 ◽  
Vol 6 (1) ◽  
pp. 32-38
Author(s):  
Mohamed Ahmed Syed ◽  
Hanan Al Mujalli ◽  
Catherine Kiely ◽  
Hamda Abdulla A/Qotba ◽  
Khalid Elawad ◽  
...  
Keyword(s):  
Public Health ◽  
Disease Surveillance ◽  
Public Health Surveillance ◽  
Reporting System ◽  
Communicable Disease ◽  
Well Being ◽  
Health Surveillance ◽  
Disease Notification ◽  
Electronic Reporting ◽  
Health Centres

Communicable disease outbreaks can spread rapidly, causing enormous losses to individual health, national economies and social well-being. Therefore, communicable disease surveillance is essential for protecting public health. In Qatar, electronic reporting from primary health centres was proposed as a means of improving disease notification, replacing a paper-based method of reporting (via internal mail, facsimile, email or telephone), which has disadvantages and requires active cooperation and engagement of staff. This study is a predescriptive and postdescriptive analysis, which compared disease notifications received from electronic and paper-based systems during 3-month evaluation periods (quarter 2 in 2016 and quarter 2 in 2018 for paper-based and electronic reporting, respectively) in terms of comprehensiveness, timeliness and completeness. For the 23 notifiable diseases included in this study, approximately twice as many notifications were received through the electronic reporting system as from the paper-based reporting system, demonstrating it is more comprehensive. An overall increase in notifications is likely to have a positive public health impact in Qatar. 100% of electronic notifications were received in a timely manner, compared with 28% for paper-based notifications. Findings of the study show that electronic reporting presents a revolutionary opportunity to advance public health surveillance. It is recommended that electronic reporting be rolled out more widely to improve the completeness, stability and representativeness of the national public health surveillance system in Qatar as well as other countries.

Sexual and Gender Minorities, Public Health, and Ethics

2019 ◽  
pp. 231-244
Author(s):  
Tonya Littlejohn ◽  
Tonia Poteat ◽  
Chris Beyrer
Keyword(s):  
Public Health ◽  
Public Health Surveillance ◽  
Health Surveillance ◽  
Health Needs ◽  
Health Issues ◽  
Sexual And Gender Minorities ◽  
Ethical Challenges ◽  
Gender Minorities ◽  
The Social ◽  
And Gender

Sexual and gender minorities (LGBT persons) are more visible and mobilized than ever. In some countries, that visibility and activism have contributed to the advancement of sexual and gender rights. Nevertheless, and despite those gains, stigma, discrimination, and criminalization of these populations persist and have impeded efforts to address their public health needs. As a result, sexual and gender minorities continue to experience a range of health disparities, and overall face a disproportionately high burden of mental health issues, HIV/AIDS, and other illnesses. This chapter explores core ethical challenges and debates that impact health promotion and prevention efforts with sexual and gender minorities, with a focus on issues arising in public health surveillance and interventions, and on understanding the social and political context that impacts the lived reality of sexual and gender minorities.

In the Name of Population Well-Being: The Case for Public Health Surveillance

2016 ◽  
Vol 41 (1) ◽  
pp. 119-128 ◽  
Author(s):  
Amy L. Fairchild ◽  
Ronald Bayer
Keyword(s):  
Public Health ◽  
Human Rights ◽  
Chronic Disease ◽  
Informed Consent ◽  
Disease Surveillance ◽  
Public Health Surveillance ◽  
Well Being ◽  
Health Surveillance ◽  
Public Health Activity ◽  
Individual Informed Consent

AbstractSurveillance is the radar of public health. Without tracking, often by name, the incidence and prevalence of both infectious and chronic disease, health officials would be unable to understand where and how to potentially intervene or what resources might be required to protect populations. Surveillance without individual informed consent has been challenged in the name of both bioethics and human rights. In this article we contend that a robust conception of public health not only justifies surveillance but, without disregarding the need to respect individuals, provides an affirmative duty to engage in surveillance. There may be social and political circumstances in which the names of those reported cannot be protected from unwarranted disclosure and misuse for ends that have little to do with protecting the public's health. But while the potential for misuse requires an ongoing, searching scrutiny of disease surveillance, remote or hypothetical threats should not serve to undermine this vital public health activity.

Development and psychometric evaluation of the public health surveillance well-being scale

2011 ◽  
Vol 21 (6) ◽  
pp. 1031-1043 ◽  
Author(s):  
C. M. Bann ◽  
R. Kobau ◽  
M. A. Lewis ◽  
M. M. Zack ◽  
C. Luncheon ◽  
...  
Keyword(s):  
Public Health ◽  
Public Health Surveillance ◽  
Psychometric Evaluation ◽  
Well Being ◽  
Health Surveillance ◽  
The Public

scholarly journals Passive Data Use for Digital Public Health Surveillance in a Post-Pandemic World (Preprint)

2021 ◽  
Author(s):  
John Kilgallon ◽  
Ishaan Ashwini Tewarie ◽  
Marike L.D. Broekman ◽  
Aakanksha Rana ◽  
Timothy R. Smith
Keyword(s):  
Public Health ◽  
Public Health Surveillance ◽  
Ethical Issues ◽  
User Participation ◽  
Health Surveillance ◽  
Collective Consciousness ◽  
Active User ◽  
Patient Reported ◽  
Passive Data ◽  
Moral Frameworks

UNSTRUCTURED There is a fundamental need to establish the most ethical and effective way of tracking disease in the post-pandemic era. The ubiquity of mobile phones generating passive data (collected without active user participation) has become a tool for tracking disease. Although discussions of pragmatism or economic issues tend to guide public health decisions, ethical issues are the foremost public concern. Thus, officials must look to history and current moral frameworks to avoid past mistakes and ethical pitfalls. Past pandemics demonstrate that the aftermath is the most effective time to make health policy decisions. However, sophisticated analyses of passive data for digital public health surveillance have yet to be attempted, and there is no consensus on the best method to do so. Therefore, four patient-reported areas of concern must be addressed: (1) informed consent (2) privacy, (3) equity, and (4) ownership. Preparations must be undertaken proactively using the lessons fresh in our collective consciousness.

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