scholarly journals Developing Ethical Practices for Public Health Research Data Sharing in South Africa

2015 ◽  
Vol 10 (3) ◽  
pp. 290-301 ◽  
Author(s):  
Spencer G. Denny ◽  
Blessing Silaigwana ◽  
Douglas Wassenaar ◽  
Susan Bull ◽  
Michael Parker
Keyword(s):  
Public Health ◽  
South Africa ◽  
Data Sharing ◽  
Health Research ◽  
Public Health Research ◽  
Research Data ◽  
Ethical Practices

scholarly journals Research Stakeholders’ Views on Benefits and Challenges for Public Health Research Data Sharing in Kenya: The Importance of Trust and Social Relations

PLoS ONE ◽  
2015 ◽  
Vol 10 (9) ◽  
pp. e0135545 ◽  
Author(s):  
Irene Jao ◽  
Francis Kombe ◽  
Salim Mwalukore ◽  
Susan Bull ◽  
Michael Parker ◽  
...  
Keyword(s):  
Public Health ◽  
Data Sharing ◽  
Social Relations ◽  
Health Research ◽  
Public Health Research ◽  
Research Data

scholarly journals The Mutual Enablement of Research Data and Care

2021 ◽  
Author(s):  
Francisca Nordfalk
Keyword(s):  
Public Health ◽  
Health Research ◽  
Population Data ◽  
Public Health Research ◽  
Research Data ◽  
Ethnographic Approach ◽  
Explicit Consent ◽  
Research Population ◽  
Professional Care ◽  
Research Resources

Public health research depends on access to population data. This article is a study of the practices and the work enabling data collection for public health research. In Denmark, a blood sample is taken from practically every single newborn baby through a national screening programme. These samples can be combined with other health data and used for research purposes without explicit consent from those giving the samples. With an ethnographic approach, I study the practices, the work and the workers of the Danish NDBS samples, and explore how newborn babies come to serve as an important national research resource. From these studies, I argue that the making of national research resources in this way is ‘mutual enablement’ of research data and care. The work of both health professionals and researchers mutually enables professional care and opportunities for collection of samples and data for research. It is through this mutual enablement of research data and care that newborn babies become a national research population.

scholarly journals Factors Related to Personal Health Data Sharing: Data Usefulness, Sensitivity and Anonymity

2021 ◽  
Author(s):  
Samar Helou ◽  
Victoria Abou-Khalil ◽  
Elie El Helou ◽  
Ken Kiyono
Keyword(s):  
Public Health ◽  
Data Sharing ◽  
Health Research ◽  
Online Survey ◽  
Public Health Research ◽  
Health Data ◽  
Perceived Usefulness ◽  
Personal Health ◽  
Sociodemographic Characteristics ◽  
Region Of Residence

Using an online survey, we examined the relationships between the perceived usefulness, sensitivity, and anonymity of personal health data and people’s willingness to share it with researchers. An analysis of 112 responses showed that people’s willingness and perceptions are related to the type of the data, their trust in the data’s anonymity, and their personal sociodemographic characteristics. In general, we found that people do not completely trust that their identities remain anonymous when sharing data anonymously with researchers. We also found that they are more willing to share personal health data with researchers if they perceive it as useful for public health research, not sensitive, and if they trust that their identity will remain anonymous after sharing it. We also found that people’s age, gender, occupation, and region of residence may be related to their perceptions regarding the sharing of personal health data.

scholarly journals Modelling Medications for Public Health Research

2016 ◽  
Vol 8 (2) ◽  
Author(s):  
Deborah Van Gaans ◽  
S Ahmed ◽  
K D'Onise ◽  
J Moyon ◽  
G Caughey ◽  
...  
Keyword(s):  
Public Health ◽  
Health Research ◽  
Public Health Research ◽  
Research Data ◽  
Data Management System ◽  
General Notion ◽  
Health Issues ◽  
Health Records ◽  
Service Community ◽  
Patient Health

Most patients with chronic disease are prescribed multiple medications, which are recorded in their personal health records. This is rich information for clinical public health researchers but also a challenge to analyse.  This paper describes the method that was undertaken within the Public Health Research Data Management System (PHReDMS) to map medication data retrieved from individual patient health records for population health researcher’s use.  The PHReDMS manages clinical, health service, community and survey research data within a secure web environment that allows for data sharing amongst researchers.  The PHReDMS is currently used by researchers to answer a broad range of questions, including monitoring of prescription patterns in different population groups and geographic areas with high incidence/prevalence of chronic renal, cardiovascular, metabolic and mental health issues.  In this paper, we present the general notion of abstraction network, a higher level network that sits above a terminology and offers compact and more easily understandable view of its content. We demonstrate the utilisation of abstraction network methodology to examine medication data from electronic medical records to allow a compact and more easily understandable view of its content.

scholarly journals Involving Research Stakeholders in Developing Policy on Sharing Public Health Research Data in Kenya

2015 ◽  
Vol 10 (3) ◽  
pp. 264-277 ◽  
Author(s):  
Irene Jao ◽  
Francis Kombe ◽  
Salim Mwalukore ◽  
Susan Bull ◽  
Michael Parker ◽  
...  
Keyword(s):  
Public Health ◽  
Health Research ◽  
Public Health Research ◽  
Research Data

scholarly journals Ethical and practical issues to consider in the governance of genomic and human research data and data sharing in South Africa: a meeting report

2019 ◽  
Vol 2 ◽  
pp. 15
Author(s):  
Ciara Staunton ◽  
Rachel Adams ◽  
Edward S. Dove ◽  
Natalie Harriman ◽  
Lyn Horn ◽  
...  
Keyword(s):  
South Africa ◽  
Data Sharing ◽  
Data Protection ◽  
Health Research ◽  
Personal Information ◽  
Open Science ◽  
Research Data ◽  
Genomic Research ◽  
Meeting Report ◽  
Challenges And Opportunities

Genomic research and biobanking has undergone exponential growth in Africa and at the heart of this research is the sharing of biospecimens and associated clinical data amongst researchers in Africa and across the world. While this move towards open science is progressing, there has been a strengthening internationally of data protection regulations that seek to safeguard the rights of data subjects while promoting the movement of data for the benefit of research. In line with this global shift, many jurisdictions in Africa are introducing data protection regulations, but there has been limited consideration of the regulation of data sharing for genomic research and biobanking in Africa. South Africa (SA) is one country that has sought to regulate the international sharing of data and has enacted the Protection of Personal Information Act (POPIA) 2013 that will change the governance and regulation of data in SA, including health research data, once it is in force. To identify and discuss challenges and opportunities in the governance of data sharing for genomic and health research data in SA, a two-day meeting was convened in February 2019 in Cape Town, SA with over 30 participants with expertise in law, ethics, genomics and biobanking science, drawn from academia, industry, and government. This report sets out some of the key challenges identified during the workshop and the opportunities and limitations of the current regulatory framework in SA.

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