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 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 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 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 Medical records confidentiality and public health research: two values at stake? An italian survey focus on individual preferences

2015 ◽  
Vol 4 (1) ◽  
Author(s):  
Virgilia Toccaceli ◽  
Corrado Fagnani ◽  
Maria Antonietta Stazi
Keyword(s):  
Public Health ◽  
Health Research ◽  
Medical Records ◽  
Great Majority ◽  
Public Health Research ◽  
Research Activities ◽  
Italian Survey ◽  
Explicit Consent ◽  
Hospital Discharge Records ◽  
Privacy And Confidentiality

In a time when Europe is preparing to introduce new regulations on privacy protection, we conducted a survey among 1700 twins enrolled in the Italian Twin Register about the access and use of their medical records for public health research without explicit informed consent. A great majority of respondents would refuse or are doubtful about the access and use of hospital discharge records or clinical data without their explicit consent. Young and female individuals represent the modal profile of these careful people. As information retrieved from medical records is crucial for progressing knowledge, it is important to promote a better understanding of the value of public health research activities among the general population. Furthermore, public opinions are relevant to policy making, and concerns and preferences about privacy and confidentiality in research can contribute to the design of procedures to exploit medical records effectively and customize the protection of individuals’ medical data.

scholarly journals Utilizing asynchronous email interviews for health research: overview of benefits and drawbacks

2021 ◽  
Vol 14 (1) ◽  
Author(s):  
Michelle Amri ◽  
Christina Angelakis ◽  
Dilani Logan
Keyword(s):  
Public Health ◽  
Data Collection ◽  
Data Quality ◽  
Health Research ◽  
Geographic Location ◽  
Public Health Research ◽  
Data Accuracy ◽  
Global Public Health ◽  
Snowball Sampling ◽  
Face To Face

Abstract Objective Through collating observations from various studies and complementing these findings with one author’s study, a detailed overview of the benefits and drawbacks of asynchronous email interviewing is provided. Through this overview, it is evident there is great potential for asynchronous email interviews in the broad field of health, particularly for studies drawing on expertise from participants in academia or professional settings, those across varied geographical settings (i.e. potential for global public health research), and/or in circumstances when face-to-face interactions are not possible (e.g. COVID-19). Results Benefits of asynchronous email interviewing and additional considerations for researchers are discussed around: (i) access transcending geographic location and during restricted face-to-face communications; (ii) feasibility and cost; (iii) sampling and inclusion of diverse participants; (iv) facilitating snowball sampling and increased transparency; (v) data collection with working professionals; (vi) anonymity; (vii) verification of participants; (viii) data quality and enhanced data accuracy; and (ix) overcoming language barriers. Similarly, potential drawbacks of asynchronous email interviews are also discussed with suggested remedies, which centre around: (i) time; (ii) participant verification and confidentiality; (iii) technology and sampling concerns; (iv) data quality and availability; and (v) need for enhanced clarity and precision.

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