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 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 The concept and measurement of race and their relationship to public health: a review focused on Brazil and the United States

2004 ◽  
Vol 20 (3) ◽  
pp. 660-678 ◽  
Author(s):  
Claudia Travassos ◽  
David R. Williams
Keyword(s):  
Public Health ◽  
United States ◽  
Data Quality ◽  
Health Research ◽  
Medical Records ◽  
The United States ◽  
Public Health Research ◽  
Validity And Reliability ◽  
Quality Issues

Race has been widely used in studies on health and healthcare inequalities, especially in the United States. Validity and reliability problems with race measurement are of concern in public health. This article reviews the literature on the concept and measurement of race and compares how the findings apply to the United States and Brazil. We discuss in detail the data quality issues related to the measurement of race and the problems raised by measuring race in multiracial societies like Brazil. We discuss how these issues and problems apply to public health and make recommendations about the measurement of race in medical records and public health research.

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.

scholarly journals Reporting the methods used in public health research and practice

2017 ◽  
Vol 1 ◽  
pp. 89-89 ◽  
Author(s):  
Donna F. Stroup ◽  
C. Kay Smith ◽  
Benedict I. Truman
Keyword(s):  
Public Health ◽  
Health Research ◽  
Public Health Research ◽  
Research And Practice
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