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Perspectives regarding privacy in clinical research among research professionals from the Arab region: an exploratory qualitative study.

ABSTRACT: BACKGROUND:Protecting the privacy of research participants is widely recognized as one of the standard ethical requirements for clinical research. It is unknown, however, how research professionals regard concepts of privacy as well as the situations in the research setting that require privacy protections. The aim of this study was to explore the views of research professionals from Arab countries regarding concepts and scope of privacy that occur in clinical research. METHODS:We adopted an exploratory qualitative approach by the use of focus group discussions. We recruited individuals involved in research from Egypt and Morocco. We analyzed focus group data via a constant comparison approach, which consisted of close reading of the transcribed interviews followed by coding and then determining themes and subthemes. RESULTS:Between August 2016 and July 2018, we conducted nine focus group discussions. Respondents discussed several privacy issues that occurred before the research began (e.g., recruitment practices); during research (e.g., data collection and physical exams), and after the research (e.g., secondary use of data and data sharing). Respondents revealed their perspectives of patients towards privacy in the clinical and research settings and mentioned that patients are more likely to permit access to their privacy in the clinical setting compared with research setting due to the existence of benefits and trust in clinical care. Respondents also recommended training regarding data protections for individuals involved in research. CONCLUSIONS:Our study shows that research professionals discussed a range of privacy issues that are present during the different stages of research. We recommend 1) development of standards regarding privacy protections during recruitment efforts; 2) additional training for individuals involved in research regarding best practices with data security in secondary research; 3) a quantitative study involving investigators and REC members to determine their knowledge, attitudes and practices regarding privacy issues that occur in research; and 4) a quantitative study involving patients to elicit their views regarding their privacy concerns in research.

SUBMITTER: Adarmouch L

PROVIDER: S-EPMC7158072 | biostudies-literature | 2020 Apr

REPOSITORIES: biostudies-literature

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Perspectives regarding privacy in clinical research among research professionals from the Arab region: an exploratory qualitative study.

Adarmouch Latifa L Felaefel Marwan M Wachbroit Robert R Silverman Henry H

BMC medical ethics 20200415 1

<h4>Background</h4>Protecting the privacy of research participants is widely recognized as one of the standard ethical requirements for clinical research. It is unknown, however, how research professionals regard concepts of privacy as well as the situations in the research setting that require privacy protections. The aim of this study was to explore the views of research professionals from Arab countries regarding concepts and scope of privacy that occur in clinical research.<h4>Methods</h4>We ...[more]

PMID: 32293418

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Project description:Background Nutrition during pregnancy has lifelong impacts on the mother and fetus. In Ethiopia, nearly a third of pregnant women experience undernutrition. When designing nutrition interventions during pregnancy, it is important to understand existing dietary perspectives and practices in local communities. Objectives To explore the processes that shape dietary perspectives and practices during pregnancy in rural West Gojjam and South Gondar Zones of the Amhara region in Ethiopia. Methods From October to November 2018, we conducted 40 in-depth interviews with pregnant women (n = 16), family members (n = 12), and healthcare providers (n = 12) using a semistructured interview guide. Interviews were conducted in Amharic, transcribed in Amharic, and translated into English. We used a thematic analysis approach to organize data per the predefined topic areas and identify emerging themes, as well as barriers and enablers to healthy nutrition during pregnancy. Results Pregnant women and their family members recognized the benefits of a diversified diet to promote the health of the mother and the fetus. However, participants reported low dietary diversity because of limited access to nutritious foods and particular perspectives on food restrictions during pregnancy. The common practice of religious fasting also limited pregnant women’s dietary intake. Women reported restricting their food intake in later pregnancy because of loss of appetite, as well as concerns about having a large infant, which might complicate delivery. Intake of locally made alcoholic drinks (Tella) was reported among pregnant women because participants thought it had low levels of alcohol that would not harm the fetus. Conclusions Although participants understood the importance of a healthy and diverse diet in pregnancy, we identified several barriers and perspectives regarding nutrition during pregnancy. Low income and lack of access to diverse foods, particularly in certain seasons, religious fasting, intentional food restrictions to limit the size of the infant, and alcohol use were commonly reported. Locally appropriate counseling and interventions should be developed, with an emphasis on increasing access to and consumption of diverse foods. Curr Dev Nutr 2023;x:xx.

Project description:ObjectivesCrime reports of suicide incidents routinely feature in the Indian mass media, with minimal coverage of suicide as a broader public health issue. To supplement our recently published content analysis study, we undertook qualitative interviews to examine media professionals' perspectives and experiences in relation to media reporting of suicide-related news in India.Design and settingIn 2017-2018, we undertook semistructured qualitative interviews with media professionals with experience reporting on suicide-related news. A semistructured interview guide was designed to initiate discussions around their perspectives and experiences in relation to reporting on suicide. Interviews were digitally audio-recorded and transcribed, and a deductive and inductive approach to thematic analysis was used.ParticipantsTwenty-eight interviews were undertaken with media professionals in Delhi, Chandigarh and Chennai.ResultsA clear role for media in suicide prevention framed around educating and informing the public was articulated by several participants and a majority of participants also reported concerns and anecdotal accounts that their reporting may negatively influence vulnerable people in the population. Nonetheless, a fatalistic attitude towards suicide was evident among several participants including dismissing or minimising concerns around imitation suicides. Several participants also expressed doubts around the quality of suicide helplines in India and were hesitant to add such contact details to their reports. Participants were largely very receptive to the idea of developing voluntary media guidelines for the Indian context, although doubts were raised around compliance unless additional initiatives were taken to engage media professionals at the highest levels.ConclusionsOur findings reveal the perspectives of media professionals operating in the Indian context and can be used to support constructive partnerships between media professionals and suicide prevention experts. There is a clear need for a genuine and sustained partnership between suicide prevention experts and media professionals at all levels.

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Dataset Information

Perspectives regarding privacy in clinical research among research professionals from the Arab region: an exploratory qualitative study.

Publications

Perspectives regarding privacy in clinical research among research professionals from the Arab region: an exploratory qualitative study.

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