Assessing Subject Privacy and Data Confidentiality in an Emerging Region for Clinical Trials: United Arab Emirates

Nair, Satish Chandrasekhar; Ibrahim, Halah

doi:10.1080/08989621.2014.942452

Cited by 17 publications

(24 citation statements)

References 23 publications

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“…The present study reviewed 314 cases of salivary gland tumours in the past twenty-five years (1998–2014) using medical records, both in electronic and paper formats. A Hospital Information System (or Malaffi which means ‘my_file’ in Arabic) was implemented in 2008 [ 7 ]. Among the salivary gland tumours, predominance was for benign (74%) type.…”

Section: Discussionmentioning

confidence: 99%

“…The UAE is a multiethnic, multi-cultural nation with a population of almost eight million at a ratio of 1:7 (UAE nationals to expatriates) [ 6 ]. Abu Dhabi, the capital and the largest among the seven emirates of the UAE, and Dubai have witnessed a surge in the number of expatriates from all over the world, especially Asia, Middle East, Africa, and Europe since the year 2000 [ 7 ]. With the rapidly increasing population, the region has seen an increase in the number of cancer deaths, especially in the fifth and sixth decades of life, both for expatriates and nationals [ 8 ].…”

Section: Introductionmentioning

confidence: 99%

“…A wide range of variation follows site distribution, incidence, and histological types of SGT, although pleomorphic adenoma is reported to be the most common [ 2 ]. Adenoid cystic carcinoma and mucoepidermoid carcinoma are the most common malignant SGT [ 2 , 7 ]. The parotid gland, followed by the submandibular gland, and the palate are most often affected by the SGT and the sublingual being the least [ 2 ].…”

Section: Introductionmentioning

confidence: 99%

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Characteristics of salivary gland tumours in the United Arab Emirates

Sarraj

Nair

Siraj

et al. 2015

ecancer

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Salivary gland tumours (SGT) are relatively rare cancers characterised by striking morphological diversity and wide variation in the global distribution of SGT incidence. Given the proximity to the head and neck structures, management of SGT has been clinically difficult. To the best of our knowledge, there are no epidemiological studies on SGT from the United Arab Emirates (UAE) or the Gulf Cooperation Council Countries (GCC). Patient charts (N = 314) and associated pathological records were systematically reviewed between the years 1998–2014. Predominance of benign (74%) compared with malignant (26%) SGT was observed. Among the 83 malignant SGT identified, frequency was higher in males (61%) than in females (39%) and peak occurrence was in the fifth decade of life. Mucoepidermoid carcinoma was the most common type of tumour (35%) followed by adenoid cystic carcinoma (18.1%) and acinar cell carcinoma (10.8%). A similar pattern of tumour distribution was seen in patients from GCC, Asian, and Middle East countries. This is the first report to address the distribution of salivary gland tumours in a multiethnic, multicultural population of the Gulf. The results suggest that the development of an SGT registry will help clinicians and researchers to better understand, manage, and treat this rare disease.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Characteristics of salivary gland tumours in the United Arab Emirates

Sarraj

Nair

Siraj

et al. 2015

ecancer

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“…The primary advantage of the EMAHL13 is that it is brief, takes only a few minutes to administer, a distinct advantage for assessing patient health literacy. The structure of the final questionnaire, which involves “you can” before every item, aided in limiting the influence of social desirability [ 23 ].…”

Section: Discussionmentioning

confidence: 99%

Assessing health literacy in the eastern and middle-eastern cultures

Nair

Satish²,

Sreedharan

et al. 2016

BMC Public Health

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BackgroundHealth literacy is a term employed to assess the ability of people to meet the increasing demands related to health in a rapidly evolving society. Low health literacy can affect the social determinants of health, health outcomes and the use of healthcare services. The purpose of the study was to develop a survey construct to assess health literacy within the context of regional culture. Different socioeconomic status among the Eastern and Middle Eastern countries may restrict, health information access and utilization for those with low literacy.MethodsBy employing expert panel, Delphi technique, focus group methodologies, and pre-testing using participants (N = 900) from the UAE and India, a survey construct to the Eastern-Middle Eastern cultures was developed. Reliability was assessed using Cronbach’s α and validity using Factor analysis. Kiaser-Meyer-Olkin (KMO) sampling adequacy and Bartlett’s tests were used to assess the strength of the relationship among the variables.ResultsInclusion of non-health related items were found to be critical in the authentic assessment of health literacy in the Eastern and Middle Eastern population given the influence of social desirability. Thirty-two percentage of the original 19-item construct was eliminated by the focus group for reasons of relevance and impact for the local culture. Field pretesting participants from two countries, indicated overall construct reliability (Cronbach’s α =0.85), validity and consistency (KMO value of 0.92 and Bartlett’s test of sphericity was significant).ConclusionThe Eastern-Middle Eastern Adult Health Literacy (EMAHL13), screening instrument is brief, simple, a useful indicator of whether or not a patient can read. It assessespatients’ ability to comprehend by distinguishing between health and non-health related items. The EMAHL13 will be a useful too for the reliable assessment of health literacy in countries, where culture plays a significant impact. This will be the first steptowards providing equitable access to healthcare for countries that have large populations with low socioeconomic status.

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“…These considerations and their impact on the privacy protection requirements in the research setting in the Arab region have not been given much attention in the scholarly literature. Indeed, scholars have documented the paucity of publications on privacy and confidentiality in the Middle East compared with other world regions [7].…”

Section: Introductionmentioning

confidence: 99%

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

et al. 2020

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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.

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Assessing Subject Privacy and Data Confidentiality in an Emerging Region for Clinical Trials: United Arab Emirates

Cited by 17 publications

References 23 publications

Characteristics of salivary gland tumours in the United Arab Emirates

Characteristics of salivary gland tumours in the United Arab Emirates

Assessing health literacy in the eastern and middle-eastern cultures

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

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