Jordanian views regarding sharing of medical data for research: A cross-sectional study during COVID-19 pandemic

Abstract

Purpose In the current study, the views of Jordanian regarding sharing medical reports for research purposes were investigated during the COVID-19 pandemic. In addition, motivators and barriers regarding sharing of medical records were examined. Methods This observational survey-based cross-sectional study was conducted using an electronic questionnaire during the COVID-19 pandemic (second half of 2020). The questionnaire link was disseminated through two social media platforms (WhatsApp and Facebook), targeting Jordanian adults (age >18 years). Results In this study, 1,194 participants agreed to complete the study survey. Results showed that 58.3% of them (n = 696) reported to be willing to share their medical data. while 17.6% of the participants (n = 210) showed hesitancy to share their medical information. The most important motivators as perceived by the study participants were helping other patients who have similar health conditions (n = 995, 83.3%). Moreover, fearing from stigma (n = 753, 63.1%), and the lack of confidence in data security and privacy (n = 728, 61.0%) were among the main barriers preventing participants from sharing their information. Finally, results showed that participants with higher educational level (bachelor or higher) (OR = 0.299, P<0.001), or those living in center of Jordan (OR = 0.270, P<0.001) showed a lower tendency to share their medical data. While participants those who have shared data before showed a higher tendency to share their medical data (OR = 2.524, P<0.001). Conclusion In this study, many of the participants had a positive attitude towards sharing biomedical data for scientific research during the COVID-19 pandemic, many had doubts in the control over their data. Thus, policymakers and data users should address the concerns and values of patients and understand their preferences in favor of an ethically scrupulous use of data in research.

Ethical considerations and concerns in the implementation of AI in pharmacy practice: a cross-sectional study

“…Health data, unlike other types of data, is highly personal and confidential and might affect individuals’ health, well-being, and personal lives. Its sensitivity extends to the risk of shame, stigma, or discrimination, a concern particularly prevalent in developing countries [ 25 , 26 ]. As AI systems typically involve collecting, storing, and analyzing sensitive patient information, these concerns are valid [ 4 ].…”

Exploring patient perspectives on the secondary use of their personal health information: an interview study

“…It has been found that patients were more comfortable with the sharing of health information with health-related (non-commercial) organisations during the pandemic than prior to the pandemic, [1] although there are conflicting reports around levels of comfort with the sharing of health information for purposes related to COVID-19. [1][2][3][4].…”