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.