4. Public Perspective on Data Sharing

In general, willingness for data to be linked and shared for research purposes is high by patients and people are generally open to and understand the benefits of data sharing (Kalkman et al., 2019). Patients and the public perceive that data sharing can lead to better patient care through improved diagnosis and treatment options and more efficient use of resources. Data sharing allows the study of treatment effects and rare events, as well as the study of large numbers of people, to improve diagnosis and treatment quality, as well as to stimulate innovation and identify new treatment options (Kalkman et al., 2019). 

Sharing of clinical trial data has potential advantages, but concerns about potential harms to research participants have led some investigators to be cautious (Mello et al., 2018). First, people often opposed data sharing if it was motivated by financial gain or profit or if the data were shared with private companies. Second, lack of understanding and awareness around the use of data is viewed as an important barrier to data sharing. Third, lack of transparency in releasing data is mentioned as a factor compromising public trust in data sharing activities (Kalkman et al., 2019).