Policies encouraging the sharing of medical data have gained considerable momentum in China. However, the existing legal and ethical framework for using medical data in research remains predominantly restrictive rather than supportive. At present, the share of Chinese medical data utilized for scientific research still leaves substantial room for growth, revealing considerable untapped opportunities to advance medical knowledge and enhance healthcare results. Drawing on this foundation, the current study examines the obstacles researchers face in medical data sharing through focus group interviews. Two focus group interviews were conducted with researchers from a range of academic fields on 21 June 2021 and 28 July 2021. Altogether, 17 researchers from diverse professional backgrounds volunteered. Overlapping codes were combined, and group discussions within the research team helped identify representative or typical statements from the participants.
Participants clearly understood that medical data must not be shared without proper justification and emphasized the need to comply with relevant laws. The interviews revealed that although the researchers highlighted the importance of thoughtful evaluation before releasing such information, none of them mentioned the requirement of obtaining consent from data subjects specifically for research purposes. This finding stands in notable contrast to the strict rules on separate consent for secondary use of data stipulated in the PIPL.The focus group interviews reveal the obstacles and ethical challenges researchers face when sharing medical data for scientific purposes. They underscore the participants’ strong emphasis on data security and their generally cautious stance toward data sharing. The primary goals for promoting the reuse of medical data include improving interoperability, standardizing data formats, enhancing data quality, protecting privacy, securing informed consent, motivating patient participation, and developing clear rules governing data access and use.
