OBJECTIVES: Nearly 30% of the world’s data is generated by the healthcare industry. Although patient data has the potential to improve healthcare, data protection has to be ensured. The objective of this study was to collect insights from patient association representatives regarding the use of patient data in healthcare and patient data privacy.

METHODS: We conducted 30-minute interviews with patient association representatives recruited from the European Patient Forum 2022 participant list. Nineteen questions were asked regarding data protection, anonymization processes, GDPR and trust towards stakeholders using a 7-points Likert scale (1= low/strongly disagree, 7= high/strongly agree).

RESULTS: We interviewed five patient association representatives from Europe (n=1), Spain (n=1), Malta (n=2) and Bosnia (n=1). Interviewees felt that patients should contribute to the improvement of medical research through their health data (score 5.8). Data related to genetic information and medical prescription were considered to be highly sensitive (scores 5.9 and 4.8 respectively), with clinicians considered to be the most trusted stakeholders to handle patient data (score 6.8). On the other hand, limited trust was put in commercial entities (score 2.9), even though interviewees recognized their capabilities in processing and managing data. Although respondents strongly highlighted the importance of data protection (score= 6.8), they also acknowledged it could delay medical research (score=4.8). Half of the respondents were aware of data anonymization and affirmed that anonymized data could not be traced back. Similarly, all interviewees were aware of the GDPR regulation, and a majority believed data from their country should be accessible by other GDPR-compliant nations (score= 5).

CONCLUSIONS: Patients are willing to share their medical data provided all stakeholders involved acknowledge and guarantee data privacy. The progress of medical research requires patient data and ensuring privacy will be crucial considering the increasing use of real-world data and the rise of artificial intelligence utilization in healthcare.