Article type
Abstract
Background
Patient and public involvement (PPI) in guideline development is increasingly recognized as essential for ensuring relevance, acceptability, and applicability of guidelines. However, the integration of PPI into guideline development raises significant challenges, particularly regarding compliance with the General Data Protection Regulation (GDPR).
Objective
Describing the GDPR compliance process related to PPI in the guidelines developed by the Belgian Working Group Development of Primary Care Guidelines (WOREL).
Methods
The Belgian Working Group Development of Primary Care Guidelines (WOREL) has developed guidelines since 2014. A specialized unit has been established in charge of recruiting and preparing patients and the public to be involved in a guideline process and to gather feedback on patient preferences and values systematically and uniformly in the guideline process. A roadmap has been drafted based on the GIN Public Toolkit and experiences on patient involvement in guideline development in Belgium. This roadmap describes the procedure for 2 PPI strategies: a consultative, and a participatory strategy. In both strategies, sensitive data is collected on patients' experiences regarding their pathology and the care provided. Since the GIN Public Toolkit does not cover GDPR, we asked a data protection officer (DPO) to ensure that all actions taken by WOREL in the context of PPI are GDPR compliant.
Results
Thanks to the feedback from the DPO, WOREL can take appropriate measures to meet the GDPR requirements. Clear communication and transparency regarding data handling practices (data security measures) are essential to obtain informed consent from participants. Anonymization techniques and pseudonymization of data can help protect individuals' privacy while still allowing meaningful analysis of feedback. Training and capacity-building initiatives for guideline development stakeholders on GDPR principles and best practices can enhance awareness and proficiency in handling personal data responsibly. Finally, a culture of data protection minimizes the risk of non-compliance.
Conclusion
Integrating PPI into guideline development while ensuring GDPR compliance is a complex yet essential endeavor. By adopting a systematic approach and implementing appropriate safeguards, WOREL should be able to harness the benefits of PPI while upholding individuals' rights to data protection and privacy.
Patient and public involvement (PPI) in guideline development is increasingly recognized as essential for ensuring relevance, acceptability, and applicability of guidelines. However, the integration of PPI into guideline development raises significant challenges, particularly regarding compliance with the General Data Protection Regulation (GDPR).
Objective
Describing the GDPR compliance process related to PPI in the guidelines developed by the Belgian Working Group Development of Primary Care Guidelines (WOREL).
Methods
The Belgian Working Group Development of Primary Care Guidelines (WOREL) has developed guidelines since 2014. A specialized unit has been established in charge of recruiting and preparing patients and the public to be involved in a guideline process and to gather feedback on patient preferences and values systematically and uniformly in the guideline process. A roadmap has been drafted based on the GIN Public Toolkit and experiences on patient involvement in guideline development in Belgium. This roadmap describes the procedure for 2 PPI strategies: a consultative, and a participatory strategy. In both strategies, sensitive data is collected on patients' experiences regarding their pathology and the care provided. Since the GIN Public Toolkit does not cover GDPR, we asked a data protection officer (DPO) to ensure that all actions taken by WOREL in the context of PPI are GDPR compliant.
Results
Thanks to the feedback from the DPO, WOREL can take appropriate measures to meet the GDPR requirements. Clear communication and transparency regarding data handling practices (data security measures) are essential to obtain informed consent from participants. Anonymization techniques and pseudonymization of data can help protect individuals' privacy while still allowing meaningful analysis of feedback. Training and capacity-building initiatives for guideline development stakeholders on GDPR principles and best practices can enhance awareness and proficiency in handling personal data responsibly. Finally, a culture of data protection minimizes the risk of non-compliance.
Conclusion
Integrating PPI into guideline development while ensuring GDPR compliance is a complex yet essential endeavor. By adopting a systematic approach and implementing appropriate safeguards, WOREL should be able to harness the benefits of PPI while upholding individuals' rights to data protection and privacy.