Today the Healthcare Coalition on Data Protection published a joint statement highlighting the role of personal data in delivering high quality, patient-centred healthcare and conducting effective clinical and public health research, while expressing concerns on the potential negative impact of the proposed EU General Data Protection Regulation in these areas.
The Healthcare Coalition for Data Protection welcomes the Commission’s effort to harmonise data protection requirements in the EU. The Coalition also welcomes the provisions supporting healthcare and health research. However, they believe some areas must be improved to facilitate medical innovation, improvements in care delivery, and to support Europe’s ground-breaking medical research for the benefits of society. Certain provisions might restrict the sharing of health data, delay innovation, create legal uncertainty and increase compliance costs if they remain unchanged.
The Healthcare Coalition on Data Protection proposes five key recommendations to improve the General Data Protection Regulation:
1. Maintain provisions for data processing for healthcare, research and ultimately patient safety.
2. Clarify definitions for data concerning health to allow a workable and effective data protection regime.
3. Consider the potential unwanted consequences of the Right to be Forgotten.
4. Avoid excessive administrative burden linked to impact assessment obligations.
5. Clarify rules and definitions around the concept of consent
The Healthcare Coalition was recently formed and includes several key stakeholders active in the healthcare and related sectors in Europe. The Coalition aims to raise awareness of the essential role the processing and sharing of personal data plays in improving effective, sustainable and innovative healthcare while supporting health research of significant public interest.
This Coalition is the first initiative of its kind gathering key actors in the health sector, including physicians, dentists, healthcare providers, medical researchers and healthcare technology and mobile health providers around one single cause: the need to facilitate health data processing for health purposes, in a reliable and responsible manner (with the highest respect for EU citizens’ fundamental right to data protection and privacy). By joining forces, the Coalition is looking forward to making a positive contribution to the current debate on the proposed EU Data Protection Regulation in the interests of patients and the healthcare sector.
The Healthcare Coalition on Data protection gathers: CPME, CED, HOPE, FEAM, COCIR, EFPIA, GSMA, Continua Health Alliance.