How much data protection does a patient get?

Our Board Member Robert Johnstone, FRSA, attended the 4th annual Symposium of the Swiss Clinical Trial Organisation (SCTO) on 20 June 2013. This year’s highlight was on «Good Governance in (Clinical) Research with Human Data and Tissue». The first plenary session was entitled “How much data protection does a patient get – How much does he need and want?” It raised various data protection issues from the perspectives of patients, industry and authorities.

Robert Johnstone, FRSA, emphasised the importance of “finding the right balance between respecting the patients’ fundamental right to protection of their individual sensitive data and data sharing in the benefit of science and society, ultimately.”

Moreover, he explained the change in the patients’ role over the last decades. Patients today want respect of their rights as data subjects and as equal partners in research, transparent information and policies about data management. This would ensure a common level of protection for patients’ data across the EU, and meaningful patient involvement in data protection policies – and beyond in research.

In conclusion, the talks gave a comprehensive overview on trends and developments in this currently fast-changing field with. Moreover, approaches were discussed how interdisciplinary collaborations may eventually lead to finding the right balance between protecting the privacy rights of individuals and advances in research to the benefit of society.

For more information, please visit: