The relevance of data protection and consent has never been more topical in healthcare as it is today. The shift towards ‘big data’ and ‘real-world evidence’ is creating opportunities for health research but this also raises important challenges (e.g. anonymity, role of consent) in terms of patient confidence and trust in how patient data (and biomaterial) is used for research purposes.
Meanwhile, data compliance and the impending EU Data Protection legislation is a major issue for the collection, use and sharing of patient data, and in particular the need for greater transparency around explicit consent.
The ‘dynamic consent’ model, which is more flexible over time, and more personalised, is an example of how information technology could be used to satisfy the legal and regulatory requirements for research consent, while simultaneously providing a communication interface for interacting with patients, participants and citizens.
9.15 Welcome: Dr Derick Mitchell, Chief Executive, IPPOSI
SESSION 1: THE IMPACT OF NEW DATA PROTECTION LAWS ON HEALTH DATA AND RESEARCH
Chair: Dr. Derick Mitchell, Chief Executive, IPPOSI
9.30 Mr. Cathal Ryan, Office of the Data Protection Commissioner
9.50 Mr. Muiris O’Connor, Assistant Secretary, Department of Health
10.10 Ms. Jeanne Kelly, Irish Business Law Firm Mason Hayes & Curran
10.30 Q&A, followed by break – tea & coffee @10.45 (30 mins)
SESSION 2: MAKING CONSENT MORE ‘DYNAMIC’ FOR BIOMEDICAL RESEARCH
Chair: Dr. Anne Cody, Health Research Board
11.15 Prof. Jane Kaye, University of Oxford, United Kingdom
11.35 Ms Julie Power, Vasculitis Ireland Awareness
11.55 Dr. Gianpero Cavalleri, RCSI and Epilepsy Lighthouse Project on Electronic Health Records
12.15 Q&A, followed by close + lunch (12:45pm)