“When it comes to sharing health data, solving the technical solutions of data sharing is more straightforward than structuring workable collaboration models that satisfy both data owners and researchers alike,” says Bart Vannieuwenhuyse, Senior Director Health Information Sciences, Janssen Pharmaceutica; Coordinator EMIF.
Thought Leader Interview: Janet Addison, Senior Manager & Product Lead, Centre for Observational Research at Amgen
“Patient data, at the end of the day, belongs to individual people. We are sensitive to that and I think having the input of an independent external ethical advisory board shows just how careful we are being, which is important for the public to know. Having convened that group and meeting with them regularly is a very big step forward.”
Thought Leader Interview: Dr Tõnu Esko, PhD, is Deputy Director of Research, Estonian Biobank, Estonian Genome Center, University of Tartu.
“If you can gather all this data together – from historical data i.e. disease history, to the ‘omics’ data and genetic data – we could, for instance, develop a web-based service where patients could see how their past and current lifestyle decisions affect their disease risks. For example, if a patient knows he has a higher risk for smoking-induced cancer, that might motivate him to stop smoking – or if he has a genetic tendency to become obese in later life, then maybe that will motivate him to follow a healthier lifestyle.”
Thought Leader Interview: Simon Lovestone, Professor of Translational Neuroscience, University of Oxford Department of Psychiatry
“In contrast, EMIF has brought together a group of people that enabled identification of the right cohorts through the cohort selection tool, or the EMIF catalogue. In a study that we’re doing at the moment we’ve already completed a study of 500 individuals and we’re now embarking on a study of 1000 individuals.”