Asked what progress she has found especially notable across EMIF’s work as a whole, Addison is quick to flag the scientific publications that have come from the programme “Several publications have advanced basic science, e.g. in relation to biomarkers and metabolism. I think those scientific advances speak for themselves,” she says.
She also flags the programme’s proactive convening of an ethical advisory board as worth discussing. The ethical advisory board comprises six European experts in fields of information and business ethics and law, and includes people cooperating at the highest level of public advice-giving on topics such as data privacy. “This is an area that is hugely important to the public – and it’s essential that the public knows that EMIF is handling patient data responsibly,” she says.
“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.”