Large-scale data processing has the capacity to transform many sectors. Healthcare is no exception. Indeed – given the financial pressures most healthcare systems face – it arguably stands to benefit more than most, improving outcomes and driving efficiency. However, perhaps more than any other area, healthcare creates complex ethical considerations on how data is used. Before there can be widespread uptake, patients need to be reassured that their confidentiality will be preserved and that their data will not be used without their consent or used against them
Yet the mounting financial pressures make it both urgent and important to find ways to properly leverage the impact it can bring. This should start by identifying potential approaches to using data that are both effective and viewed as ethically acceptable and seek to create consensus, with all relevant stakeholders, around them.
The FIPRA Approach
Fipra determined that for patients and health professionals to see data driven health as a normal and trustable feature of the individual experience it is important to showcase the latest expert thinking.
Fipra conceived an initiative entitled ‘More Trust, More Data. How does Europe grasp the innovation opportunity?’ which comprised of a year-long roadshow across Europe allowing stakeholders the opportunity to discuss the most pressing issues they face and to share success stories showing what could be achieved in the current regulatory environment.
Academia, civil society, policy makers and ICT manufacturers with an interest in healthcare could present their opinions on how to address issues of data security, data confidentiality and compliance.
The initiative was kicked off with a launch in the European Parliament, followed by a dedicated session at the European Health Forum Gastein, Austria and a series of meetings with national stakeholders in Dublin, Milan and Stockholm.
This work culminated in a comprehensive report, capturing the essential learnings ‘Healthcare, artificial intelligence, data and ethics – A 2030 vision’.