The future is “Big Data”: Would you like to share?

Purpose: Is ‘big data’ to care what penicillin was to medicine? This question is debated by policy-makers, care organisations, advocacy groups, and researchers. The focus of this roundtable is to address the key questions upon which people with ID and their families, professionals, commissioners of services, and service providers need to agree to successfully embark on a common direction. Rationale: Understanding the needs of people with ID and the commissioning and availability of services is currently limited by data being used, which currently are insufficiently individualised, integral, and dynamic. Key questions are: what data are needed and why? what data are available or could be made available? and what are the risks of embarking on big data? Are big data the only solution? How to apply the insights of data analytics in daily care? How to scale and implement this? How can researchers together with people with ID and their families, professionals, commissioners, and service providers formulate a shared answer to these questions? Summary: This first exploration of principles, opinions, and best practice (e.g., data linkage, ownership, privacy, governance, techniques, implementation) will form a starting point for further research, and a position paper drafted to guide work in this field.