Perception Research: Novel datasets for predictive analytics in Adult Social Care

Challenge: Islington Council and NHS Digital needed to validate public and service user acceptance of using unstructured data (EHR notes, PDF scans) for predictive analytics in Adult Social Care before implementing novel datasets and advanced algorithms.

Approach NHS Digital-sponsored research programme engaging Adult Social Care service users to explore views on unstructured data use, combining a literature review examining ethical considerations (public benefit, control, consent) with workshops to discuss complex concepts around data linking, ethics, and text-mining algorithms. Findings synthesised in final report.

Outcomes

• Adult Social Care service users engaged in focus groups and co-creation design workshops

• Key findings on service user views: acceptance levels, concerns and role of media

• Ethical considerations identified: public benefit definitions, consent requirements and control mechanisms

• Policy or governance changes were implemented based on findings

• Predictive analytics project proceeded

• Safeguards implemented for unstructured data use

• Impact on Adult Social Care services or data governance practices to have the community voice in inclusive research

“Data and ethics are a very important topic to us and as technology progresses, councils want to keep up but there is more responsibility and accountability and having a considered approach, that accounts for ethics and information governance toward predictive analytics for the older population, and one that is growing, was the key focus of the project.

Speaking to our Adult Social Care service users aimed to explore their views toward unstructured data and supported workshops ran by LSE. They brought together the primary data and analysed this alongside the brief evidence review, which is secondary research, to bring us actionable and relevant recommendations.”

– Programme Director, Islington Council