Perception Research: What are the ethical concerns within novel datasets for predictive analytics in Adult Social Care?
The use of unstructured data, which could be anything from notes in Electronic Health Records to PDF scans, may be seen as more sensitive than structured data. The project which delved into the ethics behind data sharing, big data and linking datasets.
The project was led by Islington Council, as part of a programme of research sponsored by NHS Digital to explore the building of novel datasets using structured and unstructured data for Adult Social Care Services for predictive analytics. We engaged with Adult Social Care service users to explore their views toward unstructured data. Throughout the process we supported workshops and collated all the information in a final report.
This project explore linking datasets, the ethics of using shared datasets and the use of advanced algorithms or data/text-mining tools on these datasets. These were complex and abstract concepts to discuss and explore but the findings were interesting with the service users. The literature review uncovered a wide variety of ethical considerations such as what public benefit mean and the extent of control and consent individuals have.
“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