ELSA (Ethical Legal Social Aspects) Laboratory
As we collect ever more health data from more sources, giving your consent for all possible outcomes becomes harder. Our research has shown both the problems with relying solely on one-off consent, and a way forward using a broader approach.
Key facts
With big health data sets, we found both patients and their doctors struggled to define at the outset what results should be shared with them.
We’ve shown that patients prefer a broader process for sharing data and results, based on trust and transparency, in a way that maintains confidentiality.
Our research has contributed to national advice on health data use, including the Chief Medical Officer’s annual report and NHS guidelines.
Investigating the views of patients and doctors
We’ve shifted thinking and policy towards data use based on trust and clarity about who will access and secure it, and for what purposes. Without that we won’t be able to realise the full potential of data to improve healthcare.
We looked at use of genetic information to explore the complexity of consent in big data. The more detailed genetic tests become, the more they might reveal. But it’s also harder to predict which genetic variants matter clinically, or when we will reveal ones we aren’t looking for.
Patients expect to be told about important findings. Yet with many possible outcomes, we found both patients in the 100,000 Genomes Project and their doctors struggled to define at the outset what results should be shared with them (published here).
Genetic test results can also have implications for patients’ blood relatives. We showed that patients expect relatives to be told about any such findings. Yet health professionals thought that patients wouldn’t want this.
We’ve therefore shown that patients prefer a broader process for sharing data and results, based on trust and transparency, in a way that maintains confidentiality.
Influencing national advice on health data use
Since 2016, our ELSA lab research has led to a collaboration with the University of Southampton’s Web Science Institute. It has also resulted in co-authorship of national professional guidelines, now used by the NHS genomic medicine services (published here).
Our research contributed to a national review of digital healthcare (published here). We have also sent evidence to the House of Commons Science and Technology Committee, who extensively citated our research in their direct-to-consumer testing report.
We co-authored the Chief Medical Officer’s annual report: Generation Genome. We have also given evidence in the High Court regarding a consent case with medical data.
Patients’ involvement has been key to our research. We will build on our work with underserved groups. This will help us understand their needs and views, improving equity and a sense of belonging. We will use this to address the lack of diversity in health databases (including genetic ones) to improve healthcare for everyone.