Lambeth DataNet Community Engagement

Healthwatch Lambeth worked with King’s College London, the NIHR Biomedical Research Centre and Lambeth DataNet (LDN) to improve public understanding of how anonymised GP records are used for health research and service improvement. The project combined stakeholder consultation with deliberative engagement activities involving 129 participants from seven community groups and 42 stakeholders from patient involvement groups, GP practices and commissioning organisations. The work found that public awareness of Lambeth DataNet was extremely low, with many participants surprised they had never heard of it before. Despite this, most people were broadly supportive once they understood how the system worked and how patient information was protected. 

Participants saw the main benefit of Lambeth DataNet as its potential to improve healthcare services and address local health inequalities. People were particularly interested in examples showing how data analysis could lead to practical improvements in care, service planning and public health initiatives. They also wanted greater transparency about how data was used, who could access it and what research findings were emerging from the system. Many participants felt that information about DataNet, research projects and outcomes should be made more accessible to patients, community organisations and the wider public.

Several concerns were consistently raised. These included confidentiality and cybersecurity risks, the possibility of data being shared with commercial organisations, the accuracy and completeness of patient records, and whether resources devoted to data analysis might be better spent on frontline healthcare services. Participants were reassured by explanations about governance arrangements and anonymisation processes, but many still wanted stronger assurances that data could not be misused and that information would never be sold or used for commercial purposes. Questions were also raised about how patients could correct inaccurate records and how demographic information remained up to date over time. 

The report recommended improving transparency and public engagement by informing all new GP patients about Lambeth DataNet, encouraging patients to help keep records accurate, providing clearer guidance to GP practices about data-sharing arrangements, routinely publishing information about how data is used and what impact it has on services, and exploring ways community organisations could access aggregate data to support local health improvement. It also recommended further outreach to groups beyond those already engaged in healthcare to better understand wider public attitudes towards health data sharing and research.