The purpose of this project was to look at promoting transparency in how patient data is being used by Lambeth DataNet (LDN) to improve services. While information about LDN has been disseminated to patients through the production of leaflets and posters available in GP practices in Lambeth over the last decade, Steering Group members assumed that patient awareness of LDN was low.
The project aim was to make sure people registered with general practices in Lambeth are informed about, and enhance their willingness to participate in, LDN’s health research. This was to be achieved by engaging with people registered with general practices in Lambeth to:
- inform them about LDN, the BRC and health research and opportunities for involvement
- inform them about how routine data can be used for research and quality improvement
- listen to concerns about research in general and data sharing in particular
- identify strategies to address concerns
- promote opportunities for engagement in research in LDN and the BRC processes
- develop novel methods of utilising LDN data for local health improvement
Following the engagement with Lambeth patients, we came up wtih recommendations to support the LDN Steering Group in their commitment to promoting more transparency about how local patients’ data are being used to improve services in the area and contribute to the wider body of research.
- Inform all new patients registering with a GP practice about LDN.
- Support GP practices in encouraging registered patients to share responsibility for the accuracy of their registration and primary care data.
- Provide information to practice managers on the broader context of NHS information sharing processes to help them address patients’ queries.
- Track all uses of LDN data and how it is utilised to influence primary care or public health decision making.
- Make dissemination of LDN outputs routine and available to a wider audience.
- Develop and test a method to facilitate access to aggregate data for local community organisations.
- Explore differences in community support for LDN through further outreach