Lambeth DataNet uses anonymous information from General Practice patient records to understand differences in the health of sub-populations within Lambeth. The information is analysed with the aim of improving the provision of health services and access to care within the borough.
Changes to the Individual Patient Registration Profile
LDN initially amalgamated patients’ medical records with demographic information collected through the completion of an Individual Patient Registration Profile (IPRP) form when a patient first registers with a Lambeth GP. In 2016, he LDN Steering Group proposed to extend the form to collect information on relevant protected characteristics outlined in the Equality Act 2010, such as disability and gender reassignment, and to measure socio-economic status.
Recognising that some of the proposed data fields are of a sensitive and comprehensive nature, NHS Lambeth CCG’s (Clinical Commissioning Group) Community Care Programme Board has asked to seek feedback on a new IPRP form from people registered in Lambeth. We ran a series of community engagement activities to introduce Lambeth DataNet to people and hear their feedback on the proposed changes.
Who we spoke to
Eight engagement sessions were conducted between November and December 2016. A total of 602 participants were consulted from the following organisations:
- Indoamerican Refugee and Migrant Organisation (IRMO)
- Lambeth Patient Participation Group Network
- Trinity Social Club
- METRO Charity
- Ingleton House
- Brixton Hill Islamic Centre
- Knights Youth Centre
Based on the feedback received through this exercise, we believe that a revised IPRP form that collects data on additional fields of disability, sexual orientation, gender reassignment and socioeconomic status is acceptable to be disseminated to patients registered with Lambeth GPs. While there are several changes to be made to ensure that the form is presented in a clear, simple and accessible way, and that respondents are provided with sufficient information about why the data is being collected, the results of the consultation suggest that questions thought to be potentially sensitive were received positively by the majority of respondents. Key strategic questions such as: how a new form would be disseminated to existing patients via GP surgeries; how to ensure its availability in multiple languages; the frequency of updates required to ensure data validity; and whether LDN and GP registration forms should be merged as one should be debated as part of the next phase of project planning.