Views from across East Anglia on use of patient data
People across parts of East Anglia have had their say on the way the NHS uses and shares their personal data, in a new report we have published with Healthwatch Norfolk.
Currently the NHS collects huge amounts of data about each patient including name, address, prescription details and information about care and diagnosis. As a matter of routine, this is shared unless you automatically opt out because the NHS says it helps it provide the best possible care and treatment.
The information is also used so local health bodies and support services can get in contact with people who need extra help. This could include those at risk in the event of localised flooding, or elderly or vulnerable people who would benefit from home improvement schemes.
The NHS Integrated Care Boards in Cambridgeshire and Peterborough and Norfolk and Waveney wanted to know how people felt they should be consulted about the use of their data and asked us to gather views.
Our findings
We found that most people were happy with the way the NHS was using data to shape services within communities, recognising the benefits of sharing this information with wider groups to provide targeted care and support for individuals.
However, there were calls for health leaders to ensure effective communication around the way data is used. People also said they wanted more opportunities for the public to be involved in the schemes that are implemented on the basis of that data.
The messaging around an individual's right to opt out of data sharing data and how to do so, was something that respondents also told us could be improved.
Recommendations
On the basis of the feedback received by us and Healthwatch Norfolk, a final report has been published, which can be viewed on this website.
Within the Patient Data Project report a number of recommendations for the ICBs' next steps have been made:
- Informing People: Ensure that the public are fully informed about the local use of data without prior consent.
- Involving people: Seek to involve interested members of the public/patient groups in all schemes where data is to be used without prior consent.
- Notifying people: Inform those who have been identified to be offered access to a service and review the different methods used in contacting them, following the data analysis.
- Opting Out: Clarify the arrangements for being able to opt out of sharing data and then ensure that the information is included in any relevant explanatory briefing.
- Future Work: ICBs to meet with local Healthwatch organisations for their area to discuss the recommendations in this report and the actions they propose to take as a result.
You can read the full report and further details on our recommendations here.
