Information Sharing Across Health and Social Care
Over 400 providers of health and social care throughout the North West of London required reliable de-identified data to support commissioning and bring together patient information from these 400 sources. These organisations included GP practices, NHS providers of acute, mental health and community care and local authority providers of social care. This was an ambitious project to bring together information about patients from many sources across health and social care.
It is a fundamental requirement of the provision of integrated care, that the providers of that care have access to a common and comprehensive set of information about their shared patient.
However technical and legal obstacles (real and imagined) have made genuine and widespread information sharing hugely difficult to achieve, particularly across the perceived divide between health and social care.
Over 100 organisations have signed that information sharing agreement, and we are now assisting with the implementation of the information sharing envisaged under that agreement.
Overcoming the challenges
The biggest barrier is one of perception. Health and social care providers are nervous about information sharing. They have seen the negative public reaction to care.data and other initiatives, and do not wish to be on the receiving end – either of negative publicity or even financial liability if things go wrong. This needs to be managed with very careful legal safeguards over the uses of the shared data, and very clear articulation of those safeguards, and of why information sharing is so important to the success of integrated care.
There are many other obstacles to overcome for successful information sharing. These include:
- Communications / fair processing: it is vital that patients understand what will happen to their information and how they can opt out if they wish
- Consent: explicit informed consent may still be required / desirable. The key questions are when should consent be sought, and what does the patient need to know to be able to give informed consent?
- Security requirements: all partners need to be confident that all others will meet a common set of information security requirements
- Governance: how will the programme be governed? In North West London we have set up a very active governing group, comprising data controllers and patient representatives, who oversee the information sharing arrangements.
- Scope: why is data being collected? Do you need it all? If not, it shouldn't be collected.
More information about this project can be found here.