Why are we publishing this guidance?
Background
1. Nowadays many people find that the care they receive is given by many different people and many different organisations. We hear from people that, all too often, they find that they are faced with someone they have not met before and who has no information about them or their needs. We want to stop this from happening by helping frontline staff to make better sharing decisions every day.
2. Decisions about data sharing can be complex and it is important that staff are aware of the circumstances when they might need help in making sharing decisions. But most sharing decisions are straightforward and staff should be encouraged to share where there are no complicating circumstances and to seek advice when the decisions are more complicated.
Our aim
3. We want staff to feel that they know when they can share information, when they should ask for advice and how to get the advice they need.
4. In “Integrated Care and Support: Our Shared Commitment” published in May 20131 , we said:
In order to deliver person-centred coordinated care, data relating to individual’s risk factors, identified needs, care plans and status should be shared at the following levels within appropriate time frames:
- between patients, people who use services and care providers such as clinicians, to enable self-management and build independence; and
- between front line workers, to enable coordination and continuity of care at transitions between services throughout the care pathway
5. We expect localities to adhere to the principles of the Caldicott Information Governance Review Report (see below) and the NHS Constitution2 on data sharing, in their efforts to integrate care and support for the benefit of patients and people who use services.
Evidence for the problem - from the Information Governance Review report 2013
6. The report from the Information Governance Review (IGR) panel that was chaired by Dame Fiona Caldicott said:
'When it comes to sharing information, a culture of anxiety permeates the health and social care sector. Managers, who are fearful that their organisations may be fined for breaching data protection laws, are inclined to set unduly restrictive rules for information governance. Front-line professionals, who are fearful of breaking those rules, do not co-operate with each other as much as they would like by sharing information in the interests of patients and service users. There is also a lack of trust between the NHS and local authorities and between public and private providers due to perceived and actual differences in information governance practice.'
7. The panel found a strong consensus of support among professionals and the public that safe and appropriate sharing in the interests of the individual’s direct care should be the rule, and not the exception and concluded that providers in the health and social care system may benefit from reviewing and improving their policies for sharing to ensure they are focused on the patient or service user’s best interest, taking account of the safety of people providing care.
8. The panel also concluded that when a patient does NOT want to share some or all of their personal confidential data with a health and social care professional this should be noted in the person’s direct care record. The risk of not sharing the information should be explained to them, but in general, their wishes should be respected.
9. The Review Panel concluded that a registered and regulated professional’s primary concern must be for the health and wellbeing of the individual to whom they are providing direct care and the presumption should be in favour of sharing for an individual’s direct care.
10. As part of this, professionals have a responsibility for accurately communicating information, ensuring that the recipient understands any particular issues or conditions that apply, such as safeguarding issues, or whether individuals have expressed particular wishes in relation to onward disclosure that should be respected.
11. The Review Panel concludes that for direct care, when a professional is satisfied the recipient has a legitimate relationship with the patient, and that the recipient understands any particular issues or conditions that apply, the information can be shared with the individual’s implied consent. The recipient then becomes responsible and accountable for that information in a professional capacity.
