Improving Information sharing in End of Life Care

Posted by Jenny Steele, on July 8 2018 in: News

Our Medical Director, Dr Patricia Needham spoke at the Caldicott Principles and Information Sharing in End of Life Care Conference in London last week (25th June). Other speakers at the conference included Dr Karen Le Ball, Consultant Geriatrician, NHS Highland Chair, UK Clinical Ethics Network and Tony Bonser, Forum Member for Dying Matters, Volunteer, Hospice UK, Member of the NHS End of Life Care Programme Management Board and Vice-chair of Trustees at St Catherine’s Hospice Preston. The event was chaired by Christopher Fincken, Marie Curie Caldicott Guardian and former chair of the Caldicott Guardian Council who also spoke.

Dr Needham’s presentation was titled, ‘Improving information sharing whilst ensuring patient confidentiality at the end of life. My experience as a Caldicott Guardian in end of life care” and aimed to encourage conference participants to improve the process of sharing information at the end of life in their locality while respecting the duty of confidentiality and data protection law. It also aimed to help delegates to understand what information can be shared with relatives, other professionals and services and when information cannot be shared and finally to explain the Dorothy House model of the Caldicott role in an independent hospice.

Here is her Conference Paper Abstract and some comments from Dr Needham:

Caldicott Principle 7 makes it clear that our duty to share information is as important as the duty to protect patient confidentiality. Nowhere is this as important as when a person is at their ‘end of life’ whether we mean by that likely to be within weeks, months or even years of death. Information can often be usefully shared across, and between, different organisations, in order to support the provision of safe, high quality, timely care and to reduce duplication of effort. Sharing information can improve the co-ordination of care and mean that an individuals end of life care wishes are more likely to be respected and achieved. It can also reduce multiple and inappropriate admissions.

The common law duty of confidentiality is said to be broken if information shared during a consultation in the expectation that it would be held in confidence is subsequently passed on to others. Hence the importance of explaining the reasons, and potential, for sharing sensitive information in a way that is understandable to our patients and their families. Information can be shared in many ways – verbally, via paper or electronically. It may involve the use of separate clinical databases or be fully integrated into one system. GDPR and the new Data Protection Bill have clarified the different legal basis behind sharing Personal and Sensitive Personal Data, which will vary depending on the situation. As a result our use of the word ‘consent’ will need to change.

In her presentation Dr Needham identified many of the issues that she as a hospice Caldicott Guardian has become aware of and she also shared her own experience in terms of the challenges of working within a complex geographical health and social care structure; sharing information with other SystemOne users, and the various different interoperability projects that she is aware of within the Dorothy House catchment area.

Commenting on these issues Dr Needham said: “The opportunities of rising to the challenges of information sharing in end of life care outweighs them, as any improvement in systems, processes and practices that can improve the care our patients receive is to be welcomed.”

“As a Caldicott Guardian I want to ensure that the right information sharing systems and processes are in place to benefit our patients and their families and reduce the duplication of sensitive questioning across everyone involved.  I’d like to see interprofessional communication across organisations and care settings improved, and more specialist palliative care education and support rolled out across GP practices and community nursing teams to build up confidence and utilisation.  I’m happy to invest time in our understanding of the complex challenges around information sharing in end of life care to improve the outcomes for patients so that their wishes are achieved wherever possible, inappropriate hospital admissions are avoided and more patients die where they want to. Finally, in my role as Caldicott Guardian I am able to link together the different elements of Information Sharing in End of Life Care to help the hospice sector improve the service our patients receive.  These elements include information technology and interoperability, our scope of services, working in partnerships when providing care, our focus on patient care and needs, our clinical expertise and sharing knowledge of confidentiality and data protection law.”