Information: To share or not to share

1. Information: To share or not to share Terry Dafter Director Adult Social Care: Stockport May 2013

2. Background • Original Caldicott Review in 1997 • 6 principles information sharing • Perception that information governance was an impediment to sharing information • In January 2012 the NHS Future Forum work stream : • “to ensure that there is an appropriate balance between the protection of patient information and the use and sharing of information to improve patient care”. • Led to the Caldicott2 review. • Mixed panel Report published last month • Currently being considered by Minister

3. Professionals Perspective • Culture of fear from front line staff especially around Data Protection and Information Governance who then don’t co-operate • Led to confusion about when and when not to share • Managers wereinclined to set unduly restrictive rules for information governance • Any areas of concern referred to IG staff who are risk averse • General lack of trust between NHS LA and Public/Private providers

4. Professionals Perspective • More relaxed around safeguarding – more defensive the nearer you came to electronic capture • Usually erred on the side of caution • Looked for elaborate ways to get round data sharing problems • 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, not the exception.

5. Panel Perspective • Current position is unsatisfactory and needs to change • Need to replicate what happens in safeguarding more widely • For the purposes of direct care, relevant personal confidential data should be shared among the registered and regulated health and social care professionals who have a legitimate relationship with the individual. • Health and social care providers should audit their services against NICE Clinical Guideline 138, specifically against those quality statements concerned with sharing information for direct care.

6. Patient/Carer Views • People supportive of personal sensitive information being shared among regulated and registered professionals involved in their care • 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. • Were disappointed this didn’t always happen effectively • Outside of direct care people require an explanation of purpose so they can decide to opt in or not • Patients and public generally assumed there was a greater level of sharing to support direct care than was actually happening

7. Patient/Carer Views • Majority of accounts were of negative consequences of professionals not sharing appropriately for direct care • People want access to health and social care information and communications about them • Want to see information and rectify mistakes • However level of trust between agencies and providers very mixed • Information governance cited frequently as reason not to share

8. Panel Perspective • People must have the fullest possible access to all the electronic care records about them, across the whole system. • Social workers should be seen as part of the multi-disciplinary team for purposes of information sharing • Health and social care should align identity management and authentication • Make technology available and accessible • Consider information governance

9. Implications for Social Care • Assumption must be that information around direct care will be shared • This will be explained to individuals and their carers in line with good practice guidance • We must remove the culture of anxiety and risk aversion • Must provide staff with secure environments to exchange information • Move towards giving full access to our records online • Must work on information governance together • Need to think through implications for independent and third sector • Treat breaches through professional associations

10. Final Thoughts • Caldicott principles have stood the test of time • Much of what needs to be done is based on common sense • Message must be If you care – share! • Our duty is to show leadership and create a culture based on sharing and not risk aversion