1. Information: to share or not to share? BCS HC 2012 Conference London 2 nd May Dame Fiona Caldicott

2. Information: to share or not to share? Invitation to lead a review of information governance from the Secretary of State, following a recommendation by the Future Forum Future Forum Information Report & recommendations Information: to share or not to share? Review How you can contribute to the review

3. NHS Future Forum recommendation The Government should commission a review of the current information governance rules... 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” NHS Future Forum, January 2012

4. NHS Future Forum recommendation The NHS must move towards using its IT systems to share data about individual patients and service users electronically – in the interests of high quality care” NHS Future Forum, January 2012 ‘A very strong and clear message that not sharing information has the potential to do more harm than sharing it. It is also a major annoyance for patients who feel that they should not constantly have to repeat the same information about themselves as they pass through the treatment pathway’

5. NHS Future Forum - Principles Responsible data sharing underpins quality of care IG is a balance between facilitating use and protecting Data is the patient’s - need to treat their data with respect as part of respecting them Normal presumption that all those involved in care have access with consent An implicit deal between the service and users and a responsibility to inform on use as well as keep confidential – a key issue is that with the advent of electronic records – and a changing model of care provision – we need to renegotiate the social contract between the public and services

6. IG Review Panel Panel – 15 members Process of selection – key areas were identified and then relevant organisations were approached for suggestions Members appointed in their own right not as representatives Monthly meetings Additional evidence gathering sessions

7. IG Review Process Timetable – intention to feed into NHS Constitution consultation for October Interim report and then final report Dec 2012 / Jan 2013 Secretariat – currently 3 staff Steering group – 3 & staff

8. IG Review Draft Scope Still to be agreed Key issue to address concerns Consent and ensuring that all activities have a secure basis in law. IG in the new landscape – how to have effective internal and system wide IG Specific cross-sector IG issues affecting individuals and organisations

9. Consent and lawful processing when is explicit consent needed? what is needed for valid implied consent? are there activities that need a secure legal basis but for which consent is not appropriate or feasible? how should they be supported in law? the consent process – how to seek consent and what to record implementation through technical architecture

10. IG in the new landscape Health & Social care Act 2012 changes IG roles and responsibilities of organisations –Monitoring and reporting: CQC – Managing and advising on IG: Information Centre (IC), NHS Commissioning Board, Department of Health Responsibility for: –Public health data flows - Public Health England (DH) & LAs –Commissioning data flows: NHS CB –Adult Social Care data flows: DH, LAs, DWP –Central data collection & Honest Broker services - IC

11. Moving forward: IG levers Contract Terms with providers and the oversight management and enforcement of contractual provisions Information Standards to the extent they are applicable to information governance but they have the benefit of being health and social care system wide CQC registration criteria – currently limited scope in relation to enforcement - future role for NIGC? Legal enforcement through the Information Commissioner’s Office in relation to the Data Protection Act 1998

12. Evidence gathering themes Direct care, incl sharing across H & SC and with independent sector Commissioning Public Health LA / Adult, Children and Family Social care uses including safeguarding Research Consent Linkage and identifiability Patient and Public rights in law – EU Regulation and what services need to tell people Workforce education, training and regulation Issues related to genetic and genome information Issues related to new and emerging technologies

13. Next steps Careful thought to working out the practicalities of change Collaboration & partnership Future approach to IG needs to promote excellence in health and social care Consistency of approach across health and social care, research and public health

14. How you can be involved Happy to receive written submissions by email (or post) Website in development: www.Caldicott2.dh.gov.uk – not yet live Contact: Fiona.Caldicott@dh.gsi.gov.uk Office - 020 7972 3734