The power of information – sharing for patients and wider society

1. The power of information – sharing for patients and wider society Southern Institute for Health Informatics Portsmouth 5th September Dame Fiona Caldicott

2. The power of information – sharing for patients and wider society • Invitation to lead a review of information governance from the Secretary of State, following a recommendation by the Future Forum • The Review • Information: to share or not to share? • Early findings • 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 along 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 and Process • Panel – 15 members - appointed in their own right not as representatives • In the middle of a series of evidence gathering sessions • Intention to contribute to the consultation on the NHS Constitution this autumn • Final report to Ministers expected in the New Year

7. Scope • Responding to concerns • of those who have entrusted their personal data to professionals; and • of those professionals that the confidentiality of that data is insufficiently safeguarded • Advising on the issue of harm due to data not being shared, to the detriment of the subject • Setting out simple, clear rules for consent and the sharing of personal information

8. IG Review scope and aims • 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 – a cultural change • Specific cross-sector IG issues affecting individuals and organisations • 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

9. 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

10. Evidence gathering themes • Children and families • Linkage • Patient and Public rights in law – including EU Regulation • Workforce education, training and regulation • Issues related to genetic and genome information • Issues related to new and emerging technologies • Direct care, including sharing across H & SC and with independent sector • Commissioning • Public health • Adult social care and vulnerable adults • Research • Consent and control • Citizen, patient and client

11. 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

12. Early Findings (1) • There is confusion amongst the public about what is done with their information. Problems arise when people find out how their information is used and are shocked they have not been asked permission or told – there should be a “no surprises” rule for sharing information • There is a need • to establish agreed usage of terms, • to have protocols for information use and sharing across health and social care, and • to spell out where the boundaries of implied consent are

13. Early Findings (2) • Clear public interest in using information • for medical research and public health, and • to link social needs or mental health issues to housing so emergency hospital admissions can be reduced • BUT no need for it to be identifiable and therefore for its use to breach an individual’s confidentiality • Need agreement on • how potential participants can be identified from their medical records, • how it would be appropriate to approach them about relevant trials, & - the acceptable purposes where those without direct involvement in clinical care can have access to confidential information without consent

14. Early Findings (3) • There has been a consensus in the evidence that ‘branding, language and leadership’ are seriously lacking in the current information governance situation • Branding: information governance turns the professions off • Language: there is no obvious connection to the role of caring for people who use services, the language is unclear and the terminology confusing • Leadership is directed to organisational protection, [“not getting it wrong”], creating a “fear of sharing” among professionals, as opposed to improving care

15. Next steps • Complete the series of evidence sessions • Review evidence and develop initial proposals • Start to test later this year

16. How you can be involved Happy to receive written submissions by email (or post) Closing date 16 September 2012 Website www.Caldicott2.dh.gov.uk Join in the discussion on twitter #caldicott2 Contact: Fiona.Caldicott@dh.gsi.gov.uk Office - 020 7972 3734