Welcome to the Information Sharing Workshop

1. Welcome to the Information Sharing Workshop NIGB would like to thank County Durham and Tees Valley Information Governance Leads Group who allowed us to adapt this workshop from their original workshop materials

2. National Information Governance Board www.nigb.nhs.uk Main Office Number 020 76337052 Speakers

3. …Sharing Information: Safely Legally and Confidentially Today is About…

4. Information Governance (IG) is the overall framework of policies, procedures, standards and responsibilities for managing an organisation’s information assets. It covers all information in all formats (manual & electronic). Main areas of Information Governance: Managing information governance Information/ records management Information Quality assurance Information Security Legal compliance Codes of Practice FOI Act 2000 What is Information Governance?

5. Information Quality Assurance Codes of Practice Information Security Assurance IG Toolkit Records Management Care Record Guarantees Local Policies Caldicott Report What are the Standards?

6. helps all staff to manage information helps to ensure all staff comply with the law helps staff to share information across organisations can help to improve decision making To meet obligations and responsibilities Why is IG Important?

7. IG ensures personal information is dealt with legally, securely, ethically, efficiently and effectively and we can ensure the confidence of the individual So…..

8. The Data Protection Act 1998 The Human Rights Act 1998 The Health and Social Care Act 2008 Common Law of Confidentiality Administrative Law FOI Act 2000 Other Legislation e.g. Children Act, Mental Capacity Act, Gender recognition Act, Adoption Act. The Legal Context

9. A duty of confidence arises when one person discloses information to another (e.g. individual to clinician, client to social worker) in circumstances where it is reasonable to expect that the information will be held in confidence or where it is obvious the information is confidential in nature. The duty of confidence - Is a legal obligation derived from case-law. Is a requirement within professional codes of conduct. Is included within many employment contracts as a specific requirement linked to disciplinary procedures. A Duty of Confidence

10. PROTECT IMPROVE PROVIDE CHOICE INFORM The Confidentiality Model

11. Procedures to ensure that all staff, contractors and volunteers are fully aware of responsibilities regarding confidentiality Recording an individuals information accurately and consistently Keeping information physically secure Maintaining confidentiality Disclosing and using information with appropriate care An individuals information PROTECT

12. Check (where practicable) that leaflets or other guidance on confidentiality has been understood Make clear to individuals when information is recorded or service records accessed Make clear to service users when information may be disclosed to others Inform Service Users EffectivelyNo Surprises!

13. Check that individuals have no concerns about how their information is disclosed and used Answer any queries personally or direct to those who can answer Respect the rights of individuals and help them exercise their right to access their service record Inform Service Users EffectivelyNo Surprises!

14. Ask the individual before using personal information in ways that do not contribute directly to, or support, the purpose Respect the individuals decisions to restrict disclosure or use of information, except in exceptional circumstances Communicate effectively with service users to ensure they understand the implications of non-disclosure Provide Choice Provide Choice

15. It is not possible to achieve best practice overnight. Staff must: Be aware of the issues surrounding confidentiality and seek training or support where uncertain in order to deal with them appropriately Report possible breaches or risk of breaches Improve Wherever Possible

16. In August 2007 Baby Peter died of horrific injuries inflicted by his carers He had suffered over 50 injuries despite receiving 60 visits from social workers, doctors and the police over an 8 month period Laming enquiry criticised failings in information sharing between agencies, the poor training and support given to “over-stretched” front-line staff and the red tape “hampering” social workers Death of Baby Peter

17. National information sharing guidance produced by Children’s Services including information sharing pocket guide and dvd Every Child Matters reforms 2004 – 2008 new guidance was issued to reflect current policy for practitioners working with both adults and children’s services Information Sharing Protocols Social Care Record Guarantee, NHS Care Record Guarantee National Information Governance Board (NIGB) Recognise that a difference of culture may exist with the agencies you wish to share information with and work to removing barriers where there is a legitimate legal reason for sharing. What Guidance is Available

18. Where possible we should respect the wishes of individuals who do not consent to share confidential information. You may still share information, if in your judgement on the facts of the case, there is sufficient need to override the lack of consent Seek advice when in doubt, especially where your doubt relates to a concern about possible significant harm to a child, vulnerable adult or serious harm to others You should ensure that the information you share is: Accurate and up-to-date (historical information maybe relevant too) Necessary for the purpose for which you are sharing it Shared only with those people who need to see it Shared securely Always record the reasons for your decisions – whether it is to share information or not What does this mean?

19. In Health consent can be implied or explicit, in Social Care it is always explicit but for both it needs to be Informed Understood - The service user needs to have capacity to understand Freely given Valid Consent

20. Consent not expressly given: Often consent is assumed for sharing information with colleagues within the organisation, particularly in Health. i.e. a individual sees a nurse for a test, it is assumed that the individual will consent for the results to be shared with the treating doctor. In Social Care sharing with other departments in the Local Authority would require explicit consent for another purpose. i.e. to share with housing Sharing information between health care colleagues in different organisations e.g. ambulance crews to A & E staff. Implied Consent

21. Agreement to sharing should be recordedthe individual should be made aware of: - What information is to be shared What is the purpose of sharing it Who it is to be shared with How the information will be protected Whether it may be further shared That they have the right to refuse (if they do) The consequences of refusal and agreement to consent Explicit or Informed Consent

22. Consent should be sought at the earliest opportunity Consent should be recorded using the relevant Consent or Permission to Share form and signed by both the social work professional and the individual or their representative. In Heath this should be recorded in the individual notes Clear explanation should be given to the individual on what they are consenting to and for how long It should be made clear that consent can be withdrawn at any time but we will share when there is a legal requirement to do so An individual should understand that if they withdraw their consent this may affect the service we can provide to them Revisiting consent – at least annually or when a new event happens How do we obtain consent

23. Children and young people 16 assumed to be competent Under 16 competent if they have the capacity to understand and take own decisions Otherwise consent from whoever has parental responsibility Changes at 16 onus of proof shifts from being on the child to being on the person wanting to assert lack of capacity. Children and competence to Consent

24. Adult unable to give consent? Take into account the views of relatives or carer’s Respect any previously expressed wishes Mental Capacity Act (MCA) Adults lacking capacity may have an advocate Provision under MCA for proxy consent via LPA or Court appointed deputy Ultimately, the professional must act in the individual’s best interests Record the decision and the reasons for it Adult Capacity to Consent

25. Ensure the child/adult has the necessary capacity to understand what they are consenting to and seek advice if unsure Record what information will be shared and with whom (always record reasons for sharing without consent) It is the individuals choice to refuse consent, alter arrangements or withdraw consent at a later stage Explain what the consequences are of withdrawing consent and where it may be shared anyway Need only one parent, with parental responsibility, to give consent - ‘Fraser’ (judgement Gillick) competent’ children under 16 also have rights of confidentiality Consent - Summary

26. The sharing of information should be controlled and justified Remember – the consequences of NOT sharing information with other agencies could be far worse than inappropriate sharing There are some circumstances in which sharing confidential information without consent will normally be justified in the public interest: When there is evidence that the child/vulnerable adult is suffering or is at risk of suffering harm; or Where there is reasonable cause to believe that a child may be suffering or at risk of significant harm; or To prevent significant harm arising to children/vulnerable adult including through the prevention, detection and prosecution of serious crime Consent

27. Consider Public Interest justification before seeking consent which could affect approach to consent. I.e. need to provide the information but would prefer to disclose with their agreement. Give an opportunity for them to state their case for non-disclosure. May not be appropriate if there is risk to staff or others. So what if they say no

28. Explain consequences of agreeing to consent Explain consequences of refusing consent i.e. limiting Services – housing etc. Understanding Consequences

29. If the individual is competent to make the decision and they fully understand the consequences of the decision for care or treatment: Understand their reasons and see if they can be satisfied Can care be provided in different way? (Must be practical) Balance the risks – consider ‘public interest’ – you may need to share anyway… Harm to self Harm or risk to others So, what if they say No?

30. Even Worse! What if they say “Yes”… and then change their mind!

31. Q: Can I still disclose if they don’t consent? QUESTIONS TO ASK BEFORE SHARING INFORMATION “There must never be another tragic case where a child suffers as a result of professionals not sharing what they know.” Margaret Hodge “…in every judgment they make, staff have to balance the right of a parent with that of the protection of the child.” Lord Laming, The Victoria Climbié Inquiry

32. Q: Can I still disclose if they don’t consent? Failure to share information appropriately can be a serious breach of care Sharing without consent may be necessary and appropriate under some circumstances: When a child is believed to be at serious risk of harm When there is evidence of serious public harm or risk to others or and individual For the prevention, detection or prosecution of serious crime When instructed to do so by a court QUESTIONS TO ASK BEFORE SHARING INFORMATION

33. The proposed disclosure should be proportionate to the need to protect the child’s/vulnerable adult’s welfare The amount of information disclosed and the number of people to whom it is disclosed should be no more than is necessary to meet the public interest in protecting the health and wellbeing of the child/vulnerable adult Proportionality

34. Consult a Manager/Caldicott Guardian or Data Protection/Information Governance Officer Obtain advice from legal services if appropriate Record reasons why a decision was made to: Override the requirement to seek consent Share information without consent When in Doubt

35. What are the reasons for sharing? Is there sufficient ‘need to know’? Is the request proportionate? Is the information up to date/accurate? Will there be secondary disclosure? Do I need consent? Have I got consent? Can I still disclose if they don’t consent – is there another justification? Have I recorded the sharing? Am I sharing securely? Questions To Ask Before Sharing Information…with anyone, about anyone

36. The NHS NPfIT Programme National Records Electronic Common Assessment systems Use of NHS mail to share information for multi-agency teams New Technology

37. Whose record is it if more than one individual contributes to the record – multi agency teams How will we handle pre adoption information electronically Subject Access Rights Third Party information Mother’s information in Children’s records Seriously harmful data Case recording Impact of Technology on Data Protection

38. More professional More factual Meet the Data Protection requirements Mental Capacity Act 2005 Freedom of Information 2000 Share a common language Recording Consent – Reasons and Fact Keeping Secure Records Management

39. Facts and opinions Example Undiagnosed mental illness? Example Appeared to be unwashed and dishevelled Error correction, or if the individual disagrees (Guidance) Recording

40. So everyone knows the rules and has clear guidance on how, where, when and with whom. Protects the subject, the staff and the organisation Is not instead of consent Why do we Need an Information Sharing Protocol ?

41. What data do we want to share? With whom do we want to share it? Why do we want to share it? How can we justify sharing it? How do we comply with the law? Information Sharing Protocols Pro-active Framework

42. Using the Three Tier Model at local level Tier1 Principles we will all work to contained in the high level protocol Tier 2 Purpose for Sharing Information e.g Care of Adults Process of how we will share the information in the Service Level Information Sharing protocol Tier 3

43. How we comply with the Law Why we need to share the information How we justify sharing the information What information we want to share With whom we will share the information How we will protect the information The Protocol should describe

44. How we restrict access to the information -consent Who needs to know, how much What security will protect it How long it will be kept for What format will it be in When it can be destroyed or Archived Subject Access rights Data Quality Hiding behind legislation and red tape!!! How We Comply With The Law

45. To enable early intervention to help children and vulnerable adults to achieve positive outcomes To enable professionals to feel confident in making good effective information sharing decisions To prevent death or serious harm being caused to vulnerable children and adults as a result of failing to: record information share it understand the significance of the information shared take appropriate action in relation to known or suspected abuse or neglect Why we need to share information

46. A more informed understanding about why information should be shared, when and with whom. Clarification of the legal and ethical issues that surround information sharing. A toolkit to support information sharing Breakout Objectives

47. Increased awareness of partner agencies and their responsibilities and concerns in relation to information sharing. Strategies for disseminating these ideas to others in your organisations. Impact of new technology on information sharing. Breakout Objectives

48. Clarification on safe, legal and confidential ways to send information via computer To get a more informed understanding about sharing information To link/network with other delegates with the same remit as myself To widen my knowledge of the subject area To explore issues/dilemmas/barriers with other professionals Delegate Objective

49. Raising the issues – What Will Happen if we Do Share Information? What Could Happen if we Don’t Share Information? Group Work One

50. Choose 1 of the 3 scenarios on the table As instructed by your facilitator each person takes a card Beginning with the oldest date each person decides who they would or would not share the information with, they then read the card to the group Debate in your groups whether or not having all of the information would change any decisions made You have 30 minutes to complete this exercise Instructions