 In Draft eCare Information Sharing Trainer Name Trainer’s Title

 In Draft eCare Topics of Discussion Information Sharing Consent Confidentiality Consent Refusal / Withdrawal

 In Draft eCare Why share information “Numerous inquiries into service failures in the health and social services fields have criticised agencies for failing to share relevant information. None have criticised agencies for sharing too much ” Information Sharing Protocol – Gold Standard

 In Draft eCare Definition of Consent “Consent may be defined as permission for a person to do something which he would not have the right to do without such permission ” Downie and Calman 1987

 In Draft eCare What does consent to sharing of information mean?  Consent is a service user’s agreement to  the sharing of relevant information about themselves  between their care providers (including carers)  from different agencies  This information can be shared in a number of ways – paper, computer, conversation  Consent must given on an informed basis.

 In Draft eCare Types of Consent  There are three types of consent:  Informed, explicit consent  Informed, implicit consent  Practitioner-authorised consent

 In Draft eCare What does Confidentiality mean?  Confidentiality is about respecting personal information and using it in a way that the service user would expect  Confidentiality is ensuring that only relevant service user information is shared with those who have a need to know when it is appropriate to know  Confidentiality is applicable to all accessible information retained – manual records, computer  You are subject to a common law duty of confidentiality, and must abide by this

 In Draft eCare Why ask for consent?  Protect rights of the service user  Protect rights of the practitioner  Legislation:  Data Protection Act (1998)  Human Rights Act (1998)  Children (Scotland) Act 1995  Local Government in Scotland Act 2003  Common Law - Duty of Confidence

 In Draft eCare Data Protection Act (1998)  Data Protection Act (1998) states that information should be  Processed fairly and lawfully  Obtained only for one or more specified purposes  Adequate, relevant and not excessive  Accurate and up-to-date  Not kept longer than necessary  Kept secure

 In Draft eCare Why do we have to respect confidentiality?  Common Law - Duty of Confidentiality  As a general principle this duty of confidentiality arises when a person receives information in circumstances where he knows or can be taken to know that the information is to be treated as confidential

 In Draft eCare Legislative Framework  The laws set a framework for legal information sharing  The laws provides safeguards for individuals  It does not prevent you from developing joint, co-operative working arrangements  The law should not be seen as a barrier to excuse a failure to engage with other professionals or to keep information from them unnecessarily

 In Draft eCare Benefits of appropriate information sharing for service users  Service user may not have to repeat core basic details  Service user should receives co-ordinated service  This should reduce delays in the provision of care services  Sharing of information should ensure the service user’s safety  Enables easier and quicker access to equipment and adaptations that the service user may need to assist with daily living

 In Draft eCare Benefits for you  Lead assessor can co-ordinate treatments and services across agencies  Holistic information available about service user  Messaging – “at risk” warning messages  Will not have to ask for basic information again and again

 In Draft Process 1 - Deciding if there is a need to share information Service user’s first contact to your agency for this episode of care Record / Update service user’s core details on your local system Matching of service user in Multi Agency Store (MAS)

 In Draft eCare Local process for matching service user across agencies  Enter local process for matching of service user across agencies

 In Draft Process 1 - Deciding if there is a need to share information Service user’s first contact to your agency for this episode of care Record / Update service user’s core details on your local system Matching of service user in Multi Agency Store (MAS) Is it necessary to share information? DON’T DISCLOSE Process 2 YES NO

 In Draft Process 2 – Anonymous Data Are you sharing data anonymously? Process 3 Explain about sharing data anonymously YES NO Do you want to share identifiable service user information? NO YES DON’T DISCLOSE

 In Draft eCare Anonymous Data – Key Points  If data is completely anonymised (individual cannot be identified at all) this data will not constitute personal data  Legal framework of protecting personal data will not apply to this information  Service user should be informed, out of courtesy, on any routine sharing of anonymised data  Consent to share anonymised data is not required

 In Draft Process 3 – Check Consent Status Check service user’s consent status Has consent been requested from service user? Process 5 Process 4 YESNO

 In Draft eCare Recording of consent status  Consent does not have to be in a written format.  It is more important to ensure the service user understands the decision they are making than to get written confirmation.  Sensitive data will always require explicit consent for sharing  You must follow local practices for recording the service user’s consent status – this may be in manual records, electronic or both

 In Draft Process 4 – is consent still valid? Check if your agency was part of local ISP when consent was requested Part of ISP? Process 5 Check if needs, circumstances or information to be shared have changed YES NO

 In Draft Process 4 – is consent still valid? Needs, Circumstances or information to be shared has changed? Process 5 Check when consent was last discussed with service user YES NO

 In Draft Process 4 – is consent still valid? Consent gained over a year ago? Process 5 DISCLOSE YESNO

 In Draft eCare Is consent still valid – key points  When a new agency signs up to your information sharing protocol, consent must be revisited  If there is a change in circumstance or need, or in the information that will be shared, then re-visit and re-confirm consent  Consent will be reviewed at least once a year  Consent lasts as long as there is a need to share new information  The continuation of consent is about continuing to share new information

 In Draft Process 5 – Asking for consent Evaluate service user’s ability to give consent Service user is capable of giving consent? Follow local procedures for determining who can give consent on behalf of service user YES NO Ask for consent

 In Draft eCare Who can give consent? - Adults  People aged 16 or over have the capacity to make decisions for themselves if in the opinion of the practitioner looking after them, they are capable of understanding the nature and possible consequences of their decision.  An individual's ability to reach a decision will depend on the decision in question, their capacity at the time and the nature of their disorder.

 In Draft eCare Who can give consent? – Children  People who are 16 or under have the capacity to make decisions for themselves, if in the opinion of the practitioner looking after them, they are capable of understanding the nature and possible consequences of their decision.  If the child is deemed not capable of giving consent, practitioners should involve the parent / guardian of the child, unless this would increase the risk to the child  Good practice normally assumes age 12 is when a person will be capable of giving consent. However, professional judgement should be taken on each individual case

 In Draft eCare Who can give consent? – Pre Birth  Practitioners should involve parents-to-be in decisions about sharing information, unless this would increase the risk to the unborn child  Practitioners caring for a pregnant women should be aware of any factors which may impact on the welfare of the unborn child.  This includes sharing information prior to the birth of a child to ensure protective plans are in place from the moment of birth

 In Draft eCare Who can give consent? - Families  If information is to be shared across a family group there may be different consent status for each of the individuals.  If a family member does not gives consent to share information any information recorded about them on another family member’s record can only be incidental

 In Draft eCare Who can give consent? - Deceased  The Scottish Executive Health Department and professional bodies responsible for setting ethical standards for health professionals accept that the common law duty of confidence extends to the deceased.  The service user’s preferences will continue to be adhered to  If the service user’s preferences are unknown, the default will be to not share information unless there is a valid reason to override

 In Draft eCare What to do about concerns about ability of service user to give consent  If you have doubts about the service user’s capacity to make an informed decision ask yourself “Can this person understand, retain and use the information they need to make this decision?”  Do not make any decision on your own – immediately seek advise from the appropriate source  Any decisions will be made in line with the Adults with Incapacity (Scotland) Act 2002 and the Children (Scotland) Act 1995  Only a medical practitioner can determine mental capacity

 In Draft eCare Adults with Incapacity (Scotland) Act 2000  Adults with Incapacity (Scotland) Act 2000 defines incapable as incapable of  acting; or  making decisions; or  communicating decisions; or  understanding decisions; or  retaining the memory of decisions

 In Draft Process 5 – Asking for consent Ask consent for either: - Share information - Share information with your agency - Continue to share information Consent given? YES NO Record consent status DISCLOSE Process 6

 In Draft eCare When do I explain information sharing, confidentiality and obtain consent?  Information sharing should be discussed during the initial contact with a service user. If required, consent should be requested at this point.  If you do not have consent and there is a change of circumstances, consent must be revisited  People can change their minds and withdraw their consent at any time.

 In Draft eCare What do I explain about information sharing, confidentiality and obtain consent?  You will be holding this information on behalf of the organisation  Agreeing to consent will be for all agencies currently signed up to the information sharing protocol.  Each agency will determine whether it is in the interest of the service user to share their agency information.  Historical information may also be shared  If they withdraw their consent in the future, information already shared will remain shared

 In Draft eCare What do I explain about information sharing, confidentiality and obtain consent?  Explain that their information may be shared to help with the planning and developing of services.  Assure them that if this happens their data will be anonymous  Explain that sometimes it could be possible to identify the service user from anonymous data  Provide the appropriate leaflet

 In Draft Process 6 – Consent Refused / Withdrawn Consent has been refused or withdrawn May have to override? YESNO Record consent status DON’T DISCLOSE Process 7

 In Draft eCare Consent Refusal / Withdraw  A service user is entitled to refuse or withdraw consent for the sharing of their information  If a service user refuses or withdraws their consent, the consequences of not sharing information, must be explained to them. For example, may not receive services best suited to their needs.  Explain that services will strive to ensure that as far as possible no service user suffers detriment because of exercising choice.

 In Draft eCare Consent Refusal / Withdrawn  You should explain to the service user that in exceptional circumstances the information may be shared in any case  Be explicit about why this will be done - your responsibility and authority to do so  Inform the service user that they can change their mind at any point  Inform the service user as their circumstances change they may be asked about agreeing to information sharing again

 In Draft eCare Consent is withdrawn  It is not possible to retrospectively withdraw consent to sharing i.e. if information has been shared already it cannot be unshared.  If wrong information has been shared then the receiving agency should be notified accordingly but information previously shared, cannot be withdrawn  You may need to demonstrate under DPA the reasons for still holding / using this information without the service user’s consent – professional decisions may have been taken on the basis of the shared information

 In Draft Process 7 – Override of consent Is there a statutory requirement to disclose? YESNO At least one DPA Sch2 / Sch3 conditions met & Human Rights Act 1998 / duty of confidentiality requirements satisfied? DISCLOSE NO YES Record consent status DON’T DISCLOSE

 In Draft eCare Over ride consent refusal  The DPA 1998 does not preclude the sharing of information in circumstances where this is necessary for the protection of an individual.  Each organisation has persons with knowledge and authority to take responsibility for such a decision if the practitioner has any concerns regarding this.  Your own manager should be first line of contact

 In Draft eCare Over ride consent refusal  For child protection issues, the practitioner has a duty to persist with information sharing even if your manager takes no action.  The practitioner should in this instance contact the Child Protection Advisers

 In Draft eCare Reasons to over ride  Duty of Care  Condition of Schedule 2 of DPA 98  Condition of Schedule 3 of DPA 98 (sensitive information)  The requirements of the Human Rights Act 1998 and the common law duty of confidentiality also require to be satisfied

 In Draft eCare When to over ride  Do not make any decision on your own  Discuss your concerns with your line manager and make the decision to share information together.  Document clearly who was involved in the decision making process and why you made this decision.  You may only share information about a client or patient without their consent if it is seen to be in their best interest or the public interest or to protect another individual

 In Draft eCare When to over ride  Potentially you may have to justify your decision in a court of law or before a professional body.  You must be able to evidence your professional judgement

 In Draft eCare Where do I go for advise / information

 In Draft eCare Organisational Statement