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In Draft
eCare
Information Sharing
Trainer Name
Trainer’s Title
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eCare
Topics of Discussion
Information Sharing
Consent
Confidentiality
Consent Refusal / Withdrawal
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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
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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
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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.
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Types of Consent
There are three types of consent:
Informed, explicit consent
Informed, implicit consent
Practitioner-authorised consent
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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
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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
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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
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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
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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
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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
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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
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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)
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Local process for matching service user across agencies
Enter local process for matching of service user across agencies
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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
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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?NOYES
DON’T
DISCLOSE
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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
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Process 3 – Check Consent Status
Check service user’s consent status
Has consent been requested from service user?
Process 5
Process 4YESNO
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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
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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
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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
YESNO
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Process 4 – is consent still valid?
Consent gained over a year ago?
Process 5DISCLOSE
YESNO
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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
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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
YESNO
Ask for consent
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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.
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Who can give consent? – ChildrenPeople 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
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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
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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
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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
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What to do about concerns about ability of service user to give consentIf 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
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Adults with Incapacity (Scotland) Act 2000Adults 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
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Process 5 – Asking for consent
Ask consent for either:- Share information- Share information with your agency- Continue to share information
Consent given? YESNO
Record consent status
DISCLOSE
Process 6
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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.
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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
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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
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Process 6 – Consent Refused / Withdrawn
Consent has been refused or withdrawn
May have to override?YES NO
Record consent status
DON’T DISCLOSE
Process 7
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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.
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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
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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
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Process 7 – Override of consent
Is there a statutory requirement to
disclose?
YES NO
At least one DPA Sch2 / Sch3 conditions met &
Human Rights Act 1998 / duty of confidentiality
requirements satisfied?
DISCLOSE
NO
YES
Record consent status
Record consent status
DON’T DISCLOSE
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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
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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
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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
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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
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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
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Where do I go for advise / information
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Organisational Statement
