October 2018: This chapter has been amended to reflect changes in data protection regulation, including the General Data Protection Regulation and add a link to Confidentiality: Guidance for Registrants, published by the HCPC as linked above.
All staff have responsibility to ensure that person identifiable, confidential or sensitive information is handled, processed and stored in accordance with the Data Protection Act 2018, the General Data Protection Regulation, The Human Rights Act 1998 and the European Convention on Human Rights.
The organisation should ensure that access to data is restricted to those that have legitimate authority to view it; it should be confident that data that is held is accurate and relevant and where amendments are required, revision are carried out by authorised personnel.
Staff are often required to work within a multi-agency arena and therefore need to be confident about their responsibilities concerning information sharing. Legislation such as the Data Protection Act 2018 (DPA) should not to be seen as an obstacle but as a framework of best practice to support promotion of wellbeing and improving outcomes for adults with care and support needs, their carers and the community.
There is an expectation that from their first point of contact with the service, adults will be helped to understand the information that is being gathered, processed and stored in relation to them and give their written consent to this. They also have a right to know if and when information held about them is going to be shared, for what purpose it will be shared and with whom (unless there is justified reason to share without informing the individual concerned).
There are certain circumstances when sharing information is not appropriate and doing so can cause detriment to adults and the service. Equally not sharing information can have serious consequences, therefore all staff must use their professional judgement on a case by case basis, and if necessary seek help from their line manager before making a decision. All decisions and outcomes need to be recorded appropriately.
Staff must apply a consistent and responsible approach to information sharing and should ensure that they are familiar with the information sharing procedures and supporting government guidance in relation to information sharing.
2. Principles of Sharing Information
The principles in the guidance are intended to help practitioners share information between organisations. Practitioners should use their judgement when making decisions on what information to share and when and should follow organisation procedures or consult with their manager if in doubt.
The most important consideration is whether sharing information is likely to safeguard an adult who is experiencing or at risk of abuse or neglect.
- Necessary and proportionate: When taking decisions about what information to share, you should consider how much information you need to release. The Data Protection Act 2018 requires you to consider the impact of disclosing information on the information subject and any third parties. Any information shared must be proportionate to the need and level of risk.
- Relevant: Only information that is relevant to the purposes should be shared with those who need it. This allows others to do their job effectively and make sound decisions.
Adequate: Information should be adequate for its purpose. Information should be of the right quality to ensure that it can be understood and relied upon.
- Accurate: Information should be accurate and up to date and should clearly distinguish between fact and opinion. If the information is historical then this should be explained.
- Timely: Information should be shared in a timely fashion to reduce the risk of harm. Timeliness is key in emergency situations and it may not be appropriate to seek consent for information sharing if it could cause delays and therefore harm to an adult. Practitioners should ensure that sufficient information is shared, as well as consider the urgency with which to share it.
- Secure: Wherever possible, information should be shared in an appropriate, secure way. Practitioners must always follow their organisation’s policy on security for handling personal information.
- Record: Information sharing decisions should be recorded whether or not the decision is taken to share. If the decision is to share, reasons should be cited including what information has been shared and with whom, in line with organisational procedures. If the decision is not to share, it is good practice to record the reasons for this decision and discuss them with the requester. In line with each organisation’s own retention policy, the information should not be kept any longer than is necessary. In some circumstances this may be indefinitely, but if this is the case there should be a review process.
3. Seven Golden Rules and Key Questions for Sharing Information
- Remember that the Data Protection Act 2018 and human rights law are not barriers to justified information sharing, but provide a framework to ensure that personal information about living individuals is shared appropriately.
- Be open and honest with the individual (and/or their family where appropriate) from the outset about why, what, how and with whom information will, or could be shared, and seek their agreement, unless it is unsafe or inappropriate to do so.
- Seek advice from other practitioners if you are in any doubt about sharing the information concerned, without disclosing the identity of the individual where possible.
- Share with informed consent where appropriate and, where possible, respect the wishes of those who do not consent to share confidential information. You may still share information without consent if, in your judgement, there is good reason to do so, such as where safety may be at risk. You will need to base your judgement on the facts of the case. When you are sharing or requesting personal information from someone, be certain of the basis upon which you are doing so. Where you have consent, be mindful that an individual might not expect information to be shared.
- Consider safety and wellbeing: Base your information sharing decisions on considerations of the safety and well-being of the individual and others who may be affected by their actions.
- Necessary, proportionate, relevant, adequate, accurate, timely and secure: Ensure that the information you share is necessary for the purpose for which you are sharing it, is shared only with those individuals who need to have it, is accurate and up-to-date, is shared in a timely fashion, and is shared securely.
- Keep a record of your decision and the reasons for it – whether it is to share information or not. If you decide to share, then record what you have shared, with whom and for what purpose.
When asked to share information, you should consider the following questions to help you decide if and when to share. If the decision is taken to share, you should consider how best to effectively share the information.
Q. 1 Is there a clear and legitimate purpose for sharing information? This includes taking action in relation to safeguarding children and adults.
- Yes – see Q.2;
- No – do not share.
Q.2 Does the information enable an individual to be identified?
- Yes – see Q.3;
- No – you can share but should consider how.
Q.3 Is the information confidential?
- Yes – see Q.4;
- No – you can share but should consider how.
Q.4 Do you have consent?
- Yes – you can share but should consider how;
- No – see Q.5
Q.5 Is there another reason to share information such as to fulfil a public function or to protect the vital interests of the information subject? See also Section 6, Sharing Information with the Safeguarding Adults Board below.
- Yes – you can share but should consider how;
- No – do not share.
- Identify how much information to share;
- Distinguish fact from opinion;
- Ensure that you are giving the right information to the right individual;
- Ensure where possible that you are sharing the information secure;
- Inform the individual that the information has been shared if they were not aware of this, as long as this would not create or increase risk of harm
All information sharing decisions and reasons must be recorded in line with your organisation or local procedures. If at any stage you are unsure about how or when to share information, you should seek advice and ensure that the outcome of the discussion is recorded.
Agencies should draw up a common agreement relating to confidentiality and setting out the principles governing the sharing of information, based on the welfare of the adult or of other potentially affected adults.
Any agreement should be consistent with the principles set out in the Caldicott review: Information governance in the health and care system, Department of Health (2013) ensuring that:
- information will only be shared on a ‘need to know’ basis when it is in the interests of the adult;
- confidentiality must not be confused with secrecy;
• informed consent should be obtained but, if this is not possible and other adults are at risk of abuse or neglect, it may be necessary to override the requirement; and
- it is inappropriate for agencies to give assurances of absolute confidentiality in cases where there are concerns about abuse, particularly in those situations when other adults may be at risk.
Where an adult has refused to consent to information being disclosed for these purposes, then practitioners must consider whether there is an overriding public interest that would justify information sharing (for example because there is a risk that others are at risk of serious harm) and wherever possible, the appropriate Caldicott Guardian should be involved.
Decisions about who needs to know and what needs to be known should be taken on a case by case basis, within agency policies and the constraints of the legal framework.
Principles of confidentiality designed to safeguard and promote the interests of an adult should not be confused with those designed to protect the management interests of an organisation. These have a legitimate role but must never be allowed to conflict with the welfare of an adult. If it appears to an employee or person in a similar role that such confidentiality rules may be operating against the interests of the adult then a duty arises to make full disclosure in the public interest.
In certain circumstances, it will be necessary to exchange or disclose personal information, which will need to be in accordance with the law on confidentiality and the Data Protection Act 2018 where this applies.
6. Sharing Information with the Safeguarding Adults Board
In order to carry out its functions, the SAB will need access to information that a wide number of people or other organisations may hold.
In the past, there have been instances where the withholding of information has prevented organisations being fully able to understand what ‘went wrong’ and so has hindered them identifying, to the best of their ability, the lessons to be applied to prevent or reduce the risks of such cases reoccurring. If someone knows that abuse or neglect is happening they must act upon that knowledge, not wait to be asked for information.
A SAB may request a member of staff from Adult Social Care to supply information to it or to another person. The Care Act 2014 specifies that the person who receives the request must provide the information provided to the SAB if:
- the request is made in order to enable or assist the SAB to do its job;
- the request is made of a person who is likely to have relevant information and then either:
1. the information requested relates to the person to whom the request is made and their functions or activities or;
2. the information requested has already been supplied to another person subject to a SAB request for information.