Child Death Review Pilot
Information Governance Framework
Version: A / Date: 20/10/09 / Status: Initial ReleaseAuthor: Caroline Busby / Page: 1 of 43
National Public Health Service for Wales / PROD-11 CDR Pilot Information Governance Framework
REVISION HISTORY
Issue No. / Created / Brief description of changes01 / 03/08/09 / Draft
02 / 16/09/09 / Updated draft
A / 20/10/09 / Initial release (following feedback from the Assistant Information Commissioner (Wales))
RELEASE AUTHORISATION
Approved Print Name
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Version: A / Date: 20/10/09 / Status: Initial ReleaseAuthor: Caroline Busby / Page: 1 of 43
National Public Health Service for Wales / PROD-11 CDR Pilot Information Governance Framework
TABLE OF CONTENTS
1.BACKGROUND
2.CHILD DEATH REVIEW PILOT
3.PURPOSE
4.LEGAL FRAMEWORK
5.SHARING INFORMATION
5.1Establishing a Process for Ascertaining all Child Deaths in Wales
5.1.1Justification
5.1.2Information Requirements
5.1.3The Effect of Information Sharing within the Notification process
5.1.4Issues Assessment
5.1.5Consent
5.2Establishing A Process For Reviewing Child Deaths In Wales
5.2.1Justification
5.2.2Information Requirements
5.2.3The Effect of Information Sharing within the Review Panel process
5.2.4Issues Assessment
5.2.5Consent
6.FAIR PROCESSING
7.INFORMATION STANDARDS
7.1.Information Quality
7.2.Recording Information
7.3.Relevance
7.4.Reviewing Information Quality
8.RETENTION
8.1.Retention Period
8.2.Review
8.3.Destruction
9.SECURITY OF INFORMATION
9.1Staff Access
9.2Transmission
9.3Storage
9.3.1Electronic
9.3.2Paper
9.4Release to Third Parties
Appendix A: Table 1 – Issues Assessment
Appendix B: Process for Obtaining Consent
Appendix C: Child Death Review Form A Notification of Death
Appendix D: Child Death Review Form B Agency Report
Appendix E: Child Death Review Form B9 Apparent Suicide
Appendix F: Table 2 – Transmission of Information
Version: A / Date: 20/10/09 / Status: Initial ReleaseAuthor: Caroline Busby / Page: 1 of 43
National Public Health Service for Wales / PROD-11 CDR Pilot Information Governance Framework
- BACKGROUND
There is already a well-established process for reviewing individualchild deaths where abuse or neglect is thought to have been a factor (Safeguarding Children: Working Together under the Children Act 2004, Welsh Assembly Government, Final working draft October 2006). The system for reviewing deaths in these circumstances is called a Serious Case Review. This function is a legal requirement on the new statutory Local Safeguarding Children Boards (LSCBs) formed under the Children Act 2004,who report to the Welsh Assembly Government (WAG).There are currently 21 LSCBs in Wales representing 22 children service’s authorities.
In England the Regulations introduced under The Children Act 2004 required LSCBs to set up a process for reviewing all deaths of children from 1st April 2008, not only those where abuse or neglect was thought to be a factor. The purpose of the process is to examine whether there are common factors associated with particular causes of child death which, once identified, can be addressed through local initiatives.
The Welsh Regulations under The Children Act 2004 currently (September 2009) do not require individual LSCBs to review all child deaths, as the government in Wales wanted to consider taking an all-Wales approach to conducting reviews of all child deaths. The Welsh Assembly Government therefore asked the National Public Health Service (NPHS) to set up a multi-agency Task and Finish group to produce recommendations on how an all-Wales child death review process might work.
Work on the development of a review system was started in 2005 and it was concluded that an all-Wales approach would be the most practical and effective approach to conduct reviews of all child deaths because of the relatively small number (approximately 250-300 per annum). It was also concluded that some elements of the review process should be tested through a pilot study.
The remainder of this document sets out the arrangements for such a pilot study.
- CHILD DEATH REVIEW PILOT
The National Public Health Service(NPHS) has been commissioned to undertake the pilot study on behalf of the Welsh Assembly Government to examine the practicalities of establishing anAll Wales Child Death Review(CDR) process. A Child Death Review Support Team has been established by the NPHSto take this work forward. There are two key tasks that will be undertaken during the Pilot, each with differing data protection and confidentiality issues. These are:
- Establishing a process for notifying all child deaths in Wales to the Child Death Review Support Team;
- Establishing a process for reviewing child deaths to identify potential patterns or issues of concern. To test and develop the review process the pilot will focus retrospectively on deaths of children that have died by their own hand.
- PURPOSE
The purpose of this document is to ensure the benefits of sharing information during the Pilot are achieved, while maintaining the trust of relevant partners and individuals.
- LEGAL FRAMEWORK
There is currently no specific statutory requirement for the LSCBs in Wales to undertake child death reviews and as such share information with the Child Death Review Support Team. However, the Child Death Review process is fulfilling formal statutory functions of both health and social care organisations as set out in their respective enabling legislation, and it is considered by Welsh Assembly Government to be a proportionate response to the need to safeguard the health and wellbeing of children. The activity of reviewing these deaths, and the consequent functions described inthis document for the Child Death Review Support Team and the Child Death Review Panel, are considered to be in the public interest and supported by the legislation identified below.
It is essential for LSCBs to be confident that they are both allowed and required to share information with the NPHS for the purpose of the Pilot, as much of the material involved will be sensitive or personal information which might in normal circumstances be expected to be restricted or confidential.
Consideration has been given to the following legal frameworks which make it fair and legal for LSCBs to share information on child deaths for the purpose of this pilot:
Section 25 Children Act 2004: this provides statutory guidance to all relevant organisations in Wales to promote co-operation with relevant partners and highlights the importance of information sharing.
Section 28 Children Act 2004: places a duty on bodies within the NHS to make arrangements to ensure that their functions are discharged with regard to the need to safeguard and promote the welfare of children.
Human Rights Act 1998: Article 8.2: The right to respect for private and family life can be legitimately interfered with where it ‘is in accordance with the law and is necessary…in the interests of….protection of health and morals or for the protection of rights and freedom of others’.
Common Law Duty and Disclosure in the Public Interest: The common law provides that where there is a confidential relationship, the person receiving the confidential information is under a duty not to pass on the information to a third party. However, the sharing of such information is permitted (on a case by case basis) if ‘the public good that would be achieved by the disclosure outweighs both the obligation of confidentiality to the individual… concerned and the broader public interest in the provision of a confidential service.’ (Confidentiality: Code of Practice for Health and Social Care in Wales, paragraph 32)
Data Protection Act 1998:
First Principle: “Personal data shall be processed fairly and lawfully and, in particular, shall not be processed unless -
At least one of the conditions in Schedule 2 is met,and
In the case of sensitive personal data, at least one of the conditions in Schedule 3 is met.
E.g. ‘The data subject has given his consent to the processingof the data’ (Schedule 2)
‘The data subject has given his explicit consent to the processing of the personal data’ (Schedule 3).”
Second Principle:“Personal data shall be obtained only for one or more specified and lawful purposes, and shall not be further processed in any manner incompatible with that purpose or those purposes.”
Version: A / Date: 20/09/09 / Status: Initial ReleaseAuthor: Caroline Busby / Page: 1 of 43
National Public Health Service for Wales / PROD-11 CDR Pilot Information Governance Framework
- SHARING INFORMATION
In England the LSCBs are already implementing the guidance set out inWorking Together to Safeguard Children (HM Government 2006). Paragraph 7.55 sets out the function of the Child Death (Overview) Panel which includes collecting and collating an agreed minimum data set and where relevant seeking information from professionals and family members. This provides a persuasive authority for sharing information to support the Child Death Review process in carrying out ascertainment and reviews in Wales.
5.1Establishing a Process for Ascertaining all Child Deaths in Wales
5.1.1Justification
There are a number of agencies in Wales involved in the collection, processing, analysis and interpretation of child death data. At present, information flows between these agencies are not systematic and it is difficult for any one agency to develop a complete picture of child deaths. Because agencies serve different functions, the type and frequency of data they require also varies, as does its accuracy and quality.
The Child Death Review process requires a consistentsource of robust information on childhood deaths. A crucial aspect of the pilot study will be to set in place processes by which all child deaths are notified to a single point i.e. the Child Death Review Support Team. This will allow identification of themes for review by the Child Death Review Panel. This information will also be used for the ongoing surveillance of child deaths at the population level using pseudonymised data.
5.1.2Information Requirements
5.1.2.1Notification of Death
Notification of deaths of children and young people in Wales between the age of 0 and <18 be collectedfrom 1st October 2009 until the end of the Pilot. All information required at the Notification stage will relate solely to the deceased. Information that is linked to a third party will not be notified. The data will be collected on Child Death Review Form A – Notification of Death (Appendix C).
5.1.3The Effect of Information Sharing within the Notification process
5.1.3.1Benefits
The benefit of using this information from LSCBs, hospitals etc. will be the availability of all-Wales information relating to all child deaths (0 to <18 years) that can be used to inform better use of resources to safeguard children.
5.1.3.2Risks
It is acknowledged that information relating to the death of a child is ‘sensitive’, because of the impact on those who are coming to terms with the tragedy. Therefore it is planned that those close to the child should be informed that information is to be gathered.
5.1.4Issues Assessment
The level of information requested at the Notification stage is very limited. The Data Protection Act(DPA) does not apply to information about deceased persons and therefore the information required for Notification does not come within its remit.As recommended by relevant organisations however, there is still a duty of confidentiality, so the process will use the minimum amount of detail possible. A fullerdiscussion of these issues is included at Appendix A: Table 1 – Issues Assessment.
5.1.5Consent
Consent is technically not required for the Notification as the informationis related to a deceased child and therefore not covered by the Data Protection Act. However, as noted above, the sensitive nature of the information makes it appropriate for relatives to be informed of the process.
Version: A / Date: 20/09/09 / Status: Initial ReleaseAuthor: Caroline Busby / Page: 1 of 43
National Public Health Service for Wales / PROD-11 CDR Pilot Information Governance Framework
5.2Establishing A Process For Reviewing Child Deaths In Wales
5.2.1Justification
5.2.1.1Process for Child Death Reviews
The Welsh Regulations under The Children Act 2004 do not yet (October 2009) place a specific statutory obligation on LSCBs to review all child deaths. However, it is intended that statutory responsibility for undertaking reviews will eventually be placed on the LSCBs. The Pilot will help inform the drafting of regulations and statutory guidance relating to how the process can be taken forward in Wales.
The Pilot will establish a Child Death Review Panel that will receive anonymised case summaries of children that have died by suicide, apparent suicide or by their own hand without intent. The summaries will be used to draw conclusions about common or potentially preventable factors in death. These summaries will have been prepared and anonymised for the Panel by the Child Death Review Support Team from sources such as LSCBs, Coroners etc.
5.2.1.2Focus on Suicides/Apparent Suicides
On 19 February 2008, the Minister for Health and Social Services announced that a National Action Plan to reduce suicides in Wales would be produced. This work has now been completed and ‘A National Action Plan to Reduce Suicide and Self Harm in Wales 2008-2013’ - a five year action plan to provide strategic direction for the statutory and voluntary sectors, has been developed. By initially focusing on child deaths by suicide/apparent suicide the Child Death Review Pilot will assist in meeting objective 5 of the Plan: to promote learning, research and improve information on suicide and suicide prevention.
NSPCC Cymru/Wales has welcomed the decision to pilot the initial stage of an all Wales child death review with cases of suicide. It is considered vitally important that any learning from cases where children and young people have taken their own life is shared across Wales and relevant alterations made to practice and processes. It is hoped that through this process agencies will be encouraged to identify children and young people more susceptible to suicidal behaviour earlier, enabling them to intervene earlier.
5.2.2Information Requirements
5.2.2.1Notification of Deaths
The Child Death Review Team will require notification of deaths of children by suicide, apparent suicide and those that have died by their own hand without intent,from October 31st 2006 until present. These notifications will be provided by LSCBs. The data will be collected on Child Death Review Form A: Notification of Death (Appendix C).
5.2.2.2Production of Case Summaries
Detailed information will be required for those deaths that are selected for review by the Child Death Review Panel during the Pilot. The sources of this information will include:
- Child Death Review Form B Agency Report (Appendix D);
- Child Death Review Form B9 Apparent Suicide (Appendix E);
- External Agency Reports e.g. Serious Case Review Overview Report, LSCB Internal Management Report;
- Coroner’s Inquest Transcripts;
- ‘Routine’ Data Sources hosted by Health Solutions Wales.
An anonymised case summary will be produced from these sources, by the Child Death Review Support Team. The information within the case summary must be sufficient to allow the Panel to:
- Describe the case;
- Identify the significant features of each case that may have contributed to the death;
- Score the strength of this contribution;
- Categorise the most avoidable factor.
5.2.3The Effect of Information Sharing within the Review Panel process
5.2.3.1Benefits
The sharing of this information is expected to lead to improvements in the safeguarding of children’s health and wellbeing through the identification of common and potentially preventable factors in death.
5.2.3.2Risks
Information relating to the background of the deceased, including details about their mother, father or other household members, may be significant as to the reasons why a child has died. This type of information will be required to produce case summaries for the Child Death Review Panel. It is acknowledged that there is a need to balance the requirement for this information against the family’s circumstances.
In order for this information to be shared, consent will be required (see paragraph 5.2.5) from the individuals to whom it relates. Work has been undertaken by the Child Death Review Support Team to ascertain how this can be achieved, with minimal distress to those affected (PROD-16 Privacy Impact Assessment). This has included contact with bereavement organisations and those who have carried out similar studies and impact assessments.
Feedback suggests that while the initial approach may cause some distress, families generally welcome the opportunity for lessons to be learned and put to use in safeguarding other children.
It has been concluded that each approach will need to be considered on a case-by-case basis to identify the most appropriate method for contacting each family.
5.2.4Issues Assessment
Data that identifies family members or other significant people in the child’s life may be required to provide a full representation of the events or contributory factors to the death. This information is subject to the Data Protection Act. The full assessment is included at Appendix A: Table 1.
5.2.5Consent
The Data Protection Act requires that if sensitive personal identifiable information is to be shared explicit consent is required from those to whom it relates.
The individual will be made fully aware of:
- The nature of the information that it may be necessary to share;
- Who the information will be shared with;
- The purposes for which the information will be used;
- Any other relevant details including the right to withhold or withdraw consent.
A model ‘Process for Obtaining Consent’ produced as a result of a Privacy Impact Assessment is provided at Appendix B.
5.2.5.1Refused or Withdrawn Consent
An individual has the right to withhold consent to have personal identifiable information about them shared. A person also has the right to withdraw consent to the sharing of their personal identifiable information at any point and will be provided with details of their LSCB (as holders of the information) to arrange this should they wish to do so.
Where the individual has withheld consent, the implications of withholding consent will be clearly explained.In this instance the case will not be reviewed by the Child Death Review Panel.
5.2.5.2Recording and Amending Consent
A record of consent or refused consent should be held by the LSCB and they will be responsible for informing all other agencies affected if an amendment is made to this consent.
Once the ‘piece of work’ for which consent was originally obtained has been completed, it will be deemed to have lapsed and ‘new’ consent will be required for any subsequent work.