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Real Time Surveillance

Background

Real Time Surveillance is the umbrella term for a system of Real Time Data (RTD). For the purposes of suicide bereavement support, we focus on the information around the person who has died, the people closest to them, and the process following a suspected suicide from informing next of kin of the death, through to the end of the inquest.

Real Time Surveillance can refer to either the collection of anonymous data from those who have died by suicide across a locality, and real time referral – the collection of (usually) a single person or family’s data for referral into a suicide liaison service, with the consent of the family. Both of these forms of RTD are vital to effective proactive suicide bereavement services. 

Why have a Real Time Data System?

Real Time Data is a system that allows for interventions when people are at very high risk of suicide. Crucially, it facilitates a system of support following a bereavement which may be by suicide, before the coroner’s conclusion. RTD enables people at risk of suicide to get support when they need it. 

Coroner’s reports can be published up to a year after a suspected suicide. We know that people who are bereaved by suicide – particularly those with close relationships to the person who died – are at much higher risk of suicide in the months following a the death. People bereaved by suicide are more likely to feel suicidal themselves, and around 9% make a suicide attempt. We also know that a single suicide can lead to or be part of a cluster of suicidal deaths, and real time surveillance facilitates the rapid identification and intervention of suicide clusters. In short, a real time surveillance system that is correctly set up, run, and evaluated, will save lives. 

Who needs to be involved? 

The most effective support is proactive, multi-agency, and offered to those closest to the deceased within a few days of the death. To do this, there must be a system of real time data for;

  1. Identifying who is close to the person who has died (the bereaved)
  2. Identifying the potential risk to those bereaved people
  3. Sharing data – with consent – from one agency to another 
  4. Multiple agencies with knowledge of the shared information, working in a co-ordinated way

With this in mind, it is imperative the follow agencies are involved with the information pathway that make up real time surveillance: 

  • Police
  • Other frontline responders
  • Coroners 
  • A central co-ordinator for a suicide liaison service
  • IAPT services 
  • Local GP surgeries 
  • Local hospitals
  • Local schools and education centres (for identifying potential clusters, and for supporting young people after the suicide of someone in the school community)

Who should be responsible for the RTS system and data sharing? 

The organisation responsible for collecting, managing and sharing data should be one right at the start of the bereavement pathway. This is usually the police or coroners. There is debate on which organisation is better placed; a study by McGeechan et al (2017) on referrals in County Durham, UK, found that coroner reporting was generally more consistent at identifying suspected suicides, but reports were filed quicker by the police. 

The responsible organisation should have robust systems for storing and sharing confidential and sensitive data. It may be helpful to consider organisations – such as the police – who already hold systems for such data and processes, where the real time surveillance of suicide data can be integrated. 

What about the regulations around data sharing?

Real time surveillance of mass data – the mass collection of data to identify clusters and trends within a community – does not require any consents to be collected, as long as each entry is not identifiable when shared or published. For example, 

Police in xxx are responding to a rise in suicides by falling from bridges by alerting residents who live nearby to look out for those who may be at risk, and through a campaign of signs along popular road routes.”

“Police are responding to the death of several pupils of the local high school, by working with a local charity programme, to speak to staff and pupils, and run sessions on emotional wellbeing and grief responses to the recent deaths.”

For Real time referral – when there is information shared between organisations as part of support in the aftermath of a suicide – consent must be given by the people being supported to have their data shared. This consent might be given to police during an early visit to those affected. Permission for consent might be presented as, 

“We, the police, are working with an organisation to support people who have been impacted by the possible suicide of a loved one. We think we can help by referring you to this service, and they will be in touch to see how they can best support you within the week. Are you willing for us to pass on the information that you may have been impacted by the possible suicide of your [son/friend/mother etc], so that they can offer you some support? We would need to pass on your name and contact details, who has died, and some basic information about you. We will only share this information with the support organisation [named support provider], and no one else.” 

How to set up a real time data system? 

There are different paths to setting up a successful system, but many of the existing services have found the following steps key to development: 

  • Develop a compelling case for the need for real time surveillance in your locality, based in evidence.
  • Engage the local multi-agency suicide prevention group, local police and the coroner, identify local support; bring this group together around real time surveillance. 
  •  Put together an operational plan of where the data might sit, how it will be collected, used, permissions required, and who would be the named lead for the safeguarding of data.
  • A clear plan with processes for how and where the data will be used, and how this will benefit people bereaved by suicide. 
  • An awareness of where the gaps are, and how these will be overcome.

What action do I need to take? 

  • Understand how RTD is used, why, and how consent statements work. 
  • Explore opportunities to consider who already collects data, and how these existing frameworks can be used for suicide bereavement and prevention. For example, A&E departments, local police, self-harm and substance abuse centres, NHS Trusts, GP practices etc.
  • Develop partnerships with regional and local organisations involved with suicide prevention work, such as Network Rail, British Transport Police, Coroner’s services, Highways England, Local Authorities, Police, and local bereavement services
  • Develop understanding with commissioners and local frontline responders of the need for RTD to be passed, with consent of the impacted person, for data to be shared, to meet the minimum standards for support. 

Useful Links

Thames Valley RTS resource pack

Others? Leicestershire?