There are so many reasons why organisations are reluctant to share vulnerable individuals’ data. Often, their reluctance has good intentions at its roots. People may be worried that they will breach data protection laws. Sometimes, it’s to do with practical stumbling blocks like IT or bureaucracy. Large statutory organisation may be very process-heavy and have a culture of clinging to their information, while voluntary organisations can treat each other as competitors and therefore feel protective over the data they hold. We’re all used to hearing how important it is to protect people’s personal data and sometimes it just feels safer to err on the side of caution.
But misguided possessiveness about data can make it impossible to support people. Imagine Joe, who suffers from depression and finds it difficult to cope following the death of his wife. He has tried to end his life and has had police attend his home due to neighbouring disputes. Despite this, Joe has been getting on well, particularly with his Care Coordinator and there have been improvements in all areas of his life. But when his Care Coordinator goes on planned annual leave, coupled with the anniversary of his wife’s death, Joe’s drinking increases and his suicidal thoughts intensify. Imagine that suddenly all of Joe’s support disappears and no one knows his triggers. With no plan in place, imagine what could happen to him, someone who drinks heavily, is isolated, suffers from depression and has a history of suicide attempts.
Our York Pathways service supports adults experiencing mental distress who are in frequent contact with police and emergency services, or at risk of becoming so. Their lives are chaotic and they may have been in ‘the system’ for many years. Working with them in isolation makes no sense. They will usually have built a rapport with several agencies, which may have very specialist expertise to be able to shed light on their situation. Endlessly having to repeat the specifics of their history to different people will leave them frustrated and reluctant to engage. It also creates duplication of work for the people trying to support them. Agencies with only fragments of the whole story may well come to different conclusions about what should be done to support them.
There is often only a small window of opportunity to intervene in a way that will have a positive impact on someone’s life. This makes this type of service unlike some others, where a person regularly attends support sessions over a period of months, or is a resident of a support facility. They may not have a stable address, they may be in crisis and their ability and willingness to engage with services may fluctuate day to day. Supporting them can be a race against time and so it is crucial we have all the information we need at our fingertips.
We developed York Pathways in collaboration with the Lankelly Chase Foundation, North Yorkshire Police and Vale of York CCG as a response to an escalation in incidences of self-harm and suicides across the North Yorkshire area. When we set the project up, we knew efficient data sharing was going to be crucial to its success. So we started talking about it even before the project was operational, and built it into the design and planning stage. Fortunately, there was already real enthusiasm for a very different approach in York, stemming from an acknowledgment that things weren’t working as well as they could do. As with all of our projects that hinge on effective partnerships, we made sure that we had relevant senior strategic people on our Project Board. There is little point persuading people to your point of view if they have no authority to make things happen!
We were lucky: they listened and were open to suggestions. Building up trust was crucial to this process and we made sure everyone understood the common goal we were all working towards, and kept this in our minds at all times. Sharing data may sound like quite a straightforward thing to do but when you start looking at the detail more closely, it can become extremely complex. It’s easy to become discouraged, or shy away from the responsibility that needs to be assumed.
We tried to keep it as simple as possible, and shared a template for a data sharing agreement to use as a starting point for discussions. We talked about issues like service user consent, methods for sharing data, and data retention. When some organisations still weren’t convinced, we carried on regardless, hopeful that they would be in a position to cooperate at a later stage. It was agreed that Pathways would not take its first referrals until the agreement was in place, and this gave us strong motivation to work to the agreed timeframe.
It’s important to note that when we talk about data, we don’t just mean contact information and basic personal facts like age and diagnosis. The information we needed to share included details of ongoing contacts with services, circumstances, background and so forth – anything that has a bearing on someone’s wellbeing and how they need to be supported.
You might think service users are the ones anxious about their data being shared, but they actually usually expect organisations to talk to each other, and are often surprised to discover they don’t. We ask the people we support about information sharing when they first come into contact with us, balancing our responsibility to safeguard people and empowering individuals to be in control of their information. We explain how, why and when we will share their information. We know the person we’re supporting needs to feel in control to be confident in opening up and engaging with us.
When information sharing works, it’s not just the frontline workers who benefit from the time saved and risk shared. Imagine how well things could still work out for Joe:
The Care Coordinator knew that August was a challenging month for Joe and that he was at risk of increased feelings of hopelessness due to the anniversary of his wife’s death. She shared with Social Care, the Police, the Crisis Team, the Ambulance Service and our Pathways team that August was a triggering month. Following a multi-agency meeting, they put in place a joint working protocol on how to respond to Joe and how to engage him in activities during this particular month. When Joe’s Care Coordinator was on leave during August, this didn’t matter because a range of agencies were working to a shared care plan, which ensured a continuity of support for Joe.
- Build strategic senior relationships with the people who have authority to change systems
- Start as early as possible – work this process into your service design and planning if possible
- Be open to ideas – there may be more than one way of doing things and opinions may vary. Give people plenty of scope to make suggestions.
- Have one person to coordinate the agreement, who is responsible for keeping things moving
- Involve service users on both strategic and operational levels
- Be transparent – share all correspondence with all agencies involved
- Broker relationships with as many social care agencies as possible
- Use our Information Sharing Agreement template and service user consent form as a starting point
- Make sure the authenticity of the final agreement is declared in writing by the Chief Executive of each organisation.
Sarah Owen-Rafferty is National Criminal Justice Development Manager at Together for Mental Wellbeing, which supports around 4,500 people a month to lead independent and fulfilling lives.