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A social network for NHS patients may sound a little strange, but for Berkshire Healthcare NHS Foundation Trust, creating one was an obvious choice.
The NHS provides a mental health support service until 5pm Monday to Friday, but mental health conditions don’t go away after 5pm., and despite risis support and emergency services are available 24/7, clinicians saw the need for additional out of hours support for their patients. Back in 2009, clinicians at the Berkshire trust’s eating disorder service were getting increasingly frustrated with the limits of the mental health service, and decided to do something about it.
Jonathon Burton, digital services manager at the trust, says mental health service users would often want to speak to and share information with other users of the service, while former service users might want to help someone who was currently receiving treatment. But legally, clinicians aren’t allowed to give out this kind of information.
“For patient confidentiality reasons, you can’t introduce anyone who was ill and is now better to a person who’s ill and could need someone who’s been in a similar situation to talk to,” he says. “How useful would it be if they could have a conversation and help each other?”
Social network for eating disorders
“We looked at Bebo, Myspace and Facebook, and we liked the idea of a social network, but we wanted to see and control our security and data, as well as making it do certain things, so we decided to create our own,” says Burton.
After 6,000 hours of development time, the Support Hope and Recovery Online Network, or SHaRON, was born. The application is provided and supported by Carelink.
Burton says it’s key to ensure the platform is secure as it holds a vast amount of sensitive data.
The SHaRON social network lets service users, referred to the platform by a clinician, create their own profile pages, upload photos, write to each other on instant messenger, like and comment on each other’s posts, and access forums and chat rooms. It also allows users to book online therapy sessions.
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However, key to the service is that users have to remain anonymous and share no personal photographs.
They can ask clinicians questions or ask for advice, but Burton makes it clear this is not a crisis service. It does, however, use automation to flag up keywords. Should someone use the word “suicide”, for instance, the system can send an alert to clinicians.
The network is closely moderated by clinicians and past service users. “From a user perspective, think of SHaRON like a building. You need a key to get in, and once you’re in that building, your key will let you into specific rooms. As a clinician or moderator, you will have access to every room. As a patient, you will have access to the rooms or information directly related to your illness,” says Burton.
“For example, it would not be appropriate to have those with anorexia in the same room as those with bulimia, so they are in separate rooms. Within the building, there is a ‘living room’ where patients can talk in real time to others undergoing treatment and those who have recovered. They will also find a ‘library’ where they can view relevant accredited documentation about their illness, and a ‘television’ where they can view video content on self-support and home therapies.”
Wide-reaching mental health service
Although initially intended and used only for patients with eating disorders, the network has expanded over the years.
It is now also used by new mothers struggling with mental health issues such as perinatal and postnatal depression, as well as their partners and carers. Families of children who have been diagnosed with autism, or those who are still waiting for an assessment, can also use the network. It is also being rolled out for the early intervention in psychosis service.
It hasn’t all been plain sailing though. In the early days, says Burton, the trust was worried about whether the service would work – whether people would actually use it, or if it would make a difference.
Now, the trust is seeing a huge reduction in re-referrals into mental health services, with service users being able to use the social network to get support and advice should they feel down, or slip up during recovery.
“Internally within the organisation, we’re also using it for whistleblowing on an anonymous basis,” he says.