Open data is being used to design resources for people with mental health conditions to help them find the right support
If you’re experiencing a mental health issue, one of the people you probably least want to speak to about it is your employer. Disclosing depression or anxiety has long been seen as the last workplace taboo, for fear of repercussions. This is despite the existence of the Equality Act 2010, which protects employees with physical and mental disabilities from discrimination.
But just over a third of workers with a mental health condition discuss it with their employer, according to a survey of 1,388 employees carried out by Willis PMI Group, one of the UK’s largest providers of employee healthcare and risk management services. The research found that 30% of respondents were concerned that they wouldn’t receive adequate support, 28% believed their employer wouldn’t understand, and 23% feared that disclosing it would lead to management thinking less of them.
A culture of fear and silence can have a huge impact on productivity – the charity Mind estimates [pdf] that mental ill health costs the economy £70bn a year. The challenge is that seeking help involves taking ownership of the problem, says Mark Brown, development director of social enterprise Social Spider and founder of the now defunct mental health and wellbeing magazine One in Four. And finding support online can be a time-consuming and frustrating experience.
“Just serving up ever great slabs of information – the internet is awash with it – isn’t going to help anyone to know what to do,” says Brown. “We often confuse the provision of information with the solving of problems. Knowing information is different from knowing how to put that information into action.”
Brown believes that bringing together information with public and open data into a single digital space is one way that could innovate how advice is delivered.
Plexus is aiming to achieve just this. Built by the digital studio M/A, with funding from the Open Data Institute, the knowledge base is being used to design resources for people with mental health conditions, their families, and even employers, to find support available in local areas, seek advice on how best to cope with returning to work after a period off and understand employee rights and employer responsibilities.
Plexus has pooled data from a couple of dozen organisations including NHS Choices, Department for Work and Pensions, the Office for National Statistics and Citizens Advice. In some cases the information has been pulled from APIs; in other instances it has been scraped using web data platform import.io.
The first tool Plexus developed is a chatbot called Grace, which is currently in beta testing. It enables users to record thoughts and feelings anonymously, receive feedback in the form of a newsletter and log in to an online dashboard to see a more detailed analysis, including whether there are any patterns in mood emerging over a period of time. The tool also offers guidance from the various governmental and charity websites under easy-to-navigate sections, such as legal rights and preparing for work.
“Through machine learning, Grace will intuitively know when our users are mostly likely to want to speak with us, be able to see the positive and negative nature of the user’s reply, and adapt the questions to encourage more positive responses,” explains Martin Vowles, creative director and co-founder of M/A. “We’re hoping this approach will allow us to offer a unique tool to each user which helps them understand and develop their mental wellbeing.”
Brown says that the potential for machine learning to tailor information and services is exciting. “It’s very good at looking at big piles of data for patterns. When we know certain things to be correct from one dataset, it can begin to make guesses about lots of other things based on what the machine is being fed.”
The sensitive nature of data being submitted by users on a platform like Grace, though, means many people are likely to be uneasy about their data being made accessible. To get round this, Plexus allows users to decide how their data is shared, with data licences lasting between 13 and 26 weeks. Vowles hopes that “as users become more trusting of Grace and what it can do for them, they’ll become more trusting with [us] using their anonymised personal data.”
Plexus aims to release a series of open datasets, including qualitative, quantitative and information on resources accessed by Grace users, to enable NGOs and local authorities to understand the country’s mental health provision. It’s hoped that they’d then use the knowledge to devise new strategies and ensure targets are met and resources and services available in local areas are of an acceptable standard.
There are also plans to make certain data available to employers, but “this has to be on the employee’s terms”. Vowles imagines that involving employers in the process of receiving support could allow them to get a clearer picture of mental health in the workplace. They could then adapt to make employees feel more comfortable and ensure their business has adequate support in place.
The potential to use open data to shape how future mental health support is delivered is an area that has been underexplored. At the end of last year, the Royal Society of Arts launched an interactive platform with Mind that allows members of the public to find out how well local health providers are looking after people with mental health conditions. The full dataset is available to download and includes data extracted from Public Health England, as well as metrics such as percentage of people with a mental health condition in employment in local areas. Plexus, however, is the first tool to use open data with the aim of providing people with a holistic view of their mental wellbeing.
Brown supports the idea of using open datasets and combine them, but stresses that any tool or platform has to benefit users. The data and information must be digestible and it needs to help them understand and take away from it what they need.
“It’s often extremely easy to forget that people with mental health difficulties are people first and foremost – not objects or problems.”