Inclusive Digital Transformation in Mental Health: what you need to know
Knowledge into Action Briefing
About this briefing
This briefing is to share key insights from Thrive by Design’s work on inclusive digital transformation in mental health and to encourage change in policy and practice.
There is rapidly growing interest in tackling digital exclusion in mental health and people want to learn about best practice and from each other, particularly given it is an emergent area with limited evidence.
The briefing should be read in tandem with the Knowledge into Action Briefing on Inclusive Digital Transformation.
Work by Thrive by Design which underpins this briefing:
Supporting local initiatives, NHS Trusts and Integrated Care Systems e.g. mental health information platform Mindwell, decision tree modelling for West Yorkshire Health and Care Partnership and Inclusive Digital Transformation work in Leeds and York Partnership NHS FT.
Exploring ways in which to enable a more Inclusive Digital Transformation approach to mental health services at a local, regional and national level for NHS England and Improvement.
Facilitating a ‘Digital Health Inequality Pioneers’ programme for NHS England and Improvement to support ICSs to advance leading work.
Producing the NHS Confederation’s Mental Health Network’s guide on staff digital skills.
This work has involved engaging a wide range of stakeholders (including people living with mental health illness who use/need mental health services and people from their support networks) through interviews, surveys and workshops and literature reviews and analysis of system returns.
Key points
The relationship between mental health, inequalities and digital is a complex one and it is important to not make assumptions about digital exclusion and people who use or deliver services.
“Digital inclusion in mental health is multi-leveled and multi-faceted. There needs to be better planning for how services might use digital resources in their routine practice, better training and awareness of the platforms that work and are safe depending on the context of treatment, increase staff confidence about using digital resources routinely through training and ongoing support with the processes. Increase reach and accessibility of those resources for individuals with disadvantages. Encourage open feedback and communication of what works and what doesn't”
Survey Respondent
There are additional risk factors to people living with mental health illness accessing digitally enabled services. Lack of trust, lack of available private space and perceptions that a digital service is not as good quality as a face to face service are some of the barriers which were particularly emphasised in mental health. For some people there are barriers related to specific mental health illness, symptoms and treatment.
Barriers and risk factors are complex and interrelated
Image one: barriers and factors of digital exclusion. (click to expand)
The majority of Integrated Care Systems are engaging in generic digital inclusion activities and digital inclusion activities taking place in mental health within the NHS tend to be patchy, short term, single focus. There are projects that demonstrate good practice that are driven by passionate people in organisations and places.
Co-design involving staff (clinical and non-clinical) and people with living experience can help understanding of the issues and development of solutions. There is limited evidence of this happening, particularly with more excluded communities living with mental health illness. Recognise the value of the voluntary sector and smaller grassroots communities and other trusted touchpoints in reaching more excluded groups.
The evidence suggests that local, cross-sector based solutions are more likely to be effective due to differences in local context and the importance of relationships and partnership working.
There is a need to support and upskill existing staff so that they feel confident both using, and signposting digital resources. Informal, personalised training that targets specific needs (e.g. peer-led training and digital champion models) is valued alongside more formal training.
The perspective of people with living experience of mental health illness and of using services
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What works for one person, will not work for the next. And what one person needs support with, may change over time.
Assumptions are often made about what a person can or can’t do, or what they want or don’t want.
Often people who are accessing support for their mental health get short term support or intervention for what is often a longer term need or set of needs. The opportunities for digital to support in between interventions or service access are recognised, however without guidance from a trusted person who understands an individual’s needs this can be overwhelming in terms of where to start.
“The thing that people forget is that I feel like this 365 days a year. So I need help at different times of day. I don’t see what digital can do but if it helped in those times then maybe. I need someone to show me.”
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Use of digital has pros and cons for many of the individuals Thrive by Design spoke with. For some it is a lifeline for communicating with others, for a release (e.g. gaming) and for doing both practical and enjoyable things (e.g. shopping, listening to music, booking travel). It can also be detrimental for mental wellbeing (e.g. the feeling of always ‘being on’ or increased anxiety around how something works) or bring other risks (e.g. others taking advantage, or communicating with people who are not a good influence).
There are many reasons why people may not currently have access to the internet, a device or both and this may be within the person’s control or not. For example: loss, theft or pawning of devices, changing views on technology and how I want to use or avoid it at different times, loss of interest, not having reliable internet connection within housing set up, changing living arrangements.
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Services change and people know and expect that. However, it is important for people to understand why things are changing, how it will affect them and what they will need to do. Not being communicated with is the biggest concern when things are changing.
Being involved in how changes are made is seen as a good thing. However, the majority of the people we spoke with had not been asked or did not know how they would get involved. One person spoke about ‘over-volunteering’ them-self to things and how this had a negative impact on their wellbeing at the time - longer term commitments can sometimes be more challenging as you don’t know how you are going to feel or what else you will have on.
It is important to consider how people are involved and what will ensure it is going to work for them. Involvement alongside trusted people may be useful (e.g. a family member, peer or part of their support network) and careful consideration should be given to where the work happens, how it happens, language used and how this is done in a meaningful way.
hold
Shining a light on good practice
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The trust carried out a project to understand what support is needed to improve levels of digital health literacy in people living with serious mental illness on the island, how the support can be delivered and to evaluate the support and incorporate positive outcomes into care pathways. They recruited people living with severe mental illness who self-report being digitally excluded/low levels of digital literacy to run focus groups to design the content and delivery of support needed to improve levels of digital health literacy in this group of people.
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The Traumatic Stress Clinic at Camden & Islington NHS Foundation Trust partnered with Asda, Helpforce, Jangala and AbilityNet to provide digitally excluded service users with the means and skills to access remote therapy during the Covid-19 pandemic through supporting access (donated tablets, internet connectivity devices), skills support (dedicated technical support which also supported development of skills that could be used beyond health-related purposes). Identified impacts include improved quality of life and overall digital skills and reduced social isolation. Through delivering this, the trust built up confidence to expand and work with AbilityNet and other partners to expand the service. The support of partners enabled the team to develop a ‘proof of principle’ around the benefits of targeting digitally excluded populations. This was reported as instrumental to being provided with resources to employ a digital inclusion officer.
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The Seaview Project is a homeless charity in Hastings that is supporting local homeless and insecurely housed people to use technologies to access health services through provision of access and support in public spaces such as libraries, with those with no fixed abode who have a mental health illness a specific target group. Approaches included access and skills support - an outreach team provided devices to link rough sleepers with health professionals, training up digital champions at the local library and wellbeing centre and advertising dedicated support sessions including raising the profile of its inclusive policy.
During a pathfinder project as part of the NHS Widening Digital Participation Programme, Seaview supported 122 people. Of the 3,000 web pages viewed by the people supported, 45% were related to health and 15% of those were relating to mental health conditions specifically. Conversations started which led to better access to health services and steps to self-manage health and wellbeing, including mental health. For example, one rough sleeper took the step to visit their GP and discuss their depression, medication and other treatment options following viewing NHS information online.
holding text
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Please see our ‘Knowledge into Action Briefing’ on Inclusive Digital Transformation for general recommendations on inclusive digital transformation. For mental health specifically, there is a need to:
Raise awareness of the clinical effectiveness of mental health digital solutions through peer stories and trusted sources.
Build evidence on how to make digital transformation inclusive across disadvantaged and excluded groups to support mental health, including case studies, success stories and the impact this has.
Strengthen existing skills development mental health professional frameworks to embed digital skills and how to embed co-production in care pathway improvement more explicitly. Most do not touch on co-producing health care or give more than a passing reference to digital. If digital is referred to, it is sometimes assessed as an ‘optional skill’.
Create the conditions where early adopters of Inclusive Digital Transformation practices in mental health can help others, e.g. showcasing good practice, peer to peer networks etc.
Conclusion
There are a number of digital inclusion schemes running, but exclusion is a complex multi-faceted issue that cannot be fixed with a one-off programme or initiative, and needs to be tackled at a system level.
There is a long way to go to ensure we do not compound pre-existing inequalities but there is energy for change, pockets of good practice and a wide open window of opportunity.
You can access the full, long read, version of this Knowledge into Action Briefing below.
Coming soon
The Guide to Inclusive Digital Transformation in Mental Health resulting from a full discovery, engagement and learning programme funded by NHS England and Improvement. The discovery report from this work is available to download here.
Inclusive Digital Transformation Week: fireside chat with Kirstin Blackwell about our work across mental health and care services.
Join nearly 300 people from a diverse range of backgrounds and places on our Inclusive Digital Transformation Challenge community on FutureNHS.
To find out more about our work email us on info@thrivebydesign.org and follow us on Twitter @TweetsByThrive.