The SURE Recovery app is for people who are using substances, in recovery or are thinking about recovery. It was developed at King’s College London (King’s) alongside people in recovery. Here, Paul Lennon, Mel Getty, who both have lived experience, and Alice Bowen, a researcher at King’s, talk about the development of the app, why co-development was such a central part of the project, and what they’ve learned from the process.
Who are we?
We are part of the SURE App team which brings together people with lived experience of treatment for drug and alcohol use and researchers from King’s. This relationship started over 10 years ago when Aurora, a peer support project based in south London, met with Professor Jo Neale. She wanted to hear what recovery meant to people who had experienced it. From there, we co-developed an addiction service user research group who support researchers to plan their projects. We have developed a meaningful relationship, working together on various projects. Most recently, this collaboration led to the co-development of the SURE Recovery app.
“Throughout my treatment, I was asked to fill out forms that didn’t make sense or have any meaning to me or my journey. It’s been great to be involved in creating something that is meaningful, and relevant, that people will actually be able to relate to.”
Why Co-development?
We think people have the right to be involved in research that might affect them. The app is for people in recovery, so we thought it was vital that they contribute to its development. By working collaboratively, we have brought together a range of knowledge that strengthens the relevance and value of the app.
Paul: ‘I think people with lived experience need and deserve to be asked their personal opinions on questions or projects that relate to us. When asked the question “what does recovery mean to you?” It’s important to understand what you are asking. There is no simple answer to this question, because it varies over time and will depend on the individual being asked. That’s why asking people for their views is so important.’
Mel: ‘Having lived experience can often make you an expert in that subject, it can be a skill in itself and can be used in a number of positive ways – knowledge is power. Sharing your experiences can definitely help others. We have an understanding of what it feels like to access services and live through an addiction. Working collaboratively enabled us to drill down, and bring together professional’s visons, with lived experience knowledge – it’s a powerful combination.’
Alice: ‘I think people with lived experience have a much better understanding of what they want and need from an app than we ever could, so working together from the start has been an integral part of the project. Hopefully the app is better and more meaningful for people who might use it because of this approach.’
The process
We worked with a digital designer Mindwave Ventures, who employ a user-centred approach. The process followed 4 key stages:
- Discover: we conducted interviews and worked to find out more about people’s experiences of substance use and recovery and what they wanted in a recovery app
- Define: Based on what we found we decided which features would be included in the app
- Develop: We co-developed all of the content in the app together
- Deliver: We launched the app in October 2019. It’s free on the Apple App Store and Google Play.
A key part of this was ensuring there was ongoing testing and improvement. Throughout development we had regular meetings to gather feedback and ideas from people in recovery, researchers and clinicians.
Mel: ‘It was refreshing and empowering that the project didn’t turn into a tick box exercise, and that working together throughout was exactly what we did. With individual strengths, there was always something new to learn or contribute. There wasn’t any “us and them”, we worked as a team with a shared goal – being able to support as many people as possible with the app.’
Paul: ‘The process was long, and I must admit at times frustrating, but I think it’s important to be prepared to deal with setbacks in projects like this. We were so gung-ho about getting the app out there as we really feel that it can help people in so many ways. Too many to go into here, so you’ll need to download the app and see for yourself.’
“…we can do co-production and involve all the required views, but it’s important to make it meaningful, especially to the end users.”
What we learned
The project has definitely been a learning process for all of us. It’s shown us the importance of co-development in research and in designing products and services to make sure they are non-judgemental, relevant and meet the needs of the people accessing them.
Alice: ‘For me, I’ve learned a huge amount about people’s experiences of addiction, treatment and recovery, and about meaningful co-production where everyone’s views are valued and respected. I’m just starting my research career, and I’ll definitely continue to work collaboratively with people with lived experience – I think their contribution is essential.’
Paul: ‘I think that all players in the development story have their own parts to play, a learning point I took from the process was to understand that we can do co-production and involve all the required views, but it’s important to make it meaningful, especially to the end users.’
Mel: ‘I’ve learnt a lot about the research process and how important research is. Being involved every step of the way has been really important. Throughout my treatment, I was asked to fill out forms that didn’t make sense or have any meaning to me or my journey. It’s been great to be involved in creating something that is meaningful, and relevant, that people will actually be able to relate to.’
The impact of co-development
We have formed a strong interdisciplinary team and an ongoing collaboration of people with lived experience and researchers at King’s. We continue to work closely together and are currently building a national service user network to disseminate the app.
Mel: ‘The impact for me is our continued work with people with lived experience who have seen the value of the app and have joined our network to champion it. It’s like a knock- on effect to reach as many people as possible who would find the app useful during their own recovery and to reassure them, they are not alone.’
Alice: ‘One thing I really love about the app is that it doesn’t advocate one particular approach, like there is information on both abstinence and harm reduction in there, and the recovery tracker looks beyond just substance use and takes a more holistic approach. This is all a reflection of people’s lived experience and what they thought should be included. The impact then, for me, is that the app actually reflects the views of people with lived experience and will hopefully be relevant and useful to them.’
Paul: ‘Most importantly we have developed the app itself which we believe will be used by people using drugs and alcohol, we hope they find it helpful.’
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