People often ask how Charco is working, and what we do day to day. Well, we have now decided to share our behind-the-scenes workings with you! In what is the first in a series of articles looking at what goes on behind the scenes at Charco, we discuss how we have developed our CUE1 app.
Team Charco’s vision is to provide an interactive, fun-to-use app, which works together with CUE1 to bring smiles back for people with Parkinson’s. It has been a truly exciting journey, and with more than a few learning curves along the way! We hope that this post can give you a better idea of what Charco is up to, and how you could participate. As ever, we would love for you to help guide us along the way 🙂
How it All Started: “I Think This Might Help Me Better Manage My Daily Routine!”
In the early stages of developing the CUE1, we were asked by many people about the long-term effectiveness of the device. We often conduct our testing onsite, and so were curious to investigate this ourselves. Previous studies (see here and here), have provided evidence for longer effectiveness of the focused stimulation, and for the longer effectiveness of cueing . Our clinical advisor Dr Galloway suggests that as it is a non-invasive intervention acting at the periphery (as opposed to a centrally acting therapy like a drug), it is unlikely for users to develop a “tolerance” to its effects over time, as they would with medication. CUE1 has not yet existed for long enough to test this, but we are keen to see how it performs over time!
It was with this original ambition that we began working on the app. The app has been designed to combine movement tasks, games, and questionnaires, and can show the progression of the symptoms of Parkinson’s. Once we had come up with this concept, we showed it to our Charco Innovators. The Innovators are people with and around Parkinson’s, who contribute to Charco and give us close feedback on our developments.
When showing our app plans to the Innovators, one gentleman told us, ‘I think this might help me better manage my daily routine!’. Another Innovator, Mark, told us how ‘keeping tabs on various elements of PD can really help narrow down’ which activities or treatments work best for him as an individual. This can include, Mark said, ‘the exercise I take, its duration, intensity […] the food I eat and when, the medication I take’, and even ‘sleep quality’. He noted that, ‘luckily, there is a growing emphasis on apps to help in recording this information’. His enthusiasm gave us a huge realisation about how the app could be used. The information which the app collects is not only helpful for researchers like ourselves. It could also be helpful for individuals living with Parkinson’s, in better managing their daily lives. Indeed, anytime someone with Parkinson’s tells us that a feature would be helpful, we do our best to make it as elegant, engaging, and useful as possible.
With these initial steps, our journey began 😊
First Steps: Working With IJS
We love meeting and learning from new people wherever possible, and the initial stages of our app development provided the perfect basis to do this. Once our ambitions and concept for the app had been finalised, we made the next essential step. We developed a prototype, a working version of the app which we could use and interact with. To achieve this, Charco worked together with Imperial Junior Solutions, collaborating together to produce the working prototype of our app.
Adrien, who founded IJS and is now a project manager at Charco, is proud of how the app has developed. ‘When the project first started, Charco NT and IJS worked together on designing the best possible app for patients. That was always our priority’, he told us. ‘Working together has been absolutely lovely, and we never hesitated to bring small changes to our products, that would both improve patient experience and allow us to continue working together.’
One of the features which we’ve especially enjoyed using in our data collection has been the ‘Spiral Test’. This is a short task, as part of our app, in which participants trace a spiral shape with their finger. This seemingly simple activity can be a surprisingly useful measure of several Parkinson’s symptoms, such as tremor and bradykinesia (slowness of movement). The test also requires you to draw an equal number of spirals with both hands, which can be surprisingly difficult: you can often tell very quickly whether a person is right or left-handed!
The Spiral Test is a well-established clinical methodology. Even so, in developing it for use as a feature of the Charco app, we found several opportunities to conceive of the task in a new way. We found that we often needed to think outside the box, particularly when considering how the app would adapt to different smartphones or tablets. Factors such as screen size, or model of device (differences between Apple and Android systems, for example) have constantly presented new and stimulating points of discussion for the whole team 😊
App Development Stage: Testing, Fixing, Evolving
Creating this prototype allowed us to move into the next stage of our development. At this stage, we wanted to hear from people with and without Parkinson’s and receive initial feedback. We could also begin collecting data, which would then be used to help track symptoms, through machine-learning algorithms.
Through people using the app, we were able to receive data on variables such as ease of movement and coordination. We have received a diverse range of data, both from those with Parkinson’s, and people who do not have the condition. This is an ongoing part of our development process, and something which we will continue to share insights on. Developing the app has also highlighted just how important the involvement of the Parkinson’s community is. The time, energy, and patience which people have donated to our projects has been utterly amazing. We have been delighted by the feedback we have received so far, which has been vital when making improvements to our designs.
We also started to involve people with Parkinson’s through group feedback sessions hosted online. Their experience of using the app has been extremely insightful for us, and allowed us to make the application further tailored to their needs. However, it was still not quite the same as consulting in person. The most enjoyable part of being at Charco has always been interacting with the diverse and dedicated people who have contributed to our efforts. This has been something we have really missed during the Coronavirus pandemic, and cannot wait to resume meeting people face to face as soon as possible.
Who is Team Charco?
The pandemic has also had an effect on the way team Charco works with each other. Remote-working has introduced us to lots of new joys, such as frozen screens, dodgy internet, and accidentally talking over each other! All jokes aside, working remotely has also presented many opportunities which we may not have otherwise explored. Physical location has become almost irrelevant, as we can quickly jump onto Zoom and meet whenever we need, to discuss the next exciting development. Even so, one of the clichés which the pandemic has proved time and time again is that ‘you don’t know what you have until it’s gone’. Many of us can’t wait to do things which, not too long ago, were simply facts of life, such as meeting in an office or commuting. The Charco team is no different, and we hope to soon be able to meet regularly in person.
In Charco, many different skills have come together, working towards one goal: to improve quality of life for people with Parkinson’s. This variety has been a real strength for us. Once involved, each person has been able to contribute and enhance efforts in some area, whether it be design, technology, regulation, or user experience. Charco has an inclusive culture, and new ideas and suggestions are constantly encouraged. This supportive environment means that many meetings become a lot longer than planned, with everyone keen to provide new ways of thinking! This has been particularly effective when developing our app. Whether designing, tweaking, or moulding each feature, we do our best to make the app truly benefit people through its use.
When discussing any new feature, one priority has also consistently shone through: the real-life implications for anyone with Parkinson’s. This is something which guides every decision we make. With every new development we ask, ‘could people with Parkinson’s use this with ease?’; ‘would this be accessible to a person with a tremor?’; ‘would this be fun to use?’; and, perhaps most importantly, ‘is this useful for people with Parkinson’s?’. In developing our app, these questions were particularly essential. We have focused on making it as accessible, enjoyable, and beneficial. Although we do our best to launch an app that addresses every requirement, we never think of it as a finished product. Rather, the app will never be ‘done’, and we will keep listening to feedback, and continue to improve it.
How You Can Help
If the app development process has taught us anything, it’s that we can only do what we do with the help and kindness of others. This is an incredibly captivating time to be involved in any capacity with Charco. Indeed, we have so many plans for the future, that it is sometimes hard to keep track of all of them! If you would like to become involved in our development, learn more about what we do, or even just have a chat with the team, please contact us at firstname.lastname@example.org. Meeting and learning from people with and around Parkinson’s is the motivation behind everything Charco does, and we are always looking for new chances to come together with people who are as passionate as we are to bring smiles back for people with Parkinson’s. 😁
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