Developing an app to record and help prevent falls

Over the past 2 years, Dr Rosie Morris, Gerry and Elaine, have been working together on a research project to develop an app to better monitor falls in Parkinson’s. Rosie is a researcher at Northumbria University, whose research focus is understanding changes in movement as we age, while Gerry and Elaine are members of the Parkinson’s community with an interest in shaping Parkinson’s research.

We spoke with Rosie, Elaine and Gerry, about the app they are developing, and how they worked together.

Meet the team

Dr Rosie Morris is a Physiotherapist and researcher at Northumbria University. She has been researching Parkinson's for over 10 years, and her work has s focus on improving balance and walking and preventing and reduciing falls.

Gerry Standerline was diagnosed with Parkinson's seven years ago. He retired from his position of IT Manager when he was 59, having started in the computer industry in the early 1980s as a trainee programmer and worked for Next and Leeds City Council for most of his career. 

Elaine Webster worked in a range of education, training and outreach roles before retirement. She currently does voluntary work and is interested in the arts and culture. 

How might an app help with falling?

Rosie: At the moment, falls related to Parkinson’s are monitored using a paper based diary system. This might work for some, but for many there is a burden that comes with remembering to fill in the diaries and find time and means to post them back. People also don’t always fill them in straight away, which can lead to inaccuracies in reporting.

I am a physiotherapist and I have previously worked with people with Parkinson’s in the clinic. It’s really important that I can understand exactly why and how someone with Parkinson’s, or another condition, has fallen. This can change the way that I might treat them, the exercises I prescribe, or whether I need to pass on information to another healthcare provider. Asking the right questions and getting a clear understanding from the person in the clinic can take lots of time.

I was working on another research project, which was relying on these paper based diaries to monitor falls. At one of our working group meetings with people living with Parkinson’s, one member flagged that "we need a better system".

I could see the use for an updated way of monitoring falls, to help better understand why people might fall, with the ultimate aim to prevent or limit falls in people with Parkinson’s. This is why I decided to explore whether an app on a smartphone could help update this process and have an impact for those living with Parkinson’s.

I received a small grant from the Private Physiotherapy Educational Foundation to explore an electronic app based recording system. Before I could go any further, I needed expertise from people living with Parkinson’s to make it as accessible and valuable as possible. This is where Gerry and Elaine joined the project. We formed a team with different expertise and skills to co-own and accelerate this project. This was done using principles of co-production.

What is co-production?

Rosie: Co-production is a way of thinking collaboratively and sharing a problem with input from all stakeholders in the project. This ensures the best results for the community, and allows us to continually learn and improve through shared ownership and joint decision making.

Gerry: In our case, our team is made up of people with different skills, like different pieces of the puzzle coming together. It was essential to assemble the right people. This meant researchers like Rosie, and people with Parkinson’s like myself and Elaine, but also people with technical expertise in app development.

Elaine: Co-production is a relatively new way of working but I hope in the next 5 to 10 years it will become the norm. I believe people affected by Parkinson’s being co-owners of the project makes the research more thorough and delves deeply into the issues that people experience.

Gerry: Working together and including everyone from the beginning reduces the risk of the end product of research not working for the people that need it. It helps us find the right questions, and then get to the best answers, more quickly.

Rosie: Co-production is also gaining traction in other places. More and more, research funders or device approval groups are looking for evidence of co-production, as evidence that a new product will meet the needs of the user from the beginning.

Tell us a bit more about the app

Elaine: The app is designed as a self management and communications tool, and to allow people to start to detect their own patterns of falls. The hope is that this way of monitoring could help people identify behaviours that might lead to falling, and then work to change them and prevent falls.

What progress have you made with the app so far?

Rosie: Together, we developed the app over 6 months and formed a very basic design. We needed to work out what should be included in the app, like asking users to record how or where they fell, what the cause of the fall was, and if there were any injuries. The app can then use this information to form a report that can be viewed by users or healthcare professionals to understand more about the falls. We worked with an app developer who helped us build this first prototype.

Elaine: Then it was important to share the prototype with an advisory group to get feedback. They helped us with the design of the app, and gave us really useful feedback such as how large the text needed to be. Or adding extra features such as a clock interface to help users record the time.

Once we’d updated the app based on this feedback, we asked 15 people with Parkinson’s to download and test it. We also asked healthcare professionals what they thought about the app.

Gerry: The healthcare professionals had a lot of great ideas, and in hindsight, we should have involved them earlier.

Elaine and Gerry, what made you decide to get involved with this project?

Elaine: Before I started on this project, I had heard about the role of a Public and Patient Involvement (PPI) volunteer through Parkinson’s UK. I signed up and took part in the training from home, which I found really interesting as it helped me understand some of the language that is used to describe research. The training helped build my confidence to take part in this group.

I enjoy working with others on collaborative projects. I have been treated professionally and supported to develop new skills. It’s really built my confidence, showing that I can contribute to important projects at this level.

Gerry: I joined the project because it was relevant to me as I do tend to fall a lot. I will put my hand up to help with anything that will be beneficial to Parkinson’s research, especially if it relates to some of the symptoms I experience.

I have an IT background so I am interested in the app. Working in this way, I can see progress as the project evolves and be a key member of the team driving this forward, not just a fill-in. It feels like I’m getting involved with something that is going somewhere, and that gives me a sense of achievement.

What’s next for the app?

Rosie: At the moment we have a basic prototype for an app for Android phones and tablets. We’ve been able to make this open access, which means that anyone can see the work behind the app and make use of the work we have done so far.

We are now at the point where the app needs further development and funding to produce a more robust prototype. This is vital before it can be used by people with Parkinson’s, their loved ones and their healthcare professionals.

How did Parkinson’s UK help you get started with co-production?

Rosie: Parkinson’s UK helped to link me up with people affected by Parkinson’s who might be interested in working alongside me. They also provided advice and guidance along the way. I encourage anyone wanting to involve people with Parkinson’s and their loved ones in their work to get in touch with the friendly team!

What are your top tips for co-production?

Gerry: It’s important to have a good balance of skills. Jason the app developer was an essential part of the team, who helped us understand the balance between what we wanted to include, and what was realistic. And having open communication between all of us was key to making sure we were all happy with the prototype before we asked for feedback.

Elaine: Reflect on the process as you go. Thanks to the Parkinson’s UK training I’d been inspired to keep an involvement diary, which helped me look back and work through problems. With it being such a long term project, it’s really valuable to have a record to look back and learn from things that we tried, or could have gone better.

Rosie: It might not work for every project, but when it does, it means you get to the answer much more quickly. It’s really important for researchers to consider co-production as you can really understand what people need. By working together and having everyone’s voices represented, it irons out problems later down the line. It takes time, but it’s worth it!

Thanks to Rosie, Elaine and Gerry for their time and support.

Are you a researcher who wants to work with Parkinson’s UK to involve people with Parkinson’s in your research? Find out more about how we can support you to involve patients and the public in your research in a meaningful way.