Project Nightingale x My Arthritis App
Project Nightingale was launched in 2018 by the Royal National Hospital for Rheumatic Diseases (RNHRD, RUH) in Bath, and is now entering an exciting new phase in collaboration with social purpose company Ampersand Health and the existing My Arthritis app!
Project Nightingale allows people with axial spondyloarthritis (axSpA) to track daily symptoms and behaviour via a smartphone app. You can log how you are feeling on a day-to-day basis using trackers, and then view your logged symptoms over time via a graph. This provides you with a detailed record of how you have been feeling over time and can help you gain a better understanding of your symptoms and how they fluctuate. The app will also allow you to connect your wearable device if you have one. If you are consented to the Bath Spondyloarthritis Research Biobank, this unique data can then be used for research into axSpA, to help us gain a better understanding of the condition.
My Arthritis also offers three engaging and interactive 14-day courses, made specifically for those living with inflammatory arthritis, led by experts who understand what life with arthritis is really like. You can even try an Acceptance and Commitment Therapy (ACT) or General Wellbeing course via the app, to help cope with your symptoms.
We really do see development of the project as a collaborative process - those of you living with axSpA are of course the experts, and we want to learn from you. So please do get in touch via email to hello@projectnightingale.org if you have any ideas for app content that you want to see, or any community events that you would like us to put on in future.
Visit our online brochure to find out more.
We look forward to hearing from you!
Sign-up for Project Nightingale updates!
Would you like to stay up-to-date with Project Nightingale-related news and research? Or do you have any ideas to help us improve the app or app content? If so, we would love to hear from you! Please enter your email into the sign-up box below, or email hello@projectnightingale.org and one of the team will be in touch.
What is it?
We recognise that people with Axial Spondyloarthritis (axSpA) may only have a 15-minute appointment when they visit the hospital for their check-up. These meetings are likely to focus on medication and trying to prevent the condition from progressing, rather than quality of life and wellbeing. Introducing…the ‘Nightingale’ study.
The Nightingale study is designed to empower people with axSpA to take control of their symptoms and improve their quality of life. Not only will the data gathered help consultants to help patients manage their condition, but they will be able to see their own ‘real time’ data on factors that may influence these symptoms, allowing a level of self-management.
[Please note that the below video was recorded back in 2018, when we launched the project in collaboration with a different app provider - umotif. We have now migrated to the My Arthritis app, for the next phase of the project]
How does it work?
It’s simple – join the study via the My Arthritis app and record a few bits of information each day to track your symptoms and movement. If you have a wearable device (like a FitBit/Apple Watch), the app will connect with it and automatically track sleep and exercise data. Currently, data recorded relating specifically to a patient’s quality of life – i.e. work, sleep, exercise and flares, is poorly recorded and can be subjective and prone to recall bias (it can be difficult to remember how your sleep has been affected over the last year, how many flares you have had etc). This app makes it easy!
How will the data be used?
The data gathered in the Nightingale study can be used to help predict flares, adopt regular exercise programs and improve sleep, optimising a patient’s clinical consultation by addressing issues important to them. The data could also be used to help understand the benefits, or lack of, from any new treatments started. Importantly, this project is ongoing, so the longer you can log for the better – there is currently no end date for data entry! Please note: Only your consultant will be able to see individual-level data. However, by taking part, all data will be made anonymous to be used for research to help others with axial spondyloarthritis.
Help with project nightingale
If you would be interested in joining a focus group to seek help and assistance using the app, discuss the benefits with others and understand a little more about the project then please contact hello@projectnightingale.org to register your interest. The more interest we get, the more likely we’ll be able to put something on to help.
Frequently asked questions
Do I have to own a fitness device or fitness app to participate? No, not at all. Any data that we can gather will prove useful so please do participate even if you do not have access to a fitness app or device.
Which apps or devices are compatible with the My Arthritis app? Although you don’t have to synchronise an app or device, there are many that are compatible should you wish.
Will I be reminded to complete the app? Yes, reminders will be sent daily via email and the Messages section, within the "Profile" tab.
If I’m tracking the affect of my menstrual cycle, how can I capture where in my cycle I am? Please use the Notes section within the "Profile" tab to capture this information.
If you have any general questions about the study please email us at hello@projectnightingale.org and we’ll be happy to help in any way we can. You can also visit the "FAQ" section of our website for more information.
