One in every 500 people has Parkinson’s disease, which equates to 10 million people globally with the condition. Patients often have infrequent contact with their doctors, so large gaps exist in our knowledge of how people with Parkinson’s function day to day. A unique global health project using smartphone technology hopes to provide valuable insight into the daily lives of people with the condition and demonstrate the huge potential for digital technology to empower and engage people in self-management and the enhancement of their care.
100 for Parkinson’s is a global research project, led by UK digital health start-up uMotif, and supported by organisations including The Cure Parkinson’s Trust, Parkinson’s UK, Nesta, and the Cabinet Office. The aim of the project is to investigate how people with Parkinson’s can use a digital platform to support themselves in between visits to their consultant neurologist, and at the same time learn more about the day to day changes in symptoms and wellbeing during the large gaps (often six months) between appointments.
Participants were recruited to the study via a range of methods, including traditional print and TV coverage, digital media, social networks and through the support of patient groups and corporate partners. In order to understand how people with Parkinson’s utilise the digital platform, it was necessary to investigate how healthy volunteers interacted with the platform, hence the inclusion of the control group, subdivided into carers of those with Parkinson’s and others.
People with Parkinson’s, their friends, family and the general public were asked to use the uMotif app on their smartphone or tablet to monitor their health for 100 days and donate their data for research. Over 4,200 patients took part in both the United States and the United Kingdom over the course of 2016 and early 2017 using their own devices to report their experiences. The app enabled people to track sleep quality, mood, exercise, diet and stress levels, areas that are commonly affected by the disease, as well as symptoms and lifestyle factors of their own choice, and to view their results in real time.
Throughout the study, the study team engaged with participants through weekly emails, social media and study blogs, sharing information on who was taking part and the motivations and hopes of the participants involved. This is likely to be an important component of clinical research in the future, with participants treated as partners in the research journey rather than passive contributors of data.
While other initiatives, such as the mPower study, have focussed on the motor symptoms aspects of Parkinson’s, 100 For Parkinson’s was designed to assess the non-motor aspects of the disease, which people with Parkinson’s often report as having a large impact on their quality of life. Through the 100 For Parkinson’s study, uMotif and Parkinson’s charities hope to gain greater insight into the different clinical presentations of Parkinson’s, their needs and how digital platforms can best be utilised to support people in their day to day lives.
100 for Parkinson’s is looking to expand the initiative globally, with interest received from over 50 countries. uMotif, are also working with partner organisations to increase the potential for digital research into Parkinson’s. A partnership with Global Kinetics, manufacturers of a wearable device to capture motor symptoms of Parkinson’s, has recently been announced, enabling researchers to build an even richer picture of the daily lives of people living with Parkinson’s.