Patients shape study on improved monitoring of Parkinson's symptoms

Members of our Movement Disorders Health Integration Team (MOVE HIT) have published a protocol in BMJ Open for a study on how new technologies could be used to better monitor the symptoms of Parkinson’s Disease.

This work has been a close collaboration with the HIT’s Patient and Public Involvement Group, who have improved study materials and plans by sharing their direct experience of Parkinson’s.

According to Parkinson’s UK, more than 145,000 people in the UK are diagnosed with Parkinson’s every year and the disease can have a wide range of symptoms.

There is currently a limited number of ways Parkinson’s can be monitored.

This affects not only people’s clinical care, but also the way we determine how effective experimental treatments and interventions can be.

A pilot study, led by Dr Catherine Morgan, Clinical Research Fellow at University of Bristol, uses technology such as wearable devices and environmental sensors to measure and monitor Parkinson’s symptoms. The technology is from the SPHERE Project (https://www.irc-sphere.ac.uk/) which stands for the Sensor Platform for HEalthcare in a Residential Environment. This has been embedded in a house in Bristol to be used as a test bed. Study participants will stay in the house and researchers will capture detailed information about people’s behaviour and movement.

Along with questionnaires and interviews, the study hopes to build up a picture of people’s symptoms and how best to characterise them. The Movement Disorders HIT’s patient and public involvement group has been involved since the start of the study.

Catherine said: “Working with the Movement Disorders HIT’s patient and public involvement group on this research has been extremely helpful. Through a combination of meetings, written comments and practical visits to the SPHERE House, they have really improved how we can ensure that the study is understandable, accessible and ultimately useful for people with Parkinson’s and those close to them.”

One of the patients involved in the study is Professor Dick Denton, FMedSci FRS, a retired Emeritus Professor of Biochemistry from the University of Bristol.

Dick said: “It has been a real pleasure to follow the development of this fascinating and potentially important research project by talking with Catherine every month or so.

“I can contribute, in a small way, not only as a person with Parkinson’s but also as a retired academic biochemist with much experience of medically-related research (albeit distant from this project).

“One example has been the encouragement of the use of tablet-based, rather than paper-based, diaries for the participants to complete during their stay in the house. Another has been to simplify the means of seeking help for any difficulties that the participants may have while staying in the SPHERE House. Excitingly, the first pairs of participants are now being followed during their stay in the house – let us hope that the new wave of COVID-19 does not result in any serious disruption of the study.”