A project to empower people with Parkinson’s to manage their care from home via pioneering technology has received a funding boost of nearly £500,000.

Led by the University of Plymouth and University Hospitals Plymouth NHS Trust, the home-based care pathway has recently benefited from NHS Transformation’s Digital Health Partnership Award.

The unique pathway, launched in 2019, was co-designed by people with Parkinson’s and Parkinson’s clinicians and nurse specialists, and provides a novel innovative care solution combining at-home monitoring with the ability for patients to ask for healthcare practitioner input and support when they need it.

To provide an objective measure of their Parkinson’s movement symptoms, patients wear a wrist-worn device called a Parkinson’s Kinetigraph (PKG). The cutting-edge gadget, containing sensors, is worn around the clock for six days to monitor patients’ movements at home. The information it collects is relayed to the Parkinson’s team who can look for signs that their medicines need changing or that other interventions might be needed. The device also buzzes to remind people to take medication, which they can confirm with a swipe.

People on the pathway receive information about Parkinson’s, symptom tracking cards, a Parkinson’s passport to explain to others what is important about their Parkinson’s, and a phone number and email to contact directly for support. Following contact, their clinician will then see them within 10 days – with around four in five of these appointments taking place over video call.

However, people on the pathway are also required to fill out ‘pen and paper’ questionnaires to capture non-motor aspects of Parkinson’s, such as mood disturbances, bladder and bowel symptoms or difficulties with thinking and memory, for which therapy changes might also be needed. This relies heavily on the postal system and the manual input of results.

Now the NHS funding boost is set to digitally integrate this – as well as all their data and the ability to contact their clinician – into the patient’s electronic records over the next year. It will allow a patient to complete their questionnaires electronically via an app, with their information being seamlessly uploaded to their digital record. This will ensure the data is available to all involved in the patient’s care, allowing both patients and clinicians to make better informed decisions.

The project is led by Dr Camille Carroll, Associate Professor in Neurology at the University of Plymouth and an Honorary Consultant Neurologist at University Hospitals Plymouth. Camille’s research team are based at Plymouth Science Park. She said: “With the number of Parkinson’s patients exponentially increasing, it has been increasingly difficult for us to use existing healthcare resources to meet demand and provide good quality care. With our new care pathway we can empower people to take control of their condition and better manage their Parkinson’s at home, and importantly, access specialist care when they need it.”

She continued: “Usability is key, and we have worked directly with Parkinson’s patients and their families to develop the best care possible, including the use of digital technologies. Our holistic assessments help to provide reassurance and guidance for patients. We are able to see patients when they need to be seen and free up clinic capacity for those not on the pathway who need face-to-face appointments. This funding award will allow us to unblock some of the barriers to scaling up the pathway, significantly reducing the administrative burden for patients and staff, which in turn will allow us to make it available to many more people with Parkinson’s.”
On average, two people are diagnosed with Parkinson’s in England every single hour per day. Parkinson’s UK estimates, with population growth and ageing, this is likely to increase by a fifth by 2030.

It is hoped that utilising complementary digital tools to support care and self-management at home will not only enhance patient experience and provide quicker access to services, but it will also make the pathway more scalable, with the ultimate goal to help improve patient outcomes and ease pressure on the NHS.

Find out more about the new funding here.

Find out more about the Applied Parkinson’s Research Group.