A project to empower people with Parkinson’s disease to manage their care from home via pioneering technology has received a funding boost of nearly £500,000.
Led by University Hospitals Plymouth NHS Trust and the University of Plymouth, the home-based care pathway has recently benefitted 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 ten 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. 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.
“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.
NHS Chief Executive Amanda Pritchard said: “Parkinson’s is an incurable illness that has a significant impact on peoples’ lives and the implementation of this small watch into an innovative care pathway will dramatically improve their quality of life – providing a thorough review of their health and ensuring they get the care they need from the comfort of their own homes.
“Not only is it better for these people living with Parkinson’s, but it is also more efficient for the NHS.”
Hundreds of patients have already been issued with the watch in the Plymouth scheme, which could be rolled out across the country to the around 145,000 people who have Parkinson’s.
John Whipps, who was diagnosed with Parkinson’s in 2007, said: “The problem is that Parkinson’s changes from day to day, and even throughout each day. Under the traditional system, you have to remember all your concerns and symptoms between visits, ensure you can attend the appointment, have the stress of getting to hospital on time, and then remember to tell your consultant how you are. But with the PKG it really gives you confidence as you know it gives accurate readings to your clinical team, and you don’t need to rely so much on your own perception.”
Dr Carroll and her team are now set to work with Livewell Southwest and Patients Know Best to develop an integrated data platform and automated patient flow management system, as part of the project.
NHS England’s Director of Transformation, Dr Tim Ferris, said: “Thanks to NHS funding the work that was started by the team at Plymouth is now being taken to a new level of digital integration so that clinicians throughout the country caring for people with Parkinson’s can monitor their patient's symptoms from their desktop without requiring them to fill in diaries and attend multiple outpatient's appointments.
“This ground-breaking project is just one of 40 that the NHS are backing through the Digital Health Partnership Award which supports collaboration with patient groups in order to develop innovative new technology-based approaches to caring for patients and is a testament to the commitment of staff across the country to deliver our Long Term Plan commitment and roll out cutting-edge technology as quickly as possible.”