Excellence Network project grant outcomes showcase
Explore the projects completed through funding from the Excellence Network project grants scheme.
This showcase presents an overview of each completed project. Read on to learn more about how these service improvement initiatives were implemented, the outcomes they’ve had, and their promising impact on the Parkinson’s community.
To find out more about any of the projects or to connect directly with the project leads, email [email protected].
Ensuring sustainability of an online Parkinson's disease research register: Join Parkinson's Research (JPR): small project grant
Who we are
Professor Camille Carroll, Professor of Clinical Neuroscience and Honorary Consultant Neurologist, Newcastle University
Professor Yan Yiannakou, Consultant Neurogastroenterologist, County Durham and Darlington NHS Foundation Trust
Rebecca Petty, Research Assistant, University of Plymouth
Trevor Liddle, Senior Research Information Analyst, Newcastle-upon-Tyne Hospitals NHS Trust
Kate Hockey, Patient and Public Involvement Representative, University of Plymouth
Dr Marie-Louise Zeissler, Post-doctoral Research Associate, Newcastle University
Rory Davidson, Clinical Trials Manager, Newcastle-upon-Tyne Hospitals NHS Trust
What we wanted to achieve
We aimed to create a Parkinson's-specific extension of the existing NHS-based Research+Me registry to connect researchers with people with Parkinson's who were interested in participating in research.
What we did
Working closely with Research+Me, people with Parkinson's and their care partners, and professional researchers, we developed a question set that would inform researchers but not overwhelm people with Parkinson's.
Focus groups allowed us to co-produce the registry landing page, logo, registration survey and messaging. Volunteers performed user testing with us before we piloted the registration process.
What we learned
The work carried out allowed us to launch the JPR@Research+Me national registry designed to raise awareness of Parkinson's research and facilitate research recruitment.
Among the main learning points from the project, we identified:
- Patient and public involvement was crucial at every stage.
- The interface must be simple, clear and accessible for successful use by people with Parkinson's.
- Patients needed to trust the process, and data protection policies must be clear and accessible.
Our next steps will be to further develop plans regarding sustainability and spread. We've secured an Excellence Network large project grant to carry out this work and to build accessible dashboards.
A quality improvement project to identify, assess and address unmet needs of people with advanced Parkinson's in North Cumbria: small grant project
Who we are
Dr Rosanna Varden, Clinical Research Fellow, North Cumbria Integrated Care NHS Foundation Trust
Dr Ailish O'Callaghan, Consultant Geriatrician, North Cumbria Integrated Care NHS Foundation Trust
Professor Richard Walker, Consultant and Honorary Professor of Ageing and International Health, Northumbria Care NHS Foundation Trust
Gail Cooper, Medical Secretary, North Cumbria Integrated Care NHS Foundation Trust
What we wanted to achieve
Through this project, we aimed to identify people with advanced Parkinson's in North Cumbria and their needs to develop a pathway through which we could provide better and more regular care for them. We had a particular focus on people who couldn't attend outpatient clinics.
What we did
We identified 168 people who could benefit from an improved care model. 62 of these people were interviewed through Patient Public Engagement activity and home visits. This allowed us to better understand the barriers they faced in accessing care. Analysis of these data suggested that those living in the more deprived areas of North Cumbria saw specialist services less frequently.
What we learned
The project has highlighted the challenges in accessing care in this rural area, including long travel distances and lack of public transport. There is potential in using digital tools for remote monitoring, but this won't suit everyone.
Use of the electronic patient record system means we now have a list of affected people that can easily be updated. This has informed a more efficient home visit system, with an aim to ensure parity across service provision.
Resources you can use from our successful projects
Here you'll find publications, tools, guidance and more, produced by projects we've previously funded.
- 'Start right; stay well' - developing a swallow screening tool: large grant project
View the Swallow screening tool for patients with Parkinson's in emergency departments (SSPED).
- Parkinson's Beats: small grant project
Read the published paper on Parkinson's Beats on PubMed.
- Redeveloping PDMedCalc: small grant project
View the PDMedCalc guidance and tool.
The Excellence Network Grants team is happy to provide further information on any of these projects, or put you in touch with the project leads. Email them at [email protected].
Excellence Network project grants
Do you have a service improvement or delivery project idea? Visit the Excellence Network project grants scheme page to see if it is eligible for funding.