Autumn 2023 — patient and public involvement newsletter
In this edition, we have some new grants, we share stories on shaping research, bring you opportunities to have your say and more!
New Parkinson’s UK research
We’re pleased to share that we have awarded funding of £1.83 million for 9 new research grants. The projects are tackling our understanding of Parkinson’s and exploring new drugs for the future. They aim to find new ways to slow, stop and understand the causes and progression of the condition.
- Professor Bastiaan Bloem at the Radboud University Medical Centre in The Netherlands is Investigating physical activity to slow the onset of Parkinson’s
- Dr Christian Lambert at University College London is Developing new imaging techniques to study differences in the brain in Parkinson’s
- Professor Caleb Webber at Cardiff University is answering the question, Can blood pressure medication protect some brain cells from damage?
- Professor Jonathan Lane at the University of Bristol is answering the question Can reducing cell stress help protect brain cells?
- Dr Kathryn Bowles at the University of Edinburgh is Investigating genes which could be involved in Parkinson’s
- Professor Tilo Kunath at the University of Edinburgh is looking at Understanding the role of alpha-synuclein in the body
- Dr Nathan Skene at Imperial College London is answering the question Which brain cells are affected in Parkinson’s?
- Professor Maria Grazia Spillantini at the University of Cambridge is Understanding the potential of a new drug to stop build-up of alpha-synuclein
- Dr Nataly Hastings at the University of Cambridge is Testing a new drug to protect supporting cells in the brain
Some of the researchers worked with members of the Parkinson’s community (including some of you) to shape their applications. Professor Jonathan Lane who will be studying human brain cells to understand how cell stress can impact their function, and whether existing drugs to reduce this stress can help protect brain cells in Parkinson’s, shared that:
The feedback was very useful — in particular, I asked for thoughts on project title and Plain English Summary which was helpful. At this stage, we have only sought PPI on writing style — I hope much more input will happen over the next few years of the grant through our communications plans, with PPI contributors shaping how we communicate and share our research more widely and clearly.
To find out more about the projects we have funded, follow the link below.
Patterns of Perception (PoP-PD)
Using art to facilitate discussions, researchers at University College London, led by Dr Rimona Weil, ran a collaborative project exploring the fears and concerns around discussing dementia within the Parkinson’s community.
The project led to the development of two new booklets — one for people with the condition and their families, one for health professionals — to help open up conversations about Parkinson’s dementia.
They have made a short video to show how the collaborative project worked.
People with Parkinson’s (including some of you) were involved in the design of the workshop, and in refining and creating resources.
To find out more, click the link below to read Rimona Weil’s and Anne Marr’s interview about the project.
Black History Month
In October, we celebrated Black History Month by sharing the stories of those working to improve representation of people with African and Caribbean heritage in Parkinson’s research.
Linda, whose father Stanley was diagnosed with Parkinson’s in 2012, and Toussaint, who was diagnosed with young-onset Parkinson’s, talked to us about their experiences and shared why they think it’s so important for people from Black communities to get involved with Parkinson’s research.
Read the article below to find out more.
Sharing the experience of teaching medical students as a Patient Advocate
Many students who are training to be doctors, nurses or other healthcare professionals may never have met someone with Parkinson’s.
Mark, a PPI Contributor and previous member of the Involvement Steering Group, is a Patient Advocate at the University of Plymouth. Working with lecturers at the University, Mark has helped to shape part of the course for medical and healthcare students to help them learn about Parkinson’s and what it is like to live with the condition.
Read Mark’s blog to find out more about his experience and how the programme has developed by clicking the link below.
Share your thoughts on Deep Brain Stimulation (DBS) to shape a research study
In Deep Brain Stimulation (DBS) a pulse generator (like a pacemaker) delivers high frequency stimulation to specific areas in the brain via fine wires that are carefully inserted in the brain. DBS is usually most effective at improving movement symptoms. However, new DBS devices are able to record activity in the brain that could potentially allow for the detection of non-movement symptoms.
Paul Shotbolt, Irene Faiman and researchers at King’s College London are planning a research study to investigate if brain recordings from DBS and Artificial Intelligence (AI) can be used to accurately detect when these non-movement symptoms, such as panic attacks and hallucinations, are happening. This could then lead to future research in the use of DBS to relieve or prevent these non-movement symptoms.
Paul and Irene would like to understand people affected by Parkinson’s views on using DBS to treat non-movement symptoms of Parkinson’s. The information from this survey will shape this and future projects.
If you would like to share your views, please complete the survey here. It will be open until 26 November 2023 and should take no more than 10 minutes to complete. If you have any questions about the survey or how the information will be used please email Dr Irene Faiman at irene.faiman@kcl.ac.uk
Edinburgh Parkinson’s Lecture: person centred care and research
The Edinburgh Parkinson’s lecture, hosted by the Edinburgh Branch and Edinburgh Research Interest Group, took place in September, with attendees joining both online and in person. In her lecture, titled ‘Learning to Listen — a patient-centred approach to Parkinson’s care and research’, Professor Camille Carroll, from Plymouth University, spoke about person centred care and research, why it’s important and how it can be achieved.
Alison, who is a PPI Contributor and member of the Edinburgh Research Interest Group, gave the closing remarks. She said:
[Professor Camille Carroll’s] exceptional work is showing us what can happen when the medical focus shifts. When we’re no longer just a bit part in the medical story. When instead we’re at the centre of a rich conversation of collaboration and voice.
When talking about the lecture, Alison explained that:
Professor Carroll’s obvious dedication to her patients and her staff was reflected for me in two standout messages, one concerning clinical practice, and the other concerning research. The clinical message was that when the hierarchy is flattened and patients and healthcare professionals work collaboratively, clinical outcomes are improved.
The research message I heard was the importance of extending research to under-served populations; particularly women, people in lower socio-economic groups, ethnic groups (including the issue of racial discrimination), and young-onset patients.
Professor Carroll stressed that underlying both these issues was the crucial importance of voice — of the patient and carepartner being heard on equal terms with the healthcare professional: when lived experience and learned experience are equally valued.
Open for applications: New NHS programme launched to help develop projects aiming to improve patient care
The NHS Clinical Entrepreneur Programme is a pilot programme for those based in England with experience of an illness or condition who have developed a project or innovation to improve patient care.
The programme aims to give you the skills and knowledge to help you develop and scale up your project.
The programme is open to:
- Those who have experience as a patient, carer or family member of a health condition.
- Those who have a project or innovation that is already in development and beyond the idea stage.
- Who are based in England and are 18 years and over
The programme is free and it can fit around your work. The deadline for applications is 27 November 2023.
To find out more, including how to apply, follow the link below:
If you’d like to write a blog about your experience of being involved in research, or would like to feedback on any aspect of our PPI programme, we would love to hear from you! Email us at researchinvolvement@parkinsons.org.uk
