Summer 2018 — patient and public involvement newsletter
It’s been a busy few months, with PPI at the forefront of lots of activities across the research team.
Sharing your experiences of involvement
One of the aims of launching the PPI blog and the newsletter is to give you, our brilliant PPI volunteers, more opportunities to share your thoughts on Patient and Public Involvement and your experiences of being involved.
In this edition, Alison, Ken and Bill, members of the Edinburgh Research Interest Group, share a bit about what PPI means to them and the importance of changing attitudes and empowering people affected by Parkinson’s to have an active role in research.
You can find their brilliant blog post here — please take a read!
If you are interested in writing a blog post about your experience of PPI, please email researchinvolvement@parkinsons.org.uk.
Updates on grants success for researchers
Rachael Lawson, from Newcastle University, has been awarded a Parkinson’s UK Senior Research Fellowship for a research project aiming to define delirium and it’s impact on people with Parkinson’s.
Last year, we worked with Rachael through our Research Involvement Award to support her to work in partnership with people affected by Parkinson’s to develop her research ideas. Rachael sent a survey out to the Research Support Network (RSN) and held a focus group to better understand people’s experiences of delirium and help her shape the research project. She then worked closely with a member of the RSN to develop her application.
Rachael comments: “I am delighted to be awarded the Parkinson’s UK Senior Fellowship to investigate delirium in people with Parkinson’s. The involvement of people with Parkinson’s and their carers was very helpful in designing my study and will ensure that those who are interested in research will be able to take part. Later this year I will start the study and people with Parkinson’s and their carers have agreed to continue their involvement by being part of an advisory group. With their help, I hope the study will have every success in helping people with Parkinson’s in the future.”
So far this year we have funded 3 small grant applications:
- Doreen McClurg, from Glasgow Caledonian University, was awarded a small grant to support a randomised controlled trial to investigate the effectiveness of electrical stimulation as a treatment for bladder problems. Doreen will be working with people affected by Parkinson’s as part of the project steering group.
- Sandip Patel, from University College London, has been awarded funding for a research project investigating the role of calcium disturbances in Parkinson’s and the relation to LRRK2 gene. Sandip and his colleague Bethan Kilpatrick worked with PPI volunteers to develop the plain English summary for their project.
Bethan comments: “PPI contributors were excellent. They gave excellent feedback on our plain English summary. Communication via email was convenient and productive. This was our first time involving PPI in the grant application process. It was extremely useful and we will certainly do this again.”
- K Ray Chaudhuri, from Kings College London, was awarded a small grant to support a randomised controlled trial to test a treatment for gastrointestinal problems in people with Parkinson’s. The original idea for the project was proposed by a carer of someone affected by Parkinson’s, and the research proposal was developed in consultation with the CRISP PPI group and other people affected by Parkinson’s.
Parkinson’s UK Research Roadshow in Cardiff
On 23 May we held our first Research Roadshow in Cardiff.
The Research Roadshows are regional events designed to bring together people affected by Parkinson’s and local researchers to share information and discuss the latest developments in Parkinson’s research.
The event was organised in partnership with members of the South Wales Research Interest Group, and patient and public involvement was one of the key themes of the day.
Supporting industry with patient and public involvement
One of the priorities for our Patient and Public Involvement programme this year has been to support pharmaceutical and biotech companies to work in partnership with people affected by Parkinson’s throughout their research and development processes.
In June, we hosted a Skype call with four PPI volunteers and researchers from a small biotech company to discuss the design of a proposed clinical trial.
PPI volunteers had some great insights for the research team, including suggestions about the length of the trial, the assessment schedule and what information participants would need to know before agreeing to take part in the trial. One of the PPI volunteers, commented:
“Thank you for the opportunity to be involved yesterday. I hope it will be useful in producing a high quality trial that will bring an effective treatment to the clinic soon. I was impressed at the openness and the patience of these high level executives and their respect for us. I was astonished that they hadn’t been involved with patients before and hope it was a good experience.”
Using Skype was a great way to bring together people affected by Parkinson’s and researchers — particularly in this case, as the research team were located in the US and France meaning that a face-to-face meeting was not practical. We are looking forward to using this tool more in the future to support our patient and public involvement work.
If you have any feedback on this newsletter, or suggestions for what you’d like to see in future editions, please let us know! Email us at researchinvolvement@parkinsons.org.uk.
