Patient and public involvement (PPI) newsletter — Summer 2019
This edition includes information on our continued work with pharma, the research roadshow and an opportunity to get more involved in the development of our PPI programme.
Genetic Testing and Parkinson’s: share your views
Parkinson’s UK are exploring the idea of offering genetic testing to people when they are newly diagnosed with the condition. We want to hear your attitudes towards genetic testing for Parkinson’s, which will inform the development of our plans in this area.
Please share your thoughts by completing the following survey by Sunday 4 August 2019:
Medications and Packaging Workshop
One of the priorities for our Patient and Public Involvement programme over the past couple of years has been to support pharmaceutical and biotech companies to work in partnership with people affected by Parkinson’s throughout their research and development processes.
Last year we worked with pharmaceutical company UCB, who sought input from people affected by Parkinson’s in the design of a phase 2 clinical trial for a potential new drug. Elaine, a research volunteer at Parkinson’s UK, shares her story of being involved in the workshop in the following blog:
This year, we continued collaborating with UCB and in June hosted a second workshop. UCB wanted to understand the experience of taking a medication everyday, and any preferences people have about their medication. The two key areas they wanted input on were:
- the form of the medication — should it be a tablet, capsule or liquid?
- the packaging for the medication
Even though the phase 2 trial hasn’t yet started, UCB have already started planning the phase 3 trail and want to ensure they are involving people affected by Parkinson’s as early as possible. The outcomes from the workshop will inform the phase 3 trial and (if successful) what the drug looks like once it becomes commercially available.
“I found I was able to carry out my role because I had been prepared by the Parkinson’s UK team. I also felt well supported if at any time the issues being discussed became a little overwhelming.
I thought the pharmaceutical company were genuinely committed to taking account of our experiences of using Parkinson’s medication and I am optimist that they will try to incorporate as much as is feasible within the constraints of the drug production.”
PPI volunteer who attended the workshop
We will share further details of what was discussed at the workshop and how UCB are using this input later in the year.
Plain English Summary Reviews — project grants
This year we changed the structure of our Project Grant funding, meaning that applicants first submitted a pre-proposal. Applicants who submitted the best pre-propsals were then invited to submit a full proposal.
After inviting the applicants who were successful in the first round to submit full proposals, we also gave them the opportunity to work with PPI volunteers to improve their plain English summaries and give them a better chance of having their full proposal accepted.
38 of you worked with 15 researchers to help ensure that the plain English summaries were as clear as possible for the Lay Grant Reviewers who would later help to decide which projects should be funded.
We’ll update you in the next newsletter about the successful applications.
Involvement in Animal Research
Professor Gail Davies and Dr Rich Gorman at Exeter University are leading a project to explore the opportunities and challenges of patient and public involvement and engagement in animal research.
Gail and Rich have been speaking with researchers, patients and the public and research professionals about their experience of PPI in animal research.
In April, Gail and Rich hosted a workshop to discuss their findings so far, and to think about where this work should go next. Natasha (Research Involvement Manager at Parkinson’s UK) and Anne (PPI volunteer at Parkinson’s UK) attended. Read their reflections on the workshop in this blog:
Parkinson’s UK Research Roadshow: Kendal
The Research Roadshows are regional events designed to bring together people affected by Parkinson’s and local researchers to discuss the latest developments and share opportunities for collaboration. The roadshow visited Kendal, where stunning views of the lake district acted as a backdrop for our discussions!
As well as a series of presentations in the morning, attendees had the chance to hear from researchers in smaller groups in the ‘roundtable’ sessions. Many of the researchers used this time to ask attendees for their feedback about their research plans.
For example, Dr Ellen Poliakoff from the University of Manchester, asked the tables how she could best explain action observation. Action observation involves trying to improve specific movements, like opening a jar, by watching others do the movement and imagining performing the action yourself. Clearly communicating this idea is essential if Ellen is to find people affected by Parkinson’s who might want to take part in the study. Ellen also wanted suggestions for which movements people would most like to practice — some ideas that came up were buttoning shirts and reading a newspaper.
In total, the researchers that attended the event received 96 expressions of interest from people affected by Parkinson’s who wanted to get more involved in their work!
Feedback from a researcher
Natalie Sowter, a trainee clinical psychologist at Lancaster University, worked with PPI volunteers last year to shape her study investigating the relationship between stigma and psychological distress. PPI volunteers worked with Natalie to design the survey that she later used with the participants in her research.
Natalie has now completed her research and summarised the findings for the PPI volunteers involved below:
Thank you for your support with developing the materials for my research last year.
The study investigated the relationships between self-compassion, stigma and psychological distress among people with Parkinson’s. “Self-compassion” is the ability to recognise one’s own suffering and take steps to relieve it, using a kind and caring approach. Both “enacted stigma” (negative attitudes and actions of others) and “felt stigma” (the application of stigmatising views towards the self) were considered.
138 people with Parkinson’s completed questionnaires measuring self-compassion, enacted and felt stigma, and depression, anxiety and stress. Higher self-compassion was found to be associated with less reported stigma (both felt and enacted), which was in turn associated with lower levels of depression, anxiety and stress.
These findings suggest that both one-to-one support to build self-compassion, and society-level efforts to reduce stigma, might help to improve the psychological wellbeing of people with Parkinson’s. More research into self-compassion among people with Parkinson’s would be useful for finding out what kinds of one-to-one support would be most helpful.
As Parkinson’s UK volunteers, you’re part of everything we do. You’ve supported breakthroughs in research, set up thousands of activities in local communities, and campaigned to save Parkinson’s nurses — embodying the Parkinson’s UK values every step of the way.
We want to celebrate this, so if you know a volunteer who has shown one of our values, nominate them for an award. Complete the online form by Monday 30 September:
Join our Involvement Steering Group!
The purpose of the Involvement Steering Group (ISG) is to encourage and support patient and public involvement in the Parkinson’s research community.
The ISG meet monthly by video-conference and have one face-to-face meeting a year. The group is made up of people affected by Parkinson’s, Parkinson’s researchers and the Research Involvement Team at Parkinson’s UK.
The aims of the group are to:
- Champion the involvement of people affected by Parkinson’s in research
- Shape the development of the Parkinson’s UK PPI programme to ensure that it meets the needs of all relevant stakeholders, including researchers and people affected by Parkinson’s
- Help to develop resources to support researchers and volunteers
- Provide involvement support to other teams within the research grants team and other teams within the research directorate
We are looking for a few new members, so if you’re interested in getting involved or would like to find out more, email Annie at researchinvolvement@parkinsons.org.uk
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
