Winter 2020 — patient and public involvement newsletter
Welcome to the final edition of this newsletter in an extraordinary year. We reflect on what we’ve achieved in 2020 and what we’re excited to work on in 2021.
Reflecting on 2020
Despite all the challenges and uncertainty of 2020, we managed to ensure that patient and public involvement remained at the heart of research at Parkinson’s UK.
In 2020, you helped to shape over 40 research projects — around the same number as in 2019. Given that during the first lockdown many research facilities closed and members of the research team at Parkinson’s UK went on furlough, we think this is a huge achievement! Thank you for continuing to support research in such a difficult year — we couldn’t do it without you!
Looking forward to 2021
Each month we have a video-conference with our Involvement Steering Group, a team of volunteers who steer and prioritise all aspects of patient and public involvement (PPI) in research at Parkinson’s UK. The group is made up of people affected by Parkinson’s and researchers.
In our November meeting, we decided on our priorities for 2021 and discussed how we might work on these areas. For our work next year, the group prioritised:
Improving the diversity of Parkinson’s research
Focusing on PPI in individual research projects
Updating our processes for supporting PPI in pharmaceutical companies
We’ll be updating you in future editions of this newsletter on these projects. If you have any ideas you’d like to share with us, please get in touch at researchinvolvement@parkinsons.org.uk
Restarting research
Another important piece of work we carried out this year was to find out how people affected by Parkinson’s felt about taking part in research, given the various restrictions that have been in place across the UK since March.
We know that the research community has been working tirelessly to get studies up and running again in a way that is safe for everyone involved. Research will look different now, and the Parkinson’s community must work together to figure out what adaptations are needed to ensure research can continue.
We carried out a survey of people with Parkinson’s, their carers and loved ones to find out how to make research participation safe and comfortable. 548 people completed the survey and the majority are still comfortable taking part in research. Thanks to those of you who shared your views about taking part in research by completing the survey!
“I think it is important that research gets up and running again as soon as possible.”
We also asked where people would be happy taking part in research. Respondents were most comfortable with the idea of home visits or visiting a research centre or clinic that was separate from a hospital.
“A study centre or university would be OK. But I’d be very cautious about visiting a hospital at the moment.”
The survey allowed people to suggest or comment on additional measures that would make them feel comfortable during a research visit, beyond the standard recommendations such as wearing face masks and social distancing. This information was used to develop recommendations for everyone involved in face-to-face research.
If you’re interested, you can read the full report here.
Involvement in lab-based research
The benefits of carrying out PPI activities in clinical research have been shown time and time again. People affected by health conditions bring a unique perspective to the design of research studies — making it easier and more practical for future participants.
Involvement in lab-based research can be more challenging. When we say ‘lab-based research’ we mean studies that will not have people taking part.
We partnered with Alzheimer’s Society and UCLH Biomedical Research Centre on a project to pilot different ways of involving people in lab-based research to see what works well. We wanted to understand how best to support people affected by Parkinson’s to shape lab-based studies, and how best to support lab-based researchers to involve people in their work.
Although the benefits of PPI in lab-based studies may be less tangible than in clinical research, researchers said that working with people affected by health conditions:
- Offered reassurance that what they are doing is of value and therefore a motivated them to continue
- Helped them to think differently about the condition
- Raised questions that they had not thought of
- Informed the direction of future research
PPI contributors also told us that involvement in lab based research can:
- Bring hope
- Help them to feel they are doing something useful
- Make them feel part of a wider community
We have developed a website to share the findings from the project and help lab-based researchers to plan and carry out PPI activities. The website is primarily aimed at researchers, but you can view it here if you’re interested. Please also feel free to share it with anyone who you think may find it useful!
Volunteer awards
Congratulations to all our Volunteer Award winners, especially the 14 volunteers who have supported our research activities and 8 who have helped to shape research studies. Your dedication, enthusiasm and drive are essential in our pursuit of better treatments and a cure for Parkinson’s.
Have your say on Volunteering with Parkinson’s UK
We want to hear from you to make volunteering with Parkinson’s UK the best it can be. The Volunteering survey is your chance to shape volunteering in 2021 and beyond.
The survey should take no longer than15 minutes to complete. It’s completely anonymous, and you only need to complete the survey once, even if you volunteer with us in different parts of the charity. The survey will be open until the end of January.
Once the survey has closed our volunteering team and our board of trustees will review the results. We’ll make sure to share key results and findings.
If you would prefer to complete the survey over the phone, call 020 7963 9328 and one of the volunteering team will call you back to take your responses.
If you have any questions, please contact Stephen Hill, head of volunteering, at volunteering@parkinsons.org.uk
Have your say on remote PPI
Lucy Frith at The University of Liverpool is running a survey to explore how we can improve remote PPI activities, i.e. activities that involve no in-person contact. The survey should take about 20 minutes to complete and Lucy would like to hear from anyone who has got involved in PPI.
We’re really interested to see the results from this survey. We’ve all had to switch to remote options this year, but it’s important for us to understand the pros and cons of remote PPI activities going forwards.
Thank you and Merry Christmas from the whole research team!
We’re here to support people affected by Parkinson’s throughout this time. Visit our website to read the latest guidance on coronavirus and Parkinson’s, and find out where to get support.
We really value your feedback on any aspect of our PPI programme, so please do get in touch anytime! Email us at researchinvolvement@parkinsons.org.uk
