Involvement in Lockdown (and beyond!)

Coronavirus has forced us all to change the way we work. We’re making use of technology to stay connected, run services and offer support. In this blog, find out how you can shape your research remotely with people affected by Parkinson’s, which is a great option during lockdown and beyond.

In the Research Involvement team at Parkinson’s UK, we support researchers to work together with people affected by the condition. This helps to ensure that research is meaningful and relevant to people affected by the condition. We help researchers to plan patient and public involvement (PPI) activities, offer support and guidance, and connect researchers to our networks of people affected by Parkinson’s who have an interest in research.

We also offer more hands-on support with PPI, for example by facilitating the activities. Find out more about our Research Involvement Awards.

Although bringing a group of people together face-to-face may seem like the obvious way to get feedback on your research, there are many ways you can work alongside people affected by Parkinson’s remotely. We’ve been supporting researchers to do this for a few years now.

What different ways are there to involve people remotely?

If you’re looking to get input on a research idea from a large group of people affected by Parkinson’s, carrying out a survey can be a great way to get a snapshot of what the community thinks. For example, you might want to know how big a problem sleep is for people with Parkinson’s, and what would help people to manage it. A recent survey we shared with our Research Support Network got around 350 responses within a few days!

There may also be areas of your research that you want to discuss in more detail, for example if you want to understand how to make the design of your study as feasible as possible for future participants. It may be more appropriate to have one-to-one conversations, over phone or by email, or you could hold a video conference and hear from a small group. We held our first online focus group over 2 years ago and since then it’s been a regular part of our involvement toolkit.

Our network of PPI contributors:

• have been through training to understand how they can work with researchers
• are used to reviewing study documents and providing feedback over email, telephone and video conference

We can support volunteers who are unsure about using these technologies to get online too, making sure that anyone who wants to be involved can be.

Even when we’re not forced to, involving people in your research remotely has some advantages:

• Location is not a barrier — people from across the UK can be involved in shaping your work
• Some of the symptoms of Parkinson’s can make attending meetings in person a challenge, so remote opportunities may be more accessible
• If you have a limited budget for carrying out PPI activities, involving people remotely can reduce expenses and other costs

“Skype is an excellent tool, I love the use of video” — PPI contributor

What might remote involvement look like in practice?

Dr Richard Axell applied for a National Institute for Health Research (NIHR) grant to investigate why people with Parkinson’s may develop problems emptying their bladders. Before submitting the grant application, Richard worked with people affected by Parkinson’s to design the project and ensure his research met the needs of those who experience bladder problems. We knew that travelling to a face-to-face meeting could be impractical for a group of people who experience bladder problems, so we decided to host the meeting via video conference.

As many current research projects are put on hold and we adjust to life in lockdown, it could be a great opportunity to reflect on current and future research plans. It’s important that people affected by Parkinson’s are involved in these reflections.