3 reasons why you should do PPI
Applying for a Parkinson’s UK project grant or small grant in May? Here are three ways you can work with our Patient and Public Involvement (PPI) volunteers to strengthen your application.
Involving people affected by health conditions leads to higher quality, more relevant research, with better outcomes for the people who matter most. So, at Parkinson’s UK, we want the researchers we fund to work with people affected by Parkinson’s as much as possible.
This means involving people affected by Parkinson’s throughout the research process — including before you have even secured funding for your project. For both basic scientists and clinical researchers, there are a number of ways involvement can help improve your grant application.
1. Identifying and prioritising your research question
We want to fund research that has the greatest chance of improving the lives of people with Parkinson’s. As well as demonstrating scientific rigour and quality, it is crucial that you show how your proposed research is important and relevant for people affected by the condition.
Working with our PPI volunteers can help ensure that your research is focused on the things that matter most to people with the condition. People affected by Parkinson’s are the experts in living with the condition and offer valuable insight into what it is like to live with Parkinson’s on a day-to-day basis.
Our PPI volunteers can work with you to:
- identify the most relevant issues for people with Parkinson’s
- develop research questions that address areas of unmet need
- help make sure the outcomes of your research are meaningful
Involving people in this way can be especially beneficial for basic researchers, where sometimes it can be easy to neglect the longer-term impact of your work and how it will transfer to the clinic.
Watch the video below to hear from Dr Heather Mortiboys how working with people affected by Parkinson’s helped shape her laboratory research.
“Ultimately, I’m doing that basic science research to have an impact on them [people with Parkinson’s] and their families and their lives.”
2. Helping with the design of your research
It is vital that the proposed design of your research is practical, feasible and optimal for the research questions you want to answer. Our Grant Assessment Panel will be looking for evidence of this, and consulting with people affected by Parkinson’s is one way of demonstrating you have considered these aspects.
Our PPI volunteers can work with you to:
- identify potential issues with the design of your research and find ways to address these
- help make the design of your study attractive to potential participants
- ensure your research uses appropriate outcome measures that accurately capture experience of Parkinson’s
People affected by Parkinson’s know what’s going to work, and what won’t, when it comes to encouraging people to take part in a study. Even a seemingly small modification to the design of your research, such as changing the time of study visits, can make a huge difference as to whether people will take part or not.
“The PPI volunteers provided such detailed and insightful feedback, that hugely benefited the design of our study and the quality of our grant application.”
3. Writing your plain English summary
All of our grant applications are reviewed by lay grant reviewers, who bring the unique and valuable perspective of people affected by Parkinson’s into the funding decisions made by Parkinson’s UK.
A good plain English summary is essential for evaluation by lay grant reviewers. And this requires you to write in a whole different way — it’s not simply about substituting long, unusual words for shorter, more common ones. We know this can be challenging, particularly when your research involves complex techniques, confusing models or cryptic genetic lingo.
Our PPI volunteers can work with you to:
- eliminate jargon and find alternative, lay-friendly ways to describe complex terminology and methods
- make sure the language and overall tone is appropriate and acceptable to people with Parkinson’s
- ensure the summary includes all the information that lay reviewers will want to know, whilst remaining concise and clear
Working with people affected by Parkinson’s to write your plain English summary is a great first-step to incorporating more involvement into your work —both for basic scientists and clinical researchers. It might seem small, but a good plain English summary can make all the difference to your application.
“I don’t think it would have been possible to end up with a proposal that I am so proud of, whether I secure the funding or not, without input from people who are living with Parkinson’s.”
Working with our PPI volunteers to develop your grant application will make a real difference to the quality of your proposal and the strength of your application.
The Parkinson’s UK Research Involvement team are here to support you to involve people affected by Parkinson’s in your research.
Through our Patient and Public Involvement programme, we can support you to plan your involvement, connect with volunteers and carry out your involvement activity. There are many ways you can connect with people affected by Parkinson’s. For example you could:
- email volunteers for feedback on your plain English summary
- hold a meeting (via Skype/teleconference or face-to-face) to discuss your research
- send out a survey to gather people’s thoughts on your research aims or study design
To find PPI volunteers to work with, or to get more help planning your involvement, email us today at researchinvolvement@parkinsons.org.uk.
To start you off, take a look at our PPI Resource for Researchers, which gives a great introduction to involvement and how you can work with PPI volunteers.
