Here are my top 5 reasons why PPI in charity-funded research matters:
If we listen to what people with lived experience want us to research, we can prioritise areas that are most important to them. This also gives charities credibility and makes them more accountable to the people who support them.
Charities have limited funds – especially at the moment. By involving people with lived experience in deciding what research gets funded, we can ensure the limited money most charities have is spent wisely. This in turn can help charities to persuade other funders to support research into a particular condition, confident that they are supporting research that is important to people.
PPI can improve the quality of the research that charities fund. For example, people with lived experience can help researchers decide what measures to use to test whether a treatment is working. When the research includes participants, they can help researchers to think about things like how many extra times someone might be willing to attend appointments, or how many additional tests they might be willing to have. People with lived experience can help researchers to make sure that information materials are written in plain English. They can help to share the results of the research too, bringing them to life and making them more accessible. Perhaps most importantly, people with lived experience can advocate for the results of research to be put into practice, thus making a difference to the lives of others living with a condition.
PPI can also have an impact on researchers. Researchers who involve people with lived experience say that it makes them more confident that the research they are working on is important to people. It can also help to motivate them; many early-career researchers have never met someone with the condition they are studying, so they can find it hard to think how their work might make a difference in the longer term.
PPI can also help the people with lived experience who get involved in research. Sometimes people living with a condition feel disempowered, or hopeless, or de-skilled. By getting involved in research they can develop new skills and knowledge, and they can see what treatments might be possible in the future.
It’s not just me saying these things. There is growing research evidence that PPI in research adds value. Here’s a link to one of many reports about this.
I hope this has given you a taster of the value of PPI in charity-funded research, or in any health research for that matter. If you’re affected by epilepsy and you’d like more of a say in the research that Epilepsy Research UK supports, please join the SHAPE EPILEPSY RESEARCH NETWORK – more details here.