How does PPI add value?

“Because I am working with animal models, I need people to help me understand their priorities about the effects of joint pain, and to tell me what I should focus on. I need to know what really matters to people with joint pain. That will give a strong direction to my research. People with joint pain can help me make sure I am looking at a relevant behaviour in my animal models.”

(Sandrine Geranton, researcher)

“We’re looking at two potential treatments. The one we develop will be based on the results we get from the various experiments we’re doing, but if patients were to say that the idea of taking pre-grown cells from a patient and then putting back into them was unacceptable, and that there’s no way they would want to go through an additional operation as part of a clinical trial, then we wouldn’t pursue that idea. The other possible treatment is a stem cell graft - cells taken from the umbilical cord and from donated placenta. If patients were to say, there’s no way I want discarded products of birth being used as a treatment, we wouldn’t pursue it. Once you get to the stage of a large animal study it’s very expensive and it’s the sort of thing you only want to do once. So we need to make sure we design something that is going to be acceptable to patients.”

(Nick Hamilton, researcher)

“It’s important for me that patients get an understanding of what I spend my day doing. It’s so much more than looking down a microscope staring at cells all day. So if patients and carers can gain an understanding of what we do, and understand the need for animal research, that we don’t just test on animals for the sake of it, and that a lot of work is done before things go into animal testing, that’s great.”

(Rachel Hughes, researcher)

“I think our most important role is to help spread the word about Jason Warren’s research. Jason is perfectly capable of doing that through his academic papers. But we’re in a position to let patients, carers and the general public know about it. For example we go to the Alzheimer’s Society group for people with young onset dementia and we go to other local things, so we can talk to people about it and spread the word among lay people.”

(Kathy Gill, PPI contributor)

“Patients and carers who get involved in lab based research will always get something back from meeting the researchers. One of the main things they will get is that this kind of research needs money. By getting involved, people will understand that it’s complicated, and that it takes a lot of effort and a lot of complicated machinery. They will understand that money is needed. So even if all they go away with is the message that we need to get some money together, that’s good.”

(Rod Wing, PPI contributor)

“As a researcher, you can spend hours in the lab focusing on one small part of the disease and almost forget why you’re doing it. But if you meet patients, and you meet the public, you really remember the reasons. I went into a clinic last week and met patients with Parkinson’s and it just really brings it home why my research matters.”

(Rachel Hughes, researcher)

“When we met with patients and carers their response to our work was overwhelmingly positive. Everybody seemed to think that it was a good thing. That obviously inspires us to keep going.”

(Tony Vernon, researcher)

“What I really took from involving patients and carers was that we’re on the right track, and that we’re producing something that patients would be interested in - and and that they would be willing to take part in a trial.”

(Nick Hamilton, researcher)

“Because of my personal experience with dementia, I ask researchers questions like ‘What’s going to come out of this? Where will it lead to?’, and they have to respond to that. Hopefully it also makes them realise the value of their work.”

(Sara Davies, PPI contributor)

“I think particularly in a situation where research funding comes from public donations, and where people with the disease you are studying have helped to raise the money to fund your research, you have an obligation to justify how you’re using that funding.”

(Tony Vernon, researcher)

“At meetings with patients and carers we always do a presentation about what we’ve been up to and what our results are so far. We hold a question and answer session too. That format works well. My post-doctoral researchers do these presentations, which gives them some experience of public speaking. All of my post-doc researchers have said that they really enjoy doing these presentations.”

(Katie Lunnon, researcher)

“Patients and carers have had a really useful dialogue with us around what we could do to focus more on the non-Alzheimer’s dementia diseases, which are incredibly under-served. I think patients and carers have a valuable role in talking with funders, to remind them that there are some dementias that are very needy but may not be getting much attention, when they’re planning a conference or thinking about funding priorities.”

(Jason Warren, researcher)

“At a recent meeting with Jason Warren and his colleagues, he was able to say, this is what I’d like the Alzheimer’s Society to know. He can say to us, can you promote this back to the Society, or can you ask the Society about that. So there’s communication back and forth, via carers. I think that’s a good thing.”

(Jean Tomkow, PPI contributor)

“Visits we’ve had from patients and carers have been extremely useful and I think we’ve got a very good rapport. They’ve asked some very insightful questions and made some very insightful comments. I have just shown them the grant we’re about to submit to the Alzheimer’s Society - they’ve been very helpful in planning that.”

(Jason Warren, researcher)