Join Niki Jones in discussing One Thing she wants pain researchers or clinicians to know. Niki strongly believes that including lived experience throughout the research process leads to stronger, more relevant studies. Niki calls for collaboration over traditional “research on people” models.
About Niki Jones
Niki Jones has lived with persistent pain since an accident at 16 and has had severe and significantly
disabling trigeminal neuralgia since 2002. She underwent many drug and surgical interventions, including an implanted motor cortex stimulator and was parked on high dose opioids for many years. In 2018 she discovered the pain management app Curable, and from there the work of Prof. Lorimer Moseley and the new neuroscience which underpins Flippin’ Pain.
Transcript
Joshua Pate: What is one thing that you want pain researchers or clinicians to know?
Niki Jones: The one thing I’d like them to know is to include people with lived experience in research from the very, very start.
In all levels, in all ways: from the inception of the idea through to, you know, conferences even. You know, in every single level of it. Some people are not going to want to be too involved and I almost see it like a pyramid structure. So you have you know, almost like your focus groups, and you know your real collection of ideas and opinions at the bottom, and then panels, and then maybe one sort of expert representative in the actual group, I mean, I’ve been in groups. And I’ve been doing the, you know, screening of the papers, the systematic reviews.
And I think if you start to include people from the very thought process of what to research, that’s where you get some real richness and real fertile ground. And you start to learn what really matters to people out there who are living with pain.
It’s the same for clinicians, too. But I’m sort of focusing on research because it’s sort of the start point. Basically all it really does boil down is to listen in all parts of our life with, you know, working with people with pain. Because that’s where you start to see what really matters.
And I can just see that if you had somebody with lived experience, they just said you know, why are you doing it like this, or wouldn’t it be good to include that? And just bring in a different perspective, a more creative perspective?
And I really like things, you know, slightly different ways of doing science like the participatory action research and stuff like that where you’re actually working with people rather than doing research on them or for them. Far more collaborative approach.
I think we have genuine ideas. I run a journal club and it’s quite maybe not unique but I have not seen many others like it, because we are open to anybody and we have a really interesting mix of people with lived experience clinicians, researchers, and people who accidentally come because they think it was a journal club like about writing diaries. They often stay, its cool. But the discussions that we have by creating a safe space where everybody’s equal and everybody’s heard and everybody’s listened to. The discussions are so rich and so vibrant, and you know they really take us some interesting places. And I think it’s that kind of vibe that we need to sort of encourage.
Joshua Pate: That’s so good. Thank you so much for your time, Niki, we really appreciate it.
Niki Jones: Okay, thank you very much.