Researcher Page

Those with professional experience and those with personal experience (plus those with both!) all have something to bring to research, and together we are stronger! Public and patient involvement also does something much wider -  it can ensure those who previously may not have been listened to are heard, addressing power imbalances. In the field of addictions, by having us involved, we can also move conversations forward, and work together to break down stigma.

As experts by experience we bring something unique and invaluable to research topics because we have lived through it, and by nature have deep and real insights, often things that others would just not be aware of. Because we can so easily put ourselves in the shoes of study participants, we can also ensure that research is carried out in a way which is appropriate, will be acceptable to them, and that you have the best chance of meeting recruitment targets. Simply by showing  that you have PPIE this can build trust and confidence not only among participants but the wider community and in research in general. And specifically, having a PPI Coordinator with disclosed lived experience facilitating your PPI groups can really help to make them a safe space encouraging people to open up. As (usually) non-academics we can also help to ensure studies are relevant to the wider community, accessible, and use clear language. Lastly, we also often have great links and can help to disseminate your findings.

PS. not to mention PPIE is a requirement of funding and if you can show a high level of public involvement at the application stage, funders love it!

Having been involved in many projects as a public contributor myself as well as working as a PPIE Lead on studies where I've created and facilitated public and patient advisory groups, I've seen it from both sides. I know that researchers want public involvement to be a good experience for contributors. Equally, there are things which often don't feel great for contributors, of which researchers and PPIE Teams simply aren't aware. Here are just some of my top tips for PPIE from some of the common bugbears I see, if you'd like to discuss further get in touch!

1. Advertising and Recruitment: When advertising opportunities be really clear about what you want people to send you as an expression of interest and how decisions will be made - otherwise it's really confusing for people to know what to send and how long to spend on it. Most opportunities are hugely over-subscribed these days so get clear on how you will make your decisions.
2. Expenses: these need to be at the NIHR rate and offer a choice of bank transfer or vouchers. Be clear in initial advert or communication what the expenses are and how they will be paid - it shouldn't be up to contributors to have to ask to be paid expenses or turn up to a meeting not knowing how they will be paid.
3. Be open: don't limit the ways contributors can get involved. If your funding application said PPIE will be involved in every stage let's make that happen! Have you thought about having peer researchers? Could your contributors help to train your RAs? Or co-lead your final dissemination event?  Listen to the creative ideas of what your contributors would like to do - great things might happen!

I work at all levels from acting as a general public contributor through to PPIE Coordinator and facilitator, through to co-applicant and project co-lead. See my previous experience below, and feel free to get in touch!