Making a difference: public involvement in research

As we met for the first time in February, we all felt a little uncertain of what to expect from getting together. Driven by curiosity, all 9 of us (7 contributors and 2 researchers) huddled in the cozy atmosphere of the Heart of Newhaven community centre. Some delicious fresh fruits, a few cheeky biscuits and a hot cup of tea got us in a comfortable mood to begin the conversations. 

There were a lot of topics to explore around pain, research, ageing, language, medical practice… And the questions raised brought much consideration. We all quickly recognised issues with the way chronic pain is perceived by people who don’t experience it.

I find these kinds of discussion groups really interesting, meeting others coping with living with chronic conditions, as it’s often hard to talk for long about it with friends, who can empathise, but not really get it if they don’t have a condition.

- J1 (contributor)

Those challenges extend to healthcare professionals who at times can seem unsympathetic. We agreed that better education for doctors and nurses should be a priority, especially when medical treatments stop working. 

We met 3 times over 6 months and built trusting relationships along the way. Those of us with chronic pain found comfort in hearing others talk about their troubles. We shared coping strategies and insights from previous medical research. To our surprise, the group was a great source of peer support.

One of the things that happens when you have pain is you tend to isolate yourself and it’s been good to get out and about and meet other people [with chronic pain]

- J2 (contributor)

Through their previous job as a doctor, Sam had the opportunity to talk with many people who experience chronic pain or who are especially vulnerable in old age (frailty is the term doctors use). Although unnoticeable at the time, the discussions were tainted by the power imbalance a doctor has over their patient. During our meetings, by making an effort to reduce this asymmetry, the conversations felt more honest. This led to more conducive answers than would otherwise be possible in a consultation room.

Although the three-hour sessions went by swiftly, we all recognised that it was exhausting work. Sharing our difficulties with healthcare encounters or day-to-day adaptations to the pain was draining intellectually and emotionally. We also disagreed at times but, collectively, we did our best to ensure everyone’s voice was heard equally.

I talk with other researchers every day and it’s really easy to get stuck in jargon and complex language. […] During the meetings, I had to do the opposite exercise. And I think this was the most difficult aspect for me.

- Sam (researcher)

Our efforts yielded remarkable results. We all felt a sense of purpose in sharing our experience, learning from each other and trusting these conversations will have an impact on healthcare in the future. Furthermore, the vouchers for the contributors were a welcome recognition of our time and efforts in the group. Each of us left the meetings with new insights into what chronic pain might look like in someone else’s life story. 

For me taking part has been really worthwhile. I’m so impressed by people’s comprehension about their situation and helpful things which could be suggested or contributed. It’s shown me again the need for people’s understanding of chronic pain as opposed to acute (short-term) pain

 - Pat (contributor)

We all found benefits from these meetings and felt other researchers and people with chronic conditions should be encouraged to meet as well. Some of us have already begun to urge our networks to do so and we hope research can continue to improve in this way in the future.