What I learnt (and unlearnt) as a peer researcher with MS

“Once the penny dropped, I stopped trying to stick to the script — and that’s when I really started to enjoy the process.”

It's hard to believe that it’s been 12 months since I joined the MS Peer Research Study, as a Peer Researcher. The time has really flown and with only a few more months left before the project is set to be completed, it's amazing to see how much has already been achieved. Although I do not intend to go into details about the data and outcomes of the actual research, I wanted to chart my experience so far, on a personal development basis.

From the outset, the training I received was excellent.  With clear concise information in a format I could understand, I conducted the qualitative research confidently. Now, coding is no longer a mystery to me; I now know what a theme is and how they are developed; and I am able to make a constructive and relevant contribution to the project when identifying and developing themes, as well as co-designing the focus groups and workshops.

The interview training was interesting and very insightful. Developing the actual interview questions as a group was novel and made the questions much more relevant and personalised. After my first interview I identified a definite need for me to develop my listening skills; and to adopt the ideas that “there are no right or wrong answers”, that I shouldn’t focus on keeping the questions  “in order”  but instead, I should just let the conversation “go with the flow. It might seem funny for me to make these points, but coming from a background of quantitative research where everything goes in a particular order and is controlled and very structured, the realisation that qualitative research is all about “how things feel and the language used” was a game changer.  I couldn’t predict how someone was going to respond, how long it might take for them to answer or in what order they would answer the questions. So once the penny had dropped, I stopped trying to stick to the script and at that point I started to enjoy the whole process so much more.

In addition, receiving immediate feedback after each interview; where my own reflections on how the interview went, and any recommendations as to how it could be improved was taken into consideration, which made me feel included and a valued member of the team.

There were so many opportunities for learning and to build on my existing skill set throughout the whole process but particularly when conducting the interviews.  From the initial first few minutes when you first log on to Zoom, and you introduce yourself, you can see that look on their face, what am I doing here? Why did I sign up for this;  they are not sure and don’t feel comfortable. However, as the interview progresses and we are both now more relaxed, and I am no longer trying to take control and micromanage the whole thing, you slowly watch them realise that,  it is relevant to them, and they are listening and you can see they are starting to relax, and enjoy the experience, as they start to provide some interesting insights and it then becomes very rewarding as it helps to build your own confidence at the same time. The silent pauses and the quick answers were no longer effecting me. I was able to cope with those who found the process difficult, stressful or even annoying and were not willing to to open up to the questions. By empathising and being patient, and being non judgemental, helped to build a rapport and eventually very interesting answer were offered, although to varying degrees.

On a personal level, participating in this project has given me an opportunity to work with a multifaceted team whose members are all on their own MS journeys. However, it is extremely satisfying to know that all of these characters, with differing points of view, experiences and mindsets, are able to join together to shape and influence future policies; by building new strategies that will shape how future healthcare services are the implemented, provided and offered to minoritised patients with MS.

I am excited about  the next stage of this project where we now have to get out there and let everyone know what needs to be done.

Karen Chong

Peer Researcher