Surprisingly I never used to be vocal. 5 years ago I used to much rather sit in a room, listen and not participate. I felt like I had no right to contribute to the conversation because who was I. I was just a patient, a person who lived with a chronic health condition, but I was by no means the expert.
Fast forward to now and I enjoy being an active participant in conversations. I see the value in my life experience and how my experience is unique to me but is also important. So I now use my voice to ensure patients and lay people are heard.
Why am I bringing this up?
I was recently asked if I wanted to do a course with Cochrane UK. The course is “Dissemination Essentials”. Basically a course on how to share information with your target audience and what you need to consider to reach that audience. To say I was daunted about this course is an underestimation. All the other people doing the course are academics, publishers at Cochrane or similar.
For the first time in 5 years today I found myself retreating back to the person I was, the shy, quiet listener who observes rather than participates. I had to shake myself and really give myself a pep talk as to why I was there and what good was I doing if I was sitting not contributing when I could add helpful comments.
Once I took that first plunge and said something I felt like I was just one more participant. My contribution sparked discussion, I was not thought if as just the patient or the lay member but I was an equal. I felt comfortable to be able to go on and contribute more, offering challenges (where appropriate) to what others said.
I never thought I would go back to that feeling of being an observer but I did. What it has done is stimulated my brain to ensure that others who attend events and may feel in the minority are able to take part where they want to. I want to try and be inclusive. I do not want other people who may be a minority in a meeting or event to be the listeners. Everyone has something valuable to contribute.
Patient and Public Involvement is not new but it is new to many. It is becoming an essential component of research. Patient and public involvement partners are as much of an asset to the research team as the principle investigator or the methodologist but many feel that are not equal and are there as a tick box exercise. I want to make a conscious effort to ensure that any time I am involved in PPI activities all participants have the chance to use their voice and share their opinions.
I am excited about continuing with the course and seeing where it takes me. I am not just looking forward to learning more about dissemination skills for my work but also learning from others how they try to engage with different groups to disseminate their different information.
ANONYMOUS-ASTHMA 