Opinion: 'I could not have foreseen how sharing the impact of a negative in my life with strangers could be a positive experience for me'
Multiple sclerosis is an illness with many symptoms, from funny sensations, like tingling fingertip, to cognitive problems. It also can lead to depression, as this cruel illness takes away your ability to live a normal life. In my case, I was lucky, as I had a medication which gave me a 10 year holiday from the many ways it had expressed itself in me. The fatigue, poor mobility and constant pins and needles in my fingers had almost disappeared.
In 2014, I was in a traffic accident, and this awoke the beast, with my right legs becoming heavy. It also caused me to be in constant pain, which meant I could no longer do the work I once did, helping small and medium-sized businesses develop new ideas and make them a reality. The pain robbed me of the ability to concentrate. I had to transition to a different career, and I started doing door-to-door market research. This suited my symptoms for a period, but my MS decided I should not walk and made it impossible to continue.
I could not work, and my life seemed to be over at the age of 50. It was grim and my only relief was the blog where I shared my experience of living with multiple chronic illnesses. In May 2019, I saw an ad for a job as a research assistant in MS Ireland's newsletter. NUI Galway's Dr Sinéad Hynes was looking for someone who lived with MS to be the voice of the patient in a feasibility study for a new therapy which would help people manage their cognitive problems. This was something I could do, as I had lived with this illness since I was 23.
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From Health Research Board, Claire O'Connell talks to patient researcher Robert Joyce
I started working in NUI Galway in July 2019 in my new job for one day a week and the gloom which had enveloped me cleared. In my first few weeks, they had given me a task to write a patient information leaflet about the trial which would be given to the participants. I had written nothing like this before. I was not from a medical or research background and wondered if I could really do this job.
To help me, I was given a few examples of what should be in the leaflet. I thought they were very difficult to read so I used my own words and the postdoc researcher wrote a conventional version. A comparison of the two showed mine was much easier to read for the average person as it was in plain English.
In most research you have the main work and you will also try to study smaller elements, which are called SWATs (Studies within a Trial), and we examined the impact on the participants and reported on this in a paper, which I co-authored. By now, I am the co-author of five peer-reviewed papers and the lead author of a peer-reviewed open letter about our experience of including patients as part of the research team.
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From A 30 Second Life, Dr Sinéad Hynes on the benefits of patient and public involvement in research
Over the last few years, I have progressed in my understanding of research, by becoming an EUPATI Patient Expert and working outside this trial with pharmaceutical companies and the HSE. I use my own experience of my chronic illnesses to improve the quality of research and influence how they conduct research.
When I started this job, I could not have foreseen how sharing the impact of a negative in my life with strangers could be a positive experience for me. Now, when I wake up in the morning, I think about the advocacy I will do over the next few days. No longer am I weighed down by the impact of MS and chronic pain, but I am lifted up by knowing I am improving the quality of life for people like me. Even my title has changed: I am no longer a Research Assistant, but an Embedded Patient Researcher. The transformation is amazing.
My life has a purpose now, giving me vitality, despite the restrictions of my illnesses
Researchers all around Ireland are looking to include patients in reviewing their grant proposals, assessing the methods they are using in their trials and being an intrinsic part of the research team. This changing trend of collaboration with patients is supported by the work of the Health Research Board and the PPI Ignite network.
I would encourage people living with medical conditions to use their experience to improve the way we develop new therapies and medicines. Contact your local PPI Ignite office to find out how you can be part of this positive change in the research landscape. If you are a researcher, you can do the same, and use this bank of knowledge to make your project more relevant.
My life has a purpose now, giving me vitality, despite the restrictions of my illnesses. You could achieve this too!
The views expressed here are those of the author and do not represent or reflect the views of RTÉ
