Why do we conduct research in MS? Most researchers will acknowledge that the primary reason is to improve our understanding of the disease, which may, in turn, help contribute to the development of more effective treatments and supports for patients and their families. However, until quite recently, MS research was typically carried out “on” patients, with people with MS viewed as passive subjects in research studies. Thankfully, this mindset is now changing and researchers are placing more value on fostering PPI, or Public and Patient Involvement, in research. In Ireland, bodies such as IPPOSI are playing an important role in providing a platform for this patient involvement and funders often require PPI to be considered in the planning for future projects.
Simply put, PPI involves carrying out research “with” patients, acknowledging the valuable perspective that they have in shaping the development of studies and the interpretation of findings. Who better to guide research than the people we are researching in the first place?
The growth in PPI has particular personal relevance for me. While I have been conducting research into how people cope with chronic conditions for a number of years, I have only recently begun to expand my research portfolio into the area of MS. This is because I too am a patient. PPI has shown me the value of championing this lived experience: those of us living with MS have a unique set of experiences which are important to consider when shaping future research agendas. I consider myself extremely privileged to be able to now contribute to research into my own condition and I am eager to get more people with MS involved in this pursuit too.
Research in Progress – The Experience of Anxiety in MS
At the moment, one of my research postgraduate students Austin Fahy, is conducting a PPI-led project in the Department of Psychology at Maynooth University. In this study we are hoping to explore the key influencing factors on the experience of anxiety in MS. While research suggests that anxiety can be a common experience in MS, only a few studies have explored why this might be the case, and, more importantly, less is known about what may help alleviate anxiety in MS. We can learn a lot from reading about previous studies in this area, but in our own research we want to gain a more in-depth experience into the factors influencing anxiety in people with MS living in Ireland.
In order to help us in the design of our study, we were extremely lucky to discuss this topic with a wonderful group of MSers in September. This PPI panel, organised by Aoife Kirwan of MS Ireland, involved eight patient experts who had varying experiences with MS and anxiety. Over the course of an hour’s discussion, we covered a range of issues. It was evident that there were a number of shared experiences, but also individual differences, in the panel’s experience. Possible reasons for why people with MS may experience anxiety (e.g. perceived lack of control over symptoms), and the strategies that people may find useful in helping cope with anxiety (e.g. seeking out social support, engaging in mindfulness and exercise) were suggested. This information was incredibly useful to us as researchers, but, perhaps more importantly, hearing about the experiences of others was incredibly positive for those of us with MS. It was clear that many people with MS can have worries, but that, thankfully, there are many things that can help alleviate this.
Based on these PPI discussions, we have designed a larger scale study intending to capture the factors influencing anxiety in a wider group of people with MS. Currently, this study is undergoing ethical approval, but once approved, we hope to get a number of people with MS to take part. If you are interested, please feel free to get in touch!
We also hope that our PPI panel will be later able to assist us in the interpretation of the study findings. By doing this, we can be sure that research will be of relevant and value to people with MS, which should ultimately help inform the provision of supports for MS.
Acknowledgments: We are incredibly grateful for the time our PPI panel members took in sharing their experiences. #patientsinvolved