Lauren Asare shares how she used Springboard Funding to support her ongoing investigation into the lived experiences of thyroid disease patients. With a background in Public and Patient Involvement and Engagement (PPIE), Lauren provides valuable insights into the health applications of public engagement, and since acquiring this award, has obtained funding to continue her research through a PhD.
Amount of award: £738
The patient voice is a central theme to both this smaller project, and my PhD project. For this piece of work, the aim was to involve patients from the earliest point in the research life cycle as possible, and to expand my thinking by incorporating other perspectives. I was keen to get a sense of which topics held the most weight for people who are currently living without thyroids, as well as getting an idea of their life stories and how thyroid disease has impacted this.
I held both one-to-one and group patient and public involvement (PPI) workshops with a total of 5 public collaborators, each who had previously undergone either radioactive iodine therapy or total thyroidectomy for Graves’ disease. Having insight from this group allowed me to gain a more nuanced understanding of these patients’ experiences, particularly as each of their individual stories were so different, despite having Graves’ disease (and the resulting thyroid ablation) in common. This gave me the perfect opportunity to explore which aspects of patients’ daily lives were central to their experiences following definitive therapy and living without a thyroid.
Whilst I already have a familiarity with patient and public involvement from my current role in PenARC, there were a few challenges that I encountered whilst setting up my first ‘solo’ PPI group. This project served as an opportunity for me to try navigating tricky areas such as dealing with new patients’ initial scepticism about being involved in research, coordinating workshop timings that worked for everyone (which resulted in double the number of workshops than I had initially anticipated), and responding to public collaborators who wished to reject payment acknowledging their involvement.
Despite the challenges, having the opportunity to hold these patient and public involvement workshops was immensely helpful for narrowing down my initial research question and learning about key areas of the PPI group’s experiences. This also allowed me to form a patient and public involvement group that I can enlist the help of in the future. As a ‘thank-you’, and in recognition of their involvement, I sent out ‘Impact Acknowledgement Packs’ to each public collaborator. These packs highlighted each of their individual contributions to my project, and helped my PPI members to see how important their thoughts and experiences are, and the tangible difference they can make.
Doing these PPI workshops with the Springboard Fund has been hugely beneficial to my project and has encouraged me to think about my research topics in a much more nuanced and complex way. Being acquainted with a group of PPI members before the project allowed me to demonstrate that patient and public involvement was embedded from as early on in my research as possible.This in turn had the benefit of reiterating to potential funders that my project idea reflects an area of great importance to patients. Due to this early collaboration, there will also be less time needed to ‘break the ice’ within the PPI group once the project begins, as we will already be used to working with one another. This may allow me to go deeper with our conversations from earlier in the project, giving the group the chance for even greater involvement.
Members of the PPI group each expressed gratitude for having been approached for the opportunity to be involved in research for the first time, as they felt that they had finally been able to give ‘a voice’ to their (at times, painful) experiences with thyroid disease.
With huge thanks to my pre-application workshops supported by the Springboard Fund, I am pleased to say that I have been able to obtain full PhD funding to continue this project. Additionally, I will continue working with the PPI group that was formed with the Springboard Fund for the duration of the PhD, to ensure that their involvement is embedded throughout the project. My longer-term hope is that this project can show the members of my PPI group (as well as patients and the public more generally) that their views and experiences truly can make a difference.