In this blog, originally published as a Lived Experience Commentary in BMJ Open, Rashmi Kumar and Joanna Burridge reflect on their experiences as the two Patient and Public Involvement (PPI) members in the KIS study on patient preferences and experiences of waiting for heart surgery.
We are happy to share our experience as the two Patient and Public Involvement (PPI) members of this project. We helped with the design by drawing on our lived experiences with one of us having cardiac pre-surgery support and the other being an ex-stroke patient currently caring for a family member awaiting cardiac surgery.
As members of the core research team, we shared our experience and challenges waiting for cardiac surgery. We believe this research is important as these types of surgery are seen as routine to medical teams, whereas to the people on those waiting lists, it can be a frustrating and scary time. This is often unrecognised, but vitally important to the patient experience whilst awaiting the necessary treatment/surgery.
We helped with development of the questionnaire through advising on the nature of the questions asked to reflect such challenges that patients experience, including the language used to obtain feedback from patients waiting for cardiac surgery, and the style and length of survey - so that it will not be too burdensome for participants to complete. We suggested to quality test the survey further for acceptability and user-friendliness in a wider group of people with lived experience leading to further refinements.
Importantly, we were involved in the preparation of ethics application and attended the Research Ethics Committee meeting, allowing us to answer their questions directly and emphasise the importance of this research to patients and the public. The study was approved on first attempt, with only minor improvements.
We PPI members have been a core part of the team and our lived experiences have allowed the wider study team to gain insight into everyday experiences and challenges cardiac patients face which would otherwise have been missing. The research objectives and outcomes show that our contributions were invaluable to guiding the research course significantly.
This Lived Experience Commentary was written by Rashmi Kumar and Joanna Burridge as the PPI members, with support from Erin Letbe-Holder and Hema Chaplin as the PPI Coordinators for King’s Improvement Science.
