Waiting for any type of heart surgery can be difficult and anxiety-provoking. In order to better understand this experience, the team at King’s Improvement Science (KIS) carried out a study to explore experiences of patients waiting for planned (non-emergency) heart surgery.
Jo Burridge and Rashmi Kumar assisted in this study as patient and public involvement (PPI) partners to help better understand patient’s experiences of waiting for heart surgery, thereby helping healthcare teams to improve health and care treatment pathways for future patients. Jo and Rashmi have been contributing to co-produced research studies and clinical trials for the past four years and have lived experience of everyday challenges experienced by both patients and carers to family members.
Jo has previously waited for significant periods of times on several occasion for 'urgent' interventions and has family members living with pacemakers and heart failure. Rashmi is a carer for a family member who had heart surgery three years ago after being on a waiting list for heart valve surgery for over 20 months.
What makes co-production in research truly meaningful?
To be meaningful, it’s important that all contributions are actively considered and respected. Co-production should not be tokenistic, and patient and public involvement members should be respected as equal partners throughout the whole process. In this study, patient experts were involved from the very start of the project, allowing for clarity about everyone’s roles and clear sharing of background information between team members.
What was the process like of preparing you to do this work?
We were engaged and supported from the beginning of the project to understand what the study was aiming to achieve (key objectives), as well as how the information was going to be collected from the hospital trust’s staff and clinical teams, and from patients. This meant that we were informed about how undertaking this study could lead to real change in the management of waiting times for heart surgery.
Our contribution to this study started with sharing our experience and understanding of what patients and families go through with the whole study team. We have unique insight into what patients and families experience from their very first communication with hospital teams, to being on the waiting list itself and eventual surgery. Through sharing our insight, we helped the research team to understand the patient perspective and therefore develop questions that would be relevant to the survey.
What was your involvement in the project?
We assisted in the planning of the study, and in developing survey questions which would allow participants to return feedback that can truly help health and care teams understand patients’ needs. This required attending many meetings with the KIS team, often asking challenging questions and offering guidance that would help the researchers consider other aspects of patient experience. Rashmi also attended the ethics approval committee meeting to ensure that members considered the patient's perspective when discussing key ethical issues related to the survey and the study on national guidelines for patient privacy and protection.
We suggested and assisted with the independent pilot testing of the survey amongst our network in the KIS PPI team, to assess its quality and the patient’s burden when completing the survey. This ‘feasibility testing’ of the survey allowed us to address potential concerns and issues such as poorly worded instructions or questions to participants.
Following the return of the surveys, we were trained to get involved in the thematic analysis of the information received, alongside non-academic research team members. Thematic analysis is a structured way of analysing and grouping participant responses into groups (themes or patterns) which can help to better understand and communicate feedback (responses) received.
Finally, we were also involved in the development and presentation of a webinar to health care clinical teams, as well as the study report, both of which shared the key findings and guidance on the management of waiting for heart surgery.
What were the key findings from this work?
"One of the key findings from this study was the significant and diverse impact waiting lists can have on the mental, emotional and physical health of patients and their loved ones. This can have secondary consequences for the quality of life and wellbeing, which may not be fully understood by clinicians and hospital staff."
For healthcare professionals, being on a waiting list for elective surgeries and procedures may seem routine – but it has significant impact on the patient.
This study was however able to identify possible ways of mitigating this distress, which formed the basis of the study key guidance and recommendations. In particular, it identified the importance of regular communication with patients – including ongoing engagement even if there was nothing new to report. Offering dedicated telephone lines, and clear signposting to available resources and support services can all help patients and families navigate the waiting list period more effectively.
Why should organisations prioritise PPI in their work? What would you say to those considering becoming PPI members?
"Effective involvement of PPI groups in research studies leads to better research by identifying key experiences and challenges for patients and their loved ones early on. PPI can also help to give authenticity to the research process and outcomes and can be especially impactful when it comes to urging policy makers and commissioners to consider research findings and recommendations."
Everyone should consider getting involved in research because we all have unique lived experience to share. Hopefully, you will be supported and valued just as we were in this project.
Find out more
Find out more about the KIS cardiac project.
Watch a webinar where the team share the work and their findings.
Read about the blog authors Jo Burridge and Rashmi Kumar.
