Patient advocate: the UK Interdisciplinary Breast Cancer Symposium 2020

Patient advocate: the UK Interdisciplinary Breast Cancer Symposium 2020
Patient rep Mairead McKenzie (centre right) and Prof Mitch Dowsett with the UKIBCS patient advocates

Mairead McKenzie, patient representative for our Breast Cancer research theme, discusses her role as a patient advocate for the UK Interdisciplinary Breast Cancer Symposium (UKIBCS), which took place in January 2020.

What was the project?

In early 2019 I was asked to join the organising committee for the UKIBCS 2020, as a patient advocate: the Symposium was committed to involving patients from the outset and involving them at the heart of it's organisation. The UKIBCS was led by Professor Mitch Dowsett, the BRC’s Breast Cancer research theme lead. 

The Symposium provided an opportunity for those with an active interest in breast cancer research and treatment to consider and discuss how the latest advances may impact the field.. Treatment of breast cancer has for many years been dependent on the interaction of professionals from many disciplines and so research into improving our understanding of this complex disease and prospects for improving its prevention and treatment requires interdisciplinary collaboration to make meaningful advances.

Why did you get involved?

This was a key opportunity to place patient and public involvement (PPI) at the heart of research and strengthen the connections I have made within the BRC . Throughout this process the PPI members of the organisation committee were fully part of the team and not seen as extras, demonstrating the positive work that PPI can do and helping to build relationships with the researchers.

What did you do?

All members of the committee (including the patient advocates) were tasked with organising a session and I chose Diet and Exercise. This involved choosing and contacting speakers and arranging for a co-chair to join me for the session, ensuring a totally patient-run session. The other PPI representative organised a session on symptom management. Both of these topics are important to patients and now seen as key areas for research.

The conference offered 15 patient bursaries and we were tasked with the arrangements for this and choosing the successful applicants. We received more applications than available bursaries, but the conference also offered reduced rates for patient advocates, so several more patients were able to attend. As well as UK advocates, patients from the USA and several European countries were also in attendance.

To help make the event as easy as possible for patients we also organised a pre-conference session, which covered basic information on understanding clinical trials, and current themes of breast cancer research.  We also ensured that the patients had a designated meeting point to enable discussion between sessions.

As with most conferences there was a scientific poster competition, for researchers to display their research and results: in addition to a scientific prize there was also  a ‘patient’s choice prize’, judged by the patient panel. We felt that this was important for a better understanding and awareness of PPI in the research community.

What was the impact of this project?

The general feedback at the Symposium was that the presence of patient advocates was very positive and advocates commented on how easy it was to speak to and interact with researchers throughout. Comments from clinicians and researchers were equally positive.

Overall, the event enabled connections to be made between patient advocates and the research community and promoted the value of PPI. The patient-run sessions were also well attended with good discussions and positive comments.

For the future, the hope is that the model of including patient advocates on the executive committee and having bursaries for attendance will continue to the 2022 event.