On Thursday 18 June, we hosted the first meeting of the James Lind Alliance Priority Setting Partnership – Unlocking Lobular. We are delighted to be working with our new Steering Group, which involves people with lived experience of a Lobular diagnosis, alongside medical professionals.
There has never been a previous Priority Setting Partnership (PSP) into Lobular Breast Cancer, so this is a big milestone for really driving change. The aim of PSPs is to agree the Top 10 research questions that need solving for Lobular that will eventually lead to clinical change in the NHS across the UK.
PSPs also identify what existing Lobular research has been published, and often lead to further research funding for the identified Top 10 areas.
Importantly, PSPs are not driven by researchers but are a collaborative process between people with lived experience of a particular disease and experienced clinicians.
There will be opportunities for people to get involved during the process, so please sign up for our newsletter and follow our social media to ensure you don’t miss those opportunities.
Our Steering Group is made up of individuals with a lived experience of a Lobular Breast Cancer diagnosis from across the UK and medical professionals:
- Annalisa Barbieri – lived experience of a Lobular diagnosis
- Cliona Kirwan- Oncoplastic Breast Surgeon at the Nightingale Breast Cancer Centre
- Fiona Baber – retired GP and lived experience of a Lobular diagnosis
- Jennifer Hannon – lived experience of a Lobular diagnosis
- Joanne Edwards – Professor of Translational Cancer Pathology at the University of Glasgow and Director of Glasgow Tissue Research Facility
- Julia Garlick – lived experience of a Lobular diagnosis
- Mandy Boyd – lived experience of a Lobular diagnosis
- Nina Tunariu – Consultant Radiolgist at The Royal Marsden
- Nusrat Sultan – lived experience of a Lobular diagnosis
- Sally Kum – Associate Director of Nursing, healthcare professional engagement and Health Information at Breast Cancer Now
- Sara McLennan – Psychosocial Oncologist, LBCUK Trustee and lived experience of a Lobular diagnosis
- Sean Ryan – lived experience of a Lobular diagnosis
- Simon Lowes – Consultant Breast Radiologist at Gateshead Health NHS Foundation Trust
- Vasileios Angelis – Consultant Medical Oncologist at St Bartholomew’s Hospital
The delivery team is:
- Helen Coulthard – Reader in Psychology, De Montfort University and lived experience of a Lobular diagnosis
- Rhiann McLean – James Lind Alliance Faciliator
- Kerry Quincy – Chartered Psychologist and Senior Lecturer in Psychology at De Montfort University
- Claire Turner – Interim CEO at LBCUK and lived experience of a Lobular diagnosis
- Ian Williams – Professor and Researcher in the field of psycho-oncology
The first meeting of the PSP was an opportunity to meet each other, learn about everyone’s expertise and experience, and set out our ways of working. We will be meeting every month so please do not hesitate to contact us if you have any questions or are interested in ways to get involved.
This is a landmark moment for everyone affected by Lobular Breast Cancer. Working in partnership with De Montfort University and the James Lind Alliance, we’ve spent the past year laying the foundations for this Priority Setting Partnership, and I’m incredibly proud to see our Steering Group come together.
By bringing people with lived experience and healthcare professionals together as equal partners, we have a unique opportunity to shape the future of Lobular Breast Cancer research. Our goal is clear: to identify the Top 10 research priorities that can drive new studies, influence NHS clinical practice, and ultimately improve outcomes for everyone diagnosed with Lobular across the UK.
As someone who has experienced a Lobular diagnosis myself, I know how important it is that we focus on the uncertainties that have the greatest impact on people’s lives.
This is just the beginning, and we want the Lobular community to be at the heart of every stage of this journey.