By Zareen Deplano, Research Fellow
We are running a three‑year project to understand how people access stem cell transplants for Acute Myeloid Leukaemia (AML) and Myelodysplastic Syndrome (MDS). A key part of this work involves interviewing patients, caregivers and healthcare professionals to learn about their experiences. We want to learn how treatment decisions are made, and what barriers stand in the way of accessing this life‑saving treatment. The findings will help us develop practical recommendations to make access to stem cell transplants fairer for everyone.
Why we need voices from underserved communities
Understanding inequalities is central to this project, so we are especially keen to hear from people in underserved communities, including those from minority ethnic backgrounds and areas of higher deprivation.
To reach as many people as possible, we have been using both social media and NHS sites across England, supported by our Patient and Public Involvement and Engagement (PPIE) group.
Charities, such as Blood Cancer UK, Cure Leukaemia, the African and Caribbean Leukaemia Trust, Team Margo, the National BAME Transplant Alliance, and Anthony Nolan are also sharing information about the study.
The Recruitment Challenge
Despite this fantastic support, recruitment remains challenging. Social media has broadened our reach, but over half of replies have been from “imposter participants” rather than genuine patients, leading us to strengthen our screening process. This is an increasingly talked‑about problem in health research and seems to be on the rise – especially in studies like ours that offer payment and can be conducted online. Many newly diagnosed AML/MDS patients also feel too unwell to take part early in their treatment, which limits opportunities to hear from those most affected.
We hope recruitment will improve now that our first NHS site is open. We are also widening our focus to include patients further along in their cancer journey, as well as caregivers and healthcare professionals, whose experiences can also reveal important insights about inequalities.
A call to action
Reaching underserved groups requires stronger partnerships with communities. We therefore welcome national efforts such as the NIHR Research Ready Communities programme and funding for community research partnerships, which are supporting more inclusive and community‑led research.
Can you help?
- If you are an AML or MDS patient, caregiver or healthcare professional - please consider taking part in a one‑hour interview. Contact Zareen Deplano for more information. Ring 07379076690 or email to SCTproject@contacts.bham.ac.uk
- Please support recruitment by sharing this invitation with anyone who may be interested or able to help.
More information: https://www.birmingham.ac.uk/research/projects/access-to-stem-cell-transplant-study