Dr Karen Shaw (BTRU Patient and Public Involvement and Engagement Manager) had the privilege of joining Michael Howard (one of our dedicated BTRU Patient Partners) at the Haematology Patient and Carer Congress (HPCC25) in London — billed as the UK’s largest haematology event.
The Congress aims to accelerate patient outcomes by bringing together patients, carers, clinicians, NHS executives, charities, and industry partners to exchange ideas and improve care for blood cancer and blood disorders. The event also provides a platform to hear directly from patients living with these conditions, alongside professionals and organisations committed to improving services and support.
HPCC25 offered a range of expert-led sessions where patients and carers could learn more about treatment, health and wellbeing, as well as opportunities to share their experiences and insights. Michael was there to share his invaluable experience of participating in the FLAIR clinical trial for chronic lymphocytic leukaemia (CLL), with Emma Williams, a Senior Nurse in Research and Development at the Velindre University NHS Trust in Cardiff. Almost 10 years on from his diagnosis, Michael remains in remission.
In fact, it was Michael who brought this event to our attention. This shows one of the many benefits associated with Patient and Public Involvement (PPI) in research. Like Michael, Patient and Public contributors often possess valuable networks that help researchers connect with diverse communities and broaden the impact of their work.
The Congress certainly underscored the value of the research happening in our Blood and Transplant Research Unit (BTRU) in Precision Cellular Therapeutics. Talks and discussions illuminated the pressing need for new and less toxic therapies, better access to clinical trials, and continuous innovation in treatment pathways. A recurring theme was the increasing role of technology in healthcare efficiency – from integrated data systems that share information across healthcare settings to digital advancements such as health apps and wearable devices like smartwatches that help patients receive timely and tailored care. The importance of capturing patient-reported experiences and outcomes was also emphasised as a key factor in shaping future advancements.
In the afternoon, Karen also attended the Key Opinion Leaders Haematology Research and Strategy Forum (KOL25), where clinical leaders shared their insights and strategies for improving care amid rising workload pressures. Discussions spanned early recognition of rare diseases, improved communication methodologies, and the transformative potential of technology and AI. The forum also explored strategies to enhance UK clinical trial delivery.
Michael and Karen also had time for networking, where they could share information about Blood and Transplant Research Units and highlight opportunities for Patient and Public Involvement.
As Michael explains, patients are very credible research champions. Indeed, Michael is one of our longest-serving Patient Partners and now a NIHR Patient Research Ambassador:
“I see my function as an important middle way between patients (the ‘end-users’ of clinical research) in one part of the NHS and clinicians and researchers in another. Patients may struggle to understand what is being said in appointments or documentation about their illness or condition, while clinicians and researchers may have difficulty in understanding what patients experience. Offering suggestions which will hopefully benefit everyone and contributing to important new and highly specialised developments, such as the work of the BTRU, is a way in which I can contribute to the future of the NHS.”