2nd December 2024

The power of nurse-led research

Breaking new ground in nurse-led research, Chief Investigator Emma Williams has published a pioneering study on the impact CAR-T therapy has on quality-of-life – the first UK study published in this area and first to be published by a nurse Chief Investigator.

CAR-T therapy, a groundbreaking form of treatment, involves modifying a patient’s own T-cells (a type of white blood cell) to fight cancer more effectively. These cells are collected, genetically re-engineered to target cancer cells and then infused back into the patient’s body where they fight off the cancer.

The study, called CART QUOL launched in the height of the pandemic, CAR-T treatment was new to Cardiff at the time and the long-term side effects and quality of life of this patient group had not yet been understood. This treatment and service continued for the patients during COVID-19 when they had a real fear that their disease would overcome them.

Emma’s paper, called Investigating overall quality of life in patients with diffuse large B-cell lymphoma undergoing CAR T-cell therapy, provides valuable insights into how patients navigated both the physical and emotional challenges of this innovative treatment which formed a basis for recommendations on how to improve their care.

Emma said:

“The patients were facing an unbelievably challenging time and each quality-of-life assessment obtained was capturing their journey, which for me was crucial and needed to be done to see the long-term side effects and quality of life of this patient group.”

Emma Williams, Haematology Trials Unit Manager at the University Hospital of Wales, Cardiff, is paving the way for nurses to get more involved in research and publish their own studies. As one of the few nurse Chief Investigators in Wales, her ability to combine clinical expertise with a research mindset has enabled her to work on studies which have had a meaningful impact on patient care.

When Emma first joined the clinical trials team at Cardiff as Haematology Trials Unit Manager, it consisted of only three members. Through her leadership, she has helped grow that team to 18 dedicated members of staff, ranging from research nurses, an admin manager, data managers and administrative assistants creating a thriving research environment built on collaboration and innovation. Her goal was to create a balance between service improvement projects and nurse-led research studies. Emma said:

“Research is a team effort. Everyone has something valuable to contribute and it’s important to create an environment where people feel encouraged to share their ideas.

“We probably have about 60 to 65 active studies now since coming into post in July 2015 up until 2024.”

As nurses, they are working on a number of observational studies looking at issues such as fertility after chemotherapy and outcomes of patients treated in these centres as opposed to standard healthcare settings or studies looking at unmet needs such as pre-rehabilitation in Acute Myeloid Leukaemia (AML) patients with the PROPEL study.

Emma believes nurse research can add depth to the research experience and bring in a different perspective that complements the work of doctors.

“Nurses are hugely resilient and will often sacrifice their needs to ensure the patients’ needs are met.

We are always at the forefront of care and I feel that more of our observations and dialogues with patients desperately need to be captured.”

The PRIORITY project, commissioned by Wales’ Chief Nursing Officer, Chief Allied Health Professions Adviser and Director of Health and Care Research Wales, is doing just that by developing an action plan based on the suggestions from nurses and allied health professionals to increase capacity and capability for doing and using research in the nursing.

Co-production is central to the PRIORITY project, now entering its final phase with Citizens Jury workshops in the new year. We’re inviting nurses, midwives and allied health professionals in Wales to reflect on findings and recommend actions for the plan. Register for the Citizens Jury workshop today.