This year we’ve been celebrating Cancer Research UK’s 20th year. And while it might be the charity’s 20th anniversary, many of us research nurses have been working in cancer research for longer.
Research nurses work in clinical trials. We play a vital role in making sure patients are safe and cared for whilst also ensuring that the research undertaken is of a high quality.
Clinical research is a team activity involving a huge array of people: from doctors to data managers, to patients and sponsors. Research nurses are a cog in this very complex machine. And while it is a demanding role, it is also incredibly rewarding making a difference to patients seeking new treatments at often very difficult times during their cancer journey.
20 years of innovation in cancer treatment
While the fundamentals of research – such as ethical considerations and determining what’s in the patient’s best interest – have remained unchanged over the past two decades, other aspects of the research landscape have been completely transformed.
Surgery, radiotherapy and chemotherapy remain the cornerstones of cancer treatment, but they’ve come an incredibly long way in the last 20 years. And we’ve also seen the advent of new therapies. Recent innovations such as proton beam therapy, gene sequencing and liquid biopsies would not have been possible without clinical trials and the hard work of research nurses.
Cancer research is such a rewarding speciality to work in. No two days are ever the same and you get to be part of creating a better future for our patients and their families. The research nurse plays a pivotal role in the success of clinical trials and it is a privilege to work closely with patients and support them throughout their trial journey.
Research and technological advances mean that today we have a much greater understanding of cancer. With this understanding comes the development of more targeted therapies, and this has opened the gateway for personalised medicine – where people are given treatments and interventions tailored to their individual needs.
But this innovation has also increased the workload on research nurses. Blood and tissue sampling is more important than ever, and matching patients to trials requires molecular screening and tissue testing, much of which wasn’t even available 20 years ago. And with more individualised options, many patients are on study treatments for months or years, a prospect that was inconceivable when drug treatments relied heavily on chemotherapy agents.
The emotional side of the role has changed, too. When the results of screening tests are known, many patients may now be told a study is not suitable for them, and preparing expectations is vital as this can be disappointing news. However, ultimately people are being spared treatments that, for them individually, would be ineffective, which means it’s possible to focus on finding better alternatives.
Despite the large number of patients who consent and are screened, in the targeted therapy era the pace of recruitment can be slower. The complexity of the whole landscape means clinical trial activity measures such as recruitment are no longer reflective of the research nurses’ workload.
In the past 20 years as a Cancer Research nurse (CRN) I’ve seen how cancer treatments, prognosis and quality of life for many cancer patients have improved thanks to the cutting–edge treatments offered through clinical trials. I’ve also seen how essential the CRN role is in the delivery of safe patient care and good quality research. I’m passionate about development of our research workforce because I know we can make a massive difference to patient experience in their cancer journey.
Amparo Domingo Lacasa
Raising awareness of the role
Another important part of the role of a research nurse is raising awareness of clinical research, both for the public and in professional settings. We act as advocates on behalf of research patients to ensure that their needs are understood and addressed. We also want to ensure that the research nurse workforce of the future continues to meet the evolving needs of cancer research.
New roles within cancer research nursing are emerging to do that. For example, research specialist nurses can support the complex needs of patients receiving advanced therapies like CAR T cell treatment. And National Institute for Health and Care Research education programmes mean that experienced research nurses can become principal investigators of non-interventional cancer studies.
Despite this progress, and the critical role of research nurses, more work needs to be done to give them a clear career pathway. We need to make sure that there is formal education and promotion of the role in the early stages of the nursing career to encourage more people to become research nurses.
As well as improving job satisfaction and encouraging retention, this would also help ensure high-quality clinical research and, most importantly, patient safety. Similarly, clear definition of roles and responsibilities across NHS Trusts and consistency in job titles would improve understanding of research nurse roles across the multidisciplinary trials team and would promote research engagement.
Seeing first-hand the contribution of clinical research over the last 20 years has been incredible. I’m so pleased to be working in this dynamic field. Patients and families have always been at the heart of our work and it’s so positive patients are now part of the research team too.
Keeping patient focus
Change is a constant working in cancer research. The role of a cancer research nurse is a continuous learning curve, but that’s a real positive.
Over the last 20 years, as technologies have developed, we’ve seen an increase in the use of electronic systems in trials, including patient-held devices. The COVID-19 pandemic has also helped to bring some innovations further into the mainstream, such as remote visits and electronic consent forms. That said, nothing will replace in-person visits and close monitoring where they are required.
Of course, we also want to ensure that, even with the increasing use of technology, trials remain patient-centred and easily accessible across all ages and communities. This is where another positive change comes in. Over the past 20 years in cancer research there has been increasing collaboration with patient and public involvement groups, allowing us to co-design studies to help reflect patient priorities.
In other ways research nursing is unchanging – because at its heart is teamwork and caring for patients and families; acting as an advocate, educator and skilled practitioner; and supporting patients and carers navigating clinical research.
By participating in clinical trials patients are making an enormous contribution to our knowledge of ways to prevent, diagnose and treat cancer, and that’s an amazing legacy for the future. We are so grateful to everyone who takes part in cancer research.
Cancer survival has more than doubled in the last 40 years. We’re proud to have been part of that progress, and we’re excited to help take it even further in the years to come.
I feel so proud to be able to make a difference every day in my role as a Senior CRUK Research Nurse, and work with such amazing colleagues. The work and commitment that research teams across the UK show to help patients with cancer access ground-breaking clinical trials is incredible and should be celebrated.
This article was written collaboratively by Cancer Research UK research nurses Ruth Boyd, Amparo Domingo Lacasa, Jo Hargroves and Evelyn Dolan.