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Celebrating a decade of experimental milestones in cancer research

As the UK’s Experimental Cancer Medicines Centres (ECMC) network celebrates its tenth birthday, Karen Turner, a research nurse at Birmingham ECMC, looks back over the network’s successes – and to its future hopes.
ECMC network

As the UKs Experimental Cancer Medicines Centres (ECMC) network celebrates its tenth birthday, Karen Turner, a research nurse at Birmingham ECMC, looks back over the networks successes and to its future hopes

Launched in 2007, the ECMC network is part of the vital infrastructure needed to bring research to life to improve outcomes for cancer patients. It is made up of 18 specialist adult centres and 11 paediatric centres around the UK that bring together researchers, world-leading scientists and clinicians to drive the discovery, development and testing of new cancer treatments.

18

specialist adult centres and 11 paediatric centres make up the ECMC nework in the UK

The initiative, jointly funded by Cancer Research UK (CRUK), the National Institute for Health Research (NIHR) in England and the health departments of Scotland, Wales and Northern Ireland, has had an investment of 70 million

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As the UK’s Experimental Cancer Medicines Centres (ECMC) network celebrates its tenth birthday, Karen Turner, a research nurse at Birmingham ECMC, looks back over the network’s successes – and to its future hopes

Launched in 2007, the ECMC network is part of the vital infrastructure needed to bring research to life to improve outcomes for cancer patients. It is made up of 18 specialist adult centres and 11 paediatric centres around the UK that bring together researchers, world-leading scientists and clinicians to drive the discovery, development and testing of new cancer treatments.

18

specialist adult centres and 11 paediatric centres make up the ECMC nework in the UK

The initiative, jointly funded by Cancer Research UK (CRUK), the National Institute for Health Research (NIHR) in England and the health departments of Scotland, Wales and Northern Ireland, has had an investment of £70 million in the past decade, and supports more than 200 staff involved in early phase trials and translational research.

Funding for the ECMC has been vital in supporting early phase and translational research nurses throughout the UK. The ECMC Research Nurse Network Group brings together nurses for training, support, sharing of best practice and informing national guidance. This group is made up of and open to any research nurse working within the ECMC network and currently has about 150 people on its mailing list.

2007

The year in which the UK’s Experimental Cancer Medicines Centres (ECMC) launched

To mark the ten-year milestone, we sent a questionnaire to senior nurses in each of the ECMCs (18 nurses) to reflect on the progress they have seen, how their role has changed, and what they are most proud of.

Adapting to a changing landscape

One of the biggest changes for us over the past decade has been the expansion in early phase clinical trials, reflecting changes in investment and increased funding. The number of early phase and translational research nurses has increased, with growing reliance on charitable funding due to a steady decrease in how research nurse posts are funded.

Our role has expanded, adapting to numerous changes in the past decade (see Table 1). We have seen a transformation in the staff working within the ECMC network since 2007, and the relationship we have with those entering onto a clinical trial has also evolved. The treatments we now offer our patients have also changed, with increasing use of immunotherapy and targeted therapies being introduced to many tumour groups.

Table 1. The changing landscape of early phase research nursing

Introduction of immunotherapies and targeted treatments

Introduction of the clinical trials assistant/practitioner role

It is no longer a ‘last resort’ for patients, who can now take part in early phase trial with option of standard treatment later

Increasing patient and public involvement

Complex sample collection, handling and processing

Formal training for research staff

Translational research nurse role for sampling and biopsies

Stratified medicine

Communicating increasingly complex information to patients and families

Increasing workload and study bureaucracy

Dedicated research facilities

The role of the ECMC nurse is pivotal to the safe delivery of clinical trials. During the past decade, there has been a welcome increase in dedicated research facilities.

Three quarters of nurses responding to the survey described the location of early phase trial treatment as the clinical trials unit. Several noted a development over the past decade that has seen treatment now taking place in dedicated research facilities.

Ten years ago, treatments were given in a clinical trial bay or in a chemotherapy day unit environment where possible. Now we can work within dedicated research facilities; where there are fellow research staff; laboratory equipment; and an understanding of what is required to deliver novel trials.

‘Ten years ago, treatments were given in a clinical trial by or in a chemotherapy day unit environment. Now we can work with dedicated research facilities to deliver novel trials’

Moreover, commercial and academic studies are no longer carried out in isolation by different teams, but are jointly delivered in specialist clinical areas.

The era of personalised medicine has also beckoned a shift from cytotoxic chemotherapy to targeted therapies or combination approaches.

Molecular profiling is now also a familiar feature of eligibility screening for studies, and the development of small molecule inhibitors has given rise to an increase in oral treatments, although intravenous therapies remain prominent.

While research nurses remain critical to novel treatment administration and study procedures, some ECMCs have reported that other team members are now involved in sample collection and/or sample processing. The increasingly significant role of samples of tumour tissue in current treatment approaches has signalled growing involvement of tissue bank staff and translational research nurses.

Further, the emerging role of specialist translational research nurses helps patients, carers and staff understand the increasing need for extra sample collections within clinical trials and studies. These nurses have expertise in tissue sampling and handling and are pivotal in ensuring patients fully understand the consequences of any results that may become available from the analysis of their tissue eg genetic testing, both now and in the future.

As technology has increased, then so has the availability of tests for patients on early phase trials. Being able to take electrocardiogram readings and send them wirelessly to a central source means that we have had to embrace new technology on a daily basis.

ECMC nurses’ role with other staff

Survey responses received from across the ECMCs highlighted a trend of emerging collaborations with other professionals (see Figure 1).

Figure 1. Interaction diagram highlighting the trend of emerging collaborations

As trials become more targeted and complex, we now hold much closer relationships with many more professions, such as research ophthalmologists.

As ECMC research nurses, we have embraced changes in the workforce; research co-ordination was originally viewed as a nursing role, but the expansion in practice, coupled with many other exciting opportunities for nurses such as clinical nurse specialist roles, have sometimes made it difficult to recruit into traditional nursing research positions.

A solution has been found with the introduction of clinical trials assistant (CTA) and practitioner (CTP) roles. CTAs and CTPs are a relatively new concept in the world of research, and nursing has been responsible for introducing clinical and communication-based competencies to ensure patients’ needs are met.

ECMC nurses’ role with patients

Patients and carers are more aware of clinical trials and it is not uncommon to receive phone calls, emails and general enquiries from patients looking for novel clinical trials that are relevant to them. This increase in public awareness has been beneficial and has helped to break down barriers and allowed for more open discussion around what it is like to be on a clinical trial.

Increased patient awareness of clinical trials is a positive change but, as early phase clinical trials become increasingly complicated and challenging to deliver, we are asking patients to do more within a trial. This results in more clinical visits, increased frequency for blood and tissue samples and additional scans.

‘We have had to adapt our skills to effectively communicate topics such as cancer mutations and targeted therapies, for example’

There has also been an increase in study requirements for fresh tissue biopsies. These valuable samples can be a game changer in understanding and allocating targeted cancer treatments, but can be distressing for some patients and puts an increasing demand on already stretched NHS systems.

Emerging trial protocols are more complex, which is reflected in prolonged screening of patients to evaluate if they are eligible for individual studies. This can take longer than in traditional early-phase studies as tissue biopsies are often required to undergo genetic profiling to determine what is driving the cancer’s growth.

This is essential to ensure patients receive the correct targeted treatment. However, in our experience, this prolonged screening period can, at times, mean that patients become too ill to take part in a trial.

Communication has also been an area in which nurses have had to improve. To relay information on complex early phase clinical trials, the information sheets that are given to patients to consider entry into a clinical trial have increased significantly in size over the past ten years. We have had to become more skilled in explaining complex trial terminology along with scientific principles and discoveries.

The language used by researchers and scientists reflects the complexity involved in running early phase trials, and we have had to adapt our skills to effectively communicate topics such as cancer mutations and targeted therapies, for example.

‘We have had to become more skilled in explaining complex trial terminology along with scientific principles and discoveries’

Alongside the developments already described, patients’ expectations of their relationship with us has also increased and they often look towards us as a key link in their clinical trial journey and see us as the first point of call for queries and advice.

The role has seen greater partnership between nurses and patients as the research has become more complex, targeted and personalised.

Including the patient voice is vital in producing patient information and the development of clinical trials. Over the past decade there has been a rise in the involvement of patients, carers and members of the public in clinical research design and co-ordination.

The benefits of patient and public involvement in the research process are many and include: developing a research protocol that aids trial recruitment; creating easier to understand patient information resources; encouraging local investigators and researchers to disseminate research findings; using the patients and public involvement panel input to identify potential areas that impact on trial recruitment; and improving the quality, relevance and dissemination of research.

‘The benefits of patient and public involvement in the research process are many’

This collaboration between clinical staff and patients and the public is a growing area within clinical research and will continue to develop as it revolutionises the way we approach clinical research. It is hugely rewarding to create a space for bench scientists and researchers to engage with patients; it changes the scientists’ views and approach to research. For a researcher, being able to attend patient-led groups and explain research is a reminder of the fundamental motivation to work in research.

Kelly Gleason, research nurse at Imperial ECMC, on the value of patient and public involvement

‘Getting patients involved in the research process has revolutionised the way we approach research.

‘I have found it especially rewarding to create a space for bench scientists to engage with patients. This changes scientists’ views and approaches to research and patients benefit greatly.

‘Patients also change their views of science, which makes them more open to taking part, and realistic of the timelines for results.’

Innovations in the ECMC nurse role over the past ten years

As well as providing a mechanism to turn research into practice, the ECMC has also led to several innovations in ECMC nurses’ role over the last 10 years. The workforce now has more: non-medical prescribers, practice educators dedicated to teaching staff, specialist nurses delivering niche fields of research such as imaging studies, nurse-led consent for clinical trial involvement, and translational studies.

There is also an established experimental nurses risk assessment group working collaboratively with the clinical research facility to assess risk from an operational perspective with first in human/phase I studies. For some of us our role has extended to working with Cancer Research UK’s press, policy, fundraising, research and innovation teams to support national priorities and raise the profile of research.

Many of the centres have supported the annual NIHR ‘It’s ok to ask’ campaign with the aim of promoting discussion on clinical trials with members of the public and fellow staff, and this year we will be supporting their new national campaign: ‘I am research.’

Looking towards new technology, some of us highlighted in our responses the role of social media, such as managing or participating in twitter accounts. This has been seen with the success of the #WhyWeDoResearch campaign whywedoresearch.weebly.com established by Claire Whitehouse @ClaireW_UK

‘Many of the centres have supported the annual NIHR “It’s ok to ask” campaign’

As the ECMC network celebrates its ten-year anniversary, it is evident that early phase and translational cancer research nurses have much to celebrate and be proud of. Responses to our questionnaire show we have embraced new developments in a changing early-phase and translational-research landscape.

In the era of personalised medicine and technological innovation, ECMCs and personnel have demonstrated resilience and flexibility, meeting the challenges of increasing bureaucracy, complexity and workload with expansion of facilities and roles.

‘In the era of personalised medicine and technological innovation, ECMCs and personnel have demonstrated resilience and flexibility’

Throughout the last decade, the bedrock of success has remained: effective teamwork, partnership working with patients and the public and the delivery of high quality care. As the ECMC Research Nurse Network Group, we look forward to supporting early phase and translational research nurses in the next decade, providing training and a forum for sharing best practice in a dynamic research environment.

What are ECMC research nurses most proud of?

In response to the survey question: ‘What are you most proud of, in working in early phase or translational research?’, three main themes were identified by the respondents. Nurses felt that the developing role of early phase and translational research nurses has made a difference over the past ten years.

Linda Jones, research nurse at Cambridge ECMC

‘I’m proud of the patients who donate samples, often at difficult times, to help move cancer research forward’

Diane Law, research nurse at Belfast ECMC

‘I’m proud of the confidence patients have in us’

Angela Little, research nurse at ICR ECMC

‘I’m proud of the attention to detail and holistic approach to patients, and their experience on a clinical trial’

Alison Pass, research nurse at Sheffield ECMC

‘I’m proud of the work we do in order to improve patients’ choices’

Joanne Todd, research nurse at Belfast ECMC

‘I’m proud of the recognition of our role in the team’

Kay Wilson, research nurse at Cardiff ECMC

‘What makes me proud? Making progress for future treatments and better patient outcomes’

Case study: Kasia Kozlowski, clinical imaging research practitioner at the Comprehensive Cancer Imaging Centre, at London’s Imperial College

‘Imperial College ECMC‘s main objectives include the development of novel imaging, biomarkers and therapeutic approaches that will aid cancer diagnosis, prognosis, response assessment and treatment.

‘Developments in research strategies – locally and nationally – have resulted in a rapidly expanding portfolio of imaging studies, and my role (clinical imaging research practitioner (CIRP)) at London’s Imperial College, has evolved alongside this to fit the needs of the imaging group and the expanding portfolio.

‘What was once predominantly a patient recruitment role with a focus on breast PET studies, has transformed into a multi-faceted role requiring a complex degree of ability in project set-up, management and delivery.

‘At any one time, the centre has run up to 11 imaging studies across seven tumour groups, recruiting patients from the three Imperial College Trust hospitals, as well as from external referrals. Studies involve both cancer patients and healthy volunteers and use two dedicated on-site research scanning facilities.

‘The CIRP has become the organisational lynchpin for all aspects of a study from protocol writing, ethics applications, study set-up, patient recruitment, data management, clinical care and service development.

‘On a practical level, this can mean organising the radioactivity and team needed for a scan, within 24 hours so that other tests and treatments planned for the patient are not delayed.

‘I have been working in cancer research for ten years, and the diversity this role brings is satisfying, but the patient remains the central focus of every aspect of my role.

‘Unlike many clinical trials, patients are not being offered a potentially lifesaving drug so, for most, there is no physical benefit to taking part in an imaging study; recruitment therefore, can be more challenging than with a clinical trial. Additional visits for research scans is often far from a patient’s mind when they are dealing with a cancer diagnosis yet their altruism never ceases to amaze me.

‘Imaging studies are unlike most other studies and this, in turn, makes my role unique.

‘Although immediate results aren’t always evident, imaging research often brings improved ways of diagnosing and monitoring cancer.’

Tools and resources

Cancer Research UK clinical trials database
  • Reliable, easy-to-understand information on cancer clinical trials for you and your patients.

Click here

National Institute for Health Research (NIHR’s) clinical trials gateway
  • Guidance on how trials work and help to connect your patients to researchers running trials they might be interested in.

Click here

Free patient resources, including ‘Understanding Clinical Trials for Cancer’ leaflet
  • Clear information on what a trial is, the different types of trials and how they work.

Click here

NIHR’s ‘I Am Research’ Campaign
  • National campaign to promote the benefits of clinical research. Order free materials for events.

Click here

Free online course for specialist nurses: Demystifying Targeted Cancer Treatments
  • Learn from experts and gain a deeper understanding of how targeted treatments work to support your patients.

Click here

Free online course: Improving healthcare through clinical research
  • Learn about how medical treatments are discovered, tested and evaluated to improve healthcare for your patients.

Click here


Acknowledgements

The ECMC Research Nurse Network Group would also like to thank Ruth Boyd (Belfast ECMC), Hannah Brown (ECMC Programme Office), Linda Jones (Cambridge ECMC) and Claire Murrell (Barts ECMC) for joint authorship of this article and the steering committee members for their input. For more information about the network, visit www.ecmcnetwork.org.uk


About the author

Karen Turner

Karen Turner is a research nurse at Birmingham ECMC

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