Behind every cancer breakthrough, are thousands of patients who have volunteered to participate in clinical trials, which have led to major advances in the prevention, early detection, diagnosis, treatment of people living with cancer.

As well as determining what does and doesn’t work in people, clinical trials also help doctors decide if the side effects of a new treatment are acceptable when weighed against the benefits offered by the new treatment. However, a crucial aspect of the success of clinical trials that often goes unrecognised is providing participants with the information necessary to recruit and retain trial participants, as well as helping navigate them through the process. This is where nurses like Lindah Chikazhe of the Cancer and Blood Research Trials Unit at Waikato hospital come in.

Ms Chikazhe is passionate about health literacy and as part of her Master's degree, she undertook a project to develop an information pack for clinical trial patients.

“The role of a trial coordinator is very challenging and exciting. Interactions with patients and family are central to my role and I have a responsibility to ensure that clinical trials are conducted according to Good Clinical Practice,” said Chikazhe.

According to Ms Chikazhe it is important to provide information about clinical trials written in lay terms that patients and family/whānau can understand, which in turn will improve the quality of the informed consent process.

It is for this reason that she led a project to develop a clinical trials information booklet for patients and family/whānau, in order to achieve the following goals:

• To provide a form of information support designed to be appropriate for low health literacy.
• To improve the patients’ understanding of clinical trials and expectations of participation.
• To ensure information is easy to understand for patients and family with appropriate visual appeal.
• To reduce anxiety of patients and families/whānau, considering participating in a clinical trial can be overwhelming.
• To incorporate the principles of the Treaty of Waitangi in the development of the booklet, to ensure a culturally appropriate approach is used in the project. This will ensure inclusiveness to empower ethnicities such as Māori to make a fully informed decision to participate in a clinical trial.
• To incorporate information from other services within Waikato District Health Board and Midland Cancer Network, to help patients navigate the complex health system.

Speaking to the impact of her work, Ms Chikazhe highlighted the importance of providing the information necessary for patients to make informed decisions when it came to participating in clinical trials.

“Key components of the trial process are not always understood, even for patients enrolled in a trial. Informed consent forms may be difficult to read and understand. Misunderstanding can occur between patients and clinicians, for example, in the terms used to describe aspects of care and treatment. It is our responsibility as health professionals to ensure that patients have the information, tools and resources they require to make an informed decision,” added Ms Chikazhe.

This year Cancer Research Trust NZ (CRTNZ), the second largest non‑government cancer research funding charity in New Zealand, awarded a Professional Development Award grant to Lindah that will enable her to attend the 21st Annual Scientific meeting of Australian Gastro-intestinal Trials Group in August 2019 in Adelaide where she will share the new information pack template with others working in the field.

Says Lindah, “funding opportunities for nurses to attend conferences are very limited and CRTNZ plays a very important role in this respect. I am excited by the opportunity to share the outcome of my work, and equally excited by the prospect of learning from those attending the conference.”

An important part of the work of CRTNZ is funding the professional development of key cancer researchers and clinicians. To date, more than 500 Professional Development Awards have been given.

“While several organisations fund professional development, CRTNZ is the only one that funds people across the entire cancer control workforce. So, as well as supporting academic researchers and doctors we also enable nurses, social workers, medical physicists, physiotherapist etc. to attend conferences and undertake advanced training,” said Executive Director Dr Douglas Ormrod.