Malta has successfully introduced innovative nurse navigators to its cancer care services, which brings a personalized, integrated approach to care both during and after treatment. Dr Gauden Galea, WHO Representative in China, is a public health expert familiar with the service in his native Malta. He acknowledges that person-centred care is something frequently talked about but rarely seen in practice. The new role is changing that.
“The nurse navigator makes the system revolve around the patient. At a time of great distress, the nurse navigator guides the patient through a maze of services, protocols and forms, and creates a cocoon of confidence in the system that is good for a patient’s mental health and contributes enormously to the quality of the overall therapeutic experience.”
As in most high-income countries, cancer incidence is increasing in Malta, but so too are cancer survival rates. Behind all cancer statistics are hundreds of individual stories of struggle, endurance, acceptance, and increasingly, recovery. Health officials in Malta are paying more and more attention to the quality of life of people who experience cancer, both during and after their treatment.
It was a deep concern for the individual experiences of cancer sufferers that drove Danika Marmarà, Director of Malta’s Cancer Care Pathways, to seek out and develop approaches that serve the individual needs of patients beyond the essential medical treatment of cancer tumours.
Lessons in cancer care
Marmarà studied medical imaging in the United Kingdom, where she became interested in cancer services. Her initial focus on improving breast screening services and cancer technologies, like breast imaging, evolved over time into a broader concern for the lived experience of cancer patients as they navigated health systems.
The most impressive features of cancer care Marmarà witnessed during her time training and studying in the United Kingdom were timeliness and efficient coordination. Time frames were set out to ensure rapid follow-up and diagnosis. Oncology specialist nurses took on the role of case managers, providing a point of contact for patients, actively communicating with them, and guiding them through services and difficult treatment journeys. Even with those fairly robust processes in place, it was apparent that patients could still fall out of the system.
Researching ways to prevent or catch people at risk of slipping through gaps in the system led to Marmarà’s first encounter with the idea of a health system “navigator”, which was being trialled in parts of the United States. The concept stuck in her mind. On completing a PhD in cancer care at Stirling University, United Kingdom, she returned to her home country of Malta with a vision to improve cancer systems locally.
Listening to patients
She began her research in hospital corridors, talking to people receiving care and their families to understand what the existing cancer care “pathways” looked like from the perspectives of patients, and to identify where there were gaps. Of her research, she says she wanted to study the whole cancer pathway and know what happened to patients at each stage. Moreover, she wanted to understand what patients go through once they have completed their treatment.
“Both the patients and their relatives said that they felt more lost because they were less in contact with the system upon completing treatment. They had 9 months of being followed up by a health-care team and then, all of a sudden, they completed their treatment and they felt lost.”
Listening to patients in cancer care settings, she discovered that, in the first 6 months to 1 year, the needs of patients tend to change. “The needs at diagnosis are quite different to those after treatment, which takes a heavy emotional toll. Each person’s needs depend on their context; for example, if it’s a woman who works and has a family, it’s about returning to work, coping with family and relationships, and, of course, her physical, psychosocial, spiritual and emotional needs.”
The implicit question she repeatedly heard from patients was: how will you help me go through this ordeal? It was clear to her that patients needed the health system to have a human face, someone to respond to their concerns, to help them navigate its complexities, and to advocate on their behalf.
Making the business case
Over the course of a year, Marmarà researched Malta’s cancer services and patient experiences and presented her findings to the Ministry for Health. Her audits and research clearly identified existing service gaps and showed where improvements could be made.
Significant areas that warranted attention were: delayed treatment; difficulties for cancer patients navigating the system; and the need for more coordinated, customized and continuous patient care. Her insights into the experiences of patients and their families at the different stages of the cancer journey laid the foundations for the introduction of the nurse navigator role – along with other innovative services, such as fast-tracking suspected cancer cases and coordinated follow-up care for cancer survivors.
Holistic and continuous care is at the core of the nurse navigator role in Malta. The role is designed based on input from patients about their day-to-day needs, including accessible cancer type-specific information, joined-up care, and dealing with fear of the unknown.
The roll-out and evolution of the nurse navigator was a steady and slow process. Initially, it involved collecting and analysing the data to understand where the service gaps existed, uniquely from patients’ perspectives rather than service providers as was the tendency, and then making the case to the Ministry for Health for investment based on those findings. It was particularly important to demonstrate in the business case how the nurse navigator role could benefit the overall health system, not only showing improvements to patient experience and a reduction in service complaints, but also fewer hospital admissions and support for other members of multidisciplinary teams.
Fruits of persistence
Achieving buy-in from clinicians, including the nursing community, and health officials required evidence and persistence; however, the hard work paid off. After a lot of groundwork, the role was launched in 2017 with the recruitment of a nurse navigator for colorectal cancer. Since then, nurse navigators have been recruited for gastrointestinal, lung, urological (prostate, bladder, kidneys, penile, testes), gynaecological, head and neck, and most recently, breast cancer. A WHO mission to Malta in 2019 to review cancer care pathways recognized the value of the nurse navigator role and made specific recommendations on how it could be further developed, including transferring some of the heavy administrative load to clerical officers.
Navigating health-care services can often seem like a maze for new patients, particularly if care requires interaction with multiple providers and in multiple facilities. Moves towards introducing digital health records will go some way towards integrating primary and secondary care, helping different parts of the system “speak” to one another. But it does not represent a panacea for the experiences of patients who, when diagnosed with a serious illness like cancer, need to rapidly access information and learn about the care system.
Depending on where a patient lives, the type and severity of their illness, their capacity to self-advocate and other factors, huge disparities exist between the experiences of patients, from pre-diagnosis to follow-up treatment. The Maltese model of the nurse navigator provides one solution to make systems more patient centred, coordinated and joined-up, by providing someone dedicated to an individual’s care pathway, someone who knows what is going on in the life of the patient and serves as a conduit between care receiver and care providers.
A replicable model?
The introduction of nurse navigation in cancer care in Malta has demonstrated benefits for people diagnosed with cancer, including: faster diagnosis (also due to a new fast-track system developed by the Cancer Care Pathways Directorate with general practitioners); shorter time between diagnosis and start of treatment; increased patient and caregiver knowledge; better adherence to recommended care; and reported improvements in quality of life. Other countries may take note, as early signs are that this model is providing real improvements and truly embodying patient-centred care.