Patient navigation in cancer care

Gail O’Brien was married to the late Professor Chris O’Brien (AO), and played an instrumental role in supporting her husband’s vision for Australia to have its own world-class, fully integrated and comprehensive cancer care facility.

Gail was by Chris’ side when he was initially diagnosed with brain cancer, and until he passed away in 2009. It was soon after this that she accepted a position as board member of the facility that now bears her husband’s name.

Since then, Gail has used her own experience and insights to address a wide range of corporate, industry and special interest groups about the new hope that lies ahead for the thousands of Australians each year who receive the news they have cancer.

Gail took the time to respond to these questions:

What are the roles and aims of the Chris O’Brien Lifehouse and how do they support patient navigation?

Patient navigation is a patient-centric healthcare service delivery model. The drive to establish the Chris O’Brien Lifehouse was to create a facility that encompasses patients as the core of all functions and uses of the organisation. This includes the patient journey as central to decision-making for processes and functions as they are created and delivered. Our values underpin the way we make decisions, review the effectiveness and continuously seek refinement and improvement in processes. We work to ensure the patient is receiving best practice care and support.

The values of the Chris O’Brien Lifehouse:

Collaboration — working together to drive excellence

Respect — honouring dignity, embracing diversity

Empowerment — enabling independence and confidence

Nurture — cultivating compassionate support

Discovery — innovative research, inspiring hope

Our clinical and support staff, and our support partners collaborate to provide a patient-centred experience for all patients and their families during their time at Chris O’Brien Lifehouse from referral onwards. We work across all departments for a streamlined delivery of support and care that is appropriate to treatment of individual patients and their support network or family or carers. We take into account circumstances and unique needs, and then adjust the delivery of care to what will be most effective and accessible for the patient, rather than have them fit into our model of care.

You have spoken about the privilege of being with patients and their loved ones despite the fears and unknowing they face. Can you talk a little about how your personal experience has influenced your approach?

Deep awareness of what the patient and their family are actually going through in terms of their physical, mental, emotional, financial wellbeing allows me to be more knowing and present to their needs. There is a sense of trust that develops through shared experiences of trauma and bereavement.

What are the typical steps you might take to support patients in navigating care services at this time?

When I am introduced to a patient and their family, I take the time to understand their clinical care pathway and then review their individual circumstances to see what other areas of service and support can provide the best level of care and comfort. Referring them on to specific services within COBLH , such as integrative supportive oncology with allied health, touch therapies or music therapy, culturally specific support services or connecting them with community organisations can provide reassurance and increase their level of wellbeing throughout treatment.

What are typical responses of patients and family to the support practices at Lifehouse?

Typically, patients and their families are very grateful for the patient pathway developed and practised at COBLH. Managing a cancer diagnosis and all that entails can be bewildering and overwhelming for both the patient and their family or support network. Helping them to feel empowered in their ability to receive and interpret the information connected with their COBLH experience and connection to services and support available to them has a significant effect on their perception of being connected and heard and their ability to manage their treatment.

There must be a big demand for this sort of support.  How many staff would be involved in patient navigation/support roles at Lifehouse?

The areas of patient navigation that support a patient include front-line staff – receptionists and secretaries who would initially be the first point of contact with the patient after referral. At this point, patients are still being integrated into their health care plan. These staff members would liaise with the team of health care professionals involved with the patient’s care to ensure patients receive specialist care and help them communicate with their healthcare providers. Specialist nurses who manage and support specific tumour streams would be involved in all aspects of patient care and coordinate between the various team members for an integrated care approach and responses to questions or symptom management in a timely manner.

Other support roles include my role as Patient Advocate, Patient Liaison and Spiritual Care staff.

To what extent are clinicians advised or equipped to adopt a patient-centred role that requires them to respond to a patient’s individual needs?

The patient-centred model of care was a foundation of the COBLH vision and fundamental to the procedures of patient care in the set up of the centre.  These aspects of care have continued as we have grown and expanded and it is part of staff orientation to the hospital to have patient-centred care positioned in Multi-Disciplinary Team meetings, as well as mentoring from senior clinical staff and the opportunity to debrief and receive support for situations clinicians may wish to learn from or to assist with developing resilience and compassion. This approach is evident in all aspects of care.

COBLH is part of a global practice known as the Schwartz Rounds, whose mission is to place compassion at the heart of healthcare. The Rounds are a place where clinicians and support staff meet in a safe environment to reflect on their own practice and its impact on both themselves and their patients. The program focuses on the human dimension of medicine. These regular meetings are a great source of support and education to staff involved in any aspect of patient care.

To what extent do you think Australia’s health system is addressing the need for and availability of patient navigators?

Patient navigation and patient-centred care is an emerging model of delivery and there is still a way to go for the concept to be more readily accessible in clinical settings to improve patient experiences. The recognition of patient navigation in clinical settings can comprise administrative/support staff and/or nurse specialists who coordinate the patient’s appointments and care plan and follow up.

Given the changing dynamics affecting patients navigating health care in the 21st century…is the health system offering the right career paths in health care given the growing complexity and choice of treatment options?

The use of nurse specialists; Nurse Practitioners, Clinical Nurse Consultants and Clinical Nurse Educators works very well in a patient navigation context. Integrating supportive care: physicians, allied health and evidence-based complementary therapies into the patient’s care plan has been shown to increase wellbeing and general health. The use of these groups is significant in their ability to connect patients with all aspects of clinical care and support.

Some of these positions can be funded and others rely on philanthropy or grants to provide the positions.

Do you know of patient navigation examples in other countries that Australia should take note of?

The USA has been the fore runner of Patient Navigation and has used the model of patient navigation since the 1990s when surgical oncologist Dr Howard Freeman launched a program in Harlem to provide screening outreach services and integration into health services as required for the local community. This model of care and early intervention improved the five year survival rate of breast cancer patients from 39% to 70% in their area.

In 2005 the US Government passed the Patient Navigator Outreach and Chronic Disease Prevention Act which in turn provided funding for Patient Navigators for a range of diseases, along with Not for Profit organisations that fund the model and the Patient Navigation model has successfully been implemented throughout the USA since that time.

Other countries are beginning to take up Patient Navigation as a model to connect patients to primary care practitioners for chronic disease and this is increasingly being recognised as an effective model of patient care management.

Are there funding measures (eg Medicare benefits) needed to support patient navigation?

For certain tumour streams we are fortunate to have funding for specialised nurse support with Clinical Nurse Specialists, Clinical Nurse Consultants and Nurse Practitioners but this does not apply to tumour streams. These specialist nurses are often privately funded via not for profit organisations, or a bequest. There is room for this level of support to be shared across all tumour streams, including rare cancers, to provide an accessible and specialised bridge of support and education between patients and their treating doctors.

Portrait of the authorGail O’Brien AO has a background in health. In addition to her role as pateint advocate and Board member with the Chris O’Brien Lifehouse, Gail is also a practicing physiotherapist, working within the hospital sector in the area of orthopaedic rehabilitation.

Gail originally trained as a physiotherapist at the NSW College of Paramedical Studies and was initially appointed to Royal Prince Alfred Hospital as a physiotherapy resident in 1976.

After marriing her husband, gofted cancer spoecialist, Chris O’Brien AO, Gail managed Chris’ busy practice from 1987 until 2006.