Patient Navigation Service: What is it and Why We Need It…

Navigating the complex landscape of treatment & care

In early 1990, Dr Harold P. Freeman, a radiation oncologist was concerned about the massive inequities in cancer care amongst the poorest communities in Harlem, New York. He recruited a group of people to become the first ‘Patient Navigators’ that would work with African-American women with breast cancer, supporting them to access timely treatment and care. Interestingly, these people were not healthcare professionals or medically trained, but lay members of the Harlem community. By 1995, these navigators had helped improve the 5-year survival rates amongst the patients that they were serving. In the last three decades, the training programme has continued to create over 1,000 patient navigators, who work within the complex US healthcare system and provide guidance to cancer patients who come from underserved patient populations.

We preface this blog with this piece of information to demonstrate that the very idea of patient care navigation was originally centred around supporting communities, for communities, from within communities. It stemmed from collaborative care—an ethos that we echo through and through at ACT.  The main goal of patient navigation is to eliminate barriers in healthcare. Over here in the UK, we want to harness these principles of patient navigation in helping hard-to-treat cancer patients, who also face inadequate health treatments and care.

As we know, a cancer diagnosis can often lead to an overwhelming state of mind for a patient and their family members. Emotional responses range from an immense feeling of shock, a sense of feeling lost, fear of the unknown, anxiety over an uncertain future, anger that there may not be a future, grief over the unfairness of the diagnosis, and depression—to name a few. The journey leading up to a patient’s diagnosis is one filled with a multitude of consultations, (usually) a prolonged period of feeling ‘’off’’ or unwell, and a series of consultations and medical tests until the patient definitively knows that they have cancer.

This journey alone is confusing and taxing as the patient and their families navigate a complicated healthcare system without prior medical knowledge and support—let alone the long and arduous journey that follows in the months/years to come. Most patients are unable to fully comprehend their treatment plan and the importance of prompt actions/evaluations. Everybody has seen or knows a family member who has desperately contacted doctors or medical professionals within their network to make sense of a difficult diagnosis. In an ideal world, this kind of support or advice would be extended to every single patient and their family members, not just a privileged few who are fortunate enough to have support within their network.

So, how does patient navigation work?

It is a program or service available for patients, their families and sometimes caregivers to help overcome some of the barriers that are posed by traditional health care systems so patients can access quality medical care and receive coaching support, from diagnosis to the end of the treatment plan. Put simply, it is a guided assistance for patients and their families to navigate the continuum of treatment and cancer care through a navigation programme that has been developed specifically for them. Other than taking some of the burden off overwhelmed and confused patients and family members, navigation services save time; and there is nothing more critical and important than time when it comes to cancer treatments.

Navigation services are equally important for clinicians as oncologists can feel confident that their patients are being guided to find appropriate solutions and options by a patient navigator, a sensible and trusted resource. Evidently, the first patient navigation service was initiated by a clinician so that community members could step in and help patients make the best use of their doctors’ expertise, as well as signposting to available healthcare services and community services. Navigation facilities take a load off the overworked and time-poor healthcare professionals, and reduces the worry that patients may end up following an ill-advised and unsuitable treatment route that could cost them potentially precious time and money.

Building up patient navigation in the UK

Healthcare systems across the world, even in rich western countries, are often fragmented. Those that are left behind are the ones that most need help with navigating complex healthcare systems. The poor. The disabled. Racial and ethnic minorities. Women and children. The list can go on. Patient care services don’t entirely cut through these socio-economic barriers but can at least provide a platform through which people from all walks of life can move rapidly through the standard healthcare system and create a realistic pathway to navigate cancer treatments.

At ACT our Clinical Care Lead, Dr. Jack Kreindler has for many years provided guidance and navigation support to a number of patients and their families on a voluntary basis. He has listened to patients express their anger and grief over the lack of support in their local healthcare systems. He has heard people mourn the pain of their children and parents alike. To the best of his ability he has helped them use their strength to not only cope with the diagnosis at hand, but the will to approach the treatment plan with as much structure and planning as possible. At the heart of his work, he has given patients the knowledge of their disease and their treatment options so they could make informed decisions about how they would like to approach their treatment plan.

Dr. Jack’s work has been a part of the larger effort to eliminate postcode privileges (to the extent possible) in navigating the complexity of cancer care. However, to make this effort sustainable and scalable, ACT is planning to partner and launch a navigation arm to its service, endeavoring to become a main point of contact for patients and their families to navigate diagnostics and logistics, treatment planning and coordination, providing letters of appeal, helping with referrals, connecting patients to community resources, and also publishing research on our findings.

Given ACT’s unique expertise and advocacy in promoting innovative cancer treatments, we would help patients connect with innovative treatment centres, where applicable and enable these treatment centers to work collaboratively with patients and oncologists to work through a treatment plan that is best for the patient’s individual case. The service will be multidisciplinary and will aim to contribute to several research and education material on clinical pathways and quality of life studies, as we will rigorously document data points form the patient’s individual cancer case, efficacy of innovative treatments, and cost-benefit analysis of any treatment plan on the patient’s overall life outcome.

Our ultimate aim at ACT is to advocate for a future where cancer care—innovative or standard, becomes accessible to every patient despite their postcode privileges. All our efforts are in hopes of a tomorrow where everyone in the UK, including those from marginalized communities will receive the right information and guidance on their treatment plans as well as access to innovative treatments.

The road is long, but in the words of poet Robert Frost:

“The woods are lovely, dark and deep, but I have promises to keep, and miles to go before I sleep, and miles to go before I sleep’’

Let’s work for change, together…