By Dr Frances Pearson & Anna Longjaloux

A patient pathway can be defined as, “a complex intervention for the mutual decision-making and organisation of care processes for a well-defined group of patients during a well-defined period”. Pathways typically track patients all the way from referral through to diagnostics and then to treatment, enabling an understanding of the efficacy of care and highlighting areas for improvement. They can also be used to predict individual health outcomes – for example, the expected recovery time after a routine surgical procedure.

The objectives of mapping patient pathways for a healthcare organisation include reducing clinical variability and improving best practice, promoting patient safety, co-ordinating care teams, reducing operational burdens and in doing all of these things, ultimately maximising health outcomes for the patient. But, until relatively recently, and despite being the supposed main beneficiary of such activities, the patient has remained a minor part of the process.

In the 15 years since the above definition was published, the role of patients in their own healthcare has radically evolved. The healthcare systems of yesterday predominantly followed a paternalistic model – patients got what HCPs and providers believed they needed, and that was that. In today’s era of patient centricity, where the individual benefits from an increased stake in their own healthcare through shared decision-making. And with the acknowledgement that healthcare should really be more about the patient than the process, there must be co-evolution of patient pathway design to account for the fact that patients are humans, and as such, incredibly diverse both biologically and in their own lived experience.

One size seldom fits all

One of the primary challenges for pathway mapping is complexity of care. Taking a routine surgical procedure for example, the movement of the patient through the care system could (though, not always) be thought of as a relatively simple flow diagram. Patient sees GP, GP refers to specialist, patient is assessed prior to surgery… etc. The patient group in this example is likely to be ‘well-defined’, as is the time taken for the typical patient to move through from pre-op to recovery to discharge, which can be fairly accurately estimated and modelled, providing there are no unforeseen complications.

But when it comes to chronic conditions, like cardiovascular disease or autoimmune disease, making assumptions based on the ‘typical’ patient is almost impossible, because the ‘typical’ chronic disease patient does not exist. This makes mapping pathways extremely complicated.

Learning to accept unpredictability

In our recent work with people with the archetypical autoimmune disease systemic lupus erythematosus (commonly referred to as lupus), we have learned that the patient experience with this condition differs vastly from person to person. This variability is responsible for many of the poor health outcomes experienced by people with lupus. It is also behind protracted diagnostic periods, which are on average 7 years from first presentation to diagnosis. This translates into a protracted period of sometimes many years that the affected individual spends in pain and discomfort before a treatment plan is defined, during which time the person’s own immune system is relentlessly attacking its host’s organs, such as the kidneys, heart and brain. There is no cure, and the damage is irreversible.

Care pathways in lupus are rarely linear. The list of possible lupus symptoms reads like a cast of thousands, that wax and wane without predictability. One month the patient may experience fever, joint pain, skin rashes and extreme fatigue, and the next month brings headaches, brain fog and low mood. According to a survey by The Autoimmune Registry, over half of all patients with autoimmune conditions experience co-morbidity, where diagnoses overlap, and their impacts accumulate. Ten percent of those surveyed in their study were living with over 5 diagnoses simultaneously. All of this volatility and complexity means that a care team comprising of rheumatologists, dermatologists, cardiologists, nephrologists, mental health specialists and potentially many other healthcare professionals may need to be assembled depending on the person’s own personal journey.

Patients may need to attend several different healthcare settings, meaning that different specialists must communicate with each other for optimal patient care. Whilst the referral system in the NHS overcomes some of the barriers to this, we know from our interviews with people with lupus that this rarely happens in the US, meaning the patient themselves often needs to act as the conduit for clinical information between multiple independent providers. The added pressure and frustration of this can have a significant impact on patient wellbeing and quality of life. 

Without acknowledgement and embrace of the diversity of the patient experience, these challenges, and more, make modelling a care pathway for autoimmunity incredibly difficult.

How did we forget the patient?

Traditionally, mapping patient pathways in the UK has been clinical, transactional and process driven. Hospital Episode Statistics (HES) and other available data have been used to define and follow a particular patient population with minimal consideration of the more emotional aspects of care. HES data typically includes patient details, clinical details and administrative details only.

A more holistic definition of patient pathways overlays the clinical flow with lived experience, to acknowledge all contributors to quality of care. Questions could include: What is the time in between each step? Where are the delays? What impact does a delay have on the patient? How many practitioners does the patient see? Is the patient kept informed of their progression through the steps? How do they perceive the standard of care they are receiving? What actually matters to them, personally?

While we may be moving from sporadic and simplistic patient surveys to the development of tools to better collect information on the patient experience, these are rarely incorporated into pathway design because of decisions relating to the prioritisation of service improvements over patient centricity.

Turning the conversation around

So, how do we begin to place people at the centre of patient pathways? For VISFO’s CMO Dr David Williams, it begins with reassessing our use of language. “I don’t like the term patient, I prefer ‘people with conditions’ because they live with them all the time, while the healthcare system sees them during an episode of care once every few months”.

We need to better acknowledge that most people accessing healthcare services have complex, often lifelong conditions which severely impact their quality of life. No neat, linear pathways will ever capture the complexity of their care, so we must turn to terms like ‘experience’ and ‘journey’ to better describe the sporadic but lifelong presence of healthcare system in their lives.

The hope is that improved understanding of people’s needs and preferences will result in them being empowered to take a more active role in their care, promoting a shift towards them becoming an equal partner in their own health. The use of technology is vital; through deployment of high-quality mobile health products, for example, patients can track and manage their conditions, medications and appointments, facilitating better patient-physician interactions.

Listening and learning

In a recent article in PMLive, Su Smith, Director of Origins Insights recalled,

“When I entered the industry 15 years ago, people started patient journey maps by asking a clinician what the patient journey was. Now, people have a better understanding that, if you want to understand the patient experience, you should probably talk to a patient…”.

Su Smith, Director of Origins Insights

It may seem obvious, but talking to and listening to people suffering from these conditions needs to be the very first port of call for understanding both clinical and emotional aspects of the patient journey.

At VISFO, we know the value of talking to patients, and we use technology to listen. We’re taking note of health-related discussions happening on social media and track key themes as they develop and diversify. We’re discerning the key issues for patients as they compare and occasionally contrast with those of doctors. In doing so, we are generating rich real-world insights – vital pieces of the patient-centricity puzzle, but not traditionally available to organisations mapping care pathways. These insights will develop and evolve the patient pathways of the future.