There is much talk of the old and new normal, but the reality of the future will be a blend of the two, and the patients’ journey with their disease will have a different shape going forward. 

When the COVID -19 pandemic first hit, the world went into lockdown swiftly because no one knew what we were really up against – how contagious this was, or how the disease would play out.

Almost every country is still battling the virus, with varying degrees of success; most are in a second wave and there are rumblings of a possible third wave before the much-heralded vaccines can be distributed and take effect.

The first lockdowns brought about well-documented and massive disruption on non-COVID diseases as surgeries were stopped, clinics closed and services were re-prioritised; it was all hands on deck to fight COVID-19. Nine months in, valuable lessons have been learnt and adaptations made.

In some ways the task during the second wave is even tougher, because this time around the intention is to maintain care for other urgent cases such as heart attacks, strokes, cancer and surgeries. So what took place during the first wave is unlikely to be mirrored this time around as we know more now about how the virus behaves and the cost of total shutdowns to patients with other diseases.

Patient treatment journeys for many diseases are in a state of flux. We are no longer at the beginning of the COVID-19 story - hopefully past the midway point now that vaccines are coming on line -  but we are not yet at the end. It is still an evolving picture and as yet we do not know the full impact of the pandemic on non-COVID patient journeys,  but it is becoming clearer that there will be some lasting effects – some negative and some positive.

Many pharma companies are revisiting their patient journeys at the moment to validate or refresh them in the light of the pandemic to ensure that they remain relevant in tomorrow’s landscape

Our patient journey research has surfaced several emerging insights

The impact of COVID-19 on patient journeys varies widely by disease 

Almost every therapy area that we have conducted recent research in has experienced some disruption, often significant disruption, with appointments, surgery and hospital treatments being interrupted or delayed.

However, this has varied across diseases. In some less serious areas this was a blanket shutdown of clinics, instigated by the hospital as resources were rightfully channelled elsewhere. However, in other more life-threatening diseases physicians have told us that they have avoided detrimental disruption and have managed to meet the patients’ clinical needs. In these instances, the treatment decisions appear to have been tailored more to the individual’s circumstances. 

Pharma companies are seeking to understand to what extent the treatment pathway during COVID-19 is a temporary detour, or does it look more likely to be permanently forged?

They are asking to find out how has the virus affected the way the patients receiving their products are now engaging with healthcare services and receiving their treatment? How have the challenges been met, what problems have been solved?

And, crucially, which of these changes will stay in the future and which will return to the old way of doing them?

Not all changes have been detrimental to patients’ quality of life, some have proved to be positive to both patient and physician.

For example, telemedicine: a phone consultation is adequate at times; a shift to oral treatment or different monitoring protocols may be more convenient and not compromise efficacy and safety. Pharma is looking to understand how these changes are surfacing in their own patient journeys, and whether and what the wins and losses of these changes might be.

The pandemic has led to a change in patient attitudes and priorities

As a dedicated patient researcher, I am especially interested in the way that the COVID-19 year has affected the patient experience and relationship to their non-COVID condition. This in turn has impacted upon their level of activation and their journey with treatment (direction and pace).

It is clear that patients’ habits and ways of thinking about their health have been shaken up. For some, the risk of contracting the virus outweighs their perceived risk from their pre-existing condition. This can result in them cancelling appointments and the journey slowing down. For others though, the disease they have ‘trumps’ COVID-19. These patients are highly motivated to avoid any disruption to their ongoing treatment and the pace of their journey is less likely to be interrupted (at least by the patient themselves).

For Pharma it is important to understand how patients are currently evaluating their relative risks, how they are now making decisions and treatment choices in their efforts to stay safe.

Our research has shown that some patients have become more activated as a result of the pandemic – they have been more active in searching for information about their disease and treatment, seeking alternatives to minimise their risks and looking for workarounds to avoid delays. For example, we have seen an increase in the desire to learn how to self-inject to avoid going into hospital for an injection. This is a permanent behavioural change, and that patient journey will be permanently changed after the pandemic is over.

There is evidence then that patients are becoming increasingly influential in the dynamics of the management of their condition and, therefore, a key stakeholder to hear from when developing the patient pathway.

Patients have upskilled in their use of virtual platforms

Before the pandemic, there was already a general trend towards virtual channels in healthcare systems and this has been greatly accelerated by the virus. Isolation has driven a fast learning curve due to the human need to connect. Telemedicine has been a necessity to maintain safe contact with vulnerable patients, and to keep our healthcare professionals safe too. It has proved to be efficient in many, though not all, situations. Investigations and interventions require a hands-on approach still and discerning when the patient needs to be seen then becomes paramount. The quality of the doctor’s questions and the articulacy of the patient then becomes more important than ever. If communication between them is sub-optimal then misjudgements as to the urgency to see a patient will be made.

It is reassuring that there are some positive outcomes from this awful pandemic period, but there are a couple of aspects that are more negative. 

Even where clinical needs of certain patients have been met during the pandemic, the emotional toll has significantly impacted quality of life

The emotional burden on some patients has been massive, especially in life-limiting diseases which are traumatic already.

Hospital visits are often an opportunity for patients to gain reassurance, meet other patients in the same situation and to ask questions. These opportunities have been limited or non-existent for some months now with knock on effects on the patients’ emotional well-being.

The comfort of a nurse’s touch or the reassuring presence of the expert physician does not travel across a computer screen. These things may seem a ‘nice to have’ in these times but for the patient they can be the difference between fear or relief and should not be under-estimated. After all, quality of life is a holistic, if subjective, concept – it is the patient’s lived reality of a disease and has no small part to play in their engagement with treatment

Everyone has had social contact restricted by the virus and this will continue for some time yet. However, for those with life limiting diseases, this is especially hard. Before COVID-19, when patients had a break from chemotherapy or had a window when they felt much better, they would seize the opportunity to see family and friends or have a holiday. While the pandemic continues, they cannot exploit these moments and feel robbed of precious time. It is to be hoped that the vaccine means that they can regain these periods of freedom soon. 

Where we are now in the pandemic, the full extent to which disruption has been detrimental to patient journeys has yet to come to light.

Although healthcare systems have endeavoured to meet clinical needs as best they can, the reality is that there is a backlog of screenings, delayed diagnoses and interrupted treatments which will have repercussions on treatment pathways.

This means that the patients’ journey in certain diseases will continue to feel the impact of the pandemic for some time after it has been controlled by vaccination. It is important for Pharma companies to monitor the ongoing situation to determine barriers to optimal treatment and to identify new pain points where support/action is required. By having a finger on the pulse of change, it will mean that future commercial and communications strategy can be adapted successfully to new challenges emerging.

The pandemic has created many clinical and emotional needs amongst patients which Pharma can help to address to ensure that the path patients tread in whatever disease is the best it can be. By learning from what has taken place this year and validating or refreshing understanding of the patient journey, Pharma can move towards future-proofing the journey so that it can better withstand further events like the pandemic.