Authored by Cello Health, now part of Lumanity

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 more widely distributed and take effect. Where the roll out has been more successful, early signs are promising but the spectre looms of more contagious variants which could restart widespread infection. In addition, populations are becoming weary of lockdowns and are jumping the gun against the advice to ease restrictions very cautiously. Disparity between countries in vaccine access is the hot topic and restarting economies and travel will likely be piecemeal and stop /start affairs.

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. By the time the second lock downs began, valuable lessons had been learnt about how the virus behaves and adaptations were being made. Clinicians had identified best treatment practice and were able to prevent at least some deaths.

In some ways the task during the second wave has been even tougher, because the intention has been to maintain care for other urgent cases such as heart attacks, strokes, cancer and surgeries. Healthcare systems are making supreme efforts to avoid repeating what happened in the early days of COVID as they see the cost of total shutdowns to patients with other diseases.

A year on into the pandemic, 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. The outcome is heavily dependent on the speed of the roll out across the world and the resilience of populations to tolerate restrictions on their social activities, travel and employment. 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.

More and more 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 valuable 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 prolonged period of blanket shutdown of clinics, instigated by the hospital as resources were rightfully channeled 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. Those in most need have still received the attention they required. This belies much of the reporting in the media and also anecdotal experience from patients on the receiving end who have often not felt that their standard of care has been maintained to a level that they feel comfortable with.

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? In addition, they are looking for the emergence of new ‘pain points’ along the journey where timely interventions could avert disengagement or interruption to treatment in future

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? This is less about tracking what has happened and more about pre-empting what could adversely impact their commercial plans going forward

Crucially they need to understand which of these changes will stay in the future and which will return to the old way of doing them?

It is becoming clear that not all changes have been detrimental to patients’ quality of life, some have proved to be positive to both patient and physician.

In some markets there has been an increase in telemedicine: whilst it required some adjustment at first, physicians have come to appreciate the benefit to patient throughput, and patients with well-controlled chronic conditions have been saved effort and expense without detrimental effects to their management. A phone consultation is adequate at times though clearly no good when tests or examinations are required.

Other changes emerging have also delivered on convenience without compromising efficacy and safety: for example, switching to oral treatment and different monitoring protocols. It’s been a fast moving situation and Pharma has been looking to understand how each of these changes is 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 has outweighed their perceived risk from their pre-existing condition. This resulted in them cancelling appointments and the journey slowing down. For others though, the disease they have has ‘trumped’ COVID-19. These patients have been highly motivated to avoid any disruption to their ongoing treatment and the pace of their journey is less likely to have been 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 misjudgments as to the urgency to see a patient will be made.

Since COVID struck, we have also witnessed a rise in patient support app development by Pharma helping in the management of chronic conditions, promoting engagement and keeping patients on their treatment pathway. Receptivity to these support tools has been high amongst patients and healthcare professionals alike.

It is reassuring that there are some positive outcomes from this awful pandemic period, but there are a number of other 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

Those with mental health issues have particularly struggled during the lockdowns and numbers needing mental health support have grown. The emotional burden on patients with life-limiting diseases too has been massive.

Hospital visits are often an opportunity for patients to gain reassurance, meet other patients in the same situation and to ask questions. Those opportunities were limited or non-existent for some months now with knock on effects on the patients’ emotional well-being. Changes to the frequency and nature of consultations has shaken up important doctor-patient relationships (at least in the patients’ eyes)

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 looks set to 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 vaccines mean 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 patients have been slower to present to Primary and Secondary care and there is a huge 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. Oncology in particular has been heavily impacted. 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 a pandemic.