Decisions about us, without us: why we can’t allow COVID to derail progress towards patient-centred healthcare

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It’s the ultimate irony: a pandemic that’s put public health at the heart of global thinking has exposed the thin veneer of patient-centricity that runs across our health systems. When COVID struck, the ‘informed patient’ – emboldened by a growing advocacy for shared decision-making – was socially distanced from the discussions that mattered. After years of pushing for greater patient involvement in healthcare decisions, the system came up short in the moment of truth. The result? Decisions about us, without us. It’s not how the slogan was meant to play out.

As someone who’s spent a lifetime banging the drum for person-centred healthcare, the present reality is troubling and regressive. The patient voice – slowly getting louder in the life before COVID – has been shut out of the health conversation at the time we need it most. We must quickly release it from quarantine.

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The importance of patient involvement is well understood by pharma, with the industry increasingly looking to patients to guide its thinking. When lockdown came, companies recognised the threat it posed to patient engagement, particularly in key areas like clinical trials or access to HCPs. They quickly developed ways of ensuring trials could proceed virtually (where possible), and used similar means to connect patients and clinicians with helpful services and information. Pharma saw COVID as a business crisis – and it acted accordingly. Sadly, the same can’t be said of our health systems. There, patient engagement was one of the earliest casualties of COVID.

The headline responses were telling; national COVID policies were designed with no advice from patients; hospitals and primary care providers immediately suspended patient advisory boards; local policymakers did not seek patient inputs when reorganising services, whether that was planning for the long-term or managing immediate challenges around capacity and demand. In short, the patient voice was put in isolation.

The early caution was understandable. At the time, the pathology of the virus and the health risks it presented was unknown. However, as we’ve seen elsewhere, mechanisms for virtual engagement were readily available. Health systems’ failure to use them to seek patient input at a time of crisis sends a worrying message. It’s entirely at odds with the principles of shared decision-making and patient-centred care.

Fundamentally, the value of patient insight is significant. Input from a patient, carer or the lay public gives providers and policymakers an alternative perspective that might be difficult to see from inside the walls of a healthcare silo. Crucially, it can help them find solutions to problems they never knew existed. Put simply: the patient voice is important – putting it on mute, whatever the context, is foolish.

The impact goes way beyond the virus. In the same way that COVID is a chronic, systemic disease, lack of patient engagement affects the whole system too – and it could have chronic implications for the treatment and management of any disease. We all know that health systems are bracing themselves for a surge in demand from people who went undiagnosed or untreated during lockdown. While the impact on health outcomes will likely be pronounced, the protracted absence of patient involvement across all aspects of healthcare will have equally serious consequences.

It’s now more than 18 months since COVID surfaced, but despite advances in our management of the pandemic, the patient voice remains silenced. It cannot go on.

We’re in danger of squandering the gains we’ve made on the journey to patient-centred healthcare. That journey still has some way to run. Ultimately, patients want to be equal partners – co-creators – in the health conversation. When COVID landed they’d still not progressed beyond ‘external advisors’ – and even then their scope was limited, with patient advisory committees often working in isolation, their perspectives not part of decision-making processes. Unfortunately, the pandemic has only taken us backwards. We need to look forward again.

If we’re going to realise the value of patient-centred healthcare, policymakers and providers need to work much harder to partner with patients. The challenge is to adopt a consumer mindset. Big brands like Pepsi and Amazon won’t take one step forward without consulting their customers, so why should healthcare be any different? This is the model to which we must aspire. To get there, decision-makers at the very top of organisations – including those in pharma – should review their operations and ask themselves some simple questions:

• Are there patients on your steering committees?
• Do your advisory boards work in isolation?
• Is there a meaningful feedback loop for all your patient engagement?
• Are patients consulted/represented at every stage in the development/design of services/solutions?

Honest answers to these questions should help inspire the roadmap to more patient-centred healthcare.

Organisations like the Patients Association and EUPATI (the European Patients’ Academy on Therapeutic Innovation) continue to do great work to champion the patient voice. Their programmes – developed in collaboration with diverse stakeholders from across the health ecosystem – focus on maximising patient partnerships in the design and delivery of healthcare services. They’re the epitome of shared decision-making and part of a determined effort to establish patients as co-creators of the healthcare services of tomorrow. Several patient groups are demanding this equal partnership.

That’s where health should be heading – a collaborative journey where patients are empowered to help plan out the route. If want to reach the utopia of patient-centric healthcare, we must bring the patient voice out of isolation – and work together in partnership to co-create better health solutions.

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We’re delighted that Ankita Batla will be speaking on the “Waiting Patiently” session at Pharma Integrates 2021 on 16th November

Decisions about us, without us: why we can’t allow COVID to derail progress towards patient-centred healthcare