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Finding the Carer’s Voice

Updated: Dec 16, 2019

Words by James Coker

Patient centricity is a principle well and truly embedded in pharma and is surely the industry’s raison d’être; to not proceed with this target in mind would be like playing a football match without a goal to aim at or running a race that has no finishing line. Yet one group of people whose lives are also significantly affected by medical conditions remain on the periphery of this movement. These are informal carers: the mothers, fathers, daughters, sons, and siblings who are given the enormous task of caring for friends and family with diseases – often chronic, sometimes rare – that mean they cannot function alone. Furthermore, this is all in the absence of formal training and is motivated by love. It is important that pharma now includes this group as a major player in its unrelenting focus on patient centricity.

It’s not just bathing, feeding, lifting, caring; it goes much further than that

“It’s not just bathing, feeding, lifting, caring; it goes much further than that”, explains Vanessa Pott, Director, Patient Advocacy and Strategic Partnerships, Merck KGaA. “It’s the additional emotional support and it’s also helping on a day-to-day basis with treatment administration by attending doctors’ appointments and meetings with health authorities and social services; it spans such a broad range, so for us it’s important to realise it is not just the immediate care.”

It is not a huge step in logic to therefore suggest that greater informational support for carers can translate into better outcomes for patients; for instance, in helping caregivers understand how they can improve adherence. However, the lack of involvement carers have in care decisions is stark. “Last year at Merck we partnered with the International Alliance of Carer Organizations (IACO) and did a study together surveying over 1,000 carers in seven countries. And the staggering facts were that a lot of the carers didn’t get any kind of support and felt overlooked and not recognised in their role. And this is not just for the carer’s sake; caring for the carer is for the patient’s sake”, adds Pott.

Lode Dewulf, Chief Patient Officer, Servier, argues that, from pharma’s point of view, there are vast swathes of information waiting to be unlocked by speaking to someone living in such close proximity to a patient. “We had always learned about Parkinson’s disease as just a trembling motor disorder; it was only when we started talking exclusively to carers that we started to understand its huge impact”, says Dewulf, citing a poignant example.

Of all the healthcare stakeholders, pharma has the opportunity to cut the key that opens this door to a more transparent and trusting relationship with carers. “The first thing we need to do is start really listening as an industry and treat the person living with the patient as an equally important source to the person who actually has the disease”, adds Dewulf. “I think we still haven’t really picked it up because we’re still so medical that we focus on the person who actually has the symptoms.”

The first thing we need to do is start really listening as an industry

Recognition and availability to talk should become a major focus for pharma. Carers often simply do not know where to turn for help. This was true of Nicholas Brooke, Founder and Executive Director, The Synergist, when caring for his son with cerebral palsy who then developed epilepsy at the age of 7. “We didn’t know anything about epilepsy at the time and it was extremely difficult to understand the disease and its impact”, Brooke describes.

It was only when Brooke happened to be working with Dewulf on a separate project that things began to change. An initial conversation over coffee set the ball rolling for discussions that provided him with the information he needed to manage his son’s condition better. “It was a real breath of oxygen; we were so stuck with dealing with the condition and trying to find the right treatment that to actually get some explanation from pharma was really unexpected”, says Brooke.

Direct engagement with carers is not necessarily a straightforward process but reaching out to include carers in conversations is a simple yet critical first step that can make a huge difference to patients, as well as benefit the work of pharma at the same time. The definition of patient centricity must therefore be broadened to encompass carers if patients are truly to be at the centre of everything the industry strives for.

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