‘What If?’ Poetry as a platform for the patient voice

Patient centricity has been a key focus for pharma in 2023. However, extending beyond the merely discursive topic into sustained and tangible action at scale has been somewhat limited. This year, Sanofi – in conjunction with the release of its ‘What If?’ report – ran a poetry competition for patients: it asked those going through the healthcare system what they would say if they knew that their voice would be heard, and to share that through poetry.

Held at London’s Battersea Arts Centre on 5th October, Sanofi’s ‘What If?’ People’s Poem event coincided with National Poetry Day. The campaign is about asking questions and being curious about the self and others, as Sanofi UKIE’s country lead, Jessamy Baird, told the audience in her welcoming remarks. What unites us all in our journeys is, after all, health, but everyone’s journey is different and varied. So it is that Sanofi wanted to hear from that wide spectrum of patients, their families, and carers.

Serving diverse communities, serving humanity

Image credit: Edwardx, CC BY-SA 3.0 <https://creativecommons.org/licenses/by-sa/3.0>, via Wikimedia Commons

The Battersea Arts Centre (BAC) was an inspirational choice of venue for this linguistic endeavour. Amy Vaughan, executive director and deputy CEO of BAC, explained how it represents inclusivity and accessibility for people, ensuring a sense of community, all of which Sanofi itself strives to serve.

Indeed, wandering through the corridors of BAC, it soon becomes clear that it is a place that brings people from far and wide together – incredibly appropriate for the ‘What If?’ campaign.

During the pandemic, culture had been shut away for many people, and it was the Arts – poetry and painting and a multitude of avenues of creativity – that brought a sense of relief to many when they felt fear or isolation. There is a power in art that goes to the very core of people.

So, while you might very well ask, ‘Why poetry?’, in short, it is because of the humanity of the art form. As Baird explained, a scientist or organisation reads words on a page and sees a condition. A poem, by contrast, is evocative: it evokes the true experience of the human patient, and brings that person to the fore.

A spoken word artist and the benefits of actively listening

In total, Sanofi received 149 entries, and they tasked the difficult job of going through them all to their elected ‘People’s Poet’, Jaspreet Kaur, a spoken word artist from East London focussed on gender issues, historical topics, taboo subjects, and positive social change in both the Asian community and wider society.

Invited to the stage by Clara Bentham, Sanofi UKIE’s head of corporate affairs, Kaur – previously a secondary school history and sociology teacher – has suffered her own mental health issues and has been in the position of ‘patient’ as a birthing mother. Channelling her own experiences and harnessing the spirit of the 149 poems, she was asked by Sanofi to create a new poem that referenced them all, spilling the ‘chaos and confusion held inside’ onto the page, and voicing that to be heard in performance.

But, that necessary platform briefly set aside, how can healthy people benefit from poetry? In 2018, Kaur was involved with the Arts and Wellbeing Foundation, looking at how creative art forms can impact mental health. Within six weeks of one of its workshops running, every single participant had significantly decreased the symptoms of either their anxiety or depression: the potential benefit to mental health services, the costs that could be saved, are clear, she said.

Collective community responsibility and the issue of trust

Most of the entrants to Sanofi’s ‘What If?’ poetry call had never before written a poem. Common themes to submissions included community – especially the collective community responsibility to care for one another, whether in homes, families, or locally – and that more cultural sensitivity is needed in health services, as well as the rather large issue of trust in the healthcare system at all.

This latter point, in particular, Sanofi has been working on both in the UK and globally. The ‘What If?’ campaign aims to give people a voice, as well as a sense of curiosity and the power to ask questions – and be heard.

And what was literally heard during the evening were four standout poems, with introductory remarks from their writers, as well as Kaur’s thematic collation piece.

Patient poesy: Self-knowledge and empowerment

Debra Dulake read aloud ‘All About Me’, centred on a patient form devised in hospitals in Nottingham to make sure patients don’t have to keep repeating themselves. Asking, “What if my health was all about me?”, Dulake’s refrain – “I know about me” – provided poignant structure to verse seeking “the care and compassion that seems to be going out of fashion”.

On Dulake’s poem, Bentham later commented: “It was about something so unbelievably simple, yet so blatantly obvious. We depersonalise people, don’t we, in the healthcare system? What she was saying at its essence is ‘I am a person’, and ‘care about me’ – don’t just care about my symptoms and the theoretical, the scientific around my disease area’. Actually think about me as a person, and don’t make me have to keep repeating myself and saying things over and over again.”

Next, Heather Speake recited from memory ‘Monster’. Truly excellent in content and delivery, the performance was made all the more astounding given that, just over four weeks ago, she had had her left kidney removed. The preparation for the Sanofi event, she said, had been perhaps even more nerve-wracking than the operation.

Yet, the poem was, rather, about how, three years ago, she’d had a retinal transient ischemic attack (TIA) – a mini-stroke to the back of her left eye. Added to that, she had entered perimenopause. Everything combined led to her losing her job, and she fell into a dark depression. Speake gained weight and felt, she said, shame and embarrassment, which only exacerbated the problem. What was left was “someone else in the mirror – a monster, right?”, and her poem reminded us that “depression comes in many guises, and in many sizes.”

Kathryn Anna Marshall’s powerful ‘If my body were a basket’ was delivered by recorded video, as Marshall was unable to journey to London due to her myalgic encephalomyelitis (ME) symptoms. To live with such an illness, she explained, if to live a life of bewilderment and frustration, and she’s coped with that for a decade now. However, she can live a measured and reasonably fulfilling life; yet, one losing 130 to 150 days each year to ME. As her poem described, such an existence is to be “like a willow: flexible, extra strong; weeping comes for free”.

Tori Pearmain’s ‘Gold’ described her experience with hypothyroidism, IBS, and endometriosis. Based on the Japanese art of kintsugi – where a potter mixes glue and gold paint and puts smashed or broken ceramics back together with golden fracture lines of beauty – there are, she said, a lot of parallels with that craft to living life with an illness. Indeed, Pearmain explained that she sometimes wishes her symptoms were visible, like the gold cracks, as it would make things easier as a patient. Nonetheless, she also added that patient communities have welcomed her with open arms, containing the most empathetic and resilient people she’s ever met. After all, for a patient, as the poem reads, “My cracks are me”.

Voices of experiential expression: Wanting to be part of the whole

Also heard during the evening was Bob Stevens, CEO of the MPS Society, a 1982-founded charity focussed on Mucopolysaccharide (MPS), Fabry, and related disorders. Himself a rare disease dad, Stevens explained that a rare disease life can be a lonely life, so their work is to listen to and walk alongside the patient community. Reflecting on Sanofi’s ‘What If?’ campaign, Stevens told of how privileged he felt to see how art, poetry, unlocks the soul, enabling those who have been on a very difficult journey to express themselves in a beautiful way.

The message it sends out, he said, is one of wanting to be part of the whole. In this sense, ‘What If?’ becomes a call to challenge the way things stand and not accept the world as it is, but to craft it into something better – for all.

And so, to Kaur’s ‘What If?’ People’s Poem. Drawing on the entries in their entirety, kintsugi began its discourse, focussing on the cracks, “a new life restored in palms that cared”. With queries on love and how never to give up, it asked if there is “a sense of honour in the damage”. For, indeed, there is yet “a peace in fragility”. At the same time – and poignantly – to live with an illness is often “an abyss filled with what ifs”.

Overall, though, Kaur’s poem continued that the experience of a patient comes down to survival: “Ashes to ashes and dust to dust, we have to find a sense of trust”. Additionally, it must be remembered that these people’s destinies are “not diminished by a doctor’s diagnosis”. And, as the evening made clear, “healing [is] a collective responsibility”.

The heart of the matter: Listening to the patient voice

Speaking with Bentham afterwards, Sanofi’s head of corporate affairs told pharmaphorum: “All of us who work in the pharmaceutical industry do so because we are purpose-driven and want to help people to live better and healthier lives. It is therefore really important that we take time out on a regular basis, whatever our role, to listen to the patient voice to ensure that the wants, needs, and hopes of patients are truly reflected in the work we do.”

“The patient is absolutely at the heart of everything that we do as an organisation,” Bentham explained. “Our purpose is to chase the miracles of science in order to improve the lives of patients. At the moment, in the UK, the external environment is very, very challenging, which means that health outcomes are not as good in the UK as they are in other countries, and the inward investment from the life sciences industry isn’t as strong. We tried to think, how can we pull together all of these different elements?”

So it was that the concept of ‘What If?’ was born, focussed on instilling a sense of curiosity to ask the really big questions about how the health and wealth of the nation can be improved.

“We also wanted to really reflect the patient voice, because it’s one thing to talk about what governments, healthcare professionals, the NHS, et cetera, can do to come up with solutions to problems,” Bentham said, “but how can we engender trust in the healthcare system if we’re not actually listening to the people who are using the healthcare system and benefit from the medicines that we produce and develop?”

“That’s how we came up with the idea of the People’s Poem,” she explained. “We really wanted to harness that kind of power of poetry to really listen to people’s own very personal experiences.”

Sanofi has turned to the Arts before to support the patient voice in being heard: back in February, to mark Rare Disease Day, Sanofi collaborated with rare disease patients and charities to launch This is Rare, a campaign that puts the voices of the rare disease community centre stage, calling for greater recognition, awareness, and advocacy for the 1 in 17 people affected by rare disease in the UK.

“There’s something really powerful about all of the creative arts,” Bentham concluded. “[They] just get to that raw emotion. I think it opens people up to feelings that they maybe are suppressing or perhaps aren’t able to articulate in any other way and certainly aren’t able to articulate when they either go to a healthcare professional or talk to people from the pharmaceutical industry. There’s always a little bit of a barrier.”

So it is that Sanofi has asked ‘What If’ those barriers can be broken down, and the people have answered with poetry providing power to their voice. The beating heart of the patient has been laid bare: can you hear it?

Nicole Raleigh, Web Editor

Nicole Raleigh is pharmaphorum’s web editor. Transitioning to the healthcare sector in the last few years, she is an experienced media and communications professional who has worked in print and digital for over 18 years.

Don’t miss your complimentary subscription to Deep Dive and our newsletter