Words by Louise Rogers
Batman without Robin, a mariachi band without their guitars, gin without the tonic, concepts that just don’t work without one the other. It’s no revelation that without collaborating with its patients, pharma would struggle to create novel and meaningful solutions; a time without those partnerships seems unthinkable, almost forgotten. But with the industry always aiming to go further beyond the medicine, what more can be done to truly hear the patients’ voice?
“I’ve found the most useful collaborations to be where pharma have created platforms for patients to share their stories”, says Trishna Bharadia, writer, speaker, and patient advocate on chronic illness and multiple sclerosis (MS). She explains how speaking to patients is something that needs to be done more, sharing her experience of meeting plenty of professionals in pharma who have never actually met a patient from the disease area they work in. “Creating patient engagement opportunities, through roundtables, focus groups, and patient platforms helps pharma to understand what services and treatments are needed, and why patients make the decisions that they do.”
Patient centricity can’t just be pasted on. It needs to run through everything pharma does and every decision they make
On World MS Day 2018, Merck KGaA launched their #MSInsideOut campaign, an initiative aimed at providing a deeper understanding of MS. Alongside their responsibility to patients, Merck realised their duty to the carers of individuals living with MS and launched the global ‘Living with Multiple Sclerosis: the carer’s perspective’ report. “These individuals are rarely acknowledged officially, and this multi-year initiative seeks to drive substantive change for them”, says Vanessa Pott, Director, Patient Advocacy and Strategic Partnerships, Merck KGaA. “It explores the experiences of >1,000 MS carers and sheds new light on the impact of caring on physical and emotional health, finances, and employment.”
As the bond deepens between the two, patients also begin to have higher expectations. “I, myself, used to be dazzled by a pharma company that asked me to speak at their event. Now I’m more impressed by them knowing my condition well enough to have booked me a taxi home”, says Emma Lawton, Digital Strategist and person living with Parkinson’s. “Patient centricity can’t just be pasted on. It needs to run through everything pharma does and every decision they make.” Emma’s experiences recognise that to nurture the relationship, pharma needs to make sure they don’t treat patients as a single homogenous group. The task at hand? To understand each individual and what aside from their condition impacts their day-to-day life.
In order for the honest conversations and organic relationships to develop, trust must be present. But what does trust really mean to those in front of the medicines?
“A reputable brand is about how a company treats the patients they engage with”, says Bharadia. “Patient advocates – we talk about which companies are treating patients with the respect due to them for their skills, experience, and expertise. For example, I’m a writer who happens to have MS – not someone with MS who happens to be able to write. There’s a big difference!”
I’ll always value the word of my fellow patients and if they trust you, then I trust you
“Engaging directly with the patient community is the way forward”, shares Pott. “Patient centricity is often understood as keeping the patient in mind when designing a service or solution. Inspired by the ‘nothing about us, without us’ mantra, we take a more impact-orientated approach.” This is represented in Merck’s documentary ‘Seeing MS from the Inside Out’. “It depicts the real-life experiences of people from across the MS patient community. The findings from the carer survey and documentary initiative should encourage the MS community to identify ways in which they can better understand and assist both MS carers and patients.”
It seems as well as building a relationship with the individual, there is a place to be earned within the patient community, a place that is reserved for those companies whose intentions are clear. “Word travels fast between patients and what really makes ears prick up is ‘I’ve just been in a 2-day patient workshop with X pharma company’ or ‘I’m working with Y pharma company on this’”, explains Lawton.
But unlike most memberships, this one cannot be bought, but must be deserved through pharma’s holistic understanding of someone’s life. “Ultimately, I’ll always value the word of my fellow patients and if they trust you, then I trust you”, concludes Lawton.