Patients want to be heard.
Is pharma listening?

A common theme heard from the advocacy groups AXON works with is “Nothing for us without us,” says Natalie Turner, director at AXON, a global healthcare communications agency. Patients want to be part of the healthcare conversation and genuinely heard by those who make the final decisions, but pharma does not always understand how to connect with patients.
“A lot of pharmaceutical companies are trying to get their heads around how to include patients in the conversation,” says Natalie. “The idea of collaboration and co-creation is at the heart of how AXON builds communities, and how we bring communities together.”

AXON works with both the patient community and pharma to improve healthcare outcomes. They introduce companies to the advocacy groups where they’ve built valuable and meaningful relationships while focusing on putting patients first. They also help to build broader coalitions, garner insights about the patient and caregiver journey, deliver awareness campaigns and support access.

Natalie says companies should embrace collaboration and co-creation to understand the patient journey thoroughly and ensure patients are provided with what they need instead of what companies think they need.

But, from her experience, pharma often doesn’t know how to connect with patients and caregivers to build those relationships, and missed opportunities for improving health outcomes can occur.

The strength of collaboration and co-creation

Developing an open line of communication with the patient community and hearing patients’ stories can provide pharma with the guidance on how to truly put patients’ needs first.
“We encourage our clients to think differently and understand the benefits of working collaboratively. That’s where it was born for us, this idea of co-creation, but putting it into practice is quite challenging,” says Natalie.

Creating those collaborative relationships can be tricky as some advocacy groups are not inclined to work with external partners.

“It’s often about matching personalities and testing the comfort zone of an advocacy group and then matching that with the comfort zone of our clients and where they’re at,” Natalie states.

“Ultimately, we know collaboration leads to a positive impact on patient health outcomes. That’s actually what a lot of people forget. There’s a patient story. There’s a real person.”

Forming connections with patients is vital, but knowing how to talk to them is equally crucial. Patients do not respond well to what they see as industry jargon.

For example, the term patient-centricity has been a buzzword that many patient advocacy groups say is just a label.

“In a survey we conducted of 22 advocacy groups regarding the term patient-centricity, many groups said companies declare they are patient-centric, but in reality, many are not,” says Natalie. “Pharma needs to be seen as being patient-centric, so they talk about it, but when pressed for examples, many pharmaceutical companies struggled to define it.”

Being aware of patient needs and working collaboratively with advocacy groups to improve the patient experience will automatically generate “patient-centric” outcomes. Creating the perception of being “patient-centric” would, therefore, be unnecessary.

“We want to empower everyone we work with to consider the patient perspective. Ultimately, that leads to a deeper understanding of patients’ needs, hopes for the future, and what their expectations are around the condition or disease they are living with.”

Patients are the primary focus

Although both pharma companies and patient advocacy groups aim to improve patients’ quality of life, achieving that complex objective can be difficult.

Natalie says AXON starts with what they internally call PATH – Patients at the Heart.

“It’s an ideology, an ethos, and a process. We explain to clients that whilst we’re happy to deliver a project or help them explore an idea, our position is always – it’s about the patients.”

Still, not every patient has the same needs. Gathering multiple patient perspectives allows companies to understand a common thread in patients’ treatment needs and individual needs. In some instances, the caregiver insight is as important to consider.

“Regardless of which perspective we’re coming from, the best place to start is by talking to patient communities,” says Natalie. “Doing a lot of questioning and heavy-duty listening to immerse ourselves in their world.”

When working with pharma clients, AXON may suggest the need for the company to engage with a specific patient community to gain valuable insights.

“Ideas are brought forth, we share those ideas, and we run things by the patient community. When we do so, we often end up with the right result or the right approach because we listened and asked the right questions from the beginning.”

AXON also uses scientific methods to collect analytical views. They combine face-to-face interactions with ethnographic research and work with sociologists and anthropologists who analyse the data.

“Our sister agency Madano has a superb insights and intelligence team, and they do the ethnographic socioeconomic deep dive to understand and analyse, for example, what’s being said in many different patient community settings,” Natalie states.

The analytics and insights help identify underserved and underrepresented populations and determines who we can help and where the most significant impact can occur in the quickest possible way.

AXON’s work with communities and partners

Natalie says that working directly with underrepresented groups means a lot to AXON because it touches on so many parts of the work the agency team likes to get involved in.

For example, a leading African women-led organisation working to end violence against women and girls, approached AXON to assist with sharing the results of its latest research completed in partnership with an academic institution.

The report documented how the stringent, targeted, female genital mutilation (FGM) safeguarding measures introduced since the 2014 Girl Summit are causing distress and mistrust amongst African diaspora communities in Bristol.

“The research revealed first-hand experiences of how FGM safeguarding policies are leaving families feeling racially profiled, criminalised and stigmatised, sadly undermining some of the incredible efforts and great work in the community,” Natalie states.

“We helped the charity tell their story and proposed a series of recommendations that supported an inclusive and passionate narrative around FGM.  We planned and executed a social media campaign, working with influential individuals who are vocal in the areas aligned with the story. The campaign inspired a sense of urgency and action and generated great coverage and exposure for our client”

AXON was also approached by a pharmaceutical company that wished to better understand the day-to-day experiences of people living with a specific visual impairment, before embarking on any work to support this community.

Fifteen leaders in various roles from different advocacy groups were brought together – representing blind, partially sighted, normal sighted, and caregivers of the visually impaired – and asked to set the agenda.

“It was beautiful because the pharmaceutical company went in with no agenda; they just wanted to learn. They wanted to know what it was like living with a particular eye disease where no cure or current treatment exists,” Natalie says.

AXON not only connects companies with patient advocacy groups they also work to raise awareness of detecting diseases.

Spearheaded by an annual awareness week, the Make Sense campaign, initiated by the European Head and Neck Society (EHNS), aims to raise awareness of head and neck cancer and ultimately improve outcomes for patients with the disease. As campaign secretariat, AXON drives activities that promote education on risk factors, disease prevention and disease signs and symptoms for both patients and healthcare professionals. The campaign has also evolved to support patients’ needs and highlight their lived experiences as well as urge policy makers to support access to treatments.

The programmes AXON works on are a small part of the overall plan to ensure patients are always at the centre of the healthcare discussion.

Understanding what it’s like to be a patient with a particular disease to ensure the availability of the best possible treatment options means including patients in the conversation.

“Talk to people how you would want people to speak to you. It’s as simple as that.” Natalie emphasises. “It’s having respect and earning the right to ask the questions and then be absolutely sure you listen properly to the answer.”

About the interviewee

Nat Turner

Natalie Turner, director at AXON, has 22 years’ experience in the pharmaceutical and healthcare industry in a variety of roles including: product launch and life-cycle management, media strategist, directing patient-focused communication programmes, internal training and patient advocacy group relationship development, and working with not-for-profit organisations.

About AXON


AXON is a global healthcare communications firm that ignites change in healthcare. In its 20th year of developing insights-led healthcare strategy and communications activities, AXON is passionate about making a difference. We believe that at the core of every complex scientific and medical challenge​ there is a simple, compelling story to be told​. By harnessing insights and using storytelling approaches, we can drive behavioural change and improve healthcare outcomes.

The AXON team are a passionate, smart, and curious bunch, who love learning and delivering beyond expectations. As a firm, we shake things up, interrupt the norm and explore new ways of working for the best results.

We don’t take anything for granted. Instead, we use data, patient insights, and evidence from the real world to inform strategic and impactful communications.

Delivering life-changing communications demands new ways of thinking and doing, to ensure we’re creating meaningful changes in healthcare. And that’s what gets us out of bed in the morning.

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