Having a rare disease is difficult. But it’s even worse when the threat is hidden, unseen by the human eye. People with ANCA-associated vasculitis (AAV) may appear healthy but are under attack from their own immune system. With a frequently delayed journey to diagnosis, and a complex, challenging treatment pathway, people with AAV and their carers often feel that insufficient community resources exist.
SEE ME HEAR ME has a goal to empower people living with AAV. Giving patients access to the resources they need to better understand their AAV would help them speak confidently with their healthcare professionals about the course their disease may take.
With the aim to reflect the patient voice and perspective, the content was created by, and for, people living with AAV.
Dijana Krafcsik, External Engagement Director, Orphan Diseases at Vifor Pharma, Jean-Marc Rathé, Senior Director, Havas Life Medicom, and Shanali Perera, a rheumatologist, artist and vasculitis patient, speak about the importance of the initiative, how it came about and the benefits of patient collaboration.
Dijana: The most important thing is putting patients at the centre. At Vifor Pharma, we have created a broad network with the vasculitis community, putting patients at the heart of what we do. It’s only when we understand patients’ needs that we can appropriately address them.
“Putting patients at the heart of what we do.”
Shanali: I first experienced symptoms in 2009, when I was in the second year of my specialist training in rheumatology. I felt like my life was derailed. It was very humbling and a transformative experience for me to end up as a patient in my own specialty of training. I was sub-specializing in vasculitis and seeing the everyday struggles that patients go through. And suddenly I was living it – instead of diagnosing and investigating conditions which seemed to me very ‘black and white’, I was now going through the patient journey myself. This was a reality with many shades of grey.
The shift from clinician, to a person with unexplained symptoms, then to a vasculitis patient was a difficult transition. It took me years to get on top of managing my illness and unfortunately in 2012, I had to give up my career. Art helped me understand what I was going through by giving my illness visibility. It gave me a sense of purpose, helping me to regain some of that control I had lost. Now, my mantra is that I am not the illness – I am a person first. The illness is only part of me, an accessory I wear around me.
“I am not the illness – I am a person first.”
Dijana: We had created the Understand AAV campaign – a digital platform for healthcare professionals. We wanted to collaborate with patient associations, patients and carers, as we know that their needs are different. A separate initiative was needed.
Following some research, we connected very quickly with the patient community. We reached out to Shanali – her experience as a rheumatologist, vasculitis patient and digital artist supported us in collaborating with Pan-EU Patient Associations. We also held individual workshops with patient communities across Europe (pre-COVID) to understand their needs, and jointly created an initiative that would complement the efforts that were already being undertaken by the vasculitis patient association.
We chose to work with Havas Life Medicom as they are an experienced global creative agency who helped us create the Understand AAV campaign, so this was a natural continuation of this important work.
Jean-Marc: The creative insights for the campaign came from patients participating in workshops and, specifically, from Shanali. We identified that there is a crucial need for patients to have more visibility, as people with a rare disease can often feel isolated. The initiative was about giving visibility and voice to patients.
“There is a crucial need for patients to have more visibility.”
Dijana: We wanted to support the AAV community in a meaningful way. We wanted to see what the community is already doing and identify how we can further support patients and carers by providing disease awareness information.
Jean-Marc: It was also important to ensure that patients could easily access content that was of real value to them, and to facilitate sharing of content among the patient associations. This is why the website myANCAvasculitis.com and the materials are available in multiple languages.
Shanali: My art is an honest representation of experience with illness, change and resilience. It helps me to make the invisible visible, which was the heart of this campaign.
The images I created are my interpretations of what my every day is like as a rheumatologist, a contemporary artist and a person with vasculitis. It allows me to give shape and form to the challenges that people with AAV go through and portray their lived experiences. It’s almost as if we’re pulling back the curtains into the invisible world of the patient.
“We’re pulling back the curtains into the invisible world of the patient.”
I use a digital medium as due to my condition, I cannot do repetitive movements with something like a pencil, charcoal, or oil on canvas. So, my condition influences not only what I create, but how I create it.
Dijana: Collaborating with patient associations across Europe was the foundation of the campaign – only by doing this could we produce content that would be meaningful to patients – content they would stand behind and share throughout their network. Even the initial idea ‘Be Seen, Be Heard’ was modified by patients to ‘SEE ME, HEAR’ ME as they felt this resonated more strongly.
Another key consideration is that we have seen an increased need for multiple language offerings among our patient community.
Jean-Marc: Collaboration was key to long-term engagement as well. From our metrics, we can see people are coming to the website and staying for a long time, across all languages. And we’ve seen that when a patient association is active and collaborating with us, they help to increase awareness of the materials by being advocates for the initiative.
Dijana: Feedback we’ve received is that the campaign has helped patients better understand their journey, from diagnosis to treatment, and they are more able to make informed decisions about their care. When we send out materials, patients are often posting to social media saying that they have received information, that they feel empowered and understood.
A wider effect of programmes such as this one, is that resources may be better used if they are aligned with patients’ needs – which is critical for the sustainability of health systems worldwide.
“The campaign has helped patients better understand their journey, from diagnosis to treatment, and they are more able to make informed decisions about their care.”
Shanali: For people living with a rare condition, there’s often a gap in understanding between the person dealing with the illness and the clinician who is looking after them – it’s difficult to truly understand what a patient is going through. SEE ME HEAR ME has helped to bridge that gap in understanding by using art to give visibility and a voice to patients.
From personal experience, having a website with real patient stories with all the positives and negatives of life with a rare condition, information on where to get support, and knowing there is a community to support you, is really comforting.
“SEE ME HEAR ME has helped to bridge that gap of understanding by using art to give visibility and a voice to patients.”
Dijana: The co-creative nature of delivering something that the patient community considers useful and meaningful is most rewarding. The creative concept at the heart of initiative was ‘Art and Voice’ (AAV) which really captures the objective of letting patients be seen and heard. I hope we inspire other organisations to work closely with patient communities and see the value that collaboration has.
Jean-Marc: We are proud of the reach that this campaign has had – not just achieving great metrics – but that we are reaching people who are finding value in what we have created. Collaborating with patients face-to-face before the COVID pandemic was truly rewarding, and the initiative enabled patients to share their stories and experiences with each other as well.
Shanali: I am incredibly proud to be part of a creative initiative that involves patients and carers from across Europe, to help empower them and make their lived experience with AAV, a better one. Contributing and collaborating with the entire team who worked on the campaign, and being able to bring not just my art, but my experience as a clinician, was incredibly empowering.
“I hope we inspire other organisations to work closely with patient communities and see the value that collaboration has.”
– Dijana Krafcsik, Vifor Pharma
“We are reaching people who are finding value in what we have created.”
– Jean-Marc Rathé, Havas Life Medicom
“I am incredibly proud to be part of a creative initiative that involves patients and carers from across Europe.”
– Shanali Perera, artist and rheumatologist living with vasculitis