Vasculitis Ireland Awareness: the vital importance of collaboration in driving improvements for the vasculitis community
After being diagnosed with granulomatosis with polyangiitis (GPA) in 2005, Julie Power was eager to connect with others with her disease for mutual support. After years of little luck, Julie founded Vasculitis Ireland Awareness (VIA). From her kitchen table to registered charity, VIA has flourished into a lively organisation supporting Ireland’s vasculitis community with a keen eye on the value of collaboration
Vasculitis Ireland Awareness: its aims and its collaborative ethos
“Our aims are supporting, raising awareness and improving services for people who are living with vasculitis and their caregivers.”
VIA provides current information on vasculitis, including ongoing research and available treatments and helps to assist in research to improve the knowledge of vasculitis in the community and healthcare setting. “We are lucky to have very good vasculitis consultants in the Republic of Ireland. We work closely with them and are involved with several research projects together,” Julie explains.
VIA’s collaborative ethos and mission to drive change together means they are also part of Vasculitis International, with Julie a board member, as well as being vasculitis lead patient representative of the ERN RITA (European Reference Network for Rare Primary Immunodeficiency, AuToinflammatory and Autoimmune Diseases).
Finding commonalities in the patient journey
With the spirit of collaboration in mind, Julie is excited to be embarking on ERN RITA’s Europe-wide project “Patient Journeys” focusing on capturing the vasculitis patient journey. Julie explains that by looking at the patient’s journey and hearing about an individual’s experience, we can get a better idea of what it’s like for those living with this disease.
She says that capturing the patient journey in terms of symptomology, identifying if there is a pattern of when new symptoms occur or existing symptoms worsen, will help determine the natural history of the disease and, in theory, speed up the diagnostic journey.
“We are trying to capture the touch points of what symptoms healthcare professionals will come across and when, to help with diagnosis and also with the management and future planning of care.
“We want to find out what would have made the journey easier at each particular stage. From that we can develop clinical guidelines or care pathways that integrate the patient journey, so that they become richer and more meaningful to the community.”
“For this project to work, we need patients to tell us about their journey.”
Focus group studies are currently taking place for the project, with one complete in Ireland and several more on the cards in other parts of Europe. “We want to get a strong template of what the patient journey would look like—when it comes to cultural differences in Europe, like local health services, adjustments can be made to the template,” Julie says.
One of the challenges in the Europe-wide patient journey project is the language barrier: “There’s no point in just having people that speak English, because otherwise we are missing out on a whole wealth of experience.” Here, Julie recognises a need for additional funding and support so individuals can contribute to research and provide valuable insights, regardless of the language they speak.
The value of such support was demonstrated at the International Patient Conference in Dublin, where presentations were translated—Julie having sourced a translation service for this that would work on the necessary scale: “It wasn’t in our original budget but I felt it was really important.” As a result, people from Europe and Japan were able to attend who wouldn’t otherwise have been able to do so.
The proven benefits of collaboration
Julie explains that having access to Vasculitis International and being part of ERN RITA has opened the door for VIA to be much more involved in research and to have their voices heard.
VIA’s partnerships with these larger organisations proved instrumental in ensuring the vasculitis community was made a priority for vaccination for COVID-19: “When vaccinations were first made available, initially the vasculitis community were graded as very low in terms of priority for receiving the vaccination here in Ireland,” Julie explains, “however, by working with ERN RITA and Vasculitis International and having access to consultants, we were able to make our case that we should have higher priority.”
In light of these proven benefits of collaboration, Julie is excited to see a rapidly increasing number of individuals in the vasculitis community who are eager to work together and participate in research through patient reported outcomes (PROs). She is also pleased at the interest from stakeholders to collaborate.
The promise of collaboration for the future benefit of the community
Julie recognises the powerful effect of collaboration and stresses its importance going forwards:
“At the international ANCA Vasculitis Workshop, there was a sense of real collaboration between different organisations to streamline the information we have on vasculitis so we’re not reinventing the wheel. What we need now is to see this collaboration across research and other stakeholders.
“Over time I have realised a lot of groups are working away but you don’t hear about it, so another group starts on the same thing, but if we collaborate we can avoid mistakes and learn so much from each other.
“We’re all going in the same direction and we all want the same thing. If we could just pool our resources that would make things happen a little bit quicker. For me, linking together and collaborating is the biggest thing.”
The VIA website is a source of information on what is happening in the world of Vasculitis in NI and ROI. This includes some details of the different types of vasculitis, useful links to local organisations and services, and current news on research, service development and meetings.
Telephone (from NI): 075 22932126 or 02844 842889
Telephone (from Eire): 0044 75 22932126 or 04844 842889
UK-NA-2200080 / date of preparation : May 2022