Introducing Voices of Sarcoma: Let Your Voice Be Heard

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Thirteen years ago, a handful of people touched by sarcoma were united by a common aim: to bring together sarcoma patient groups and enable them to express a collective voice in the healthcare world. Sarcoma Patients Euronet (SPAEN) was born.

While we started small, with only 11 groups, today we number over 50. Yet there are still many corners of the world where the sarcoma patient voice is not heard at all.

Our change of name to Sarcoma Patient Advocacy Global Network (SPAGN, pronounced SPAN) comes as we enter our teenage years -- and just as any teenager starts to do things they have never done before, so will we.

For one thing, our new website should be simpler to find your way around. This section, our blog, is new. This blog aims to strengthen the global sarcoma community by giving the many voices of sarcoma a chance to be heard. We hope our member organisations and their members will gain benefit from it and see it as an opportunity to contribute as well. Voices of Sarcoma is for everyone to read and contribute to. Link to it on your website, let others know about it, and write to us.

We All Do Advocacy Differently

Advocacy is a challenging thing to take on. We all do it when we represent our organisations, our members and our patients. However, each member organisation acts nationally and will set priorities in order to meet the needs of its own patients in its own country. We are very aware that countries do things differently, that our sarcoma groups have different structures, that many have a focus on a subset of the sarcoma family of diseases or are regional and not national in their reach.

Your organisation might have a strong focus on campaigning, looking to create a specific change of some kind. Or your focus might be on providing support and advice to all patients or giving immediate help to someone or some group in need, raising awareness or fund-raising for a particular purpose. You may be doing all these things and more.

Some advocacy work is quieter and more in the background. It is about engaging influential stakeholders in your work, having conversations with them about your aims and ambitions, persuading them first to listen to you and then to act for you or with you. When you are a campaigner, you may carry a banner, but when you are an advocate, you talk, and you listen. You take small, cumulative steps rather than the big jumps which come from national campaigning. For us at SPAGN, this kind of advocacy work is about creating sustainable change deep in the structures of international policy, or cross-border research, or multi-national industry behaviour.

We all do advocacy differently, but we can all learn from each other about what we do, how we do it and where we succeed. While we often have similar ambitions, circumstances may dictate that we achieve them differently. However, how others have achieved their objective will always carry valuable lessons.

What is Evidence-Based Advocacy?

An important topic discussed at recent SPAGN conferences has been the development of what is known as “evidence-based advocacy”. This development is being recognised quite widely now. Evidence-based advocacy is when a patient group undertakes its own research. It may be a simple survey, or it may be a more complex exercise in data-gathering and analysis. The results of this research provide evidence which supports the intentions or ambitions which are being pursued in the advocacy work.

The rationale behind evidence-based advocacy is simple: Healthcare organisations and individual providers understand the power of evidence. They seek strong and robust evidence when making decisions about treatments, so it should be no surprise that they find decisions backed by evidence much easier to make than those which have no data supporting them. I feel that this will be a valuable topic for us to explore in Voices of Sarcoma.

Involving Patients at Every Level

Involving patients in the decision-making of healthcare is a subject close to my heart. We are perhaps lucky that in the UK we have a centralised system where political decisions about involving patients were taken many years ago. Patient involvement is now well entrenched in the provision of healthcare and in research. We are now working to have patient involvement more deeply integrated into regulatory affairs, too.

Other nations are heading in the same direction. EORTC is taking steps on a pan-European basis. The key regulators, the FDA in the USA and the EMA in Europe, both have patient involvement in research high on their agenda for applicants wishing to win new licenses. This will open up new opportunities which we must together be aware of and realise for our patients. Sharing news when an involvement opportunity happens may open up opportunities for others, so please tell us when it happens.

Tell Us Your News!

We want to hear news of what our member organisations are doing. It was much easier to keep track when there were fewer of us, but now that our member groups are more numerous, I know there are stories we all want to read about that are not being told, although they could be. Voices of Sarcoma is an opportunity for you to tell those stories.

The story might be very simple: how one patient with a difficult treatment decision to make was helped; how the request to meet a parliamentarian was greeted positively and what happened as a result; how one hospital agreed to carry a research project. The story might be very big and complex: how the national decision on treatment structures has been influenced by patient advocacy; how a major research project happened after patients were involved with the doctors and researchers. You tell us what you have done, and we will carry those stories.

Conveying Clear and Consistent Messages

In the past, SPAEN could be agile because it was small and worked mostly in Europe. As SPAGN, we are now a global organisation, and this brings new challenges for us. We now operate in a world which has been heavily affected by the global pandemic – but less international travel is being compensated for by greater technological capability, opening up new opportunities for us to connect in different ways.

We want to convey clear and consistent messages about sarcoma so that healthcare providers, wherever they are in the world, have no doubt that we are on the side of sarcoma patients.

We can help move things forward by sharing success stories from elsewhere in the world.

Every country and every sarcoma patient group is doing something important -- if we know about it, we can carry that news and spread information about it to where it can have the most impact.

I may be writing this first blog as one of the long-serving members of SPAGN, but I don’t want to be the only author. I want to hear from you, and I know you want to hear from each other. We have set out some basic guidelines which we would ask you to follow as best you can. We have a team of reviewers who will make sure that your story is clearly told, so do not worry too much if your English is not perfect -- we will help. If you want to tell us your news in another language, we will seek the best translation we can and will check that with you.

So please get writing. Make your voice heard.

Author: Roger Wilson, CBE HonMD HonLLD
Honorary President of SPAGN

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