Lisa Power, a consultant with the European Aids Treatment Group, explores how European organisations can support wider geographical diversity in patient engagement

Patient advocacy groups and those seeking to include patient stakeholders in dialogue are increasingly working across the whole of Europe and often Central Asia too. They understand that if they hope to meet the needs of the whole of Europe, they need to engage and support patients across the continent. 

Populations, economic and social conditions and health systems all vary greatly, and consequently, many have found challenges in doing this. 

Aisuluu Bolotbaeva, Director of the Central Asian HIV Foundation, says that sometimes it’s as simple as needing to understand communication difficulties. “Kyrgyzstan is a five hour time difference with Brussels – think of it like you’re working with people in New York.”

She also points out that flights to participate in Western events are expensive and often at inconvenient times needing overnight stays, effectively discouraging people who have the least resources. Initially, she struggled to engage with European organisations until someone singled her out for an invitation and mentored her involvement in meetings. She is now a volunteer Director of the European AIDS Treatment Group (EATG), bringing a Central Asian perspective to their Europe-wide work. 

Maka Gogia of the Georgian Harm Reduction Programme, also a Director of EATG, had similar experiences. She says it’s important for patient activists and NGOs from the western countries to reach out to the people who do make contact and encourage them. “Connect with us and help us to do well at home too. We need help to build up patient networks within our own countries. Some of us don’t have the history of patient self-organising that other countries do – inspire us”. 

Both are clear that producing materials in Russian is a vital step for any organisation seeking to engage with Eastern European patient voices. “Just as people mostly have English as a first or second language in the West, we mostly have Russian as a first or second language in the East,” says Maka. Aisuluu promotes the benefits of offering training in advocacy skills and scientific or clinical issues to emerging patient voices from the East. “If you can’t organise a whole training event, at least offer some scholarships to your events and make sure you have a translator, if they don’t have good English. Don’t let doctors, who can often travel more, always speak for patients at your conferences – support them to pass their experiences on and to bring interested patients with them to future events. Spread the learning”.

Alex Schneider of Life4Me+, a health website and app which tackles blood borne-viruses and TB, understands both sides. Born in Russia, he moved to Germany and now works across Europe with an emphasis on including Russian speaking countries. He agrees that Eastern European patient voices can be hard to find. “There’s little heritage of activism in the ex-Soviet Union countries, though younger generations are changing that. There’s also a lot of social pressure to conform and health conditions are often stigmatised, making it harder to speak up”. He also points out that Eastern European countries often face very different problems, which Western-based organisations may overlook. “When I came to HIV activism, the Westerners were all talking about research, but for us, in the East, our biggest issue is securing access to existing drugs. You need to ask people what their needs are and include them.” 

In response to these needs, EATG splits its annual Step Up training modules into two sets: English and Russian-speaking. While much of the basic programme is the same, speakers and participants have the chance to address different priorities and political realities. This has led to a much higher level of active membership from Central and Eastern Europe and Central Asia, with a Board of Directors from Portugal to Kyrgyzstan. All-Europe meetings are regularly held in Kiev or Sofia, as well as Brussels.

While finding and supporting patient voices from Eastern Europe and Central Asia may not be easy, organisations are finding ways to do it. That includes making materials in Russian as well as Western languages; supporting emerging activists in their own country and abroad with training and scholarships; ensuring genuine activists are invited to events and mentored. Above all, it means listening to the diverse needs and situations facing countries often with very different healthcare systems.