Grassroots campaigners paved the way for the modern patient advocacy movement, which is becoming increasingly sophisticated
"...this was actually the model that we always wanted to implement outside of the HIV community as well."
If patients are to be involved in medicine R&D, it’s to everyone’s benefit that they understand how the process works. Tamás Bereczky is a course coordinator for the IMI-funded EUPATI, an “academy” that helps turn patients into patient experts, so that they can contribute as equals to the drug development process. He is a vocal campaigner for the rights of people living with HIV/AIDS.
“The tradition of patient involvement in science and research and development originates to a large extent from the HIV tradition and to some extent, breast cancer. These are the two pioneering fields where this kind of work started.” For campaigners like Tamás, patient experts is not really a novel concept at all. “It wasn't very pioneering for us living with HIV because we've been doing this kind of work for almost 30 years – and this was actually the model that we always wanted to implement outside of the HIV community as well.” EUPATI, he says, was a major step forward at the time it was launched in 2012. It builds on a legacy of engagement that only goes back about three or four decades, when people living with HIV/AIDS kick-started a push for better treatments and more money for research to understand the disease.
Patients are getting professional
Patient advocates come in all different shapes: they might be peer educators, networks of people living with a disease or condition, their family members, counsellors, community health workers, door-to-door service providers, civil society organisations and grass-roots activists like Tamás. The Patients’ Academy can be seen as evidence of the increasing importance placed on their participation in drug development.
“EUPATI was the first project where IMI consciously did something with patients, for patients. It's not about medicine development or technology, it is specifically for patient education in a public private partnership form, which at the time was very new.” The patients are on equal footing with other EUPATI stakeholders: “On the EUPATI website, there are more than 3,000 pieces of information about medicine development and research. It’s a massive collection of educational materials and all of it was developed together with patients. At every stage of content production and quality assurance patients are structurally involved.”
“These patients are speakers and lecturers - they do the exact same kind of activities as any other stakeholder - and that was a pioneering step at a time.”
EUPATI has enjoyed success, with 154 graduates, several courses per year for patients, industry and academia representatives, and expansion into 19 countries. The website, which hosts the open access Toolbox on Medicine Development has had 3.2 million individual visitors in just 3 years. “It has proven to be a workable concept or a workable framework for not just patient involvement, but for involving all stakeholders on a relatively equal footing.”
“I suddenly realised that there was no information out there”
The EUPATI goal is twofold: to give people the capacity to contribute to medicine R&D, and to make sure that there is reliable – and comprehensible – information out there for others. “When I got diagnosed with HIV about 15 years ago I got very scared, and I suddenly realised that there wasn't any information available in my native Hungarian. So I started by translating stuff and publishing it on my blog and then I made a website…”
“Step by step I became an advocate; I realised that this is actually my calling. I really wanted to help other people not to contract HIV like I did; I contracted HIV because I was stupid. So I started by disseminating information and then I became a member of the European Aids Treatment Group and then one thing followed the other.”
The lack of information is striking, even now, he says. “People don't even know that you can take drugs now that give zero chance of passing on HIV.”
Tamás Bereczky is course coordinator and communications officer at EUPATI. He has a PhD in the social psychology of patient advocacy.