I’ve always believed in people, in the contribution they can make, both as individuals and as a group. As challenges grow in number and in scale, it becomes increasingly important for us all to work together to build a better future. Nowhere is this more necessary than in the field of public health.
Throughout my career I have been active in human rights, working to support people who make the brave decision to speak up against injustice, corruption and discrimination, first in Uganda and later in the Balkans. I increasingly focused on governance, analysing transparency and accountability of policy and decision-makers and promoting citizen participation in public life. In 2014, I joined a project which at its core champions human rights, but with a new focus – what I like to call ‘patient rights’.
In EUPATI we can get caught up in acronyms, in terminology, in ‘project-speak’. Nonetheless at its most fundamental, our vision can be connected back to rights for patients. The right to be informed, the right to be educated, the right to be involved, the right to be seen as an equal partner. With the right support, patients are empowered to stand up and claim these rights.
Over the past 18 months I’ve been inspired, moved, questioned and (gently!) harassed by patients from countries across Europe about how they can get involved in medicines research and development. Despite limited time and resources, limited energy reserves, and significant personal challenges, patients have come forward in great numbers to upskill themselves and to call for more patient education.
I have been particularly struck by how patient information, education, empowerment, involvement and partnership varies across the countries involved in EUPATI – and what is commonplace for patients in one, may be innovative for patients in another. In producing the EUPATI Patient Expert Training Course and the EUPATI Toolbox on Medicines R&D, we seek to take one more step towards providing all patients with access to the important, objective and scientific information and education they seek on a range of topics related to medicines research and development.
My vision of the future of public health is a collaborative one. A future where patient involvement is not perceived as too costly, too time-consuming, too confusing. A future where patient involvement is meaningful rather than tokenistic. A future where patient involvement is the norm, where there is a real interest in involving the very people for whom medicines are developed. A future where the contribution patients can make is not only recognised but embraced.