When living with a rare condition, it can be very easy to never meet another person with the same co…
There is a lot of energy and enthusiasm for involving patients in medicines development – but patients need support to get involved. In 2011 we were one of the patient groups that joined a varied mix of organisations across Europe to kick off the EUPATI (European Patients Academy on Therapeutic Innovation) project. Our partners included academics and pharmaceutical companies, and our aim was to make good quality education and training available for patients who wanted to better understand the development of medicines. Patients (and carers, and people from patient organisations) who wanted to go a step further and get actively involved in medicines development would be offered an intensive training programme.
It was an ambitious programme, but four years and a huge amount of time and energy later, EUPATI is now running its 15-month training programme for the second time, with 60 trainees from across Europe – it includes face-to-face training, and supervised online education. Today (27 January 2016), a new online toolbox of information will be launched. Avoiding technical jargon and available in seven European languages, it covers all stages of medicines development from early laboratory research to clinical trials, from licensing decisions and assessment by national health systems.
National teams have been set up to help patients to engage with and influence medicines development: they are talking with national medicines agencies (the bodies that assess medicines for use in individual countries) to encourage more patient engagement, plus government departments, universities and pharmaceutical companies. They have run many activities such as webinars, information days and social media campaigns. The UK’s national team can be followed on their website and on twitter by following @EUPATI_UK.
The EUPATI partners are also producing an array of materials to further support patients getting involved: three webinars have been run covering patient engagement in clinical research, ethical review and health technology assessment (the recordings are available online); guidelines for patient involvement are being developed; and recently the team has published several academic articles about the views of patients and of pharmaceutical professionals and how they see the future of patient engagement.
The EUPATI project is proving to be hugely positive for patients and is creating a buzz: our focus now is to develop a way to sustain the training and education beyond 2016, so we that can continue to support patients and ensure they have a voice in medicines development.