The European patient

The founders of the Internet platform ‘patientslikeme.com’ saw the light a full ten years ago: in a modern health system, patients are no longer satisfied with playing the role of the silent sufferer or the humble guinea pig. Developments such as personalised medicine have created a new balance of power in which patients have a say and take part in decision-making. ‘Patients like me’ uses health data sharing to enable patients not only to participate in therapeutic innovations but also to steer them. This can be achieved by using the Internet to bundle interests together, or to create new research approaches such as ‘crowdsourcing’, in which data is compiled by the users.

Now the European Union is going one step further by getting patients more closely involved in clinical research. Under the label ‘Eupati’ (European Patients’ Academy on Therapeutic Innovation), patient organisations in twelve European countries are to be linked and brought together with representatives of industry and academic research institutions. 29 European groups, comprising representatives of patient organisations, non-profit organisations and the most important pharmaceutical companies, have joined forces as a consortium under the auspices of the European Patients’ Forum. “In clinical research, the patient is moving from the periphery to the centre” says Annette Magnin, Managing Director of the Swiss Clinical Trial Organisation (SCTO). The SCTO is currently setting up Eupati in Switzerland, along with the Swiss Positive Council (the organisation representing the interests of people with HIV), the Basel University Hospital and a representative of industry.

The goal of Eupati is to create patient-centric information and to train patient representatives so that they can present the views of those at the ‘receiving end’ during the development of new drugs and therapeutic concepts. This process is running on different levels. Patient ‘experts’ are trained and then pass on their knowledge to the leading representatives of patient organisations, who in turn inform their members. This all occurs in parallel to information being provided on the Internet that is available to everyone.

Critical assessment by laypeople

But just what is being discussed in terms of patients’ ‘needs’? Magnin says that the project isn’t about specific illnesses or therapies, but about topics that concern everyone: personalised medicine, the use and risks of new drugs and the responsibilities and the active roles of patients in clinical studies. “Well-informed patients play a key role when it’s a matter of implementing clinical research strategies, improving approval procedures or optimising treatment pathways”. That’s the basic principle behind Eupati. The whole process is a little reminiscent of the ‘people’s panels’ that were popular in the 1990s. It is perfectly possible that the relevance of clinical studies will be improved if they are subjected to the critical assessment of ordinary people right from the beginning.

For Swiss patients, one fundamental benefit lies in the international network that Eupati offers. “Through Eupati, patient organisations with generally limited resources can get access to the infrastructure and contacts of a European network”, says Magnin. This international access is essential for ‘patient empowerment’ and opens up new opportunities for action.

(From "Horizons" No .101, June 2014)