European Patients’ Rights Conference – The role of citizens’ organizations in the empowerment of patients with chronic diseases

Patient organizations from 33 different countries assembled in Brussels on May 12 and 13th for the 8th annual European Patients’ Rights conference to discuss among other things the significant role patients can and should play to support the development of innovative treatments that prevent, manage and cure disease.

The key themes that arose from the discussion about innovation were trust, collaboration, and communication.

Trust – is an important asset that patient organizations manage. Trust has been lost among many groups, but the public and government trust patient organizations. It is crucial for effective allocation of research assets to build trust among all the stakeholders; it starts with open communication and sharing of information.

Collaboration – it is imperative for patient organizations to strategically align themselves and to speak to policy makers with one voice about their goals and objectives. It is also essential for researchers to work with patients from the outset to understand and address their needs. Patients and researchers can share responsibility for innovation.

Clear communication – Patients must be asked and all their needs must be considered; assumptions should not be made about the needs of patients for treatment, cures and improved quality of life. Research regarding treatment for chronic disease must take a holistic approach to the question of quality of life to include such matters as social issues of exclusion, financial support, the need for care and preparation for death.

The outcome of the event was a Manifesto “Empowered patients are a resource” with a section dedicated to innovation.

Under the heading “innovation”, the draft Manifesto states:

  • Promote and support public and private research for the development of new therapies for chronic patients.

How can this be guaranteed?

  • By developing a clear framework for chronic patient involvement across the range of health research, through the entire cycle of the innovation chain (starting from Health technology assessment);
  • By making the decision and authorisation processes more accessible both at European level through the European Medicine Agency and through the National Medicine Agencies;
  • By developing new and more simplified procedures to obtain the social and economic benefits recognised by law.
Rosemary Colucci's picture

Rosemary Colucci

Rosemary Colucci is a health advocacy consultant in Canada.

... Read more