Earlier this year, patient organizations from 33 different countries assembled in Brussels for the 8th annual European Patients’ Rights conference. A feature of this year’s meeting was an engaging discussion on the significant role patients can and should play to support the development of innovative treatments that prevent, manage and cure disease.
Key themes that were raised in discussions included:
Trust is an important asset that patient organizations manage. While trust has been lost among many groups, the public and government trust patient organizations. It is crucial to build trust among all research stakeholders, which starts with open communication and sharing of information.
Collaboration – it is essential for patient organizations to strategically align themselves and to speak to policy makers with one voice about their goals and objectives. It is also important for researchers to work with patients from the outset to better understand and address their needs. Patients and researchers can share responsibility for innovation.
Clear communication – 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 social issues, financial support, need for care and preparation for death.
The participants of the 8th annual European Patients’ Rights conference developed a Manifesto, entitled “Empowered patients are a resource.” Included in the Manifesto is a section on innovation, which 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.