Framework and rational
The patients' involvement and citizen participation are going to enter in the European Agenda of Health policy. Many studies have been promoted by scientists' society, private company, Public bodies, etc about the necessity of a citizens' engagement in the Health choices. The lack of financial resources and the economic crisis in one side and the growing of Health research and new requirements about diseases' treatments in the other side require different behaviors and innovative model of governance. Despite the studies and the widespread belief about citizens' engagement, there is not a systematic commitment on it at European and Member State level.
The Health Policy Forum policy, promoted by DG Sanco, has listed in its agenda many items on patients' inclusion in Health governance system. At the same time there are EU countries with good participative legislation or positive example of patients' involvement in Health National and local planning, in the management of specific disease, in HTA process, in quality assessing of Health services, in Ethical Committees, etc. It has a great importance the new model of public participation in clinical trials adopted in UK. Essentially this issue is more topical than ever, but has a very difficult implementation path.
The cancer care policies are considered one of the most important topics to discuss about patient involvement in the access to innovation and in the personalized treatments. In many European countries the advocacy of patients association has a strong commitment in introducing their point of view in the HTA and reimbursement policies and in the promotion and management of clinical trials.
The role of Active Citizenship Network
The mission of Active Citizenship Network is twofold: to promote citizens' participation and to protect their rights, especially in Health policies at EU level. This is the reason why we have promoted in 2001 a network of civic associations with the aim to support a patients' rights policy in Europe. The European Patients' rights Charter and the promotion of the European Patients Rights Day are the main initiatives since 2002. In particular ACN have realized two European Assessment on the Patients Rights Charter respect with data collected in 20 European countries.
One of the rights assessed is the active citizens' rights, which mainly concern groups of organized citizens (patients, consumers, advocacy groups, advice-givers, self-help groups, voluntary and grassroots organizations, and etc.). These groups have the unique role of supporting and empowering individuals in the protection of their own rights. These rights are linked to the rights of civic association, contained in article 12, section 1, of the Charter of Fundamental Rights of EU and are:
the right to perform general interest activities;
the right to carry out advocacy activities;
the right to participate in policy-making.
The final results of the 2011 Assessment has presented a picture of a hardly respected right to participate.
The project idea: a commitment to improve patient participation in decision making process, with particular emphasis on policies related to Cancer treatment.
The possibility to improve the active role of patients' and citizens' in Health policies is linked to different needs:
An overview about the situation in Europe (laws, experiences, obstacle, good practices) regarding the main fields of patients' participation (planning, decision making, implementation, assessing, etc.);
The special focus on Cancer Care participative policies, taking into consideration the right to innovation and to personalized treatment statement.
The involvement of the patients' organizations, the public bodies and the other stakeholder for a dialogue and a commitment at National and European level
The project has the goal to implement a participative process where all these needs are included.
Steps of the project
A Report on patients' involvement in Health policies, based on the collection of studies, documents, reports with the aim to present an overview of the situation. The Report will have a special focus on Cancer Care sector, taking into account the right and the access to innovation and the right to personalized treatment.
The celebration of the 7° European Patients Rights Day on 11 April 2013 in Brussels with National citizens' and patients' association (ACN network), European Associations of patients, stakeholder, authorities, press release.
The presentation of the Report
The participation of 3 or 4 European Patients' Association to present their experience on patient involvement with a particular attention to Cancer Care.
Project duration: December 2012-April 2013
For more information, please contact Alessio Terzi:
(Last updated: January 2013)
The start up of the project was supported by