The commitment against unnecessary pain is going to enter in the European Agenda of Health policy. A lot of data have been collected by scientists' society, private companies and governments, etc. about the diffusion of chronic pain and its societal and economical impact. New laws, as the Italian one, have proposed innovative contents to put in practice.
At the same time the willing of patients' organizations to have an even more active role in the commitment for reducing pain and in the promotion of a new policy on pain relief is growing. Recently, it was founded a new coalition of patients' and citizens' organizations, named PAE (Pain Alliance Europe), with the mission to represent the point of view of patients in the European pain policies.
Despite all this activity, the condition of patients affected of chronic pain is still very serious, as the patients' associations from different European countries can testify. What is affirmed in theory is often denied in practice. This condition requires the promotion of a strong patients-oriented policy against pain.
This is the reason why Patients (Pain Alliance Europe, PAE), Citizens (Active Citizenship Network, ACN) and Industry (Grünenthal GmbH, GRT) will work together in a multi-stakeholder project to:
- become a strong European Pain Patient advocacy group by developing concrete proposals for the improvement of pain management;
- encourage active participation of citizens in European and national public policy-making and the cooperation among a lot of patient organizations, necessary to get heard by the policy makers.
The principal aims of the project are:
- To have chronic pain recognized as a disease in its own rights.
- To create a greater awareness of chronic pain.
- To promote a European policy on chronic pain.
- To reduce the impact of chronic pain on all areas of European society.
The project's steps
1. To write a Report on the Assessment of the EU Patient Right of Avoiding Unnecessary Suffering and Pain
Pain Alliance Europe and Active Citizenship Network with the experiences of the association members are a great wealth of information about the condition of patients with chronic pain. They can record the violation of rights, the lack of fair and accessible treatment and, at the same time, the good practices promoted in the different countries. For this reason the first step of the project will be an assessment work on the respect of unnecessary pain patients' rights in Europe to prepare a Report on the effective enforcement of these rights.
2. To develop of EU Pain Patient Pathways Recommendations
The Report won't be the final aim but the necessary step to understand what concrete proposals against pain we can propose to European, National and local Institutions and to work on the second step of the project: identify pathways/recommendations against pain according to the patients point of view for a good Health policy on chronic pain relief.
3. Publication of "Pain Patient Pathway Recommendations"
The third and last step of the Project is politically the most important: to promote the Civic Recommendations at National and European level under Italian EU Presidency.
A collaborative approach
- The political framework of the project is designed by Pain Alliance Europe (PAE) representing chronic pain patients in Europe. PAE is central as promoter (or co-promoter with ACN) and functions as official EU lobby body representing the patients' voice.
- Active Citizenship Network (ACN) will be responsible for the scientific design and contents. ACN is the technical expert and consultant and has the responsibility to support this project in contents and methodology.
- The pharmaceutical company Grünenthal GmbH (GRT) will be responsible for financial and non-financial support for optimal performance and facilitation.
The "Civic Information" approach
The project methodology of the assessment work is inspired by the method of civic information proposed by many scholars and employed with notable success as a reference model for the work carried out by Cittadinanzattiva in Italy.
Civic information may be defined as the capacity for organized citizens to produce and use information to promote their own policies and participate in public policymaking, in the phase of definition and implementation as well as evaluation.
According to this method, when citizens, in spite of their presumed lack of competence in the public sphere, organize themselves and take action together in the realm of public policy, they are able to produce and use information deriving from experts and other sources, as well as from their own direct experience with the problem being addressed.
In this project, such a method is implemented by involving civic organizations in the collection of information, through interviews with Institutions, hospital authorities & professionals, which gives them the possibility to put into practice the right to participate in the evaluation of services and policies.
The project will be carried out in 20 European countries by national Patients' Associations active in the fight against unnecessary pain. All PAE members and ACN partners will be invited to be part of the project as national partners.
Clippingsand press articles:
- Marketpress 26.11.2012
- Agenzia Informazione Sanità 22.11.2012
- Quotidiano Sanità 22.11.2012
- www.gosalute.it 23.11.2012
- www.ilfarmacistaonline.it 23.11.2012
- Viversani&Belli 21-12-12
- Il Denaro 15.1.2013
- Corriere della Sera 09.06.2013
- aboutpharma.com 18.11.2014
- impactproactive.it 18.11.2014
- doloredoc.it 18.11.2014
- emaroma.it 18.11.2014
- La Repubblica 25.11.2014
Please find here a video describing the activity carried out by ACN and PAE from 2012 to 2014 in the framework of Pain patients' pathway recommendations project.
Project duration: October 2012-December 2014
For more information, please contact Mariano Votta:
To know more:
- Pain: report on respect of patients' rights among the Europe
- Civic EU Recommendations on chronic pain
- Develop EU Pain Patient Pathways Recommendations
- Pain Patient Pathways Recommendations: main data of the EU survey
The Engagement of Cittadinanzattiva in the Fight against Useless Pain
In collaboration with:
The project will be financially supported by:
The political framework of the project is designed by Pain Alliance Europe representing chronic pain patients in Europe. Active Citizenship Network is responsible for the scientific design and contents. The pharmaceutical company Grünenthal GmbH is responsible for financial and non-financial support.
(Updated: December 2014)