EU civic research: collection of good practices on chronic pain

Foreword

On 11 January 2014, the Italian Council of Ministers adopted a document laying out the preliminary plans of the Italian Presidency of the Council of the European Union indicating pain therapy and palliative care as areas of focus during the Italian Presidency.

Cittadinanzattiva Onlus and its European branch Active Citizenship Network (ACN), being deeply involved in the European and national debate on patients' rights against unnecessary and useless pain, welcomes the Italian Presidency intention to tackle the issue of pain therapy and palliative care and would be delighted to contribute to the agenda and content setting with this regard.

Putting pain therapy and palliative care on its agenda will allow the Italian Presidency to position Italy as a pioneer in this field and share its own experience with other member states (especially with regard to the best practice law 38/2010 on palliative care and pain therapy). It will, above all, promote a greater awareness of the issue of chronic pain therapy among EU and national policy and decision-makers and over the longer term, reduce the negative impact of chronic pain on EU society. This would not only ensure a lasting legacy of the Italian Presidency but also pave the way to a better future for patients in Europe suffering from chronic pain. Based on an observation of activities undertaken by previous Presidencies in the area of health, the initiative outlined below (solely or combined with an integrated approach) could be considered by the Italian Presidency and stakeholder in order to promote the debate on palliative care and pain therapy during its term. 

Background

Cittadinanzattiva Onlus has more than 30 years' experience in the fight to protect citizens' rights in the health sector, which began at national level with the Tribunale per i diritti del malato ("Tribunal for Patients' Rights" or TDM) in 1980 and was later strengthened through the Coordinamento nazionale Associazioni Malati Cronici ("National Coordination Centre of Chronic Patients' Associations") in 1996. From 2001 with Active Citizenship Network (ACN), it started to promote at European level too civic participation and protection's rights, collecting almost 100 civic and patients all over the Continent.

Over the last 15 years, Cittadinanzattiva and Active Citizenship Network have been increasing their contributions to the promotion and protection of citizens' rights against useless pain by supporting:

  • Protection against violations of the right of individual citizens

  • Promotion of information and awareness raising campaigns

  • Actions designed to promote cultural changes

  • Institutional mediation

  • Production of citizens' information

  • Collection and dissemination of best practices

Cittadinanzattiva's commitment to the promotion and provision of incentives for service improvement, innovative approaches, and policies focused on community orientation has very deep roots. In 1988, during the voyage of the Minibus rights, Cittadinanzattiva rewarded health services operators for favouring the protection of citizens' rights.

It is these service improvements that lead to the sharing of knowledge between policymakers, patient organizations, and, most importantly, the improvement of the lives of those living with chronic pain.

Over the years, we have refined and honed our assessment tools to arrive at a working definition of Good Practices that identify the key programmatic features as well as instituting awards dedicated to the public acknowledgement of these Good Practices and real databases. Concurrently, the Good Practices began to be identified in many and varied contexts, with the consequent increase in the number of health service awards and recognitions distributed in Italy .

In the space of chronic non-cancer pain, Good Practices are an important part of the policy pursued by Cittadinanzattiva on a national and European level.

At the Italian level, for example, Cittadinanzattiva manages an important prize, the "Andrea Alesini Award for the humanization of care" in which the pain management is relevant.

 At European Level, ACN and Pain Alliance Europe drafted in 2012-2013 a report highlighting a collection of Good Practices to avoid unnecessary suffering and pain.

During the 2014, for the first time at European level, the issue of chronic pain is being put on the agenda by the EU institutions. It is of paramount importance that the public feels empowered to voice their support. This project will help to raise awareness about the phenomenon, enhance the body of knowledge of positive experiences and success, and strengthen 's commitment to this topic.

Project Description

In 2014, Active Citizenship Network has started a research-project at the European level with the aim to give evidence on existing good practices in several European countries in terms of struggle against pain.

In particular, the research allows us to give continuity - expanding it with some specificity – to the investigation for good practices in the struggle against pain started by ACN - in co-operation with PAE - in 2012-2013.

Aims of the project

  1. To keep attention focused on chronic pain as a health priority locally, nationally, and at the EU level;

  2. To encourage the exchange of experiences between professionals and patients' associations;

  3. To raise awareness among institutions about the need to identify chronic pain as a priority in health policies and programs at EU and national levels;

  4. To create a body of evidence that can be used to support the expansion of programs tailored to the care and treatment of patients with chronic pain;

  5. Raise awareness about the technological advances and their impact of the care and treatment of chronic pain – how the improvement of lives for those with chronic pain.

This project will collect Good practices experiences on chronic pain and then present them in a public event in the second half of 2014.

The Good practices collection will involve the networks and contacts of ACN in Europe. The experiences will be gathered in at least in 6 countries. It not will be a new award, but the recognition of ongoing excellences.

The themes and the draft scheme for the collection of Good Practices

The types of Good practices to be identified will be classified as follows:

  • Policy (patient empowerment, civic participation, awareness raising, etc.) with a particular ttention to campaigns and education initiatives;

  • Innovation: apps & tools for chronic pain management (devices for patients, care givers and health professionals), focusing the attention on the concrete added value they produce;

  • Another crosscutting diversification could be by age (solutions for the young, the elderly, etc.).

 

Project duration: from June to December 2014

Downolad the Report and the abstract

Clippings and press articles:

"My Pain Feels Like..." Patient Initiative Gets the Status of European Best Practice (October 2, 2014)

EUPHA Newsletter 8 – 2014 (August,27 2014)

 

For further information please write to This email address is being protected from spambots. You need JavaScript enabled to view it.

Other information:
The Engagement of Cittadinanzattiva in the Fight against Useless Pain

Good practice: the policy of Cittadinanzattiva

 

This proejct has been made possible thanks to an unrestricted educational grant from:

pfizer logo

 

(Last Updated: July 2014)

 

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