In the context of the SIP 2016, ACN has been mainly involved in the Working Group 1 titled "Pain as a quality indicator for healthcare".
Because of its efforts in the fields of the protection of patients' rights and cross-borderhealthcare, ACN was entrusted with the secretariat of the Working Group 1, while Cittadinanzattiva-Tribunal for Patients' Rights was entrusted with the task of presenting, at European level, an example of good practice realized in Italy on pain treatment.
At European level
Our commitment on cross-border healthcare has been constant over the years, and the MEPs Interest Group "European Patients' Rights & Cross-Border Healthcare" is only one of the last activities carried out.
Regarding cross-border treatments, the Directive 2011/24/EU on patients’ rights in cross-border healthcare has been regarded by many as a major achievement of the ‘patient empowerment’ policy promoted by patient organizations as well as European institutions, granting European citizens the right to access healthcare services in a different member state. Designed to address the obstacles deriving from the diversity of healthcare systems, such as the reimbursement rules and the delivery of health-care services, the “Cross-Border Healthcare Directive” has established a general legal framework aimed at maintaining the sustainability of health systems while protecting patients’ right to seek treatment outside their home country.
In particular, article 8(5) of the Cross-border Healthcare Directive foresees that an objective assessmentof ‘the degree of the patient’s pain’ must be used to assess the right to cross-border healthcare.
Indicators are therefore needed in member states to set criteria for granting access to cross-border
healthcare and to compare the quality of health care services available to citizens, consumers and
patients. The implementation of the Directive is now under review by the European Commission, thus
opening up the debate on the implementation of article 8(5).
So far, the transposition of the article has not been discussed in the successive reports on the
implementation of the Directive. This opens a window of opportunity to provoke debate within the EU
institutions and expert organizations on the need to develop indicators for pain measurement as part
of the implementation of the Directive.
Within the framework of the societal Impact of Pain (SIP) and spearheaded by ACN, EFIC, PAE and Grünenthal it was conducted a research amongst their members and affiliates in order to assess the level of implementation of Article 8(5) in Europe in respect of pain.
Nov. 2016: SIP 2016 Policy recommendations published at the ISPOR 19th European Congress in Vienna. The International Society for Pharmacoeconomics and Outcomes Research (ISPOR) is an international multidisciplinary professional membership society, which advances the policy, science, and practice of health economics and outcomes research. Read more and download the poster
At national level
Cittadinanzattiva is historically committed to pain care and to pain avoidance with projects and informative campaigns.
The Project “In-dolore 2014”, unconditionally supported byGrünenthal, is a pilot audit promoted by the Tribunal for Patients’ rights (which is the health network of Cittadinanzattiva) and realized in collaboration with the Civic Evaluation Agency to monitor citizens’ perspectives about treatment and attention to pain as well as the presence of fundamental services, features and best practices in the Italian hospitals. Goals of the project are: build a network and promote centres of excellence, draw attention on the topic and encourage a healthy competition among healthcare providers to improve pain treatment on the basis of citizens’ needs. Indeed, the project has informed citizens about attention to pain provided by 46 Hospitals that have voluntarily submitted to: detailed data are available online. 214 wards have been monitored and 711 patients have been interviewed, thanks to the help of our volunteers. Data have been collected through two main tools: a checklist containing 50 items and a questionnaire addressed to patients of 5 key wards.
Some results: there’s still a lot to do with pain treatment for children and elderly, as well as in ERs. Regardless of the disposition of the law 38/10, patients’ information on the topic is very poor, and the same applies to patients’ awareness about their rights. Healthcare providers often do not offer proper training to their staff. Pain is reported almost always on medical records and promptly treated with drug therapies, but intensity of pain is not detected with appropriate equipment in 1 out of 2 cases.
Read more on our commitment on the issue of cross-border healthcare assistance at national and European level:
- Cittadinanzattiva has been the only Italian association involved as reviewer for the civic evaluation of the App “European Health Insurance Card” produced by the European Commission and DGSANCO in 2012. For more information click here and here.
- “Manifesto for the implementation of the Right of European Patients to make an informed choice”, draftedin 2013 with 31 Civic & Patients Associations coming from 13 EU Countries and 2 EU Networks.
- 2013: “European coordination of patients’ associations and other stakeholders”, informal EU network coordinated by CAN, composed of 31 Civic and Patients Associations and other stakeholders interested in working together for the implementation of the Directive, sharing information, good and bad practices, etc.
- May 2013: VII European Citizens' Rights Day: “Patients' involvement and Cross-Border Care”, attended by EU and National Institutions, 40 patients’ associations, healthcare professionals and stakeholders of EU networks. For more information click here and here.
- October 2013: Presentation to the Italian Institutions of the report “Care Without Borders: is it possible now?”
- October 2013: “The right to information and free choice in a European perspective”, a report with an updated state of the implementation of the Directive in 12 EU Countries and Civic Recommendations, presented also to the DGSANCO by a delegation of Active Citizenship Network (composed of 10 Associations coming from 8 EU Countries)
- “Make them informed! Ask your State to inform citizens on EU health rights”: online petition, signed by hundreds of EU citizens to ask their National Parliaments to transpose the Directive into their legislation
- 2013 / 2016:European tour to talk about the Directive. Public debates with National Institutions and patients associations to share the experience from several Countries.
- 2015: MEPs Interest Group “European Patients' Rights and Cross-border Healthcare”
- 2016/2017: Communication campaign in 14 Countries “Patients' rights have no borders”
Read more on our commitment on the issue of pain relief at national and European level:
- The Engagement of Cittadinanzattiva in the Fight against Useless Pain
- 2014: Pain therapy and palliative care in the European political agenda
- Civic EU Recommendations on chronic pain
- Pain: report on respect of patients' rights among the Europe
- Pain patient pathway recommendations
- Chronic pain: making the invisible visible. European collection of good practices
- “European Civic Prize on Chronic Pain - Collecting Good Practices"
(Last update: May 2016)
- Community PRO (Participation Resilience Organizing)
- ATMPs revolution: empowering leaders of EU civic and patients’ advocacy groups
- ENGAGE – Engage Society for Risk Awareness and Resilience
- EUROPEAN PATIENTS’ RIGHTS DAY 2022
- European Pillar of Social Rights & the commitment of Cittadinanzattiva
- European Pillar of Social Rights & chronic pain
- European Pillar of Social Rights & COVID-19 emergency
- European Pillar of Social Rights & childcare and support for minors
- AMR Patient Alliance – developing educational repository for patient and caregiver awareness of drug resistant infections
- The role of the European Pillar of Social Rights ambassadors
- THE ENGAGEMENT OF CITTADINANZATTIVA IN THE FIGHT AGAINST THE COVID-19 PANDEMIC
- NIGHTINGALE - Novel Integrated Toolkit for Enhanced Pre-Hospital Life Support and Triage in Challenging and Large and Demanding Emergencies
- The successful experience of Polart Circle
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