2018

The recent presentation at the European Parliament of the Spanish experience "Sine Dolore World Park", which took place on April 26th thanks to the support of the MEP Rosa Estaràs Ferragut and the collaboration of Active Citizenship Network, represents at the same time a point of arrival and a point of departure for the organizers of the Sine Dolore European Pain Foundation, in particular for “the deus ex machina” Prof. Jordi Moya, to whom the merit of having always believed in this initiative, even in spite of those who have hastily rejected it as: “very nice initiative, made in a beautiful place, but in a context that is too small that has no impact”. Personally, I do not believe that an initiative carried out far from the main European capitals and more generally from the buildings of the Institutions can not have an impact on public policies and, ultimately, on the conditions of many citizens. There are many examples of praiseworthy initiatives far from the spotlight but capable of bringing benefit to the community, capable of having a positive impact on the care of common goods because they are oriented towards the general interest. For this to happen, it needs a great civic sensitivity by the promoters, but also a support from public and private subjects who believe in it and invest in that specific initiative. This is the case, for example, to remain in the health sector, of the European Health Forum Gastein, hosted by Bad Hofgastein, an Austrian municipality of about 7,000 inhabitants nestled in a fantastic landscape context. Menorca with its Sine Dolore World Park, on chronic pain, can potentially represent at European level what Bad Hofgastein represents on health policies in general, with his European Health Forum Gastein. It is a challenge and a wish at the same time. Of course, it depends first of all by the decision of the promoter to continue on it without any auto referential approach, but also it will depend how much public and private bodies want to invest and support it. Active Citizenship Network has decided to support it not only because it addresses a subject dear to us, the right of patients to avoid pain and suffering, but above all because we have found in Menorca, during the week of the Sine Dolore World Park (SDWP), a context with a soul, a strong sensitivity and a widespread civic participation - which is in line with our nature and our history of civic association. It is certainly a matter of pride to be able to present SDWP to the European Parliament, in front of European institutions and many relevant stakeholders. But I hope that this passage can be seen as a starting point and not a destination for a commitment at the supranational level of the SDWP, the unique theme park in the world against pain and for the quality of life, in terms of addue value and peculiarity, that this initiative can offer to the chronic pain constituency. The potential is truly remarkable. Indeed: At national level, I think SDWP could represent the perfect context where to promote the Spanish version of the "Societal Impact of Pain" (SIP), it means a multi-stakeholder platform able to provide opportunities for discussion for health care professionals, pain advocacy groups, politicians, healthcare insurance providers, representatives of health authorities, regulators and budget holders. I encourage Sine Dolore European Pain Foundation to play an active role on it, in accordance with the promoters of SIP, of course. At EU level, we believe that the online platform provided by EU Commission "The Societal Impact of Pain Thematic Network" is a very commendable initiatives to share best practices and develop policy recommendations, but is not enough because it doesn’t facilitate any face to face meeting. For this reason, and more in general – with the aim to contribute to make the invisible visible on chronic pain - my organization and the Sine Dolore European Pain Foundation have promoted a joint initiative called “Pain Euro-Mediterranean Coalition”, that is neither a new association nor an EU umbrella organisation, but the first civic incubator of best practices against pain across Europe, an informal network composed by manager concretely engaged to carry out good practices across Europe. And the SDWP is the context where meet each other, share experiences, promote initiatives in other context. The first enthusiastic actors who have decided to join the Coalition are advocacy groups & patients organization coming from EU Member States of Portugal, Spain, France, Italy, Croatia, Malta, Bulgaria and – outside EU -, from Kosovo, Albania and Switzerland. With them, the Coalition take advantages from other two very relevant components: from one hand, the experts that each year attend the Annual Pain Meeting, organized in Menorca by the Sine Dolore European Pain Foundation. From other hand, the managers that carry out good practices selected by an international jury of experts in the context of the bi-annual research-project called “EU Civic Prize on Chronic Pain - Collection of good practices”, the initiative promoted since 2015 by Active Citizenship Network at EU level with the aim to give evidence on existing good practices in terms of struggle against pain. With the title “Making visible the invisible on Chronic Pain: sharing successful experiences from Spain to Europe”, last 6th May 2018 in Menorca it was successfully celebrated the first Annual Meeting of the “Pain Euro-Mediterranean Coalition”, an occasion to share best practices at EU level and put the premises to develop policy recommendations at national level thanks the great participation of Spanish advocacy groups dealing with the topic. Most of them were involved last June 26th for the kick-off meeting of the incoming SIP Spanish. It is strongly believed the EU network of manager of good practices on chronic pain could represent a way to reduce the impact of chronic pain in Europe by ensuring that the right to avoid unnecessary suffering and pain (11th Right in the EU Charter of Patient Rights) could be recognized, guaranteed and respected everywhere and to everyone. The program and presentations of the Event con be found here.   Mariano Votta - Director of Active Citizenship Network

Enhancement of the patient's rights to avoid pain!

The recent presentation at the European Parliament of the Spanish experience "Sine Dolore World Park", which took place on April 26th thanks to the su…

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Group photo of the BMP grant winners

Award Ceremony of BMP Patient – Centered Innovation Grant

On the 20th of June in Brussels an award ceremony was held for the Brain, Mind and Pain (BMP) Patient-Centered Innovation Grant. The BMP Grant has bee…

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A session was organized by the Brain, Mind and Pain (BMP) Interest Group of the European Parliament on “Optimising Patient Relevant Outcome Measures for sustainable healthcare systems and strong economies”. Keynote Addresses were presented by Laure Delbecque, Associate Director of Pharmerit International, who pointed out that Quality of life (Qol) questionnaires should be based on patient interviews and Anna Graca, Programm and Policy Officer at the European Commission, who presented the new programm “Horizon Europe”. Grünenthal’s Chief Commercial Officer Mark Fladrich spoke as a panelist and strengthened Grünenthal’s active engagement in involving patients from early on in our clinical trials set-up. He also mentioned the public-private partnership IMI (Innovative Medicines Initiative) and the multi-stakeholder platform SIP (Societal Impact of Pain) as perfect examples of reform in the patient-centered measured outcomes. Kaisa Immonen, Policy Director of European Patients’ Forum, stated that Patient Outcome Measure are not enough to be reported, they should be prioritised. This led to a discussion with the other panelist, the outcome of which was that this practice should be implemented into clinical trials, investigator initiated trials (IITs) and all other initiatives. About 100 participants from multiple stakeholder organisations participated in this interactive Event in the European Parliament.

BMP Meeting about Patient Reported Outcome Measures in EU Pa…

A session was organized by the Brain, Mind and Pain (BMP) Interest Group of the European Parliament on “Optimising Patient Relevant Outcome Measures f…

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The Thematic Network on SIP held its first webinar dedicated to discuss the "Challenges and opportunities to address the Societal Impact of Pain in the EU" on 25 June 2018.    

First interactive webinar on the 2018 Thematic Network on SIP

The Thematic Network on SIP held its first webinar dedicated to discuss the "Challenges and opportunities to address the Societal Impact of Pain in th…

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The European Network of Fibromyalgia Associations (ENFA) held a conference in Malta this year, coinciding with the International Fibromyalgia Awareness Day on Saturday 12 May. The main aim of the conference was to inform and empower the representatives of European Fibromyalgia associations, by giving them the opportunity to meet and discuss with international colleagues the current fibromyalgia landscape. A parliamentary session took place on the previous day, where the President of ME, CFS and Fibromyalgia Alliance Malta, Ruth DeBono, and the President of ENFA, Souzi Makri, gave speeches about the state of fibromyalgia on a European level. A conference session was formally opened by Marie-Louise Coleiro Preca, President of Malta, where motivating lectures and speeches were given by professors, patient-organisations representatives and real patients, who all focused on the need to integrate people, suffering from fibromyalgia, into our society, work places and home environment. All attendees confirmed the importance of providing a social model for people with invisible disabilities, shifting away from the medical model and the need to challenge the societal norms, which people with disabilities are still expected to conform. You can read the full conference report, provided by ENFA, here.

In every disability, there is an ability!

The European Network of Fibromyalgia Associations (ENFA) held a conference in Malta this year, coinciding with the International Fibromyalgia Awarenes…

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The first of its kind, the inaugural Brain, Mind and Pain Patient-Centred Innovation Grant has announced its winners on Wednesday 20 June at 13h00 at the Leopold Hotel in Brussels.      

Brain Mind and Pain Grant puts Patients in the Center

The first of its kind, the inaugural Brain, Mind and Pain Patient-Centred Innovation Grant has announced its winners on Wednesday 20 June at…

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Another national Societal Impact of Pain (SIP) initiative has been launched on June 26th in Spain. Several patient organisations and clinical experts came together with representatives from the Ministry of health and three other regional communities to successfully launch SIP in Spain. Participants  reflected on the challenges of pain care and management in Spain, and shared their input on the differences per regional community.  The SIP kick off meeting has represented the ideal forum to present and discuss the objectives of SIP Spain and topics to work on in a national SIP symposium planned for November 2018.  Three working groups have been built to work on the topics selected by the group, which are the following: Pain as a quality indicator of healthcare systems Coordination and continuity of healthcare assistance Management of chronic pain and vulnerable/special needs population This is another great example how a national SIP platform has been launched based on the experiences and strategy of the European SIP platform. You can see the presentation and the report from the meeting here.

SIP Spain goes live!

Another national Societal Impact of Pain (SIP) initiative has been launched on June 26th in Spain. Several patient organisations and clinical exp…

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Smart Healthy Age Friendly Environments (TN SHAFE) is one of the two other Thematic Networks 2018, coordinated by Cáritas Coimbra and AFEdemy and assigned by the European Commission (DG SANTE). TN SHAFE is presenting an online survey, which is an essential part of the Thematic Network 2018 SHAFE. The focus of SHAFE in 2018 is on people with chronic diseases and impairments and the use of eHealth and mHealth. Ideas/projects on how to achieve better quality for less investment are expected. SHAFE will recommend on funding and policy measures of the European Union to enhance technological development and building industry for smart environments through the presentation of a Joint Statement in November 2018. The questionnaire is open until June 30th and will take about 10-15 minutes of your time. You can join the survey here  – where you will be asked to choose one category and this will link you to the appropriate questionnaire. The summary of the survey will be published on the Thematic Network SHAFE Website and on the European Commission’s Health Policy Platform.  

Join the survey of Smart Healthy Age Friendly Environments u…

Smart Healthy Age Friendly Environments (TN SHAFE) is one of the two other Thematic Networks 2018, coordinated by Cáritas Coimbra and AFEdemy and assi…

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The German Pain Society e.V claims that the aim of pain research should be the therapeutical needs of the patients. With its recently published agenda "The perspective of Pain Research Germany", the specialist society wants to set a new course for the research of pain: it should help to better connect researchers in various fields of expertise and to focus the scientific studies on the patient's perspective. New findings are expected to be fast implemented in treatment practice. After two science meetings in 2015 and 2016 as well as the intensive work of more than 70 pain experts from the society, the Specialists are now presenting their research agenda. One of the main questions is, for example, how to transfer the knowledge from basic research with cell and animal experiments more quickly into practice. The president of the Pain Society summarised that application-based basic research that has a focus on the patient, connecting of researchers, research funding, supply research and the establishment of a pain register are more than mere demands of our agenda. It is a roadmap that shows how to build networked structures and thus improve the supply of pain patients in the medium and long term. The German Pain society is and endorser of SIP and you can learn more about them on our Endorsers page. You can read the full research agenda in German here.

German Pain Society submits a research agenda

The German Pain Society e.V claims that the aim of pain research should be the therapeutical needs of the patients. With its recently publis…

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On May 31st, the French Society for the Study and Management of Pain (SFETD) and the pharmaceutical company Grünenthal have launched the national Societal Impact of Pain (SIP) platform in France. Many healthcare professionals participated in this meeting with the title “From a journey of wandering to a course of care”. You can find more information in French on the website of SFETD.

Launch of SIP in France!

On May 31st, the French Society for the Study and Management of Pain (SFETD) and the pharmaceutical company Grünenthal have launched the national Soci…

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