Pain Alliance Europe has to take into account that making the plans for 2019 will always be under the restriction that we will receive the needed funding. However, starting from a positive attitude the following will be the goals for 2019. Adjustments can be made during the year following the situation but always with the aim to improve the quality of life of people living with chronic pain in Europe and being “the voice of people with chronic pain”.
The activity plans are divided into two sections. One is the core activities and the second one being the project activities. The latter could run for one or more years.
The core activities of Pain Alliance Europe are those activities which are necessary to keep the alliance working and to follow their legal responsibilities. These are:
- Organising one or two general assemblies,
- Organising board meetings,
- Keeping records of minutes and in and outgoing post and doing all other necessary secretarial activities.
- Keeping records of all financial transactions and present them, audited by an accountant to the general assembly.
- Organising and maintaining the website, the facebook account and the Twitter account of PAE.
- Informing members and relations by means of a newsletter and news flashes.
- Maintaining and strengthening relations with Sponsors of PAE and in addition trying to find more of them.
- Building on relations with our present partners, both healthcare professionals as patient associations and try to extend them.
- Maintaining relationships within the political arena with MEPs, policymakers of DG SANCO, DG Research, DG Employment, DG Finance and so on; with the European Council and supporting the members with the Semester.
- Maintaining and building on relations with European institutions such as the EMA.
- Strengthening our relations with the industry in order to participate in new developments.
- Strengthening our relations with the scientific world in order to get more involved in fundamental and specific research projects.
Although written like this it doesn’t look much, in reality, it takes many hours of extensive work to do all this in such a way that it has influence. Board members and the secretariat spend a lot of time on these basic activities. They are proud to do this for you, our members.
Brain, Mind and Pain Interest group (BMP)
This project started after the elections in 2014 had his launch meeting in February 2015. It was assumed that this project will at least run till the elections of 2019. At the start of 2019 the decision must be taken if we can and will continue our combined efforts and if we will have the same support from our sponsors. Although PAE input will be focussed of continuation we must keep in mind reality and the voice of our partners. EFNA, MEP’s Sponsors. www.brainmindpain.eu
When continuation will be achieved a lot of work will lay in front of us during 2019 or organising again such a strong support in the EP.
Societal Impact of Pain (SIP)
After becoming a cooperative partner of SIP in 2016 our involvement in SIP has increased. In 2019 we will follow up on our earlier activities in 2018 and recommendations from the steering group. For 2019 we will stay focused on the path chosen for 2018 aiming of implementing more National SIP alike platforms and at the same time advocate on a European level. With the 2019 elections ahead of us it will be a challenge to maintain so much support within the European parliament. This will cost many efforts from all the SIP partners by reaching out to their national semester. www.sip-platform.eu
BMP Patient-Centred Innovation Grant
Started in 2017, this biennial grant is a PAE lead project. PAE is supported in this project by the BMP interest group, European Network of Neurological Associations (EFNA) the professionals’ counterparts of PAE and EFNA, European Pain Federation and the European Academy of Neurology. This project is made possible with the financial and other support of Grünenthal. IN 2019 it will start with its second edition.
This project is mainly aimed in stimulating projects initiated by patients for patients to improve the quality of life. www.bmp-grant.eu
Having done the first survey in 2017, running the second one in 2018 we preparing right now already the third one for 2019. The results from the first survey gave us insight in the health situation of the chronic pain patients and identified some key messages. These messages were used to communicate these to our target audience, healthcare professionals, politicians and policymakers. The results of the second survey will be used also to address the politicians and policymakers but much more focused on the social and economic issue’s. We will use these results to try and influence the social pillar discussions in the EU parliament, EU commission and the EU council. We will bring this also forward to the ESC were form the councils’ site these issues are discussed. www.pae-eu.eu
Social Impact of Pain Stakeholders Group on the EU Health Policy Platform
Together with EFIC, PAE is running the stakeholders group. The aim of this group is to get as much positive noise on chronic pain as possible in order to influence the policymakers. The stakeholders’ group will stay for the upcoming years. https://webgate.ec.europa.eu/hpf/group/index
Thematic Network on the Societal Impact of Pain
As a follow-up on the stakeholders’ group the moderators were asked to develop a thematic network with the aim to produce policy recommendations for the European Commission within a year. Started in the first quarter of 2018 this project will continue in 2019. https://webgate.ec.europa.eu/hpf/group/index
PAE is, for 2019 and later, involved in a couple of research projects one way or another.
The Council of Coaches project, Relief project, Myself project, Improving the care of patients suffering from acute or chronic pain, IMPATE – European Network for IMproving PAin Treatment in Emergency departments are the main ongoing calls we are involved in.
PAE is always trying to get involved in the developing of new projects with several consortiums within the Innovative Medicines Initiative IMI, Horizon 2020 or its successor calls. When granted, these projects will have their influence on the activities of 2019 and beyond. However, the chances of having projects granted are rather slim. Less than 5%, on average.
In this chapter should be mentioned that the EU is discussing how to continue the research project after Horizon 2020. Together with our partners, we presented a position paper on that to the commission. We will continue to get as much contact and influence in that process as possible.
Next generation board members
The present board of PAE realises that they will not stay on forever. As you may read in the Election appendix three of the present board members are up for re-election for their third and final term of three years.
This means that a lot of experience and knowledge will disappear when we are not initiating a solid process to stay a steady and reliable organisation. After the first initial discussions within the board, we will start in 2019 this searching for a steady board replacement. As we understand this will take time and also some additional costs but all within reason.
Despite the very tough program ahead of us, we can achieve all these goals if we – that is all the members of PAE – work together and give each our support to PAE in any way possible so at the end of the day we may really say:
“Pain Alliance Europe is the voice of people with chronic pain.”