7 December 2010: Lunch debate on the JPND research programme
Alzheimer Europe organised its 8th lunch debate in the European Parliament on 7 December. It was hosted by Nessa Childers, MEP (Ireland), and entitled “The Joint Programming of research in Neurodegenerative Diseases (JPND). What progress so far?” Answering this were Pieter Jelle Visser, a member of the JPND Management Board and Elmar Nimmesgern of the European Commission,
Research and Innovation Directorate General, Medical Research Unit.
Opening the debate, Ms Childers gave a brief introduction regarding action on Alzheimer’s disease at European level, highlighting how neurodegenerative diseases require specific action. She said that EU initiatives in Alzheimer’s disease should eventually help secure earlier diagnosis, enabling appropriate treatment and support to be given, but also hoped that we could work towards finding a cure for Alzheimer’s disease. Recognising that it is not possible to give predictions on how long this process may take, she believed that the JPND should accelerate the process.
Pieter Jelle Visser explained how the JPND works and said that it was instigated to help address the fact that in Europe research on Alzheimer’s disease is fragmented and budgets are not as effectively used as they might be. 85% of research budgets in Europe are spent nationally and this fact increases the risk of fragmentation, duplication and also often results in a lack of a critical mass. Diagram 1 illustrates the differences between the level of research spending in different areas and the levels of fragmentation and coordination. Currently, research spending and coordination on dementia is low and the level of fragmentation high and he compared this to the research into nuclear fusion where fragmentation is low and funding together with collaboration levels are high. It is hoped, he said, that by increasing the collaboration between Member States on key research topics, such as Alzheimer’s disease, joint programming can result in great benefits such as harmonising national strategic research approaches, achieving a synergistic use of shrinking research budgets, reinforcing the potential for scientific collaboration in Europe by grouping calls for grants, offering greater accountability to stakeholders in pooling research efforts addressing common social issues in Europe and a simplification of European procedures governing scientific collaboration and its administration.
Joint Programming is a completely new collaborative approach to European health research. Neurodegenerative diseases became the first area to be targeted by joint programming as they are a recognised ‘major societal challenge’ in Europe (Mr Visser highlighted the fact that there are over 6 million Europeans with Alzheimer’s disease and attached to this is a societal cost of EUR 72 billion). The JPND, which commenced in 2009, now has 23 countries participating. It is a long-term project (10 years) and the mission of the JPND is to develop a shared vision and a strategic research agenda (by mapping ongoing research and running workshops), by identifying ‘best suited instruments’ and funding mechanisms and to build up an ‘à la carte’ programme” whereby Member States participate on a voluntary basis. For example, a programme on diagnosis may have 10 of the participating 23 countries collaborating.
This year, said Mr Visser, the Commission’s Framework Programme (FP7) funding of EUR 2 million was approved for a 3 year project (JUMPAHEAD) in support of the implementation of JPND. Work has now commenced to develop a Strategic Research Agenda (SRA) to address the medical and societal impacts of neurodegenerative diseases.
Mr Visser also gave an overview of the management structure, workflow of the JPND and research priorities. The latter included priorities in three research fields (basic, clinical and health care) and six themes (pathophysiology, diagnosis, prevention, therapy, care and infrastructure). Currently, he said, there is a pilot call on cerebrospinal fluid biomarkers for neurodegeneration being made and this should result in the pilot project commencing in 2012. Further programmes should then start in 2013.
He concluded his presentation by offering his own feedback of the JPND over the last two years. Mr Visser said that it is encouraging that many countries have come on board and that such a positive approach was being adopted for selecting the research topics. However, he acknowledged that there are challenges such as:
- A need to improve the communication regarding various EU options for funding
- A need to avoid ‘reinventing the wheel’ regarding the implementation of JPND
- The fact that funding may not meet the requirements of such an ambitious project
- The rate of progress being relatively slow (one project per year).
Frieda Brepoels, MEP (Belgium) asked for clarification on the issue of neurodegenerative diseases being a broad field and asked what impact this may have. Mr Visser said that it was important to focus on a number of diseases at first and then to prioritise.
Marco Blom, Alzheimer Nederland, asked if patient organisations would be involved in the development of the Research Agenda and Mr Visser confirmed that Alzheimer Europe is considered as one of the stakeholders and as such would be able to comment.
Elmar Nimmesgern then clarified the role which the Commission plays in terms of the JPND. He emphasised that the process of Member States collaborating and developing a common vision and strategic research agenda (SRA) is an interactive one. However, he reminded the audience, that it takes time to develop and subsequently implement the SRA (which will be available in 2011). This, in turn, means that the Commission cannot yet fully realise its role of facilitator (as asked to do by the Council) but rather than wait, the Commission has published a call under the health theme of the research programme with a focus on neurodegenerative diseases. This call is in the middle of an evaluation process, which should result in EUR 60 million being invested. This amount is in addition to the EUR 180 million funding allocated to neurodegenerative research under the Framework Programme (FP) 7 so far and marks a significant increase from the funding for neurodegenerative diseases under the FP6, in which EUR 136 million were allocated over the entire programme. The Council also invites the Commission to look into possible forms of consultation and cooperation at international level and this, Mr Nimmesgern believes, is important for the medium to long-term success of the project. Currently, the Commission is actively supporting the Joint Programming by having organised a workshop, developing the SRA, preparing a report for the European Parliament (due in 2011) and supporting the mapping of ongoing research. Evidence of concrete progress was given by highlighting the discussions which have occurred about early priorities for joint action which expanded to include several countries.
Addressing the issue of the broad field of diseases which neurodegenerative disease cover, Mr Nimmesgern recommended not to focus solely on one disease and he concluded his presentation by explaining that the Commission supports neurodegenerative research in various areas.
Jean Georges, Executive Director of Alzheimer Europe, highlighted the differences between the two approaches for funding at EU level, with one communicating with the European Parliament and Commission rules applying and the other a more inter-governmental approach in which the role of the Commission is limited. Mr Nimmesgern concurred that there are indeed two very different approaches but said that among Member States there is a variance of views regarding collaboration so both were useful. He recognised that if the funding was given at national level then it would be appropriate that the control is also at national level.
Mr Georges commented how happy he is that such collaboration is occurring, especially as Alzheimer Europe has been asking for this, but also sought reassurance as to what will happen after 2012. Pieter Jelle Visser said that if a project requires EUR 20 million from Member States that it has to be acknowledged asking each Member for a contribution of EUR 1.5 million is a lot. Mr Nimmesgern again emphasised the need to take a medium to long-term perspective saying that as Member States learn to work together and share a common vision that a better understanding results which will eventually ensure that new money becomes available. However, in the near-term it is how we use the existing money which matters and that better allocation and use of money is needed. He said, “I’m rather optimistic that we can build on our experience and can take it a step further.”
Nessa Childers said that in the current economic climate some countries, such as Ireland, are subject to austerity programmes and she was concerned that existing research programmes may no longer be protected. She stressed that in the area of research, politics should not matter, saying “I hope that this part of the EU will continue to work.”
The recently-elected Chairperson of Alzheimer Europe, Heike von Lützau-Hohlbein shared her personal history of being a carer for family members with Alzheimer’s disease. She reinforced how important research can be to the quality of life of people with dementia in that it can lead to earlier diagnosis and better treatment. She stated that Alzheimer Europe is delighted by the European Initiative and the JPND. She then launched Alzheimer Europe’s 2010 Dementia in Europe book (which focuses on legal capacity and proxy decision making for people with dementia) together with the Alzheimer Europe Report on the ethical issues linked to the use of assistive technology. Ms Lützau-Hohlbein thanked in particular, Dianne Gove, Information Officer of Alzheimer Europe, for her contribution to the books and thanked both the European Commission and German Health Ministry for their support. Lastly she thanked the speakers for giving all the participants at the lunch debate a much deeper insight into how the European action is working, the sponsors for their support and Nessa Childers together with her assistant for hosting and organising the event.
Nessa Childers remarked on the depth of information in the Alzheimer Report on assistive technology, calling it a ‘magnificent piece of work’. She said she herself remembered some good and bad memories of trying to take care of her own mother and that the book ‘covers areas I would not even have thought of.’ Ms Childers said that in the area of ethics it is not really possible to solve the dilemmas which arise, but it is important to ask the right questions Ms Childers closed the meeting by thanking Alzheimer Europe and said that she looked forward to collaborating with it in the future.
Last Updated: Tuesday 27 March 2012