Charities discuss how to engage with Europe

Posted on April 24, 2012 by

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On Monday, AMRC brought together representatives from the European Parliament, AMRC charities, and patient groups and medical research organisations that operate at a European level to discuss how UK medical research charities can engage with Europe. We looked at the structures, policies and institutions of the EU; what MEPs want from charities; and explored how other organisations work with the EU and other European partners. It was a chance to learn more about European policy, share ideas and contacts, and discuss the benefits and drawbacks of having a greater presence in Europe. I’ve tried to capture the main points.

Why do charities need to engage in Europe?

The EU and its policies have a huge impact on research here in the UK. For example, the EU Clinical Trials Directive was introduced to bring all clinical trials conducted within the EU under the same legislation, but since its introduction there have been concerns that it is increasing delays and costs. The EU also funds research across Europe – currently through Framework 7 which is due to finish in 2013 and be replaced by Horizon 2020 from 2014 to 2020. These represent challenges and opportunities, but unless you understand how the EU works and have a foot in the door at many of the offices and institutions that coordinate European research and innovation initiatives – not to mention knowing all the acronyms – you won’t stand much chance of influencing them, let alone benefitting from them.

The size and number of medical research charities in the UK is pretty unique in Europe. Whereas medical research is the most popular charitable cause for donors in the UK, in many other EU states social programmes and the arts dominate. The EU has acknowledged the potential of philanthropy in promoting research and development but – with a few notable exceptions – charities largely remain on the periphery of policy making in Brussels. There are however opportunities to change this, and given the size of the medical research charities sector in the UK, there may be potential for the UK to be leaders in championing the role of charities in funding research and the benefits that we bring with our unique funding strategies.

What was discussed?

The slides to the speakers’ presentations, including Becky’s guide to the EU, and the AMRC report written by Mike Thomas, called “Opportunities for medical research charities to engage with Europe”, are available to download here.

Speakers:

  • Michael Thomas – ESRC Fellow, Cardiff University
  • Dr Mark Palmer – Head of International Strategy, MRC
  • Andy Flagg – Parliamentary Assistant to Glenis Willmott MEP, Leader, European Parliamentary Labour Party
  • Nancy Lee – Senior Policy Advisor, Wellcome Trust
  • Layla Theiner – Public Affairs Manager, Cancer Research UK
  • Rod Mitchell – Chair of IBD Research Foundation Management Board and member of several European networks including EGAN, EPPOSI and the European Patients Forum.
  • Dr Kieran Breen – Director of Research, Parkinson’s UK
  • Dr Nick Sireau – Chairman of the AKU Society

Following Becky’s introduction to the EU, Mike presented his detailed report on the initiatives across Europe that affect research here and overseas, and the many bodies that we might want to be more involved with should we increase our activity in Europe. The report has a great run down of all the various EU institutions and initiatives that medical research funders may be interested in – a good beginners guide. It also takes an interesting look at how the “culture of giving” varies across Europe – the UK rates particularly high alongside Ireland in how much we give to charity – and how different countries approach research and innovation. He rounded off the presentation (and the report) with his suggestions for how AMRC could branch out into Europe. This nicely paved the way for the afternoon’s discussions.

Next up was a panel session with Mark Palmer, Andy Flagg, Nancy Lee, Layla Theiner and Rod Mitchell. The MRC are involved in many European forums on behalf of UK medical research and Mark unravelled how they work to feed in the British government’s priorities and concerns regarding medical research and innovation. Andy then gave a fascinating insight into the inner workings of an MEP’s office. His boss, Glenis Willmott, who is a member of the Environment, Public Health and Food Safety Committee and takes a very active interest in health policy, wants more briefings and information from health charities the audience heard! Nancy and Layla are both heavily involved in their respective charities’ European affairs and were able to offer some great advice in garnering influence in Brussels. To round off the session, Rod Mitchell, who has been in so many different pan-European research and patient groups that there wasn’t enough time to introduce them all, gave his top tips for coopperating at a European level and also his wish list for improving the current level of engagement. The session led to lively discussion from the floor. The take-home message was that networking is key to gaining inside information, helping with horizon scanning and enabling many small groups to have a louder voice and greater impact both in terms of policy and research. However, everyone admitted that it is resource intensive and charities need to think very carefully about the costs and benefits.

To reinforce these conclusions, Kieran Breen and Nick Sireau described how the charities that they lead have worked with or established networks across Europe. For Parkinson’s UK, Kieran explained that as the only research-funding Parkinson’s charity in Europe, they took the lead to ensure that research was at the forefront of the European Parkinson’s Disease Association’s European policy activity. And Nick Sireau, gave an inspiring account of the efforts the AKU Society – which supports research into an extremely rare disease – has gone to to set up international patient networks and raised money to fund a clinical trial of a promising treatment for AKU.

What next?

The stories we heard and the opinions around the room have given us a lot to think about. We will now be talking to our members – some of which are already engaged with Europe or are planning their own future involvement – to decide how best AMRC can support our members to join up with European initiatives and work alongside other funders to champion medical research in Europe. Do check out the report and presentations and let us know your views. You can also join the European policy network run by Cancer Research UK, which meets every three months to coordinate activity and keep policy teams informed. Contact Becky on b.purvis@amrc.org.uk if you would like to get involved.

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