On November 14 we held our annual conference, a great chance for AMRC members to come together as a community, and discuss the issues that are really important to us now. We heard from Earl Howe, Professor Jonathan Montgomery, Dr Clare Gerada, Dr Jonathan Sheffield, Owen Sharp, and Sir Mark Walport.
We published A unique contribution, our annual review, showing new data about AMRC members’ funding, who in 2011 contributed over £1bn to UK health research for the fourth year in a row, and featuring case studies from charities doing really innovative work.
And we outlined our new vision – ‘charities delivering high-quality research to improve health and wellbeing for all’, supported by a new mission and strategy to achieve it.
The talks from the day provided some really thought-provoking ideas about how charities can be strengthened by collaboration with each other, patients and government.
Earl Howe – ‘Research brings hope, informs decisions and improves lives’
The importance of medical research for improving healthcare was a key message of Earl Howe’s talk. The health minister highlighted the ‘unique’ position of the NHS in having access to decades of patient data for the whole nation.
‘The opportunities for research and innovation [using this data] are vast.’
And this is already happening, he said. Over 60 studies are under way, supported by the Clinical Practice Research Datalink. And he hopes more people will support research using their data, when they can see what a difference it makes.
Sir Mark Walport – ‘Everything we do is in partnership’
Sir Mark Walport, director of the Wellcome Trust, focused on the unique role of charities in medical research, and what they can bring to partnerships.
He reminded the community that awarding a grant is only the beginning of charities’ relationships with researchers, the results, the outcomes and the impacts are what we are really interested in. Charities need to be prepared to make long-term funding commitments, to take a long view, to be good partners, and he highlighted what many AMRC members bring to the table: speaking for and with patients.
When charities work in partnership, with government, industry and each other, we can achieve things that we couldn’t do on our own. But he was also very clear on what charities should not be: a substitute for state funding. Charities’ mission is to fund research, and we are able to fund in universities and hospitals because they are funded by the government.
He called on charities to speak out on issues that affect research, and the need for medical research charities to be bold in their openness about research using animals. He commended the declaration on openness and commitment by the medical research community to establish a concordat, which will develop principles of openness and practical steps to underpin a more transparent approach to animal research.
And in all this, he considered what AMRC should be: endorsing our new vision, mission and strategic framework, he called AMRC ‘a collective voice for the sector and a mark of quality’ research funding. Charities together can influence in a way they can’t alone – summed up by the collective financial investment of AMRC members in research of over £1bn.
Greater than the sum of the parts – Prostate Cancer UK’s experience
The importance of collaborations to the sector was Owen Sharp’s message. Owen discussed the range of options open to charities, from specific project collaboration to complete mergers.
For one month a year, Prostate Cancer UK works with Movember, putting them in contact with similar organisations all over the world, and opening up new global research possibilities.
Meanwhile, a joint entry, with Breast Cancer Care, to the London Marathon meant that together, the two could mobilise a wider community than they could alone.
Owen also discussed the recent merger between Prostate Cancer UK and Prostate Cancer Action, why it happened, and what issues they have faced. He spoke about the importance of communication during a merger – to patients and local organisations who have a relationship with a charity and their brand, but also internally. And a merger is just the start of a longer process of integrating working methods to form a single organisation.
So what should we take from this? He said that charities can to do more to exploit opportunities to collaborate. If charities have a clear strategy, and in the case of medical research charities, a research strategy, others can look at your strategy and find points of alignment. From this can come new partnerships, with greater pots of money, more sustainable funding and ultimately we can achieve mutual strategic goals.
Research in the NHS – ‘An evolution, not a revolution’
The challenges of collaboration were tackled in a different way with our panel session on clinical research in the NHS. All three panel members were in agreement that research should be central to the working of the NHS, which requires input from patients and staff alike. But that this would require a change to the entire system – ‘an evolution, not a revolution’, was how Dr Jonathan Sheffield, chief executive of NIHR Clinical Research Network described their plans for the next year to 18 months.
He urged charities to align closely with the new clinical research networks, to help communicate messages about the safety and importance of participating in research to patients. He said that patients should expect to be asked to be involved in research, and that no trial should be cancelled due to recruitment problems.
Professor Jonathan Montgomery, chair of the newly formed Health Research Authority echoed these statements, and spoke about how his organisation will be easing the process of shaping organisations to make this happen.
He described the commonality between all parties who are investing in this collaboration, some giving their time, some money, some their expertise. To him, the HRA exists to ease that process.
Dr Claire Gerada, chair of the Royal College General Practitioners brought the perspective of clinicians, stating that the Royal College has the principles of research at their heart. She opened up the question of what the NHS will be in the future and how its composition will affect research. With the NHS in flux, the community would have to adapt quickly to ensure that clinical research remains a priority in this changing landscape.
What next
The talks set out many challenges for medical research charities, and showed that the key to strengthening the sector will lie in our ability to bring our unique perspective and abilities to collaborations with government, patients, researchers and each other.
- Our workshop on 26 November will explore the intellectual property issues of collaboration, to see how collaboration can create innovative research, while recognising the contribution of each organisation
- We are holding a workshop with healthcare professionals, researchers, policy-makers and research funders to develop a vision for research in the NHS on 10 December
- The APPG on Medical Research will be holding a breakfast roundtable for parliamentarians to discuss how research can be embedded in the NHS in January.
- We will be addressing the use of patient data in our response to the consultation on the NHS constitution, and continued discussions with policy-makers on this issue.
- We are taking forward work on how we openly discuss animal research, through our support for the declaration of openness and work with a coalition of stakeholders to make practical steps towards a more transparent approach across the biomedical community.
