Medical research charities and the research agenda – a strong collective voice for change

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Sally Thompson is the Association of Medical Research Charities (AMRC)’s Communications Officer. Here she blogs about the AMRC and the strong collective voice of medical research charities.

Medical research is the UK’s favourite charitable cause, with over 11 million of us giving money to medical research charities in a typical month. Charities want to fund the best research possible – so how do they go about this? And how do they influence the research agenda to make sure patients benefit as much as possible from medical research?

How much research do charities fund?

Funding for medical research comes from a variety of sources, with industry, research councils such as the Medical Research Council (MRC), other government departments, the National Institute for Health Research (NIHR), and medical research charities all providing research funding – all feeding their ideas to the government to try to improve the research process.

The Association of Medical Research Charities (AMRC) is the UK’s national membership organisation of leading medical research charities; representing a wide range of conditions from heart disease, diabetes and cancer to dementia, inherited diseases and neurological conditions (like MND).

Charities support over a third of publicly funded medical research in the UK, with our members spending £1.3bn on research in 2013. This makes our sector significant in terms of its scale and impact, enabling us to contribute considerably to knowledge and understanding in the life sciences, medicine and health.

amrc stats

Our collective voice

AMRC members are part of a network of over 120 medical research charities. We help them make connections with each other, with industry and other funders, and work together to influence the government’s health and research policies.

Helping charities fund high quality research

To become a member of AMRC, medical research charities have to demonstrate that they only fund the best research. All our members have a research strategy, and they all carry out peer review to ensure the research they fund is scientifically sound, well designed and important for the field.

We also help our charities examine the impact of their research through a collaboration with the MRC, which has given over 50 charities, including the MND Association, the opportunity to use Researchfish. This software tracks the outcomes and impact of research so charities can show their supporters how their money is making a difference.

Giving guidance, and a clear position on key issues

Charities have to think about a wide range of issues, from ensuring research integrity, to their role in open access publishing and controversial topics such as the use of animals in research. Charities are often the first point of contact for the public who want to find out more about these issues so need to be clear where they stand. We help by bringing charities together in working groups to share ideas, and by having clear policies and guidance on how charities should operate. We have just published a guide ‘Talking to the public about animal research which aims to help our members be completely open about when and why they fund animal research, so that their supporters can get as much information as possible.

Campaigning with members on health and medical issues

When it comes to campaigning charities are very active, often driven by the fact that they are uniquely placed to represent the views of patients and the public. All our members have the chance to feed into consultations answered by AMRC. This allows smaller charities that may not have the resources or manpower to respond individually, to still feed in their views, and ensures that we have a strong voice that is well respected by government and policymakers.

Our successes:

Recently we have contributed to consultations that have led to important changes to research and regulatory processes including:

Looking forward

We’ve got plenty of things on the agenda for this year and further into the future to ensure that charities continue to have a major role in decisions about research, including working with NHS England to make sure patient data can be used to help advance medical research, contributing to the consultation on science capital, and engaging with policy makers and parliamentarians at our summer reception, organised by the APPG on Medical Research to promote the benefits of investing in research.

The MND Association’s vision is a world free from MND. Realising this vision means investing more in research, further developing partnerships with the research community, funding bodies and industry, while ensuring that advances in understanding and treating MND are communicated as quickly and effectively as possible. Our Research Development team, composed of 11 members, work hard to achieve this. Principally, the Research Information team within this are involved in communication activities including this MND Research blog.