Position statement on Epilepsy Action research

February 2012

Position

Epilepsy Action recognises that research is essential to increase knowledge about epilepsy and improve understanding of the condition and its consequences. Greater knowledge and improved levels of understanding are critical to the achievements of Epilepsy Action’s aim to improve the lives of people affected by epilepsy. Epilepsy Action supports all research into epilepsy, and actively funds and carries out non-laboratory research. Epilepsy Action is committed to supporting people with epilepsy and others with a personal connection to have a voice in epilepsy research in the UK.

More information about Epilepsy Action research activities

Frequently asked questions

Q1 What kind of research does Epilepsy Action fund?
Epilepsy Action funds non-laboratory based research into epilepsy.

Q2 Does Epilepsy Action fund basic science research?
No. There are several large organisations, which support epilepsy research in the UK. However, there are some significant funding gaps in the fields of non-laboratory research covering the medical, social, psychological and educational fields. Epilepsy Action focuses its resources on these areas.

Q3 Do you fund research that uses animals?
No. We only fund non-laboratory research.

Q4 What are Epilepsy Action’s research priorities?
Epilepsy Action prioritises the following areas of epilepsy research:

• psychosocial
• applied clinical 
• causes of and cures for epilepsy

Q5 How does Epilepsy Action fund research?
We offer an annual programme of grants, studentships and bursaries.

Q6 Who can apply for research funding?
Researchers and students based at UK universities or NHS Trusts are eligible to apply for funding.

Q7 Who decides which research Epilepsy Action funds?
Applications are reviewed by experts in the specific field (peer review). They are also reviewed by patients and those with a personal connection to epilepsy (lay review). Epilepsy Action has a Scientific Awards Panel. This is a group of external people with an individual expertise in epilepsy, psychology, research methodology or health economics. There are also two lay members of the panel. The panel considers the applications and associated reviews. They then recommend which should be funded to Epilepsy Action’s Council of Management.

Q8 How much does Epilepsy Action spend on research?
Epilepsy Action has limited resources to fund research and most funds come from legacies and donations. This means the amount available can vary from year to year. In the 2011-2012 grants programme, £163,000 was available.

Q9 In what other ways does Epilepsy Action support researchers?
Epilepsy Action can promote research studies and help with recruitment. We also advise on and facilitate active Patient and Public involvement in research (PPI). This is about enabling people affected by epilepsy to get involved in different stages of the research process, including the development of a study. In addition, we are involved in a number of proposed and ongoing studies, acting as partner, stakeholder, collaborator, supporter or advisor.

Q10 Does Epilepsy Action provide opportunities for people with epilepsy to get involved in research?
Epilepsy Action is committed to ensuring that people with epilepsy can be actively involved in research and has acknowledged expertise in Patient and Public Involvement in research (PPI).We have a network of research volunteers who review our funding applications and contribute to consultations for external research teams. We believe that this helps to ensure that the research we fund and support is relevant and important to people living with epilepsy. We also recognise that people with epilepsy are enthusiastic about responding to questionnaires and taking part in studies and trials. Epilepsy Action regularly advertises such opportunities on its website, in its publications and through social media.

Q11 What kinds of research does Epilepsy Action carry out?
Epilepsy Action regularly carries out surveys to evaluate our work, inform the development of services and support our campaigning. We also work with NHS Trusts and other organisations to help with evaluation and development of epilepsy services.

Background information

Epilepsy Action is a member of Association of Medical Research Charities (AMRC). This means we comply with the AMRC’s statements on peer review, the use of animals in medical research and supporting research in universities.

Further reading

Further information about Epilepsy Action research http://www.epilepsy.org.uk/research.