We exist to improve the lives
of everyone affected by epilepsy

Our research strategy

Epilepsy Action strategic research plan 2017 – 2021

Epilepsy Action has a strategic plan for the period 2017-21. Our research activity supports and complements this strategy.

When developing the research strategy, we considered:

  • Epilepsy Action's strategic priorities and
  • Externally identified research priorities and gaps

Our focus

Research will not be considered or developed in isolation. All research related activity will focus on supporting Epilepsy Action’s strategic goals to:

  • Improve the quality and availability of healthcare services for people with epilepsy and
  • Improve awareness and understanding of epilepsy

Our research activity will contribute to our strategic plan to:

  1. Train and support people to be champions for epilepsy
  2. Continue to seek ways to improve our service and reach more people with new ideas
  3. Offer up-to-date, accurate and accessible advice and information that is tailored to the needs of people affected by epilepsy
  4. Develop and provide materials for clinical professionals
  5. Develop and provide materials for NHS commissioners (these are the people who plan and purchase NHS services, to meet the health needs of a local population)
  6. Influence clinical guidelines and standards of care
  7. Provide advice and information about what good epilepsy care looks like and campaign for improvements to reduce seizures
  8. Survey services and advertise what’s available and where
  9. Survey patient satisfaction levels and peoples’ needs and we will use the results to inform and lead improvement campaigns
  10. Support people to access better services
  11. Support epilepsy specialist nurses
  12. Promote and provide self-management training and epilepsy-related training in healthcare, care homes and home care
  13. Identify ways to measure public awareness of epilepsy and changes in social attitudes to the condition
  14. Identify, celebrate and promote examples of positive action or good practice relating to the employment of people with epilepsy
  15. Identify and challenge specific examples of discrimination, prejudice or unfairness relating to the employment of people with epilepsy.

Our research aims

Epilepsy Action has five research aims. These are:

1. Fund research projects that enable delivery of our strategic plans

2. Support researchers into epilepsy. This includes:

  • Getting people with epilepsy and their family/carers involved
  • Advising on their approach to the research
  • Making documents easier to read for wide audiences

3. Partner and work with other researchers

4. Campaign for more research into epilepsy, including making the case for more government funding for epilepsy research

5. Provide outlets for the sharing of research findings

1. Fund research projects

Our research study priorities are:

  • An assessment of local epilepsy services
  • The benefits of epilepsy specialist nurses
  • Looking at how effective different ways of delivering self-management training are
  • Epilepsy and ageing
  • Measuring public awareness of epilepsy
  • Identifying barriers to employment
  • Finding out ways to measure that Epilepsy Action is achieving its goals, set out in the 2017-2021 strategy
 
We will fund research on the following topics, if funds become available:
 
  • Understanding why some people with epilepsy also develop another condition, for example depression or autism
  • Epilepsy and learning disability
  • How to make sure that existing treatments for epilepsy are as effective as possible

2. Support researchers into epilepsy

Supporting the research activities of others enables Epilepsy Action to play a visible and influential role in research.

Our contributions are valued by researchers. We are able to involve people with epilepsy in research design, and to help share the results to interested audiences.

Activities to support researchers include:

  • Offering advice and guidance on study design
  • Providing the opportunity to hear the thoughts of people with epilepsy and their families/carers about their research
  • Advertising for research participants
  • Making documents easier to read for wide audiences
  • Sharing the results of research with people who are interested

3. Partner and work with other researchers

We will work with and partner other epilepsy charities on research topics of mutual interest. We will partner with other researchers, supporting them to get funding for their projects.

4. Campaign for more research into epilepsy. This includes making the case for more government funding for epilepsy research

As members of the AMRC (Association of Medical Research Charities) and Neurological Alliance, we support their campaigning and lobbying activity to promote more research.

We will work with other epilepsy charities, to present a co-ordinated and consistent lobby for more government funding for epilepsy research.

5. Provide outlets for the sharing of research findings

We will do this by:

  • Publishing Seizure, the European Journal of Epilepsy
  • Developing the research section of our website
  • Sharing findings in our publications Epilepsy Professional and Epilepsy Today
 
 

Delivering our research plan

The operational delivery of Epilepsy Action’s research is the responsibility of the Epilepsy Services Manager supported by the Research and Evaluation Officer. The Research Committee is responsible for overseeing the delivery of the research strategy, monitoring performance and plans. The Research Committee reports to the Council of Management.

Membership of the AMRC (Association of Medical Research Charities

Epilepsy Action is a member of the AMRC (Association of Medical Research Charities). All members use peer review to select the best research to fund. Peer review is when a piece of work, such as a research proposal, is checked by a group of experts in that field. Their role is to give their professional opinion on whether the research is well designed and is likely to achieve what it sets out to find out.

We will limit the areas of research we fund but will continue to:

  • Follow AMRC principles of peer review and AMRC's policies on animal research
  • Publish a research strategy to show how our research benefits people with epilepsy
  • Have a conflicts of interest policy for our scientific advisory panels, so that all funding decisions are fair

Epilepsy Action’s research strategy is to focus on non-laboratory research into epilepsy, so we do not fund research using animals. However, as a member of the Association of Medical Research Charities (AMRC), we support the principle of using animals in research. But this is only when it is absolutely necessary to advance understanding of health and disease or to develop new treatments. This research should only take place where there are no other viable techniques available.

All AMRC member charities support this principle, as outlined in this statement.

  • Updated November 2014
    To be reviewed November 2017

Comments: read the 2 comments or add yours

Comments

I am Moses Kerry from Papua New Guinea. I am thankful for the information and help provided here in this website. My family has a history of epilepsy, i believe we inherited. its very sad to see those of my family, uncle, aunty and sister who has suffer the physical, social and mental consequences of epilepsy. In PNG many people are also suffering from epilepsy, leaving many of the patient medically untreated and physically susceptible to many harm, injuries and early dead. In reality, the research and knowledge into epilepsy in PNG is limited and many people are unaware of epilepsy. Majority of the epilepsy patient in PNG are silently suffering physically and socially. It is my dream to address the health and social issue of epilepsy in my country and established better care and support centre for people with epilepsy.More research and awareness is needed for epilepsy in PNG which will lead to better health and social support for people suffering from epilepsy.
Finally my appeal is, as a postgraduate student and very interested in epilepsy research, i like to be part of the Epilepsy Action through its external research support, partnership and collaboration into epilepsy cases in PNG. I wil be very gratefull if given the opportunity and support to pursur my studies into epilipesy.

Thank you.

Moses Kerry

Submitted by Moses Kerry on

Hi Moses
Thank you for your message. We are so lucky in the UK to have good services for people with epilepsy. It must be really hard in your country.

I have been looking for any organisation which may help you. I have found the International Bureau for Epilepsy’s Western Pacific Regional Committee.

I do hope that’s useful for you.

And I look forward to the day when people with epilepsy all over the world have equal access to treatment.

Cherry
Epilepsy Action
Advice and Information Team

Submitted by Cherry, Epileps... on