We strongly believe that people with epilepsy, and their families, should be at the centre of any research into the condition. This includes in the selection, design, application and dissemination of a project.
Below are some ways we can help you with this.
Facilitating patient and public involvement
Most funding bodies, including the National Institute for Health Research (NIHR), expect patient and public involvement from the outset of any research project.
We can help with this, by facilitating access to the Epilepsy Action Research Volunteer Network (EARN).
EARNs are people with epilepsy and others with a personal interest in the condition. They may be involved in many aspects of a research project, including:
- Commenting on research proposals
- Being a member of a steering or advisory group
- Commenting on research materials, including participant information
- Helping with dissemination
Find out more about patient and public involvement in research
Publicising your project and recruiting participants
The following resources are available:
- Epilepsy Action website
- forum4e – our online community of people with epilepsy and carers
- Social media – Facebook and Twitter
- Epilepsy Today magazine
- Epilepsy Professional magazine
- A bi-weekly newsletter to epilepsy specialist nurses
- Local branches, groups and events
- Epilepsy Action’s network of research volunteers (EARNs)
- Databases of healthcare professionals with an interest in epilepsy
Hosting online surveys
Using SNAP software, we can format your survey, host it and then provide you with the data.
Wherever possible, we will facilitate patient and public involvement, providing that the research:
- Is in the interests of our members, clients and stakeholders
- Will not compromise the organisation in any way
You should be studying at postgraduate level, at a UK university.
You should be affiliated to a UK university, NHS Trust or similar research institution.
You must provide a reference from someone familiar with their work.
Your request will be considered on an individual basis.
National and local
Epilepsy Action will co-operate with national and local government bodies, where the project is relevant and in the interests of people with epilepsy.
Market research companies
While respecting issues around confidentiality, we will seek to establish the identity of the client and the purpose of the research.
Pharmaceutical firms should be members of the ABPI, or comply with the ABPI code:
External funders of epilepsy research
We will advertise information about research funding offered by other charities and organisations on our website.
Commercial companies seeking to advertise products or services
We take paid advertising in our magazines Epilepsy Today and Epilepsy Professional. We will refer you to our communications manager for more information on these.
We may charge you a fee for using our services. As a minimum, we will seek to recover any actual costs incurred by us by fulfilling your request.
However, we do recognise that valuable research may be lost should full financial compensation be required. Therefore, we are willing to discuss any issues regarding payment.
Where a fee is not charged, a donation to Epilepsy Action would be greatly appreciated: Make a donation
Please note: Researchers are advised to ensure they include all costs for the recruitment, consultation and involvement of the public in their project budget. The National Institute for Health research can offer support for applying for funding.
Requirements of Epilepsy Action
We require the users of our research resources to:
- Acknowledge the support of Epilepsy Action in any written material, including funding applications, reports and articles
- Acknowledge the support of Epilepsy Action in any written or oral presentations
- Supply us with a short summary of the results, for possible inclusion in our publications and website
- Supply us with copies of any articles or presentations arising from the research
Data protection and governance
Epilepsy Action’s data protection policy states that we will not pass on any contact details held on members, clients and supporters to a third party.
Applicants to our research resource scheme should be aware that all research may carry risks to participants. You are advised to determine if your research requires any ethical or research governance approval. Where this is the case, you should demonstrate you have received, or are seeking, appropriate approval. Where approval is judged not to be required, the reason should be explained.
Please download and complete the Research resources application form, then return to Amanda Stoneman: firstname.lastname@example.org
All requests to use our research resources are monitored at our head office. They must be approved before access can be granted.
Please do not:
- Post your project directly on our Facebook page or Forum4e - these will be removed
- Contact any local branches or groups directly – any requests will be referred to our head office
By publicising any study or project, this does not mean that this has Epilepsy Action approval or that we recommend people with epilepsy should take part. Nor does it imply that allowing access to our research resources Epilepsy Action is in any way the sponsor of the research and, therefore, not liable for any claims concerning negligence, harm or oversight that might arise during the course of the research.
For further information, and to discuss how we may be able to help you, please contact Amanda Stoneman, Research and evaluation officer
Tel: 0113 210 8805
- Updated July 2016To be reviewed July 2019