Research volunteers will help ensure that the research Epilepsy Action funds, carries out and supports is relevant and important to people whose lives are affected by epilepsy. They can do this by being actively involved in the research process.
Research volunteers should have a personal connection to epilepsy, such as living with the condition, or as a friend, carer or family member. No existing knowledge of research is required, just an interest and willingness to learn more.
Research volunteers can contribute to the research activities of Epilepsy Action and external researchers in any of the ways listed below. There is no obligation to get involved in all these opportunities. Volunteers may chose the one(s) that interest them the most.
• Reviewing grant applications
Applicants for Epilepsy Action research grants provide a description of their proposed research that is easily understandable to non-professionals (lay summary). Research volunteers are asked to read the lay summary, then score and comment. These comments are fedback to the applicants for responses.
• Monitoring progress of Epilepsy Action funded research
Researchers who hold Epilepsy Action grants are required to provide regular progress reports. From 2013, research volunteers may be asked to comment or raise questions on these reports.
• Reviewing research material for Epilepsy Action
Research volunteers may be asked to comment on questionnaires and other material that will be used in Epilepsy Action’s research projects.
• Reviewing articles from Seizure: European Journal of Epilepsy
Each month volunteers are asked to read the summaries of articles published in Seizure: European Journal of Epilepsy, and select the one they like best. There is also the opportunity to write a review of the article for the website. There are 10 issues of Seizure each year. For further see http://www.epilepsy.org.uk/research/seizure
• Becoming a research ambassador
Volunteers can have an important role in spreading the word about epilepsy research, particularly at Epilepsy Action’s branch meetings and local events. In 2013, materials and training will be developed for volunteers who may be interested in getting involved.
• Consultation on research proposals and research materials for external researchers
External research teams regularly ask Epilepsy Action for help when they are planning research studies. Research volunteers can get involved by giving their views on such areas as proposed methods and questionnaire design.
• Membership of steering or advisory groups for external research studies
Often steering or advisory groups have one or two non-professional members. Research councils and other funding bodies also recruit non-professionals to their boards. Epilepsy Action will keep volunteers informed of these opportunities. In 2013, training material will be developed for volunteers who may be interested in getting involved.
We realise that volunteers have work, family and other commitments, so may not be able to contribute on every occasion. Therefore, we offer flexibility for volunteers to take part at times that are convenient for them. Most of the work volunteers are asked to do can be carried out at home.
Volunteers will receive regular updates on opportunities to take part. While we will continue to ensure research volunteering opportunities are widely available and accessible, this needs to be balanced with the financial and staff resources available. As a result, contact between staff and volunteers will be mostly by email.
We know that some people find reading large amounts material electronically difficult. Therefore, material will be available in a format that can be downloaded and printed off. For large files, such as grant applications, paper copies may be requested. Most reviews will be carried out electronically or by email. Again, volunteers can return a paper review, time permitting.
There will be a named person at Epilepsy Action for you to contact, if you have any questions. Material on the website will give information on epilepsy research and carrying out your role. This can be made available in a printed format. In addition, optional training events will be held.