Epilepsy Action supports researchers and students by advertising for people to take part on the website, Forum4e and publications. In addition, Epilepsy Action often runs surveys that ask people about their experiences of and views on epilepsy. Panel members can help by taking part in epilepsy research studies.
Panel members will have:
• Experience of epilepsy as a patient, carer, relative, friend or family member
• An interest in being involved in epilepsy research by completing surveys, taking part in interviews, focus groups or tests
Patient panel members will be informed of studies and projects that are recruiting people to take part. Opportunities that are advertised on the Epilepsy Action website www.epilepsy.org.uk/research/take-part/projects-you-can-take-part-in have been assessed and approved by the charity. Members will also be kept informed of surveys and research being carried out by Epilepsy Action. Below are examples of some things panel members may be asked to do, if they agree to take part in a study:
• Completing surveys or questionnaires
Increasing this will be carried out online or electronically. However, most researchers will supply paper copies of questionnaires, if requested.
• Being interviewed
The researcher may wish to gather more in-depth information than a questionnaire can provide. Therefore, they may need to do individual interviews. These can take place in your home, or a place that is convenient to you. Interviews may also be conducted by telephone or Skype. People interviewed outside their home will usually have their expenses paid and may be offered a fee for taking part.
• Focus groups
A focus group is a structured discussion, led by a researcher. There is normally another person there who takes notes of the discussion. People attending a focus group will usually have their expenses paid and may be offered a fee for taking part.
From time to time members may be asked for their views on research, Epilepsy Action’s work or other issues around epilepsy.
Mostly research studies need to recruit specific groups of people, such as those newly diagnosed, patients who have particular kinds of seizures or parents of children with epilepsy. Therefore, members may not be eligible to take part in some studies. In additions, some studies may be restricted to particular areas of the UK. Most of the opportunities to take part can be carried out at home
Panel members will be kept informed of activities they can help with. 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 the panel will be mainly by email. However, surveys and other materials may be made available in other formats.
There will be a named contact at Epilepsy Action if you have any questions. Panel members will be given a welcome pack with an overview of epilepsy research.