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of everyone affected by epilepsy

Epilepsy Action Research Network member (EARN)

Epilepsy Action Research Volunteer Network (EARNs)

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The role of EARNs

As a membership organisation, we firmly believe that the people whose lives are affected by epilepsy should be able to have a say about:

  • What epilepsy research is carried out and
  • How this is done.

It is also important that people are aware of studies and trials they can take part in, if they want to.

What is the purpose of the role?

EARNs help to ensure that the research Epilepsy Action funds, carries out and supports is relevant and important to people whose lives are affected by epilepsy. They do this by being actively involved in the research process.

What’s involved?

EARNs may be involved in many aspects of research, including:

  • Working with researchers to plan and design their projects
  • Commenting on research proposals
  • Reviewing applications to Epilepsy Action for research funding
  • Being a member of a research project steering or advisory group
  • Commenting on and developing research materials, for example questionnaires and information leaflets for participants
  • Sharing and presenting the findings from research with everyone who might be interested
  • Taking part in a research project, for example by completing a questionnaire or participating in an interview or focus group

There is no obligation to get involved in all these opportunities. EARNs can choose the ones that interest them the most.

What skills and experience do I need?

  • Interest in epilepsy research
  • Be comfortable with the written word and communicating by email
  • Have a personal connection to epilepsy (self/family member/carer of person with epilepsy)
  • Live in the UK
  • Interest in learning more about epilepsy research
  • Have access to the internet and email

No existing knowledge of research is required, just an interest and willingness to learn more.

How long do I need to be available for and when?

This varies according to the task. EARNs choose which projects they want to be involved with and how much time they want to spend on them.

Will I need training?

Epilepsy Action is planning a training event towards the end of 2017, which successful applicants will be invited to.

We would prefer it if all EARNs could attend this event. If this is not possible, you can still apply to be an EARN, but you might not be offered the full range of opportunities of this role.

Will I need to travel?

This is unlikely, unless you become a member of a steering group or give a presentation. If this happens, we will pay reasonable expenses for any necessary travel as part of the role.

What have EARNs said about what they enjoy, or how they have benefitted from this role?

“As a carer for a partner with epilepsy, I like to feel I have a bit of knowledge and help to share. I can see the value of the research and am glad to be able to add a little.”

“It has helped tremendously with regards to gaining knowledge – especially epilepsy related, plus sometimes other conditions as well.”

“I enjoy helping with epilepsy research and giving people the benefit of my experience of living with epilepsy.”

“I am a parent/carer of person with epilepsy. I like to ensure that people with learning disabilities and epilepsy and their family members have their views expressed in research.”

“It has been very interesting and rewarding to help with different activities- such as research proposals; advising; opportunities to go to research conferences…”

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