Membership research and strategy – Epilepsy Action

Epilepsy Action (EA) is the UK’s leading charity supporting people affected by epilepsy. With over 7,000 members, they provide information, advocacy, and community services, while working to improve understanding of epilepsy nationwide.

As governance reforms and a shifting membership landscape emerged, EA wanted to redefine the role of membership and ensure it better supports their mission and wider community.

Membership challenge

EA needed a clearer understanding of how membership is perceived and what role it should play within the organisation. The purpose of membership was not well defined, with uncertainty over whether it should focus on income generation, community-building, advocacy, or influence.

At the same time, some benefits were seen as less relevant, particularly where core services are freely available. Membership was not fully integrated across service delivery, volunteering, or communications, and many highly engaged supporters were not members—often due to confusion or limited perceived value.

The membership base also did not fully reflect the diversity of EA’s wider audience, highlighting the need for a more inclusive and accessible approach.

Member research and strategy development – what we did

We designed a multi-phase research programme combining workshops, surveys, and focus groups to explore the needs and perceptions of both members and non-members.

This work provided a clear view of how different audiences engage with EA, what drives value, and where barriers exist. We also reviewed existing data and communications to understand how membership fits within the broader supporter journey.

Building on these insights, we developed and modelled a range of future membership options, including more flexible and accessible approaches, and worked with EA to shape a clear, evidence-based membership strategy.

Impact

This research helped Epilepsy Action to:

With these insights, Epilepsy Action is now better equipped to evolve its membership into a more relevant, inclusive, and strategically aligned offer.

Transform your membership experience

Want to understand your members better and boost engagement? Our research can help you unlock deeper insights and deliver a more personalised experience. Get in touch to see how we can support your membership strategy. Contact us today on 0345 955 5155 or email us at 

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