EPIC Patient and Public Involvement and Engagement (PPIE)

How families and carers can get involved.

The idea for the EPIC Project came directly from families. Because of this, it is essential that we design and deliver the project with the people who have first-hand experience of childhood epilepsy. This is what we call ‘co-production’, a form of Patient and Public Involvement and Engagement (PPIE) and it is at the heart of our approach.

What is co-production?

Co-producing a research project is an approach in which researchers, practitioners and the public work together, sharing power and responsibility from the start to the end of the project, including the generation of knowledge.

National Institute for Health and Care Research, 2024

For EPIC, this means involving families who have lived experience of childhood epilepsy, at every stage of the project. There will be ongoing PPIE opportunities for families to get involved in the project and their insights will shape how the project evolves.

We will also work closely with clinicians (health professionals) working with children to ensure the EPIC project develops tools that will be useful and supported in clinical practice. There will be ongoing opportunities for clinicians to be involved in the project in various ways.

We want the outcomes of the EPIC Project to be meaningful and practical for those navigating infantile spasms. By co-producing each element, we hope to ensure that what we create is both usable and responsive to the current unmet needs in diagnosing infantile spasms.

What is PPIE?

Patient and Public Involvement and Engagement (PPIE) means working with people who have lived experience of a condition, such as family members and carers of children with infantile spasms, to shape research. This ensures that the work we are doing is relevant, respectful, and useful. 

What does a PPIE member do?

Throughout the EPIC Family project, there will be various activities you can get involved in, including:

  • helping us understand what matters most to families
  • advising on technology
  • giving feedback on how we have designed the research
  • reviewing information materials for people taking part in our studies
  • contributing to sharing our results and ensuring the right people are informed about it and in an appropriate way.

Participation is very flexible. How often and how long you want to participate is completely up to you and you can change your mind at any time.

Who can get involved?

We welcome:

  • family members of children who have experienced infantile spasms
  • people with lived experience of childhood epilepsy.

You do not have to have any prior research experience or knowledge. We value your lived experience and perspective. Training opportunities will be available if you wish to get involved in specific activities on the project.

Do I have to be in Edinburgh to be a Family Representative?

No. We welcome Family Representatives from across the UK. We will host most of our meetings online, with some in-person opportunities.

Will I be paid for my time?

Yes, members of the team who have lived experience of Infantile Spasms are paid in accordance with national guidelines. We will share our Payment Policy with you alongside information on activities. We will also reimburse reasonable expenses including childcare and travel costs.

Upcoming opportunities

If you would like to hear about opportunities to get involved, want more information about specific opportunities or have any questions, please get in touch.

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