How to make the perfect research ‘pie’ - Research Zone - The Lily Foundation - The Lily Foundation
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Welcome to The Lily Foundation’s Research Zone, your gateway to the latest breakthroughs, expert insights and cutting-edge developments in mitochondrial disease research.

How to make the perfect research ‘pie’

PPIE round-up

12 March 2025

Scientific research doesn’t happen in isolation. Just like baking a pie, creating successful treatments for mitochondrial disease requires the right recipe, ingredients and taste testers – and that’s where patients and families come in. Let’s break it down, slice by slice.

a recipe book on a table open at the prefct research pie recipe

Imagine the research process as being a bit like creating the perfect pie.

This pie isn’t made by the scientist (baker) alone. It takes a whole team, including patients and families, to bring it to the table.

When we talk about research, we often mention Patient Participation, Involvement and Engagement (PPIE). They might all sound similar, but each plays a unique role, and all are crucial to the success of future treatments for mitochondrial disease. Let’s break it down, slice by slice.

Involvement: designing the recipe with the baker

Involvement is about helping researchers decide what kind of pie to make and developing the recipe together. Patients and families share their lived experiences to shape the research recipe, identifying whether the pie should be sweet or savoury (deciding the most urgent symptoms to target), suggesting which ingredients (study outcomes) matter most and advising on the best way to bake the pie (helping to develop the study design). Without this step, researchers might create something that doesn’t taste quite right or meet the community’s needs.

Examples of involvement:

  • Joining advisory groups,  to set research priorities.
  • Reviewing study materials to make them more patient-friendly.
  • Helping design clinical trials to ensure they are practical and accessible.

You can help researchers to design the most successful pies by getting involved with our Patient Advisory Committee, IMPACT.

Participation: gathering the ingredients and baking the pie

Participation is about rolling up your sleeves and helping to make the pie. It means taking part in studies, contributing data, attending clinical visits or trying potential treatments in trials. Just as you can’t bake a pie without ingredients, researchers can’t move science forward without patients contributing their time, experiences and samples. Every participant helps the pie come closer to perfection.

Examples of participation:

  • Enrolling in natural history studies to track disease progression.
  • Joining clinical trials to test new treatments.
  • Contributing to patient registries to build a bigger research picture.

The best way to find out about research opportunities is via our UK trials and research studies. Additionally, many specialist hospitals maintain research databases and patients can ask about these at their next clinical appointment.

Engagement: telling people how good the pie is

Engagement is about the creators of the recipe (i.e. the research teams) sharing the pie with their customers. Here they spread the word about the research process, explaining what was involved in their research, the important role that patients and families have played and how their research fits into the overall goal of future treatments.

Engagement helps to break down barriers between the expert bakers (researchers) and the community (patients and families), raising awareness and inspiring more people to get involved. After all, a perfect pie is meant to be enjoyed by everyone.

Examples of engagement:

  • Sharing personal experiences to inspire others to participate.

The perfect pie needs every piece but not everyone has to bake

The best pies come together when everyone contributes what they can. Some people might help design the recipe but not bake the pie. Others might taste the pie and tell their friends, even if they didn’t help cook it. Every contribution is valuable, and not everyone has to be involved in every step.

The Lily Foundation community already plays an incredible role in helping researchers create the best possible ‘pie’ for mitochondrial disease. Whether you design the recipe, help gather the ingredients or spread the word, your involvement helps turn research into real treatments faster.

So, which piece of the pie do you want to be part of?

Learn more about how you can get involved