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:
- Attending Patient Information Days to learn about ongoing research.
- Following research updates through our Research Zone, newsletters and social media.
- 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?