Before you begin

Public involvement doesn’t start with a meeting; it starts with reflection and planning.
Take time to think through what meaningful involvement could look like for your project. It helps being clear, realistic and discuss expectations early. Involvement doesn’t have to cover everything, but it should always matter.

Use the list below to help you prepare before inviting people to join your project.

Involvement planning

Purpose

  • Why are you involving people?
  • Why it matters: Clarifies intent and helps avoid tokenism.
  • Consider: What are you hoping to learn or achieve through the involvement?

Justice

  • Who is being included or excluded?
  • Why it matters: Ensures fairness and relevance.
  • Consider: How can you create a space that is inclusive and welcoming?

Influence

  • What in your research can people help shape or change?
  • Why it matters: Links involvement to decision-making and impact.
  • Consider: Map your research timeline. At which stages of your project can people make a difference?

Approach

  • How will people be involved?
  • Why it matters: Supports clear expectations, appropriate roles and agency.
  • Consider: Is your approach flexible, respectful and proportionate?

Support

  • What support will people with dementia and carers need for them to be involved in your project?
  • Why it matters: Enables meaningful contribution and protects wellbeing.
  • Consider: Have you planned for access and emotional support?

Commitment

  • What time and input are you asking for?
  • Why it matters: Respects people’s time and builds trust.
  • Consider: Is the role clear, manageable, and fairly recognised?

Understanding the spectrum of involvement

Involvement can take many forms, and that’s completely fine. It’s a spectrum, not a hierarchy. What works best may vary between projects, different people, and at different stages of the work. The key is finding the right approach for each context.

Clarity and intention are key, not complexity. You can move between approaches and methods depending on capacity, stage, and preference. Here are some examples:

Consultation

  • Feedback on documents
  • Reviewing posters or leaflets
  • Joining one-off workshops

Collaboration

  • Co-designing interview questions
  • Shaping research priorities
  • Advising on data collection

Co-production

  • Joint decision-making on what research and how
  • Co-authoring or co-presenting outputs
  • Sharing leadership across project

Practical example

Ella, a PhD student, started planning early. She mapped her timeline and budget and realised that while full co-production wasn’t feasible throughout her work, she could:

  • Run a creative workshop to co-design participant facing materials with an existing group,
  • Involve two public partners in the analysis of the qualitative research, and
  • Host a feedback event with a mix of stakeholders for validation before final reporting.

She created an outline of the project and the role of a public partner, offered payment for time, and asked each person how they preferred to meet and if they had any access requirements. Her budget did not permit her to offer NIHR rates so she worked out what she could afford and provided clear information on this to all involved.

Other practical considerations

  • Create a role outline so people know what is expected.
  • Budget for involvement.
  • Check for access barriers, e.g. time of day, location, or travel requirements may exclude people unintentionally.
  • Flexibility matters. Involvement can evolve as the project and relationships grow.