Involvement in practice

Approaches to Involvement

Approaches can range from informing and consulting to collaborating and co-producing. These approaches can overlap, shift over time, or be used in combination depending on:

• What the project needs.
• What people are comfortable with.
• Capacity and access.
• What stage the research is at.

It’s okay to start small, as long as people are informed and valued. You can move between approaches as trust and capacity grow. The most important thing is to be clear and intentional:

• What is the purpose of involvement?
• What are people being invited into?
• How can we make this feel meaningful and inclusive?

Here’s a breakdown of four common approaches:

Consultation

Consultation means seeking input or advice from people, such as community members, people with lived experience, or service users at specific points in a project. Researchers listen to people’s views but retain control over decisions. It’s a helpful way to make sure the research is more relevant and responsive, but the power largely stays with the research team.

Examples:

• Asking people what research questions matter to them.
• Getting feedback on participant information sheets or study posters.
• Holding a focus group to understand how findings should be shared.

Collaboration

Collaboration means working together with public partners on specific parts of a project, bringing in different knowledge, skills, or lived experience to strengthen the work. There is an ongoing dialogue and more shared work and influence, but the overall research decisions may still be led by the academic team.

Examples:

• A researcher and a community group developing interview questions together.
• A public partner helping to analyse qualitative data.
• Working with the public to create an accessible toolkit.

Co-production

Co-production means working as equal partners throughout the entire research process, from defining the questions to sharing the results. It is about shared power, responsibility, and ownership. Everyone’s knowledge is valued equally whether academic, professional, or personal.

Examples:

• People with lived experience co-designing the project, approaches and analysis.
• Shared decisions about what the findings mean and how they are used.
• Co-authoring outputs, or co-presenting at events or conferences.

Service-user-led

People with lived experience lead the research themselves, from setting the topic to analysing and sharing results. Researchers or professionals may support the process, but do not direct it. This approach challenges traditional power dynamics by promoting ownership and centres around the insights and priorities of the people most affected.

Examples:

• A group of people living with dementia designing and running their own research study.
• Projects like Dementia Enquirers where people with dementia lead on what gets explored and how.

Key differences at a glance

Consultation

Core idea: Seeking input and perspectives.

Who drives the work: Researchers retain decisions.

Collaboration

Core idea: Working together on key activities.

Who drives the work: Decisions on tasks are often shared.

Co-production

Core idea: Equal partnership throughout.

Who drives the work: Shared ownership and decision making.

Service user-led

Core idea: Centring user priorities and leadership.

Who drives the work: People with lived experience lead the research.

Note

• These are not fixed categories. Projects often blend or move across approaches.
• Power sharing and influence increase as you move towards collaboration and co-production but all forms of involvement can be valuable when done with clarity and respect.
• It’s essential to offer choice and flexibility, especially when involving people living with dementia.
• Start where people and the project are, not where a framework says you should be, and grow involvement from there.