Involving patients in projects
Information for colleagues
By including patients, carers, and communities in your research and improvement activities, you bring in real-world insights, lived experience, and ideas that can lead to better, more meaningful outcomes.
Whether you're developing a new service, testing a change, or designing a study, even small steps to involve people early on can make a big difference, and with support, it becomes easier, more natural, and more rewarding - for staff and patients alike.
The value of patient participation
Brings new perspectives
Patients see things staff may not - their lived experience helps identify gaps, priorities, and opportunities that might otherwise be missed.
Leads to more relevant and practical solutions
When patients are involved from the start, the work is more likely to meet real needs and work in real life.
Improves the quality and credibility of your work
Co-designed projects are more thoughtful, better tested, and more likely to be trusted and supported by the people they’re designed for.
Boosts impact and engagement
When people feel ownership of a project, they’re more likely to champion it, use it, and help spread it, making your work go further.
Builds a culture of partnership and learning
Working side by side with the public helps build stronger relationships, encourages shared learning, and makes teams feel more connected to the people they support.
"It challenges us, inspires us, and ultimately makes our work stronger."
Including patients and the public in your research and improvement isn’t just a ‘nice to have’ - it’s a smart, valuable, and powerful way to make change that really matters.
Potential obstacles and how we can support you
Involving people with lived experience leads to better outcomes, but it’s not always easy. Here are some of the common challenges you might be concerned about, how you could navigate them and how we can help:
Possible challenge: In busy clinical roles, it can feel like there's no time for public involvement.
How to move forward:
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Starting small - even one conversation can make a difference.
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Building involvement into existing project stages (e.g. planning or feedback).
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Asking for support - we can help you plan and facilitate involvement.
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Possible challenge: Worrying about doing it ‘wrong’ or not knowing where to start.
How to move forward:
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Reaching out to us for advice, support and guidance.
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Using tools, templates, and case studies that we've provided.
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Connecting with others who’ve done it before - shared learning helps build confidence.
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Possible challenge: Fear of low interest or poor uptake from the public.
How to move forward:
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Being open, respectful, and clear about why involvement matters.
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Offering flexible, meaningful ways for people to contribute, not just a seat at the table, but a voice in the process.
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Promoting opportunities through networks like Side-by-Side.
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Possible challenge: Involvement doesn’t feel meaningful or well-integrated.
How to move forward:
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Involving people from the beginning, not just at the end.
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Creating space for real dialogue, listening, and shared decision-making.
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Reflecting with the participants on what changed as a result of their input.
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Possible challenge: Not sure if (or what) reimbursement participants can receive.
How to move forward:
In recognition of participant contributions, the trust is committed to taking a consistent approach to the payment and reimbursement process. This guide sets out when, how, and how much we offer to pay people, and contains information about expenses, and further support. You can download the guide here.
In recognition of participant contributions, the trust is committed to taking a consistent approach to the payment and reimbursement process. This guide sets out when, how, and how much we offer to pay people, and contains information about expenses, and further support. You can download the guide here.
Possible challenge: Unsure about ethics, consent, or governance required for people to participate.
How to move forward:
Ethics and governance are about protecting people, not creating barriers.
We will provide all of the support and guidance you might need in order to include patients and the public in your work.
