This report presents the findings of a project commissioned by NHS England – East of England to support them in developing guidance for the reward, recognition and remuneration of patients who share their personal experiences to improve health and care services.

The project aimed to understand patients’ experiences and expectations of involvement through a national survey that gathered 622 responses and a focus group involving five participants from diverse backgrounds, all based in the East of England.

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The research identified 5 key findings:

1. Patients get involved because they want their experiences to be heard and to make a difference for others.
2. While payment isn’t the main reason most patients share their experience, it helps to increase participation, especially for those from marginalised and underrepresented groups. Fair payment shows that their experiences and contributions are valued.
3. Good involvement treats patients as partners. It values their contributions, ensures that their voices are heard, and keeps them informed about how their feedback is used to improve care.
4. Poor involvement feels like a box-ticking exercise. It excludes patients, ignores their contributions and lacks transparency. Patients may feel dismissed and never see the impact of their input.
5. Inclusivity matters. Involvement opportunities should focus on being accessible to all by addressing barriers, be they social, cultural, physical, financial or other. If only certain voices are heard, services may overlook the needs of marginalised and underrepresented groups, worsening health inequalities.

Based on these findings, the report makes five recommendations:

1. Ensure guidance on reward, recognition and remuneration is holistic
2. Prioritise inclusivity and accessibility in patient involvement to tackle health inequalities
3. Emphasise the creation of safe and empowering environments for patient feedback
4. Strengthen patient partnership in practice and champion its adaptation across systems
5. Simplify processes and minimise barriers to patient involvement

The report concludes that while fair reward, recognition, and remuneration is vital for meaningful patient engagement, they represent only one part of a broader approach that is needed. Any guidance must reflect a holistic perspective that values the intrinsic motivations of patients and diversifies participation with a particular focus on those from marginalised and underrepresented communities to drive genuine improvements in health and care services.

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Acknowledgments

We would like to thank the 622 patients who completed our survey and the five patients we spoke to either individually or as part of a focus group for sharing their thoughts and experiences to enable us to develop this report.

We would also like to thank NHS England – East of England for funding this project and enabling us to provide a platform for patients to share their experiences and expectations of being rewarded, recognised and remunerated for their involvement in developing health and care systems.