Engaging patients to understand their experiences and expectations of rewards, recognition and remuneration for patient involvement

Summary

Meaningful patient involvement in the design, delivery and evaluation of services is vital to ensuring better health and care outcomes for patients, yet the practice of how the NHS partners with patients and values their contributions is inconsistent.

The Patients Association has partnered with NHS England in the East of England region to explore how patients and people with lived experience want to be rewarded, recognised and remunerated (paid) when they support the NHS to improve services. 

Content

The report highlights five 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 for organisations to build into policies and principles for patient involvement: 

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.