What patients want: developing new principles for recognising patient contributions in health and care Written by Tom O'Connor, Head of Income Generation & Project Management. 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. About the project We recently 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. We engaged over 600 people through a national survey and focus groups, listening to their motivations, experiences, and expectations. While most people told us they got involved because they wanted to make a difference for others, they also said fair reward for their time and effort matters. For many, especially those from marginalised or underrepresented communities, some form of payment or remuneration makes it easier to take part. It also signals that their contribution is valued by the system. But patients also told us that recognition isn’t just about money. Instead, patients want to be treated as equal partners. Good involvement keeps everyone informed about how the experiences they share are used to improve services. It makes people feel heard, respected, and part of meaningful change. Poor involvement, characterised by a lack of feedback, follow up and transparency, can make things feel like a tick-box exercise rather than a meaningful effort to listen to patients. The report highlights five key findings: Patients get involved because they want their experiences to be heard and to make a difference for others. 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. 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. 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. 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, we make five recommendations for organisations to build into policies and principles for patient involvement: Ensure guidance on reward, recognition and remuneration is holistic Prioritise inclusivity and accessibility in patient involvement to tackle health inequalities Emphasise the creation of safe and empowering environments for patient feedback Strengthen patient partnership in practice and champion its adaptation across systems Simplify processes and minimise barriers to patient involvement We’re grateful to the patients who completed the survey and took part in focus groups for sharing their thoughts and experiences. We would also like to thank NHS England - East of England for 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. What’s Next? A number of Integrated Care Boards (ICBs) in the East of England are now collaborating to use these findings and develop overarching principles and behaviours that NHS organisations can refer to when shaping their local approaches to reward, recognition and remuneration. These will promote consistency, fairness and inclusion across the region before being shared nationally. Manage Cookie Preferences