Summary of principles and suggestions for implementation
| Principle | Exploring this principle in your approach | Suggestions for implementation |
| 1) Patient partnership should be part of the culture of research projects – projects benefit when patients are embedded in the development, governance, delivery and dissemination | Recognise the value that patient representatives bring Consider how to balance patient and researcher priorities Understand the importance of engaging patients at all stages of the research process | Provide guidance and training to support patients in their role and dedicate resources to patient input Tailor opportunities to the needs and capacity of the patient representatives Use a range of tools and opportunities to foster patient partnership across the research process |
| 2) Patients and carers are experts by experience | Value the unique insight that patients bring Recognise the individual and systemic biases that make it harder for patient voices to be heard Listen to patient partners to understand where their experiences differ from those of professional partners | Create specific and intentional opportunities to gather patient perspectives Channel patient input into the aspects of research where patients have unique and relevant insight Be aware of the challenges patients may face during meetings and develop ways of working that foster collaboration |
| 3) Inclusive opportunities allow patients and carers with diverse backgrounds to enrich the project | Research benefits from involving a diverse group of patient representatives Patient representatives can play a role in gathering experiences from their wider community Remove some of the barriers that patients face, including financial, health, language and social inequalities | Provide open, inclusive and accessible opportunities for patients to get involved Consider ways to make project findings accessible to diverse patient audiences |
| 4) Measuring and recognising the impact of patient and carer input into the project helps to demonstrate its value and creates opportunities to improve practice | Demonstrating the impact of patient involvement helps to motivate patient and professional partners Look beyond the individual project to understand how patient input has an impact on the wider community | Monitor, report and celebrate the impact that patient representatives have had Contribute to the literature by sharing your experience of the benefits and challenges around patient involvement Consider how individual patient representatives can share learnings with their communities |