PE Quality Criterion* | Brief description and rationale | Practical illustrations† |
1. Shared purpose |
Brief description: This refers to the importance of all stakeholders agreeing on the project’s aims and outcomes before starting the project. Rationale: Early involvement is a key factor for quality of the process and includes the consideration of all perspectives in the early phase of planning.40 |
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2. Respect and accessibility |
Brief description: This refers to (1) respecting each other, and respectful interactions within the project to be established among partners, and (2) openness to and inclusion of individuals and communities (to the project) without discrimination. Rationale: A key quality aspect is the importance of securing a supportive culture that reflects that all stakeholders acknowledge the patients’ perspective as equally important to that of other professional or authoritative stakeholders.41 Practical steps must be taken to ensure access for all.42 |
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3. Representativeness of stakeholders |
Brief description: This refers to the mix of people involved, which should reflect the needs of the project, and the interests of those who may benefit from project outputs. Rationale: Ensuring optimal representativeness is demanding but essential for any PE activity43 and involves careful consideration of the selection of patient representatives. For example, appointed patient representatives in committees may often be particularly resourceful relating to their disease and treatment, and it becomes important to consider how to ensure perspectives of less resourceful patients are considered. |
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4. Roles and responsibilities |
Brief description: This refers to documentation of agreed and ideally co-created roles and responsibilities, indicating that all aspects of project needs will be established upfront and revisited regularly. Rationale: Clarity on roles and responsibilities of all partners is essential for the implementation of equitable working practices that ensure PE opinions and expertise are respected and incorporated where possible into PE projects. |
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5. Capacity and capability for engagement |
Brief description: This refers to (1) capacity as having relevant and dedicated resources from all stakeholders and (2) capabilities for all stakeholders to enable meaningful engagement. Rationale: It is essential that everyone has sufficient knowledge and skills to contribute effectively. This includes the professionals having sufficient PE knowledge and skills as well as patients having sufficient trials knowledge. |
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6. Transparency in communication and documentation |
Brief description: This refers to the establishment of communications plan and ongoing project documentation that can be shared with stakeholders. Communication among stakeholders must be open, honest and complete. Rationale: Transparent communications throughout the project both internally and externally is essential to ensure credibility of process and findings. Publication of protocols and results of all trials is increasingly recognised as essential for the effective and ethical evaluation of clinical products.44 45 |
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7. Continuity and sustainability |
Brief description: This refers to the smooth progression of the project and efforts to maintain relationships with stakeholders beyond a single project. Rationale: Involvement of patients throughout the process as much as feasible, including aspects such as evaluation, dissemination and implementation can be very beneficial for the quality of the process.46 Additionally, ongoing commitment to PE and development of long-term relationships will enhance quality. |
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*Adapted from: National Standards for Public Involvement. Available at: http://www.invo.org.uk/wp-content/uploads/2018/06/Public_Involvement_Standards_v1.pdf (Accessed 21 June 2018). Practical illustrations sourced from the Book of Good Practices (version 1). Available at: https://involvement-mapping.patientfocusedmedicine.org/book-of-good-practices (Accessed 21 January 2019).
†The superscript numbers (1–7) following each practical illustration refers to the example number in the Book of Good Practices: 1, Example 6; 2, Example 7; 3, Example 4; 4, Example 8; 5, Example 1; 6, Example 3; 7, Example 2.