D: Assessing the quality of patient involvement

Despite the widespread recognition of the importance of patient involvement in HTA, there is a lack of consensus on how to assess the quality of patient involvement.

Observing guidelines provides a systematic approach to assessing the quality of patient involvement in HTAs based on the following principles:

1. Transparency: The process of patient involvement should be transparent, with clear and accessible information about how patients are involved, what their role is, and how their input is used.
2. Accountability: Patients and patient organisations should assume responsibility for their involvement in HTAs, and mechanisms should be established to ensure accountability.
3. Inclusiveness: Efforts must be made to ensure that individuals from diverse backgrounds and with different experiences are involved.
4. Impact: Patient involvement should have a meaningful impact on the HTA process and the resulting decisions. This can be assessed by examining factors such as the degree of patient input reflected in the HTA report and the influence of patient involvement on the decision-making process.
5. Capacity building: Organisations representing patients and patient advocates should have the capacity to participate effectively in HTAs. This includes having the necessary skills, knowledge, and resources.
6. Sustainability: The involvement of patients in these processes should be sustainable, with mechanisms in place to ensure that they continue over time.

Ensuring high-quality patient engagement requires adhering to specific criteria and skills, where a transparent and meritbased selection process is crucial to identifying suitable patient advocates. Patient organisations often face resource constraints, emphasising the need for accessible training and support. Collaborative efforts can help bridge the resource gap and empower patient advocates to participate effectively in the JCA framework.