As part of the formative work of the SUCCEED Africa consortium, we followed a participatory process to identify existing gaps and resources needed for the development and implementation of a rights-based intervention for people with lived experience of psychosis in Malawi, Nigeria, Sierra Leone and Zimbabwe.

In 2021, we conducted a desk review of published and grey literature on psychosis in the four SUCCEED countries. Using an adapted version of the PRIME situation analysis template, data were extracted across the five domains of the WHO Community-Based Rehabilitation (CBR) Matrix: health, education, livelihoods, social and empowerment. This was supplemented with insights from personal communications with key stakeholders and the lived and professional experiences of team members.

Findings indicate that people with lived experience of psychosis have limited access to services and opportunities across the five CBR domains. Participation in social, religious, empowerment and political activities is restricted due to stigma and a lack of advocacy.

People with lived experience of psychosis in SUCCEED countries are not generally able to access support in line with essential components of CBR. There is a need for their greater inclusion in policy and advocacy activities.

Objectives: Some countries make considerable effort to involve patients and patient groups in their health technology assessment (HTA) processes; others are only just considering or are yet to consider patient involvement in HTA.

Methods: This commentary offers four arguments why patient involvement should be prioritized by those HTA agencies that do not yet involve patients: (1) from a patients’ rights perspective, (2) based on patient and community values, (3) centering on evidentiary contributions, and (4) from a methodological perspective.

Results: The first argument builds on the Alma-Ata Declaration, which holds that patients have a right and duty to have a say in the planning and delivery of their health care, individually and collectively. Where HTA is used to determine access to technologies and services, we argue that patients have a right to be heard. The second argues that decisions about treatments and services need to be aligned with the core values and morals of the patients whom the health system serves. The third argues that patients have unique knowledge and insights about living with a health condition and their needs for services and treatments regarding that condition, which can add to the knowledge base and value of the HTA process. The fourth argues that involvement of patients can facilitate methodological advancement of HTA, in areas such as early scientific advice and managed entry with evidence development.

Conclusions: An HTA process that includes patient perspectives can, therefore, provide added value to patients, policy makers and healthcare professionals alike.