Patient advocacy group involvement in health technology assessments: an observational study

Abstract

Plain English summary What are health technology assessments? Health technologies are medicines, devices and services used to prevent, diagnose or treat medical conditions. A Health Technology Assessment (HTA) considers the value of a health technology to help governments make fair decisions about which treatments to fund or subsidise. Patients and Patient Advocacy Groups (PAGs) may be invited to provide input into this process. What did our study look at? We surveyed staff and patients from cancer PAGs in New Zealand (Aotearoa), South Korea and Taiwan to understand their experiences and expectations of involving patients in HTA. A total of 43 people completed our survey. What were the results? Overall, 20 of the 43 surveyed people (47%) were aware of the assessment process used to decide which medicines were funded in their country. (27 of these 50 people were PAG staff members.) Patients from South Korea and New Zealand were rarely included in the assessment process. Patient involvement was more commonly reported in Taiwan. The impact of input from patients on HTA was rated low by patients in both South Korea and New Zealand and average in Taiwan. A general lack of transparency, feedback on the process, and support from assessment agencies was also reported. Many of the patients surveyed wanted to see more patient involvement in the assessment processes. What is the main take-home message from this study? With improved guidance and feedback from assessment agencies, PAGs and patients believe their involvement can improve decision making on treatment funding and increase fairness through transparency.

Keywords

• Health technology assessment
• Patient advocacy group
• Decision-making
• Funding
• Reimbursement decisions
• Patient and public involvement