Patient and public engagement in health-related quality of life and patient-reported outcomes research: what is important and why should we care? Findings from the first ISOQOL patient engagement symposium

Purpose Recent years have witnessed growing international interest in the active involvement, or engagement [patient engagement (PE)], of patients and the public in health services research. However, there is limited evidence of the extent or impact of PE in health-related quality of life (HRQL) and patient-reported outcomes (PRO) research. Therefore, in October 2013, the International Society for Quality of Life research (ISOQOL) hosted its first symposium, which sought to explore the potential for PE in this field. Methods A 'World Café' format encouraged the exploration of three 'menu' questions' in small groups at round tables. Views, opinions and concerns were captured. A thematic analysis was undertaken, and key themes listed. Results Sixty conference attendees participated in the 'PE Café', which lasted for 90 min. A diversity of experience was communicated, with most participants positive about the potential for PE. Similarities and differences in approaches, barriers and solutions were identified. However, a key message focused on the uncertainty about how to effectively engage with patients throughout the research process. Moreover, the lack of evidence-base demonstrating the impact of PE was a significant concern. No patient partners participated in the meeting. Conclusion This study describes the first international exploration of PE in HRQL and PRO research. Discussions highlighted that, in the absence of good practice guidelines, a framework or toolkit of how to embed PE within HRQL and PRO research is required. Moreover, this framework should support the rigorous evaluation of PE impact. ISOQOL should be instrumental in taking these ideas forward, actively engaging with patient partners towards shaping a future ISOQOL PE strategy.