caa a22 4500 60618015X CHVBK 20210128100804.0 cr unu---uuuuu 210128e20150501xx s 000 0 eng 10.1007/s11136-014-0796-3 doi (NATIONALLICENCE)springer-10.1007/s11136-014-0796-3 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 [Elektronische Daten] [Kirstie Haywood, Jo Brett, Sam Salek, Nancy Marlett, Colin Penman, Svetlana Shklarov, Colleen Norris, Maria Santana, Sophie Staniszewska] 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 90min. 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. Springer International Publishing Switzerland, 2014 Patient engagement in research nationallicence Patient and public involvement nationallicence Health-related quality of life research nationallicence Patient-reported outcomes nationallicence World café nationallicence ISOQOL nationallicence Haywood Kirstie University of Warwick, Coventry, UK aut Brett Jo University of Warwick, Coventry, UK aut Salek Sam Cardiff University, Cardiff, UK aut Marlett Nancy University of Calgary, Calgary, Canada aut Penman Colin University of Calgary, Calgary, Canada aut Shklarov Svetlana University of Calgary, Calgary, Canada aut Norris Colleen University of Alberta, Edmonton, Canada aut Santana Maria University of Calgary, Calgary, Canada aut Staniszewska Sophie University of Warwick, Coventry, UK aut Quality of Life Research Springer International Publishing 24/5(2015-05-01), 1069-1076 0962-9343 24:5<1069 2015 24 11136 https://doi.org/10.1007/s11136-014-0796-3 text/html Onlinezugriff via DOI BK010053 XK010053 XK010000 Metadata rights reserved Springer special CC-BY-NC licence nationallicence 1 research-article jats NATIONALLICENCE NATIONALLICENCE NL-springer NATIONALLICENCE 856 40 https://doi.org/10.1007/s11136-014-0796-3 text/html Onlinezugriff via DOI NATIONALLICENCE 700 1- Haywood Kirstie University of Warwick, Coventry, UK aut NATIONALLICENCE 700 1- Brett Jo University of Warwick, Coventry, UK aut NATIONALLICENCE 700 1- Salek Sam Cardiff University, Cardiff, UK aut NATIONALLICENCE 700 1- Marlett Nancy University of Calgary, Calgary, Canada aut NATIONALLICENCE 700 1- Penman Colin University of Calgary, Calgary, Canada aut NATIONALLICENCE 700 1- Shklarov Svetlana University of Calgary, Calgary, Canada aut NATIONALLICENCE 700 1- Norris Colleen University of Alberta, Edmonton, Canada aut NATIONALLICENCE 700 1- Santana Maria University of Calgary, Calgary, Canada aut NATIONALLICENCE 700 1- Staniszewska Sophie University of Warwick, Coventry, UK aut NATIONALLICENCE 773 0- Quality of Life Research Springer International Publishing 24/5(2015-05-01), 1069-1076 0962-9343 24:5<1069 2015 24 11136