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Gepubliceerd in: Quality of Life Research 5/2015

01-05-2015 | Patient Engagement Special Section

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

Auteurs: Kirstie Haywood, Jo Brett, Sam Salek, Nancy Marlett, Colin Penman, Svetlana Shklarov, Colleen Norris, Maria Jose Santana, Sophie Staniszewska

Gepubliceerd in: Quality of Life Research | Uitgave 5/2015

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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.


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.


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.


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.

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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
Kirstie Haywood
Jo Brett
Sam Salek
Nancy Marlett
Colin Penman
Svetlana Shklarov
Colleen Norris
Maria Jose Santana
Sophie Staniszewska
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 5/2015
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649

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