Haywood, Kirstie L., Lyddiatt, Anne, Brace-McDonnell, Samantha J., Staniszewska, Sophie and Salek, Sam (2017) Establishing the values for patient engagement (PE) in health-related quality of life (HRQoL) research : an international, multiple-stakeholder perspective. Quality of Life Research, 26 (6). pp. 1393-1404. doi:10.1007/s11136-016-1465-5

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Abstract

PURPOSE:
Active patient engagement is increasingly viewed as essential to ensuring that patient-driven perspectives are considered throughout the research process. However, guidance for patient engagement (PE) in HRQoL research does not exist, the evidence-base for practice is limited, and we know relatively little about underpinning values that can impact on PE practice. This is the first study to explore the values that should underpin PE in contemporary HRQoL research to help inform future good practice guidance.
METHODS:
A modified 'World Café' was hosted as a collaborative activity between patient partners, clinicians and researchers: self-nominated conference delegates participated in group discussions to explore values associated with the conduct and consequences of PE. Values were captured via post-it notes and by nominated note-takers. Data were thematically analysed: emergent themes were coded and agreement checked. Association between emergent themes, values and the Public Involvement Impact Assessment Framework were explored.
RESULTS:
Eighty participants, including 12 patient partners, participated in the 90-min event. Three core values were defined: (1) building relationships; (2) improving research quality and impact; and (3) developing best practice. Participants valued the importance of building genuine, collaborative and deliberative relationships-underpinned by honesty, respect, co-learning and equity-and the impact of effective PE on research quality and relevance.
CONCLUSIONS:
An explicit statement of values seeks to align all stakeholders on the purpose, practice and credibility of PE activities. An innovative, flexible and transparent research environment was valued as essential to developing a trustworthy evidence-base with which to underpin future guidance for good PE practice.

Item Type:	Journal Article
Alternative Title:
Subjects:	R Medicine > RZ Other systems of medicine
Divisions:	Faculty of Medicine > Warwick Medical School > Health Sciences > Clinical Trials Unit Faculty of Medicine > Warwick Medical School > Health Sciences > Warwick Research in Nursing > Royal College of Nursing Research Institute (RCN) (- July 2017) Faculty of Medicine > Warwick Medical School
Library of Congress Subject Headings (LCSH):	Patient participation, Quality of life, Medical policy
Journal or Publication Title:	Quality of Life Research
Publisher:	Springer Netherlands
ISSN:	0962-9343
Official Date:	June 2017
Dates:	Date Event June 2017 Published 8 December 2016 Available 23 November 2016 Accepted
Date of first compliant deposit:	5 January 2017
Volume:	26
Number:	6
Number of Pages:	12
Page Range:	pp. 1393-1404
DOI:	10.1007/s11136-016-1465-5
Status:	Peer Reviewed
Publication Status:	Published
Access rights to Published version:	Open Access

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