title: Establishing the values for patient engagement (PE) in health-related quality of life (HRQoL) research: an international, multiple-stakeholder perspective.
abstract: 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.
  
  
  
  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.
  
  
  
  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.
  
  
  
  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.
authors.affiliation: Royal College of Nursing Research Institute, Department of Health Sciences, Warwick Medical School, University of Warwick, Coventry, UK. K.L.Haywood@warwick.ac.uk.
authors.forename: Kirstie
authors.identifier: 0000-0002-5405-187X
authors.initials: K
authors.lastname: Haywood
authors.affiliation: , Ingersoll, ON, Canada.
authors.forename: Anne
authors.initials: A
authors.lastname: Lyddiatt
authors.affiliation: Warwick Clinical Trials Unit, University of Warwick, Coventry, UK.|Independent Cancer Patient Voice (Reg Charity no. 1138456), London, UK.
authors.forename: Samantha J
authors.initials: SJ
authors.lastname: Brace-McDonnell
authors.affiliation: Royal College of Nursing Research Institute, Department of Health Sciences, Warwick Medical School, University of Warwick, Coventry, UK.
authors.forename: Sophie
authors.initials: S
authors.lastname: Staniszewska
authors.affiliation: The School of Life and Medical Sciences, University of Hertfordshire, Hatfield, UK.
authors.forename: Sam
authors.initials: S
authors.lastname: Salek
mesh_terms: D006304:Health Status; D006801:Humans; D038622:Internationality; D010358:Patient Participation; D011788:Quality of Life; D012107:Research Design
keywords: HRQoL; Patient engagement; Patient involvement; Patient-reported outcomes; Values