Establishing the values for patient engagement (PE) in health-related quality of life (HRQoL) research : an international, multiple-stakeholder perspective
| Autor: | Kirstie L. Haywood, Sophie Staniszewska, Sam Salek, Anne Lyddiatt, Samantha J. Brace-McDonnell |
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| Jazyk: | angličtina |
| Rok vydání: | 2017 |
| Předmět: |
medicine.medical_specialty
Internationality Health Status Best practice media_common.quotation_subject Patient engagement Article HRQoL 03 medical and health sciences 0302 clinical medicine RZ Honesty Credibility Humans Relevance (law) Medicine 030212 general & internal medicine Patient involvement media_common Medical education Patient-reported outcomes business.industry Impact assessment 030503 health policy & services Public health Perspective (graphical) Public Health Environmental and Occupational Health Values Research Design Family medicine Quality of Life Patient Participation 0305 other medical science business |
| Zdroj: | Quality of Life Research |
| ISSN: | 0962-9343 |
| Popis: | PURPOSE:\ud 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.\ud METHODS:\ud 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.\ud RESULTS:\ud 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.\ud CONCLUSIONS:\ud 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. |
| Databáze: | OpenAIRE |
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