ArticleQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2017
Establishing the values for patient engagement (PE) in health-related quality of life (HRQoL) research: an international, multiple-stakeholder perspective.
Article in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 22 papers, 3 of them syntheses that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
22 citing papers in PubMed, 3 syntheses or guidelines pooled it.
- The immaturity of patient engagement in value-based healthcare-A systematic review.Frontiers in public health · 2023Pooled it
- What do we want to get out of this? a critical interpretive synthesis of the value of process evaluations, with a practical planning framework.BMC medical research methodology · 2022Pooled it
- Assessing the impact of headaches and the outcomes of treatment: A systematic review of patient-reported outcome measures (PROMs).Cephalalgia : an international journal of headache · 2018Pooled it
- Building the future of patient-centred research: an EULAR PARE community of practice advancing patient research partner involvement in rheumatology.EULAR rheumatology open · 2026Article
- Embedding public and patient involvement in childhood stuttering research: lessons learned from engaging children and families in Saudi Arabia.Research involvement and engagement · 2026Article
- Enhancing patients' role in scientific writing: insights from a global participatory approach with people with multiple sclerosis.Research involvement and engagement · 2025Article
- Implementing Systematic Patient-Reported Measures for Chronic Conditions Through the Naveta Value-Based Telemedicine Initiative: Observational Retrospective Multicenter Study.JMIR mHealth and uHealth · 2024Observational
- Exploring the outcomes of research engagement using the observation method in an online setting.BMJ open · 2023Article
- Introduction to the special section "Reducing research waste in (health-related) quality of life research".Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2022Article
- Article
- What Can We Learn From a Human-Rights Based Approach to Disability for Public and Patient Involvement in Research?Frontiers in rehabilitation sciences · 2022Article
- Review
- Patient Engagement Partnerships in Clinical Trials: Development of Patient Partner and Investigator Decision Aids.The patient · 2020Article
- Patient-reported outcome measures for retinoblastoma: a scoping review.Journal of patient-reported outcomes · 2020Article
- Use of a modified World Café process to discuss and set priorities for a Community of Practice supporting implementation of ReQoL a new mental health and quality of life Patient Reported Outcome Measure (PROM).Journal of patient-reported outcomes · 2020Article
- Partnering with patients in healthcare research: a scoping review of ethical issues, challenges, and recommendations for practice.BMC medical ethics · 2020Article
- Minding the gap: identifying values to enable public and patient involvement at the pre-commencement stage of research projects.Research involvement and engagement · 2020Article
- Public involvement in health research: what does 'good' look like in practice?Research involvement and engagement · 2020Article
- The FOsmetpantotenate Replacement Therapy (FORT) randomized, double-blind, Placebo-controlled pivotal trial: Study design and development methodology of a novel primary efficacy outcome in patients with pantothenate kinase-associated neurodegeneration.Clinical trials (London, England) · 2019Article
- Patient engagement in Canada: a scoping review of the 'how' and 'what' of patient engagement in health research.Health research policy and systems · 2018Article
Corrections and comments
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Authors and funding
5 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
purposeActive 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.
methodsA 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.
resultsEighty 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.
conclusionsAn 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.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.