ArticleQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2015
Beyond lip service and box ticking: how effective patient engagement is integral to the development and delivery of patient-reported outcomes.
Article in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 36 papers.
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
36 citing papers in PubMed.
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- A new treatment approach to conduct disorder and callous-unemotional traits: an assessment of the acceptability, appropriateness, and feasibility of Impact VR.Frontiers in psychiatry · 2025Article
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- Science for tomorrow's neurosurgery: insights on establishing a neurosurgery patient group focused on developing novel intra-operative imaging techniques.Research involvement and engagement · 2024Article
- Yoga as an adjunct treatment for eating disorders: a qualitative enquiry of client perspectives.BMC complementary medicine and therapies · 2024Article
- How does staff and patient feedback on hospital quality relate to mortality outcomes? A provider-level national study.Health services management research · 2024Article
- Challenges and promising solutions to engaging patients in healthcare implementation in the United States: an environmental scan.BMC health services research · 2024Article
- The impact of COVID-19 on PRO development, collection and implementation: views of UK and Ireland professionals.Journal of patient-reported outcomes · 2023Article
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- Global use of electronic patient-reported outcome systems in nephrology: a mixed methods study.BMJ open · 2023Review
- Reflections of patient and public involvement from a commissioned research project evaluating a nationally implemented NHS programme focused on diabetes prevention.Research involvement and engagement · 2023Article
- Oncology Providers' and Professionals' Experiences With Suicide Risk Screening Among Patients With Head and Neck Cancer: A Qualitative Study.JCO oncology practice · 2023Article
- Increasing consumer engagement: tools to engage service users in quality improvement or implementation efforts.Frontiers in health services · 2023Article
- Mapping the role of patient and public involvement during the different stages of healthcare innovation: A scoping review.Health expectations : an international journal of public participation in health care and health policy · 2022Article
- The mutual benefits of patient and public involvement in research: an example from a feasibility study (MoTaStim-Foot).Research involvement and engagement · 2021Article
- A rapid realist review of patient engagement in patient-oriented research and health care system impacts: part one.Research involvement and engagement · 2021Review
- Ethical considerations for engaging frail and seriously ill patients as partners in research: sub-analysis of a systematic review.Research involvement and engagement · 2021Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors.
Funding
Abstract
backgroundIn the UK, demonstration of patient and public involvement (PPI) is now a funding requirement. Despite advice being available to researchers regarding PPI, levels of engagement are variable. Patient involvement has been at the core of the Leeds Psychosocial Oncology and Clinical Practice Research Group since 2007 when a local Research Advisory Group (RAG) was established. In addition, we work with experienced patient advocates from national groups.
methodsThe RAG is led by designated researchers who manage and communicate with members. The RAG is invited to twice yearly meetings with the full research team when study findings are disseminated and advice sought. The meetings are also an opportunity to socialise and thank members. Effective partnerships and engagement require good communication, building relationships over time and tailoring involvement to individuals' skills and experience.
resultsPatients have been involved in design, planning new projects and assisting with grant proposals; development, pilot testing of interview strategies and question generation, project steering groups and management teams, development of self-management advice for online patient portals; implementation, extensive beta testing of new questionnaire builder software to enable collection of online patient-reported outcomes (PRO) and study websites, cognitive interviews to develop PRO items; dissemination, co-authorship of papers and presentations, attendance/representation of the group at conferences.
conclusionThe involvement of patient advocates is integral to ensuring PRO development remains patient-centred. Having a co-operative, well-established local PPI group and nationally active patient collaborators has had a rewarding and significant impact on our research programmes.
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25577498What OpenQuestion holds
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.