ArticleBMC health services research2019
Co-design of a patient experience survey for arthritis central intake: an example of meaningful patient engagement in healthcare design.
Article in BMC health services research, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 14 papers, 1 of them a synthesis 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.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
14 citing papers in PubMed, 1 synthesis or guideline pooled it, 19 citations in OpenAlex.
- Patient research partner involvement in rheumatology research: a systematic literature review informing the 2023 updated EULAR recommendations for the involvement of patient research partners.Annals of the rheumatic diseases · 2024Pooled it
- Article
- Initial Co-Design Development of a Questionnaire to Measure Patient Preferences in a Danish Mental Healthcare Setting.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Moving forward, leaving the patients behind? A multilevel assessment framework for evaluating patient-centred, integrated care quality.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026Review
- EULAR recommendations for the involvement of patient research partners in rheumatology research: 2023 update.Annals of the rheumatic diseases · 2024Article
- Cystic Fibrosis Experience of Care Survey: Patient-Caregiver-Clinician Collaborative Design and Implementation.Journal of patient experience · 2024Article
- Roles, outcomes, and enablers within research partnerships: A rapid review of the literature on patient and public involvement and engagement in health research.Research involvement and engagement · 2023Review
- Impact of patient partner co-design on survey development in primary care research: Case study.Canadian family physician Medecin de famille canadien · 2022Article
- Methods to Generate Innovative Research Ideas and Improve Patient and Public Involvement in Modern Epidemiological Research: Review, Patient Viewpoint, and Guidelines for Implementation of a Digital Cohort Study.Journal of medical Internet research · 2021Review
- Article
- Patients as partners in health research: A scoping review.Health expectations : an international journal of public participation in health care and health policy · 2021Article
- Embedding patient voices inCMAJ : Canadian Medical Association journal = journal de l'Association medicale canadienne · 2021Article
- Using a co-design process to develop an integrated model of care for delivering self-management intervention to multi-morbid COPD people in rural Nepal.Health research policy and systems · 2021Article
- Person-centred data collection methods to embed the authentic voice of people who experience health challenges.BMJ open quality · 2020Review
Corrections and comments
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Authors and funding
7 authors at 2 institutions in 1 country.
Funding
Abstract
backgroundTo describe the process of patient engagement to co-design a patient experience survey for people with arthritis referred to central intake.
methodsWe used a participatory design to engage with patients to co-design a patient experience survey that comprised three connected phases: 1) Identifying the needs of patients with arthritis, 2) Developing a set of key performance indicators, and 3) Determining the survey items for the patient experience survey.
resultsPatient recommendations for high quality healthcare care means support to manage arthritis, to live a meaningful life by providing the right knowledge, professional support, and professional relationship. The concept of integrated care was a core requirement from the patients' perspective for the delivery of high quality arthritis care. Patients experience with care was ranked in the top 10 of 28 Key Performance Indicators for the evaluation of central intake, with 95% of stakeholders rating it as 9/10 for importance. A stakeholder team, including Patient and Community Engagement Researchers (PaCER), mapped and rated 41 survey items from four validated surveys. The final patient experience survey had 23 items.
conclusionThe process of patient engagement to co-design a patient experience survey, for people with arthritis, identified aspects of care that had not been previously recognized. The linear organization of frameworks used to report patient engagement in research does not always capture the complexity of reality. Additional resources of cost, time and expertise for patient engagement in co-design activity are recognized and should be included, where possible, to ensure high quality data is captured.
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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.