ArticleBMJ quality & safety2019
Patients' perspective on how to improve the care of people with chronic conditions in France: a citizen science study within the ComPaRe e-cohort.
Article in BMJ quality & safety, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 20 papers, 1 of them a synthesis that pooled it.
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Who cites it
20 citing papers in PubMed, 1 synthesis or guideline pooled it, 47 citations in OpenAlex.
- The experience of financial burden for people with multimorbidity: A systematic review of qualitative research.Health expectations : an international journal of public participation in health care and health policy · 2021Pooled it
- Managing unresolved issues of addiction during cancer treatment: A qualitative study about cancer care providers' representations.PloS one · 2020Trial
- Codeveloping a Set of Quality of Care Indicators for People Living With Multiple Long-Term Conditions in Primary Care: Protocol for a Modified RAND/UCLA Study.JMIR research protocols · 2026Article
- Patient preferences for key organizational features of primary cardiovascular care in Quebec: a discrete choice experiment.BMC primary care · 2025Article
- Oral hygiene behaviors and periodontitis among patients with chronic diseases and its impact on tooth loss and oral health-related quality of life: a cross-sectional study of data from the ComPaRe e-cohort.Clinical oral investigations · 2024Article
- Citizen Science Studies in Nursing: A Systematic Review.Nursing reports (Pavia, Italy) · 2024Review
- Leveraging Patients' Creative Ideas for Innovation in Health Care.The Milbank quarterly · 2024Article
- Patients' Perspectives on Transforming Clinical Trial Participation: Large Online Vignette-based Survey.Journal of medical Internet research · 2022Article
- Toward a digital citizen lab for capturing data about alternative ways of self-managing chronic pain: An attitudinal user study.Frontiers in rehabilitation sciences · 2022Article
- Patients' perception of safety climate in Irish general practice: a cross-sectional study.BMC family practice · 2021Article
- 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
- Preferences for Alternative Care Modalities Among French Adults With Chronic Illness.JAMA network open · 2021Article
- The Effect of Foot Reflexology on Chemotherapy-Induced Nausea and Vomiting in Patients With Digestive or Lung Cancer: Randomized Controlled Trial.JMIR cancer · 2021Article
- Priorities to improve the care for chronic conditions and multimorbidity: a survey of patients and stakeholders nested within the ComPaRe e-cohort.BMJ quality & safety · 2021Article
- Parents' ratings of post-discharge healthcare for their children born very preterm and their suggestions for improvement: a European cohort study.Pediatric research · 2021Article
- Disease Progression in Multiple Sclerosis: A Literature Review Exploring Patient Perspectives.Patient preference and adherence · 2021Review
- Patient involvement in quality improvement - a 'tug of war' or a dialogue in a learning process to improve healthcare?BMC health services research · 2020Article
- The Effects of Foot Reflexology on Chemotherapy-Induced Nausea and Vomiting in Patients with Digestive System or Lung Cancer: Protocol for a Randomized Controlled Trial.JMIR research protocols · 2020Article
- Proceedings from the 3rd European Clinical Consensus Conference for clinical trials in device-based hypertension therapies.European heart journal · 2020Article
- Patients, caregivers and health-care professionals' experience with an interdisciplinary intervention for people with multimorbidity in primary care: A qualitative study.Health expectations : an international journal of public participation in health care and health policy · 2020Article
Corrections and comments
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Authors and funding
5 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundThis study aimed to involve patients with chronic conditions in generating ideas for improving their care.
methodsWe performed a citizen science study. Participants were adult patients with chronic conditions recruited in Community of Patients for Research 'ComPaRe,' a French e-cohort of patients with chronic conditions. Participants generated ideas to improve their care in answer to the open-ended question, 'If you had a magic wand, what would you change in your healthcare?' Three researchers and two patients independently extracted ideas from open-ended answers by using thematic analysis. Ideas were grouped into areas for improvement at the consultation, hospital/clinic and health system levels. Findings were validated and enriched by a second sample of participants recruited in ComPaRe.
resultsBetween May 2017 and April 2018, a total of 1636 patients provided 3613 ideas to improve consultations (1701 ideas related to 58 areas for improvement), hospitals/clinics (928 ideas related to 41 areas for improvement) and the health system (984 ideas related to 48 areas for improvement). At the consultation level, most ideas were related to improving physician-patient discussions, informing patients about their own care, and adapting treatment to patient preferences and context. At the hospital/clinic level, most ideas aimed at improving the coordination and collaboration in care. At the health system level, most ideas were related to decreasing the administrative burden imposed on patients, improving access to care and reducing the costs of care.
conclusionPatients have many ideas to improve their care, from the content of consultations to the organisation of hospitals. Our study provides the proof of concept for a method to leverage patients' practical knowledge of the care system to improve it.
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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.