Background This study aimed to involve patients with chronic conditions in generating ideas for improving their care.
Methods We 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.
Results Between 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.
Conclusion Patients 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.
- chronic disease
- quality of healthcare
- citizen science
- patient participation
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Contributors Generated the idea: VTT and PR. Conceived and designed the experiments: VTT and PR. Collected data: VTT and PR. Analysed data: VTT, CR, CP, AC and PR. Wrote the first draft of the manuscript: VTT. Contributed to the writing of the manuscript: VTT, CR, CP, AC and PR. Agree with manuscript results and conclusions: VTT, CR, AC and PR. VTT is the guarantor, had full access to the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.
Funding ComPaRe was funded by the Assistance Publique-Hôpitaux de Paris (APHP) and Paris Descartes University.
Disclaimer The authors have no association with commercial entities that could be viewed as having an interest in the general area of the submitted manuscript.
Competing interests None declared.
Patient consent for publication Obtained.
Ethics approval ComPaRe was approved by the Institutional Review Board of Hôtel-Dieu Hospital, Paris (IRB: 0008367).
Provenance and peer review Not commissioned; externally peer reviewed.
Data availability statement Data are available upon reasonable request.