Bringing patients and health researchers closer together: patient involvement in a study on patient-reported outcomes in cancer consultations

Research output: Contribution to conferenceConference abstract for conferenceCommunication


Patient involvement in health research may improve quality and relevance. However, little is known about how and when patients are best involved. In a study investigating the effect of using patient-reported outcomes (PRO) as a dialogue-based tool in oncology consultations, patients and researchers engaged in co-production in several phases of the research process. The aim was to gain knowledge and experience with the impact on both process and results.

A steering group with two patients and six researchers was established in 2017. In the design and management phase, the steering group selected relevant PRO-measures and constructed the patient information sheet. In the phase of analysis, the steering group analyzed audiotaped consultations using the VR-CoDES coding system. Disseminating the results of the analysis will be planed in the steering group.

This work demonstrates the contribution and time-consumption of patient involvement in a research project. Patients advocated for PRO-measures that enable discussions with both clinicians and relatives in the consultation, which was not considered by the researchers beforehand. The title and wording of the information sheet were adjusted according to the patients’ suggestions. Arranging meetings, considerations about the extent of involvement and death of involved patients were challenging elements in the process. The analysis and the dissemination of the results have just begun.

Knowledge and experiences about involving patients in different phases of the research can be applied to other settings and projects where patients are seen as partners in the research process.
Original languageEnglish
Publication year28 Jan 2019
Publication statusPublished - 28 Jan 2019
EventBorgerinddragelse i forskning 2.0 - Auditorium O100, Syddansk Universitet, Campusvej 55, Odense, Denmark
Duration: 28 Jan 201928 Jan 2019


ConferenceBorgerinddragelse i forskning 2.0
LocationAuditorium O100, Syddansk Universitet, Campusvej 55
Internet address

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