Berit Kjærside Nielsen

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

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Bringing patients and health researchers closer together: patient involvement in a study on patient-reported outcomes in cancer consultations. / Skovlund, Pernille Christiansen; Lomborg, Kirsten; Thaysen, Henriette Vind; Schmidt, Henrik; Nielsen, Berit Kjærside.

2019. Abstract from Borgerinddragelse i forskning 2.0, Odense, Denmark.

Research output: Contribution to conferenceConference abstract for conferenceCommunication

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Skovlund, Pernille Christiansen et al. Bringing patients and health researchers closer together: patient involvement in a study on patient-reported outcomes in cancer consultations. Borgerinddragelse i forskning 2.0, 28 Jan 2019, Odense, Denmark, Conference abstract for conference, 2019.

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Bibtex

@conference{b49a594b3b2f46ccbf007b452e6c58e7,
title = "Bringing patients and health researchers closer together: patient involvement in a study on patient-reported outcomes in cancer consultations",
abstract = "AbstractBackgroundPatient 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.MethodsA 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. ResultsThis 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{\textquoteright} 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. PerspectivesKnowledge 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. ",
keywords = "Patient involvement, oncology, co-production, health research, patient reported outcomes",
author = "Skovlund, {Pernille Christiansen} and Kirsten Lomborg and Thaysen, {Henriette Vind} and Henrik Schmidt and Nielsen, {Berit Kj{\ae}rside}",
year = "2019",
month = jan,
day = "28",
language = "English",
note = "null ; Conference date: 28-01-2019 Through 28-01-2019",
url = "http://www.sdu.dk/borgerinddragelseiforskning",

}

RIS

TY - ABST

T1 - Bringing patients and health researchers closer together: patient involvement in a study on patient-reported outcomes in cancer consultations

AU - Skovlund, Pernille Christiansen

AU - Lomborg, Kirsten

AU - Thaysen, Henriette Vind

AU - Schmidt, Henrik

AU - Nielsen, Berit Kjærside

PY - 2019/1/28

Y1 - 2019/1/28

N2 - AbstractBackgroundPatient 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.MethodsA 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. ResultsThis 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. PerspectivesKnowledge 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.

AB - AbstractBackgroundPatient 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.MethodsA 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. ResultsThis 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. PerspectivesKnowledge 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.

KW - Patient involvement

KW - oncology

KW - co-production

KW - health research

KW - patient reported outcomes

M3 - Conference abstract for conference

Y2 - 28 January 2019 through 28 January 2019

ER -