The impact of patient involvement in research: a case study of the planning, conduct and dissemination of a clinical, controlled trial

Research Involvement and Engagement
Pernille Christiansen SkovlundKirsten Lomborg

Abstract

The interest in patient and public involvement (PPI) in health research is increasing. However, the experience and knowledge of PPI throughout the entire research process and especially in the analysis are limited. We explored ways to embrace the perspectives of patients in a research process, and the impact and challenges our collaboration has had on patients, researchers, and the research outcomes. This is an explorative single case study of a Danish, clinical, controlled intervention trial and a nested intervention fidelity study included herein. Five patient representatives with metastatic melanoma were part of designing, undertaking and disseminating the trial where the effect of using patient-reported outcome (PRO)-measures as a dialogue tool in the patient-physician consultation was tested. In the fidelity study, audio-recorded consultations were analyzed after training in the Verona Coding Definitions of Emotional Sequences (VR-CoDES). Results were jointly disseminated at an international scientific conference. The outcomes, impact, and challenges were explored through a workshop. In the design phase, we selected PRO-measures and validated the dialogue tool. The information sheet was adjusted according to the patients' ...Continue Reading

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Citations

Jan 27, 2021·Current Oncology·J NeedhamD Nomikos
Mar 7, 2021·BMC Family Practice·Georgios Dimitrios KarampatakisKath Ryan
May 1, 2021·Current Oncology·Stéphanie MichaudBarry D Stein
Jul 15, 2021·BMC Medical Informatics and Decision Making·Ye King Clarence SeeBernadette Bartlam

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Methods Mentioned

BETA
Cognitive Behavioural Therapy

Software Mentioned

Finset
CoDES
Verona Coding Definitions of Emotional Sequences ( VR - CoDES )
VR
INVOLVE

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