Evidence Library

Title: Patient involvement in clinical research: why, when, and how
Author: Sacristan J A; Aguaron A; Avendano-Sola C; Garrido P; Carrion J; Gutierrez A; Kroes R; Flores A
Date Published: 2016
Reference: Patient preference & adherence 10, 631-40
Are service users or carers authors: Yes

Abstract: The development of a patient-centered approach to medicine is gradually allowing more patients to be involved in their own medical decisions. However, this change is not happening at the same rate in clinical research, where research generally continues to be carried out on patients, but not with patients. This work describes the why, when, and how of more active patient participation in the research process. Specific measures are proposed to improve patient involvement in 1) setting priorities, 2) study leadership and design, 3) improved access to clinical trials, 4) preparation and oversight of the information provided to participants, 5) post-study evaluation of the patient experience, and 6) the dissemination and application of results. In order to achieve these aims, the relative emphases on the ethical principles underlying research need to be changed. The current model based on the principle of beneficence must be left behind, and one that upholds the ethical principles of autonomy and non maleficence should be embraced. There is a need to improve the level of information that patients and society as a whole have on research objectives and processes; the goal is to

External link: The following links will take you to information on this entry on an external website. INVOLVE is not responsible for the content or the reliability of the external websites. Click here

Related entry: none currently available

Categories: health
public health
Identifying topics, prioritising and commissioning
Designing research
Managing research
Undertaking research
Analysing and interpreting
Writing up and disseminating
Evaluating
journal article
Implementation and change
description of involvement in a research project

Date Entered: 2018/09/20

Date Edited: 2018/09/20

Additional Info: