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Cited by 363

The DOI matches its Crossref record; 82 of the 82 references it cites were found in a registry or an index.

Patient involvement in clinical research: why, when, and how

Open access
Sacristan, Jose A, Aguaron, Alfonso, Avendaño, Cristina, Garrido, Pilar, Carrion, Juan, Gutierrez, Alipio, Kroes, Robert, Flores, Angeles·2016·Patient Preference and Adherence
DOI 10.2147/ppa.s104259
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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 promote the gradual emergence of the expert patient.

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Metadata

Authors
Sacristan, J. A., Aguaron, A., Avendaño, C., Garrido, P., Carrion, J., Gutierrez, A., Kroes, R., & Flores, A.
Venue
Patient Preference and Adherence
Publisher
Informa UK Limited
Published
2016-04
Volume
10
Pages
631
ISSN
1177-889X (ISSN-L)
DOI
10.2147/ppa.s104259
OpenAlex
W2342690669
Cited by
363
References
82
FWCI
19.04
Type
journal article
Language
en
Open access
gold
Licence
creativecommons.org/licenses/by-nc/3.0/ (vor)

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