Patient involvement in clinical research: why, when, and how
José A Sacristán,1 Alfonso Aguarón,2 Cristina Avendaño-Solá,3 Pilar Garrido,4 Juan Carrión,5 Alipio Gutiérrez,6 Robert Kroes,7 Angeles Flores11Medical Department, Lilly Spain, 2Myeloma Patients Europe, 3Research Ethics Comm...
| Main Authors: | , , , , , , , |
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| Format: | Article |
| Language: | English |
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Dove Medical Press
2016-04-01
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| Series: | Patient Preference and Adherence |
| Subjects: | |
| Online Access: | https://www.dovepress.com/patient-involvement-in-clinical-research-why-when-and-how-peer-reviewed-article-PPA |
| _version_ | 1818943860081950720 |
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| author | Sacristán JA Aguarón A Avendaño-Solá C Garrido P Carrión J Gutiérrez A Kroes R Flores A |
| author_facet | Sacristán JA Aguarón A Avendaño-Solá C Garrido P Carrión J Gutiérrez A Kroes R Flores A |
| author_sort | Sacristán JA |
| collection | DOAJ |
| description | José A Sacristán,1 Alfonso Aguarón,2 Cristina Avendaño-Solá,3 Pilar Garrido,4 Juan Carrión,5 Alipio Gutiérrez,6 Robert Kroes,7 Angeles Flores11Medical Department, Lilly Spain, 2Myeloma Patients Europe, 3Research Ethics Committee, University Hospital Puerta de Hierro, 4Oncology Department, Hospital Ramón y Cajal, 5FEDER (Spanish Federation for Rare Diseases), 6National Association of Health Journalists, Madrid, Spain; 7Clinical Open Innovation, Lilly Europe, Amsterdam, the Netherlands 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.Keywords: patients, research, clinical trials, bioethics, engagement |
| first_indexed | 2024-12-20T07:34:02Z |
| format | Article |
| id | doaj.art-83bd85e9e65a462ea17b9bce74e33a29 |
| institution | Directory Open Access Journal |
| issn | 1177-889X |
| language | English |
| last_indexed | 2024-12-20T07:34:02Z |
| publishDate | 2016-04-01 |
| publisher | Dove Medical Press |
| record_format | Article |
| series | Patient Preference and Adherence |
| spelling | doaj.art-83bd85e9e65a462ea17b9bce74e33a292022-12-21T19:48:20ZengDove Medical PressPatient Preference and Adherence1177-889X2016-04-012016Issue 163164026667Patient involvement in clinical research: why, when, and howSacristán JAAguarón AAvendaño-Solá CGarrido PCarrión JGutiérrez AKroes RFlores AJosé A Sacristán,1 Alfonso Aguarón,2 Cristina Avendaño-Solá,3 Pilar Garrido,4 Juan Carrión,5 Alipio Gutiérrez,6 Robert Kroes,7 Angeles Flores11Medical Department, Lilly Spain, 2Myeloma Patients Europe, 3Research Ethics Committee, University Hospital Puerta de Hierro, 4Oncology Department, Hospital Ramón y Cajal, 5FEDER (Spanish Federation for Rare Diseases), 6National Association of Health Journalists, Madrid, Spain; 7Clinical Open Innovation, Lilly Europe, Amsterdam, the Netherlands 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.Keywords: patients, research, clinical trials, bioethics, engagementhttps://www.dovepress.com/patient-involvement-in-clinical-research-why-when-and-how-peer-reviewed-article-PPApatientsresearchclinical trialsbioethics |
| spellingShingle | Sacristán JA Aguarón A Avendaño-Solá C Garrido P Carrión J Gutiérrez A Kroes R Flores A Patient involvement in clinical research: why, when, and how Patient Preference and Adherence patients research clinical trials bioethics |
| title | Patient involvement in clinical research: why, when, and how |
| title_full | Patient involvement in clinical research: why, when, and how |
| title_fullStr | Patient involvement in clinical research: why, when, and how |
| title_full_unstemmed | Patient involvement in clinical research: why, when, and how |
| title_short | Patient involvement in clinical research: why, when, and how |
| title_sort | patient involvement in clinical research why when and how |
| topic | patients research clinical trials bioethics |
| url | https://www.dovepress.com/patient-involvement-in-clinical-research-why-when-and-how-peer-reviewed-article-PPA |
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