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 accessAbstract
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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Cites
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Avoidable waste in the production and reporting of research evidence
Chalmers, I., & Glasziou, P. (2009) · The Lancet · doi:10.1016/s0140-6736(09)60329-9 · Cited by 2,208
Patient engagement in research: a systematic review
Domecq, J. P., Prutsky, G., Elraiyah, T., Wang, Z., Nabhan, M., Shippee, N., Brito, J. P., Boehmer, K., Hasan, R., Firwana, B., et al. (2014) · BMC Health Services Research · doi:10.1186/1472-6963-14-89 · Cited by 1,773
Managing Clinical Knowledge for Health Care Improvement
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Readability Standards for Informed-Consent Forms as Compared with Actual Readability
Paasche-Orlow, M. K., Taylor, H. A., & Brancati, F. L. (2003) · New England Journal of Medicine · doi:10.1056/nejmsa021212 · Cited by 754
Patient-Centered Medicine: A Professional Evolution
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Cited by
SPIRIT extension and elaboration for n-of-1 trials: SPENT 2019 checklist
Porcino, A. J., Shamseer, L., Chan, A.-W., Kravitz, R. L., Orkin, A., Punja, S., Ravaud, P., Schmid, C. H., & Vohra, S. (2020) · BMJ · doi:10.1136/bmj.m122 · Cited by 81
Cruwys, T., Haslam, C., Haslam, S. A., Rathbone, J. A., & Donaldson, J. L. (2022) · Behavior Therapy · doi:10.1016/j.beth.2022.06.011 · Cited by 23
Nicolas‐Boluda, A., Le Roux, E., Tavenet, A., Bouaziz, J., Vercellini, P., Stratton, P., & Fauconnier, A. (2024) · Acta Obstetricia et Gynecologica Scandinavica · doi:10.1111/aogs.14694 · Cited by 7
Karacaoglu, M., Peerdeman, K. J., Karch, J. D., van Middendorp, H., & Evers, A. W. M. (2024) · Journal of Psychosomatic Research · doi:10.1016/j.jpsychores.2024.111676
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)
- OpenAlex
- W2342690669
- Cited by
- 363
- References
- 82
- FWCI
- 19.04
- Type
- journal article
- Language
- en
- Open access
- gold
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- Sacristan, J. A., Aguaron, A., Avendaño, C., Garrido, P., Carrion, J., Gutierrez, A., Kroes, R., & Flores, A. (2016). Patient involvement in clinical research: why, when, and how. Patient Preference and Adherence. https://doi.org/10.2147/ppa.s104259
Data sources
Bibliographic data: Semantic Scholar, OpenAlex, Crossref.
Contains information from the Semantic Scholar Academic Graph Datasets, made available under the ODC Attribution License (ODC-BY 1.0).
Semantic Scholar’s data is described in: Kinney, R., et al. (2023). The Semantic Scholar Open Data Platform. arXiv:2301.10140.
