ReviewPatient preference and adherence2016
Patient involvement in clinical research: why, when, and how.
Review in Patient preference and adherence, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT07390071 (Multimodal Telerehabilitation in Patients Undergoing CAR-T Cell Immunotherapy), which is not on this map. Cited by 166 papers, 4 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Multimodal Telerehabilitation in Patients Undergoing CAR-T Cell Immunotherapy
Who cites it
166 citing papers in PubMed, 4 syntheses or guidelines pooled it.
- Identifying Common Patient-Oriented Priorities for Child and Adolescent Health Research and Care: A Systematic Review of Priority Setting Partnerships.Health expectations : an international journal of public participation in health care and health policy · 2025Pooled it
- Pooled it
- Recruitment rates and strategies in exercise trials in cancer survivorship: a systematic review.Journal of cancer survivorship : research and practice · 2024Pooled it
- Current trends in patient and public involvement in cancer research: A systematic review.Health expectations : an international journal of public participation in health care and health policy · 2019Pooled it
- The TiME Trial: A Fully Embedded, Cluster-Randomized, Pragmatic Trial of Hemodialysis Session Duration.Journal of the American Society of Nephrology : JASN · 2019Trial
- Patient Engagement Survey Regarding Future Double-Blinded, Randomized Controlled Trial of Tapering of Chronic Opioid Therapy.Journal of primary care & community healthTrial
- Developing a core outcome set for generalized anxiety disorder during the perinatal period: Identifying core treatment outcomes in perinatal anxiety.The British journal of clinical psychology · 2026Article
- Patient engagement in protocol development for rare disease clinical trials: a framework.Research involvement and engagement · 2026Article
- [What do patients want in clinical trials? : Perspectives from ophthalmology and patient advocacy groups].Die Ophthalmologie · 2026Review
- Patients' experiences and attitudes toward the use of real-time artificial intelligence-assisted colonoscopy.Colorectal disease : the official journal of the Association of Coloproctology of Great Britain and Ireland · 2026Article
- Why involvement remains fragile: a qualitative comparison of principal investigators' and patient organisations' perspectives in Italy.Research involvement and engagement · 2026Article
- Assessing Shifts in Research Priority Areas From the Neurological Community Before and After the COVID-19 Pandemic.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Article
- Kidney stone disease: phenomenological perspectives.Medicine, health care, and philosophy · 2026Article
- The patient matters: a roundtable discussion on pathology in the era of digitization and AI.Virchows Archiv : an international journal of pathology · 2026Article
- Clinical trial awareness and participation attitudes among patients with epidermolysis bullosa and their caregivers: a nationwide cross-sectional study from Saudi Arabia.Frontiers in medicine · 2026Article
- COMBINE EBIs: A novel COllaborative Method for Building INterventions from Existing Evidence-Based Interventions.Annals of epidemiology · 2025Article
- Optimising clinical trial management in Spain: The CARABELA-Clinical trials framework integrating healthcare models and subject experiences.Contemporary clinical trials communications · 2025Article
- Seven Actions Towards Advancing Patient Authorship and Collaboration in Peer-Reviewed Publications.The patient · 2025Review
- Recruitment Techniques Used for Clinical Trials and the Potential Impact of Nudges: Qualitative Interview Study with Recruiters.Journal of empirical research on human research ethics : JERHRE · 2025Article
106 more citing papers are in PubMed but not listed here.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
8 authors.
Funding
No grant is acknowledged in the PubMed record.
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.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.