ArticleResearch involvement and engagement2022
Practices of patient engagement in drug development: a systematic scoping review.
Article in Research involvement and engagement, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 22 papers.
What it found
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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.
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Who cites it
22 citing papers in PubMed.
- Awareness and perceptions of patient and public involvement in rare disease research in Japan: the role of patient advocacy groups and family members.Research involvement and engagement · 2026Article
- Advancing the Science of Patient Input in Drug Research and Development.Journal of participatory medicine · 2026Article
- Evaluation of the methodology of independent Community Advisory Boards in health products research and development: a mixed-methods cross-sectional survey study.Research involvement and engagement · 2026Article
- Addressing Unmet Medical Needs in Drug Development: Assessment and Implications for Regulatory and Clinical Development Strategies.Journal of market access & health policy · 2026Article
- Authentic content as an effective mechanism for embedding patient voices in health innovation: a hypothesis and conceptual framework.Frontiers in health services · 2026Article
- Incorporating Patient Needs and Perspectives in Additional Risk Minimization Measures and Other Pharmacovigilance Deliverables - A Framework and Implementation Roadmap.Therapeutic innovation & regulatory science · 2025Article
- Advances in Gene Therapy with Oncolytic Viruses and CAR-T Cells and Therapy-Related Groups.Current issues in molecular biology · 2025Review
- Widening Patient Engagement for Rare Disease Drug Trials: The Perspectives of Patients With Idiopathic Pulmonary Fibrosis on Participating in Clinical Drug Trials and Drug Trial Design.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Constructing TheKeep.Ca With Thrivers of Cancer in Manitoba, Canada, in Support of Enhancing Patient Engagement: Protocol for a Pragmatic Multimethods Study.JMIR research protocols · 2025Article
- The proof is in the pudding: patient engagement in studying cannabidiol in mild cognitive impairment.BMC complementary medicine and therapies · 2025Article
- Multipurpose prevention technologies for the prevention of unintended pregnancy, HIV, and other sexually transmitted infections: regulatory pathways and challenges.Frontiers in reproductive health · 2025Article
- Development of a core outcome set for recurrent acute and chronic pancreatitis: Results of a Delphi poll.Pancreatology : official journal of the International Association of Pancreatology (IAP) ... [et al.] · 2024Article
- Cultivating Patient Preferences in ALS Clinical Trials: Reliability and Prognostic Value of the Patient-Ranked Order of Function.Neurology · 2024Article
- Delivering Digital Health Solutions that Patients Need: A Call to Action.Therapeutic innovation & regulatory science · 2024Article
- Engaging Cancer Care Physicians in Off-Label Drug Clinical Trials: Human-Centered Design Approach.JMIR formative research · 2024Article
- Knowledge-based representation: Patient engagement in drug development.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- Patient engagement in clinical trial design for rare neuromuscular disorders: impact on the DELIVER and ACHIEVE clinical trials.Research involvement and engagement · 2024Article
- From Innovator Result-driven to Multi-actor Impact-oriented Public-Private Partnerships: Integrating the Patient Perspective.Handbook of experimental pharmacology · 2024Review
- Young patients' involvement in a composite endpoint method development on acceptability for paediatric oral dosage forms.Research involvement and engagement · 2023Article
- Patient-Centric Design of Topical Dermatological Medicines.Pharmaceuticals (Basel, Switzerland) · 2023Review
Corrections and comments
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Authors and funding
3 authors.
Funding
Abstract
backgroundDuring the past decade, patient engagement (PE) has attracted significant attention in the field of drug development. Readiness to accept the central importance of patients' knowledge and contributions has become evident. This study aimed to synthesize evidence on the current state of PE in drug development: what is actually being done and how.
methodsA systematic scoping review was conducted based on a PRISMA-informed protocol. Search was performed in PubMed, EMBASE and Web of Science, covering the period between 2011 and 2021. For analysis of extracted data, we developed a framework for analyzing PE in Drug Development. The Framework distinguishes a number of different PE types that take place at different stages of drug development and are characterized by the different degrees of power patients have in the process. It allowed us to assess depth and intensity of PE initiatives included in this review.
resultsMost included PE initiatives took place at the stage of designing studies (40 in total). At this stage drug development goals are already set, but the mode of reaching them has not yet been fully determined. PE initiatives on the finetuning details stage followed (16 in total). The finetuning details stage covers the last parts of the drug development trajectory, when only relatively minor issues are still open for patients' contributions. The least numerous were PE initiatives on the stage of setting up R&D program (13 in total). This stage refers to the early steps in drug development where PE has the potential to make the most impact on shaping the subsequent process. In terms of intensity of engagement, most PE initiatives included in this review align with consultation and involvement types, 26 and 30 initiatives, respectively. Partnership was less frequent in the published accounts of PE (13 initiatives).
conclusionsThis review delineated a contemporary landscape of PE in drug development. Although attention to PE in drug development is relatively recent, a wide range of PE practices has already been initiated. The results indicate the necessity of distinguishing between different types of PE in order to understand consequences of choices regarding depth and intensity of PE.
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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.