ArticleTherapeutic innovation & regulatory science2021
Sustaining Meaningful Patient Engagement Across the Lifecycle of Medicines: A Roadmap for Action.
Article in Therapeutic innovation & regulatory science, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 27 papers.
What it found
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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.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
27 citing papers in PubMed, 51 citations in OpenAlex.
- Characterizing and prioritizing unmet medical needs: Findings from a patient and family caregiver workshop.Journal of managed care & specialty pharmacy · 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
- Barriers and solutions for healthcare professionals to involve patients as partners in oncology research: Project RISE.Future oncology (London, England) · 2026Article
- Digital Health Technologies: Learnings and Perspectives From a Patient Engagement Stakeholder Expectations Matrix Study.Journal of medical Internet research · 2025Article
- Incorporating Patient Needs and Perspectives in Additional Risk Minimization Measures and Other Pharmacovigilance Deliverables - A Framework and Implementation Roadmap.Therapeutic innovation & regulatory science · 2025Article
- Results of a patient engagement training for health advisors: a study of self-perceived competency enhancements.Research involvement and engagement · 2025Article
- Do We Understand Unmet Need? A Proposal to Use Length-Of-Life Equivalent (LOLE) as a Patient-Centric Measure of Unmet Need.PharmacoEconomics - open · 2025Article
- 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
- A Unified Set of Patient-inspired Health Concepts for Chronic Obstructive Pulmonary Disease: A North Star for Understanding Treatment Benefit.Annals of the American Thoracic Society · 2025Article
- Measuring and Demonstrating the Value of Patient Engagement Across the Medicines Lifecycle: A Patient Engagement Impact Measurement Framework.The patient · 2025Article
- A matrix tool to foster patient engagement in children, adolescents and young adults: report from a multistakeholder workshop.Research involvement and engagement · 2024Article
- Promoting Collaboration of Regulators and Patients in Improving Drug Safety and Regulatory Decision Making.Drug safety · 2024Article
- Patient organisations' views, motivations and experiences on patient involvement in cancer research: a pilot study in Portugal.BMJ open · 2024Review
- From Innovator Result-driven to Multi-actor Impact-oriented Public-Private Partnerships: Integrating the Patient Perspective.Handbook of experimental pharmacology · 2024Review
- Youth engagement in research: exploring training needs of youth with neurodevelopmental disabilities.Research involvement and engagement · 2023Article
- Good to know - This is PPIE! Development of a training tool for public and patient involvement and engagement in pediatric oncological research.Cancer reports (Hoboken, N.J.) · 2023Article
- A HTA of what? Reframing through including patient perspectives in health technology assessment processes.International journal of technology assessment in health care · 2023Article
- How do patients and other members of the public engage with the orphan drug development? A narrative qualitative synthesis.Orphanet journal of rare diseases · 2023Review
- Paediatric Inflammatory Bowel Disease: A Multi-Stakeholder Perspective to Improve Development of Drugs for Children and Adolescents.Journal of Crohn's & colitis · 2023Article
- Using Patient Perspectives to Inform Better Clinical Trial Design and Conduct: Current Trends and Future Directions.Pharmaceutical medicine · 2023Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
14 authors at 9 institutions in 7 countries.
Funding
Abstract
backgroundThere is increased recognition that incorporating patients' perspectives and insights into the medicines development process results in better health outcomes and benefits for all involved stakeholders. Despite the increased interest and the existence of frameworks and practical recommendations, patient engagement (PE) is not yet considered standard practice. The objective of this work was to provide a roadmap to support systematic change in all stakeholder organisations involved in medicines development across Europe, patients and patient organisations, medicines developers, academia, regulatory authorities, Health Technology Assessment bodies, payers, policy-makers and public research funders, to sustain PE practices.
methodsA mixed-methods approach was used by the EU-funded Innovative Medicines Initiative PARADIGM Consortium to co-develop the sustainability roadmap including background work to identify success factors and scenarios for sustainable PE. The roadmap development was based on the Theory of Change concept and populated with findings from (1) interviews with national/ and international institutions with the potential to increase PE uptake by other stakeholders; (2) multi-stakeholder workshops and webinars; and (3) consultations with specific stakeholder groups, Consortium members and a consultative body formed by international PE initiatives.
resultsThis roadmap sets strategic goals for the PE community to achieve meaningful and systematic PE through changes in the culture, processes and resources of stakeholder organisations. It brings in key PARADIGM outputs to work in a coordinated fashion with existing frameworks and mechanisms to achieve system-wide sustained PE.
conclusionsThe roadmap provides a framework for all stakeholders to take collective action within their organisations and across Europe to implement PE in a sustainable manner.
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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.