scholarly journals Optimising Multi-stakeholder Practices in Patient Engagement: A Gap Analysis to Enable Focused Evolution of Patient Engagement in the Development and Lifecycle Management of Medicines

Author(s):  
S. D. Faulkner ◽  
C. A. C. M. Pittens ◽  
N. S. Goedhart ◽  
E. H. Davies ◽  
E. Manning ◽  
...  

Abstract Background The PARADIGM consortium aimed to make patient engagement in the development and lifecycle management of medicines easier and more effective for all, with the development of new tools that fulfil robustly defined gaps where engagement is suboptimal. Aims To generate an inventory of gaps in patient engagement practices and process from existing global examples. Methods A large set of criteria for effective patient engagement previously defined via a multi-stakeholder Delphi method, were mapped under fourteen overarching themes. A gap analysis was then performed by twenty-seven reviewers against the resulting forty-six mapped criteria, on a sample of seventy initiatives from global databases. Results An inventory of gaps was identified including contextual information as to why the gaps exist. Our work identified general patterns where patient engagement was suboptimal—defined as; fragmented reporting and dissemination of patient engagement activities, and the fundamental principles defined in frameworks or guidance being poorly adhered to in actual practice. Specific gaps were identified for sixteen criteria. Additionally, it was also common to observe primary aspects of a process were addressed for a given criteria (i.e. training for roles and responsibilities) but a secondary context element was lacking (i.e. making training material accessible/understandable/meaningful to all participants). Conclusion The results show that the evolution towards meaningful and systematic patient engagement is occurring, yet more importantly they provide clear directional insights to help enhance collaborative practices and co-design solutions. This targeted impact to catalyse a needs-oriented health system that integrates patient engagement at its core is essential.

2021 ◽  
Vol 24 (2) ◽  
pp. 491-506
Author(s):  
Lidewij Eva Vat ◽  
Teresa Finlay ◽  
Paul Robinson ◽  
Giorgio Barbareschi ◽  
Mathieu Boudes ◽  
...  

Author(s):  
Marvine Hamner

There are many differences between entities in the public and private sectors engaged in emergency management: vision, mission, goals, and objectives are only a few. To develop workable public private partnerships requires an understanding of these differences. This understanding will then provide a foundation for establishing unambiguous agreements within which each sector's roles and responsibilities are clear, and within which all entities can be successful. This chapter explores the differences between public and private sector entities, which can create gaps in understanding and communication, comparing and contrasting these differences; then, it evaluates ways the resulting gaps between entities and within public private partnerships can be closed. Comparison of the respective backgrounds and perspectives provides the material necessary to complete a gap analysis. Anecdotal information is provided that illustrates how the differences between public and private sector entities support, hinder, or manifest in public private partnerships.


2018 ◽  
Vol 21 ◽  
pp. S153
Author(s):  
K. Deane ◽  
S.E. Skovlund ◽  
B. Nafria ◽  
L. Delbecque ◽  
O.V. Gorbenko ◽  
...  

Paleobiology ◽  
2003 ◽  
Vol 29 (1) ◽  
pp. 26-29 ◽  
Author(s):  
John Alroy

For decades, paleobiologists have treated global diversity estimation as a straightforward problem (Miller 2000): count up the known higher taxa in each geological time interval, make a diversity curve, and go straight ahead to analyzing and interpreting the trends. However, global diversity curves recently have come under attack from all sides. Some researchers argue that although traditional curves are strongly affected by sampling biases (e.g., Smith 2001; Peters and Foote 2002), these biases can be corrected by assembling large, locality-level databases with detailed contextual information (Alroy et al. 2001). Others point to the large gap between true total global richness and the meager head counts the fossil record has to offer, and conclude that workers should focus exclusively on local and regional diversity (Jackson and Johnson 2001). Here I argue that although further fieldwork surely is needed, understanding global diversity in the short term remains a tractable goal—as long as we move quickly to build a discipline-wide, globally extensive paleontological database.


2021 ◽  
Vol 28 (1) ◽  
pp. 630-639
Author(s):  
J. Needham ◽  
J. Taylor ◽  
D. Nomikos

The inclusion of patients as partners in research is a key link in the delivery of patient-centred care in healthcare systems. Despite genuine intentions to engage patients in authentic partnerships, efforts can result in tokenism and benefits of engagement are missed. Understanding how patient engagement provides value along the research to patient-care continuum and how to best engage patients as partners are key. This document describes the method taken by the Canadian Cancer Trials Group (CCTG) to implement meaningful patient centricity and engagement and the benefits realized. Originally, Patient Representatives were recruited and assigned to CCTG Committees. Lacking guidance, the role was one of a passive meeting attendee. A gap analysis identified a need for clarity in expectations, understanding of the linkage to CCTG strategic objectives, and supporting tools and training. A plan was developed and successfully implemented in three phases, each phase building on the previous, the level of patient engagement simultaneously changing from “Inform” to “Involve” to “Collaborate” on the International Association for Public Participation (IAP2) scale. Results include significant contributions to increased patient accrual in CCTG trials, to increased CCTG grant funding, as well as recognition and adoption of these practices within Canada and internationally.


10.28945/3739 ◽  
2017 ◽  
Vol 14 ◽  
pp. 163-175 ◽  
Author(s):  
Douglas A Straka

Aim/Purpose: Governments, private business, and academia have become increasingly aware of the importance of collaboration in multi-stakeholder, multicultural environments. This is due to the globalization and (developing) mutual relationships with other global partners, due to the often varying visions and goals between the respective organizations in managing projects that span those environments. Background: This research conducts a survey of literature pertaining to organizational collaboration in multi-stakeholder, multicultural environments in government, private business, and academic sectors, conducting an analysis to identify the gaps in the basic questions thus far explored in the literature. The gap analysis will expose the opportunities for greater collaboration in these environments. Methodology: The author conducted a literature review to identify existing research gaps to focus interviews that will develop multiple case studies in future research. Contribution/Findings: This literature review has determined gaps in understanding how contributing factors to cultural communication impact collaboration in multi-cultural, multi-stakeholder organizations, encouraging additional research in this area. Recommendations for Practitioners: Practitioners have the opportunity to develop their use of cultural communication contributing factors, potentially increasing their collaboration efficiency. Recommendation for Researchers: Researchers have opportunity to gather empirical evidence that factors of cultural communication may influence collaboration in the multi-cultural, multi-stakeholder environment. Impact on Society Improved understanding of how cultural communication factors influence collaboration in multi-cultural, multi-stakeholder organizations can improve organizational efficiency. Future Research: Gather empirical evidence that factors of cultural communication may influence collaboration in the multi-cultural, multi-stakeholder environment.


2019 ◽  
Vol 22 ◽  
pp. S328
Author(s):  
S. Skovlund ◽  
O.V. Gorbenko ◽  
D.P. Richards ◽  
B. Nafria ◽  
L. Delbecque ◽  
...  

Author(s):  
Maria Cavaller-Bellaubi ◽  
Stuart D. Faulkner ◽  
Bryan Teixeira ◽  
Mathieu Boudes ◽  
Eva Molero ◽  
...  

Abstract Background There 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. Methods A 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. Results This 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. Conclusions The roadmap provides a framework for all stakeholders to take collective action within their organisations and across Europe to implement PE in a sustainable manner.


2019 ◽  
Vol 26 (11) ◽  
pp. 1279-1285 ◽  
Author(s):  
Jingcheng Du ◽  
Qingyu Chen ◽  
Yifan Peng ◽  
Yang Xiang ◽  
Cui Tao ◽  
...  

Abstract Objective In multi-label text classification, each textual document is assigned 1 or more labels. As an important task that has broad applications in biomedicine, a number of different computational methods have been proposed. Many of these methods, however, have only modest accuracy or efficiency and limited success in practical use. We propose ML-Net, a novel end-to-end deep learning framework, for multi-label classification of biomedical texts. Materials and Methods ML-Net combines a label prediction network with an automated label count prediction mechanism to provide an optimal set of labels. This is accomplished by leveraging both the predicted confidence score of each label and the deep contextual information (modeled by ELMo) in the target document. We evaluate ML-Net on 3 independent corpora in 2 text genres: biomedical literature and clinical notes. For evaluation, we use example-based measures, such as precision, recall, and the F measure. We also compare ML-Net with several competitive machine learning and deep learning baseline models. Results Our benchmarking results show that ML-Net compares favorably to state-of-the-art methods in multi-label classification of biomedical text. ML-Net is also shown to be robust when evaluated on different text genres in biomedicine. Conclusion ML-Net is able to accuractely represent biomedical document context and dynamically estimate the label count in a more systematic and accurate manner. Unlike traditional machine learning methods, ML-Net does not require human effort for feature engineering and is a highly efficient and scalable approach to tasks with a large set of labels, so there is no need to build individual classifiers for each separate label.


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