The NeuroAdvocacy Toolkit: A Knowledge Translation Strategy to Strengthen Food Fortification Policies to Prevent Neural Tube Defects in Latin American Countries. A Mixed-Method Study

Background. Neural tube defects are one of the leading congenital malformations that affect children in Latin America and worldwide, leading to pregnancy terminations, morbidity, mortality, and long-term disability. The most cost-effective and equitable way to prevent them is by implementing public health policies for food fortification with folic acid. However, a lack of knowledge translation strategies partly accounts for the incomplete enactment, enforcement, and scaling-up of mandatory fortification. There is no evidence in the scientific literature of studies attempting to identify the factors contributing to the development and implementation of knowledge translation strategies aiming to influence policymakers’ decisions regarding mandatory food fortification to prevent neural tube defects in Latin American countries. Objectives. The study\u27s overall purpose was to describe the factors contributing to developing and implementing a knowledge translation strategy, named the NeuroAdvocacy Toolkit, aiming to influence policymakers in Latin American countries regarding mandatory food fortification policies to prevent neural tube defects. Methods. This study utilized a mixed-method sequential explanatory design with a follow-up explanations variant, which prioritizes the initial quantitative phase and uses the subsequent qualitative phase to explain the quantitative results. The study comprised three phases. First, a document analysis led to determining the status of fortification policies and a needs assessment for regulation change in the 20 Latin American countries, followed by the development of the NeuroAdvocacy Toolkit. The toolkit development was informed by the scientific literature and voices from the target audience regarding preferred mechanisms for knowledge transfer and utilization. Second, a quantitative phase collected survey data from purposefully selected Latin American key opinion leaders through the Measurement Instrument for Determinants of Innovations (MIDI) to identify the barriers and facilitators for implementing the toolkit as an innovative knowledge translation strategy. The surveys were conducted through an online platform in Spanish. And third, a qualitative phase gathered interview data about the perspectives of Latin American key opinion leaders in pediatric neurosurgery (purposefully selected from the survey respondents) on implementing and disseminating the toolkit to policymakers. The interviews were conducted through an online platform in Spanish. This phase concluded by integrating quantitative and qualitative data to gain a deeper understanding of how to address the critical factors. Results. The document analysis in the study\u27s first phase triangulated different sources of information to identify the status of food fortification policies in Latin America and develop a reliable needs assessment for regulation change. The data gathered allowed categorizing the 20 countries according to the priority to implement regulatory changes to strengthen fortification policies. Four countries are in level 1 priority with an urgent need for regulation change, 14 countries are in level 2 with a high need for regulation change, one country is in level 3 with a medium need, and one is in level 4 with no need for regulatory change. After being introduced to the NeuroAdvocacy Toolkit, 30 key opinion leaders in pediatric neurosurgery from 20 countries responded to the MIDI questionnaire. Their responses allowed identifying 20 facilitators, seven potential facilitators, and two barriers to implementing the Toolkit as a knowledge translation strategy targeting policymakers in the region. Twenty-four interviews with key opinion leaders yielded three themes describing 1) the attitudes toward using the Toolkit, 2) the ideal delivery strategies to policymakers, and 3) how to face potential challenges when bringing policymakers on board during the implementation and dissemination process. Finally, integrating quantitative and qualitative data permitted a deeper understanding of overcoming potential barriers and strategically leveraging facilitating factors when disseminating the Toolkit to the target policymakers. Although the MIDI allowed identifying the main barriers and facilitators for implementing the NeuroAdvocacy Toolkit, the subsequent interviews allowed visualizing alternatives for operationalizing the determinant factors. Key opinion leaders’ behaviors, influenced by subjective norms, social norms, and perceived roles, can spearhead effective data-driven advocacy. Organizational support can enhance the implementation and dissemination of the NeuroAdvocacy Toolkit by consolidating neurosurgical guild unity and promoting alliances with universities, other academic institutions, and other professional societies; also, obtaining support from non-governmental organizations and patients’ associations as critical stakeholders. Gaining support from supranational organizations such as the WHO and PAHO, materialized through a statement or resolution, can accelerate the dissemination process and promote the promulgation, enactment, and enforcement of MFF policies in most of the countries represented in this study. Conclusions. Most Latin American countries have a compelling need to update, scale up, implement, optimize surveillance, and guarantee the sustainability of mandatory food fortification policies to prevent neural tube defects. The NeuroAdvocacy Toolkit is an innovative knowledge translation strategy enabling key opinion leaders in pediatric neurosurgery to influence policymakers\u27 decisions toward strengthening fortification policies in Latin America. Critical determinant factors can act as barriers or facilitators to implementing and disseminating the Toolkit. Recognizing them is essential to tailor strategies to approach and call policymakers to action, with the ultimate goal of saving thousands of children in Latin America from being born with a devastating but preventable condition and promoting a healthy and fulfilling start to their lives

Translating Predictive Models for Alzheimer’s Disease to Clinical Practice: User Research, Adoption Opportunities, and Conceptual Design of a Decision Support Tool

Alzheimer’s Disease (AD) is a common form of Dementia with terrible impact on patients, families, and the healthcare sector. Recent computational advances, such as predictive models, have improved AD data collection and analysis, disclosing the progression pattern of the disease. Whilst clinicians currently rely on a qualitative, experience-led approach to make decisions on patients’ care, the Event-Based Model (EBM) has shown promising results for familial and sporadic AD, making it well positioned to inform clinical decision-making. What proves to be challenging is the translation of computational implementations to clinical applications, due to lack of human factors considerations. The aim of this Ph.D. thesis is to (1) explore barriers and opportunities to the adoption of predictive models for AD in clinical practice; and (2) develop and test the design concept of a tool to enable EBM exploitation by AD clinicians. Following a user-centred design approach, I explored current clinical needs and practices, by means of field observations, interviews, and surveys. I framed the technical-clinical gap, identifying the technical features that were better suited for clinical use, and research-oriented clinicians as the best placed to initially adopt the technology. I designed and tested with clinicians a prototype, icompass, and reviewed it with the technical teams through a series of workshops. This approach fostered a thorough understanding of clinical users’ context and perceptions of the tool’s potential. Furthermore, it provided recommendations to computer scientists pushing forward the models and tool’s development, to enhance user relevance in the future. This thesis is one of the few works addressing a lack of consensus on successful adoption and integration of such innovations to the healthcare environment, from a human factors’ perspective. Future developments should improve prototype fidelity, with interleaved clinical testing, refining design, algorithm, and strategies to facilitate the tool’s integration within clinical practice

Data protection for the common good : developing a framework for a data protection-focused data commons

This research is part of Janis Wong’s doctoral research, which is funded by the University of St Andrews St Leonard’s College, School of Computer Science, and School of Management.In our data-driven society, personal data affecting individuals as data subjects are increasingly being collected and processed by sizeable and international companies. While data protection laws and privacy technologies attempt to limit the impact of data breaches and privacy scandals, they rely on individuals having a detailed understanding of the available recourse, resulting in the responsibilization of data protection. Existing data stewardship frameworks incorporate data-protection-by-design principles but may not include data subjects in the data protection process itself, relying on supplementary legal doctrines to better enforce data protection regulations. To better protect individual autonomy over personal data, this paper proposes a data protection-focused data commons to encourage co-creation of data protection solutions and rebalance power between data subjects and data controllers. We conduct interviews with commons experts to identify the institutional barriers to creating a commons and challenges of incorporating data protection principles into a commons, encouraging participatory innovation in data governance. We find that working with stakeholders of different backgrounds can support a commons’ implementation by openly recognizing data protection limitations in laws, technologies, and policies when applied independently. We propose requirements for deploying a data protection-focused data commons by applying our findings and data protection principles such as purpose limitation and exercising data subject rights to the Institutional Analysis and Development (IAD) framework. Finally, we map the IAD framework into a commons checklist for policy-makers to accommodate co-creation and participation for all stakeholders, balancing the data protection of data subjects with opportunities for seeking value from personal data.Publisher PDFPeer reviewe

Include 2011 : The role of inclusive design in making social innovation happen.

Include is the biennial conference held at the RCA and hosted by the Helen Hamlyn Centre for Design. The event is directed by Jo-Anne Bichard and attracts an international delegation

Enabling the Integration of Sustainable Design Methodological Frameworks and Computational Life Cycle Assessment Tools into Product Development Practice

Environmental sustainability has gained critical importance in product development (PD) due to increased regulation, market competition, and consumer awareness, leading companies to set ambitious climate targets . To meet these goals, PD practitioners (engineers and designers) are often left to adapt their practices to reduce the impacts of the products they manufacture. Literature review and interviews with practitioners show that they highly valued using quantitative life cycle assessment (LCA) results to inform decision making. LCA is a technique to measure the environmental impacts across various stages of a product life cycle. Existing LCA software tools, however, are designed for dedicated experts to use at the end of PD using detailed product information. This creates the “ecodesign paradox”, a tension between opportunity for change in the early-stages of PD and availability of data in later stages to make reliable decisions. Further, my research identified that novice users of LCA face additional barriers including: cumbersome user interfaces, unfamiliar terminology, and complicated information visualization. To address these challenges, I developed a tool called EcoSketch for use during early-stage PD by novice users. Practitioners, however, also struggle with translating environmental impact information into actionable design decisions. Hence, I co-created methodological frameworks of sustainable design strategies with industry partners: Synapse Product Development Inc. and Stanley Black and Decker Inc. Despite contextual differences, a key commonality was that practitioners at both firms sought “structured” and “data-driven\u27\u27 processes for sustainable design. Through multiple, extended internships, I also identified important drivers and barriers to sustainable design integration. Overall, my research demonstrates that co-creation improves receptivity, long-term adoption, and produces tangible improvements to sustainable outcomes in practice. In summary, my research pursues two key pathways to enable sustainable design integration: Developing human-centered life cycle assessment (LCA) tools that are designed for decision-making during the early stages of PD. Creating methodological frameworks to support the application of appropriate sustainable design strategies in PD practice. This thesis elaborates on my proposed coupling of robust frameworks with human-centered LCA tools, which I argue together comprise a transformative solution for industry professionals to effectively integrate sustainability considerations in their product development practices

Educators’ Perceptions Of The Universal Design For Learning Framework In Support Of Economically Disadvantaged Third And Fourth Grade Students

Universal Design for Learning (UDL) is a set of principles that provides an innovative curriculum and instructional design framework. By eliminating learning barriers across a wide range of learner variations, UDL implementation can enhance teaching and learning. This study explored the perceptions of a sample of third and fourth-grade school teachers in a suburban school district outside of Boston, Massachusetts, implementing the principles of UDL to support the achievement of economically disadvantaged students. The constructivist theories of Vygotsky and Piaget guided the study\u27s conceptual framework. The five prominent themes that emerged from the semi-structured interviews were (1) classroom learning environment, (2) teaching and learning strategies, (3) identifying and supporting economically disadvantaged students, (4) obstacles to implementing the UDL framework, and (5) application of the UDL guidelines. After examining the perceptions of the UDL framework through an interpretative phenomenological analysis (IPA), the researcher gathered three findings which were (1) an inconsistent means of identification of economically disadvantaged students, (2) inadequate differentiated instruction for economically disadvantaged students, and (3) a general dissatisfaction with professional development to support continued UDL implementation

BUILDING A SUSTAINABLE NETWORK OF DROUGHT COMMUNITIES

The first step in managing large-scale (national) collaborations and networks is to consider and address how a group and a potential partnership may match up (Luther, 2005). To explore this concept and many other collaborative concepts, the National Integrated Drought Information System (NIDIS) hosted a workshop, “Building a Sustainable Network of Drought Communities,” which was facilitated by the National Drought Mitigation Center (NDMC) in Chicago, IL, June 8-9, 2011. The workshop explored current examples of good communication and lessons learned within the realm of drought planning in order to address a future NIDIS Engaging Preparedness Communities (EPC) working group that is solution-focused and collaborative. With the diversity and experience of the participants at this meeting, a wealth of good practices or lessons learned in drought planning, preparedness, and general stakeholder engagement set the pathway for building a sustainable community of drought practitioners. In his opening remarks, NIDIS Director Roger Pulwarty noted that adaptive institutions can show robustness in the following ways: Levels of alertness—monitoring the external world for early warning signs that key assumptions are likely to verify/fail and a commitment to rigorous monitoring of performance; Agility—the ability to react to early warning signs of problems or opportunities; flow of knowledge across components, and to adjust strategies and tactics rapidly to meet changes in the environment; and Alignment—the ability to align the whole organization (and partners) to its mission-policies and practices that give rise to failures/successes. Through an interactive workshop format that used Appreciative Inquiry (framing breakout sessions on success), the group was able to effectively discuss topics such as: • Integrating Planning Efforts • Planning Under Uncertainty • Evaluating, Assessing, and Updating Drought Plans • Leveraging Resources for Risk Management • Implementing Plans and Planning Information • Synthesizing Success Stories and Lessons Learned • Creating a Sustainable Network of Drought Professionals The most common themes resulting from the workshop included: • Importance of networking and collaboration—this is a necessity. Figuring out how to make it seamless is the main goal that the NIDIS EPC Community should foster. Good communication is the key among the drought practitioners and their stakeholders. • Celebrate success—in this future drought network, successes related to drought efforts should be highlighted within the community and to the public. This will help drive future positive interactions and collaborations. It also gives the community a sense of pride. • “Stakeholder Buy-In”—why should stakeholders stay engaged in an ongoing drought community? Especially when there is no drought? Again, good communication and collaborations with other multi-hazard, sustainability, and natural resources planning efforts will help keep drought a priority. • Economic, environmental, and social aspects of planning for drought—these should always be considered. This was a recurrent theme in the workshop. • Planners should not “reinvent the wheel”—planners involved in climate adaptation work can and should reference the best drought planning resources and case studies to help them incorporate drought in their overall planning efforts. • “Have a plan for the plan”—how and who will make it happen? What kind of leadership is needed within the NIDIS EPC community to track its progress and success? • Sharing of resources—as budgets become slimmer, a central location of available resources and the sharing of resources in the area of drought preparedness and mitigation is necessary. Communication regarding these potential resources should also be integrated into this NIDIS EPC community. Since the occurrence of the workshop, several EPC-related activities have taken place, including a webinar in December 2011. This workshop report and additional EPC updates will be placed on the U.S. Drought portal (www.drought.gov). Currently, the American Planning Association (APA), NIDIS and the NDMC are collaborating to produce a Planning Advisory Service (PAS) Report to connect drought mitigation resources with the planning practices of local, regional, tribal and state governments. This builds on the work of the APA’s Hazard Planning Center, which produced a similar PAS Report (sponsored by FEMA) on how to integrate multi-hazard planning into planning practices. In May 2012: The APA’s drought planning project webpage went live and can be found at: http://www.planning.org/research/drought/index.ht