Broad Stakeholder Involvement Research Articles

Future directions for emergency medical services development in low- and middle-income countries

The lack of prehospital care access in low- and middle-income countries is one of the greatest unmet needs and, therefore, one of the most urgent priorities in global health. Establishing emergency medical services in low- and middle-income countries poses significant challenges and complexities, requiring solutions tailored to prevailing conditions, informed by needs assessments, and adapted to meet local demands in a culturally appropriate and sustainable manner. In areas without existing emergency medical services, patients must rely on informal networks of untrained bystanders and community members to provide first aid and transport to definitive care. Since 2005, training lay first responders has been recommended by the World Health Organization as the first step toward formal emergency medical services development. However, efforts to formalize lay first responders networks have not expanded with the increasing need for prehospital emergency care in low- and middle-income countries, despite their potential. The rapid expansion of communication technologies like mobile smartphones penetrating resource-limited settings offers effective and inexpensive options for dispatching and coordinating lay first responders that were not previously available. These technologies can also be used for more advanced emergency medical services, obviating expensive communications and dispatch infrastructure. Despite disproportionately bearing the global injury burden, lay first responders frequently lack accurate and comprehensive surveillance data secondary to widespread underreporting, especially for non-fatal events. Lay first responders expand surveillance, which may inform future targeted prevention efforts, assisting in the development of tailored countermeasures suited to local hazards and diseases. Emergency medical services development in low- and middle-income countries involves a strategic approach focused on understanding the unique needs of diverse communities, requiring broad stakeholder involvement to create a sense of ownership to maintain volunteer networks and enhance sustainability. By embracing these relatively low-cost, bottom-up strategies, low- and middle-income countries can develop more accessible, efficient, and community-oriented emergency medical systems, ultimately improving public health outcomes and averting preventable deaths to address the emergency burden.

НА ПУТИ К ЭКОНОМИКЕ ЗАМКНУТОГО ЦИКЛА: ПОДХОДЫ К ПОЛИТИКЕ СНИЖЕНИЯ РИСКОВ ЗАГРЯЗНЕНИЯ ПЛАСТИКОВЫМИ ОТХОДАМИ

The increasing volumes of production and use of plastic, and its resistance to natural decomposition, pose significant risks to the environment. In these conditions, an urgent task is to study tools and mechanisms to reduce these risks. The article provides an overview of foreign and domestic practices to reduce the negative impact of plastic waste on the environment. The main policy directions for reducing the risks of plastic pollution are highlighted: encouraging replacement with more environmentally friendly analogues (bioplastic and biodegradable plastic); complete or partial ban on the use of single-use plastic; encouraging plastic recycling (extended producer responsibility, separate waste collection). The socio-economic problems that arise during the implementation of the policy are especially noted, and recommendations are proposed to minimize the negative impact on the population and the economic system. The need to develop an integrated approach to policy development, a “just transition”, by promoting broad stakeholder involvement in decision-making processes is emphasized. During the study, methods of comparative analysis, systematization and generalization were used. The theoretical and methodological basis of the study was the materials of international and governmental organizations, and the works of specialists in the field of waste management.

The Use of Evidence-Informed Deliberative Processes for Designing the Essential Package of Health Services in Pakistan

Background: The Disease Control Priorities 3 (DCP3) project provides long-term support to Pakistan in the development and implementation of its universal health coverage essential package of health services (UHC-EPHS). This paper reports on the priority setting process used in the design of the EPHS during the period 2019-2020, employing the framework of evidence-informed deliberative processes (EDPs), a tool for priority setting with the explicit aim of optimising the legitimacy of decision-making in the development of health benefit packages. Methods: We planned the six steps of the framework during two workshops in the Netherlands with participants from all DCP3 Pakistan partners (October 2019 and February 2020), who implemented these at the country level in Pakistan in 2019 and 2020. Following implementation, we conducted a semi-structured online survey to collect the views of participants in the UHC benefit package design about the prioritisation process. Results: The key steps in the EDP framework were the installation of advisory committees (involving more than 150 members in several Technical Working Groups [TWGs] and a National Advisory Committee [NAC]), definition of decision criteria (effectiveness, cost-effectiveness, avoidable burden of disease, equity, financial risk protection, budget impact, socio-economic impact and feasibility), selection of interventions for evaluation (a total of 170), and assessment and appraisal (across the three dimensions of the UHC cube) of these interventions. Survey respondents were generally positive across several aspects of the priority setting process. Conclusion: Despite several challenges, including a partial disruption because of the COVID-19 pandemic, implementation of the priority setting process may have improved the legitimacy of decision-making by involving stakeholders through participation with deliberation, and being evidence-informed and transparent. Important lessons were learned that can be beneficial for other countries designing their own health benefit package such as on the options and limitations of broad stakeholder involvement.

SECTORAL QUALIFICATIONS FRAMEWORK IN THE GLOBAL CONTEXT AND PERSPECTIVES FOR UKRAINE

Qualification frameworks are regarded as one of the key tools in standardizing and harmonizing professional qualifications at different levels and for different sectors of the economy, enabling comparison of qualifications obtained in different countries. This paper reviews a typo­logy of qualifications frameworks, characterizes pan-European sectoral qualifications frame­works and explores European public policy on sectoral qualifications frameworks. The research is based on a neo-institutional approach. Findings indicate that qualification frameworks cover different geographic levels and subject areas. Sectoral frameworks of qualifications are designed to help in harmonizing the knowledge, skills and competences necessary for effective professional activity, as well as in creating a transparent system of recognition of qualifications. Sectoral ones can be implemented at different levels – from national to transnational, and relate to both broad and narrow fields. Research demonstrated that the framework development process is based on the broad involvement of various stakeholders from education and the labor market. Such work includes: audit or functional analysis of existing qualifications, professional standards and education standards, summarization and updating of information on qualifications in demand on the labor market, step-by-step design of the framework of qualifications with filling according to different levels of qualifications and different descriptors; approval of the branch/sectoral framework of qualifications by the authorized body; if necessary – referencing, comparison with the European Qualifications Framework or other frameworks. The undertaken analysis of the European, in particular, Polish experience, where the elaboration of sectoral frameworks is institutionalized within the public policy and practice (20 sectoral sectoral frameworks were placed into Integrated System of Qualifications), has shown that the role of industry stakeholders consists in the elaboration of decisions and recommendations formulated in the framework, as well as in the implementation of this framework in practice. In conclusion, there is no clear policy in Ukraine for sectoral qualifications frameworks so far. In the future, the mechanisms for the development of such a framework should be legally determined, in particular, the institutional responsibility of various stakeholders, including the National Qualifications Agency.

Delivery planning as a method to increase control over design costs

Delivery planning is a method that determines which deliveries are expected to be delivered at any given time, and the dependency between different deliveries and stakeholders. This study aims to investigate whether the use of the delivery plan increases control over projects’ design costs and how Key Performance Indicators (KPIs) are being used to increase the control over the project's design costs. It also identifies the benefits and disadvantages of early involvement of stakeholders in the planning process. The research is a qualitative case study with Livsvitenskapsbygget (LVB) project as the primary case. Supplementary data are collected through interviews from four Norwegian projects and one Dutch project. This study is limited to large construction projects and does not cover other types of projects.The study has documented results that indicate that delivery planning increases control over a project's design costs. The results show that using delivery planning reduces the need for iterations and increases predictability. Similarly, the proactive use of KPIs in delivery planning is found to be beneficial in controlling project design costs. Furthermore, the study identifies the benefits and disadvantages of early-stage broad involvement of stakeholders in the design phase. The researchers underline the need for further research in this area, as it indicates that it will have a positive impact on the productivity of the construction industry.

Ballot Box Planning: Rail Referenda Implementation

Metropolitan areas in the United States frequently finance new rail lines with local option taxes, and, as a result, rail plans and associated taxes often come before voters as ballot measures. Existing research finds that rail ballot measures are more likely to pass when taxes are linked to specific projects and planning has broad stakeholder involvement. Such studies, however, have not examined to what extent agencies implement voter-approved projects. This research fills this gap and finds the interrelated variables of ballot measure provisions, campaign supporters and strategies, and planned rail projects contribute to varied progress toward implementation in Denver, Houston, and Miami. In addition, a fourth variable, transit agency capacity, is critical for implementation and for securing federal support. Because electoral strategies may contribute to or mitigate implementation challenges, rail and regional advocates should weigh the long-term consequences of ambitious rail plans and consider transit agency capacity.

Transformative innovation policy: A systematic review

This paper reviews the emerging literature on “transformative” innovation policy (TIP) in order to (1) identify unique TIP characteristics and the challenges they imply for policymakers throughout the policy cycle and (2) examine the literature's contribution to practical policymaking. We identify five main distinguishing TIP characteristics and analyse the literature's understanding of how they influence the policymaking process. The analysis shows that the literature discusses TIP-related challenges in all stages of the policy cycle but does not provide much guidance on how to address key cross-cutting policymaking challenges such as how to achieve broad stakeholder involvement, evaluate transformative outcomes, and build up dynamic policymaker capabilities. In order for TIP ideas to be implemented in real-life policymaking, TIP scholars, therefore, need to more explicitly consider the practitioners’ perspective and develop concrete models, tools and guidelines that help policymakers address the identified challenges.

ЗАГАЛЬНА ХАРАКТЕРИСТИКА ЗОВНІШНЬОГО ПРОЯВУ ПРОЦЕДУРНОЇ СКЛАДОВОЇ ПЕРЕВІРКИ РІШЕНЬ ДИСКУСІЄЮ ЯК ОСНОВОПОЛОЖНОГО ПРИНЦИПУ УХВАЛЕННЯ РІШЕНЬ ВЕРХОВНОЮ РАДОЮ УКРАЇНИ

The article provides the general characteristics of external manifestation of procedural component verification of decisions by discussion as fundamental principle of decision-making by the parliament of Ukraine, which is considered in the light of the interaction of the Verkhovna Rada of Ukraine with other subjects. The openness and transparency of the parliament of Ukraine functioning are analyzed through the prism of scientific works, current legislation and legal positions of the Constitutional Court of Ukraine. Special attention is paid to parliamentary hearings, their preparation and holding, because during the appropriate form of work of the parliament, the public participates in the discussion of decisions approved by the Verkhovna Rada of Ukraine, and stakeholders can express their position publicly. It is noted that despite the advisory nature of the results of the parliamentary hearings, the specified institute is evaluated as a feedback mechanism between citizens, institutions of civil society and the Verkhovna Rada of Ukraine, which makes it possible to analyze the position of society on certain issues and take it into account when working with draft laws in the committees of the Verkhovna Rada. Attention is paid to the fact that in addition to parliamentary hearings as a classic form of interaction between the representative body of the state power of Ukraine and institutions of civil society, the corresponding interaction can also take place in other forms, in particular, through electronic democracy (for example, electronic petitions, discussions of draft laws) or within the scope of the work of people's deputies in constituencies (for example, during meetings with voters). It is noted that electronic petitions and discussion of draft laws as digital services of the parliament website also represent the external manifestation of the procedural component of the fundamental principle of decision verification by discussion, because with their help it is possible to involve an unlimited circle of citizens and institutions of civil society in the process of development and decision-making by the Verkhovna Rada of Ukraine. Thus, domestic legislation providesfor a significant number of mechanisms for the interaction of the Parliament of Ukraine with other subjects. At the same time, it should be noted the tendency to strengthen the role of the mechanisms of "electronic democracy" (e-democracy) in the formation of public debate regarding the relevant draft acts and adopted decisions. The introduction of such mechanisms contributes to the strengthening of control by civil society and the formation of a professional discussion with the broad involvement of specialists and stakeholders in the context of decision-making by the legislature.

Involvement and Multi-Sectoral Collaboration: Applying Principles of Health Promotion during the Implementation of Local Policies and Measures—A Case Study

Five principles for health promotion (HP) stand out in various forms, providing guidance for HP measures and policy implementation: (1) a broad and positive health concept, (2) participation and involvement of key stakeholders, (3) build action and action competence by involving and empowering target groups, (4) a setting perspective, and (5) equity in health. The purpose of this study is to describe, and critically discuss, how the five HP principles can be applied to structure collaboration processes for implementing HP measures in local communities. A case study methodology was applied when investigating how the HP principles guided actions and focus-of-attention throughout the process of implementing a local community HP measure. Of special importance was the broad involvement of stakeholders and the anchoring of overarching, as well as specific, HP goals in the municipal strategic documents to ensure political commitment, ownership, and adequate resources. Direction on how to apply or achieve the HP principles should be further explored, described, and brought into systematic day-to-day work for a better society-development.

Lessons learned from the implementation of Canada's first alongside midwifery unit: A qualitative explanatory study

BackgroundIn July 2018, Canada's first midwife-led alongside midwifery unit (AMU) opened at Markham Stouffville Hospital (MSH) in Markham, Ontario. Our objectives were to examine how the conditions at MSH made it possible for the hospital to create the first AMU in Canada and to identify lessons to inform spread by examining how characteristics of the intervention, the inner and outer settings, the individuals involved, and the processes used influenced the MSH-AMU implementation process. MethodsWe conducted key informant interviews and document analysis using Yin's research methods. We used the Consolidated Framework for Implementation Research to conceptualize the study and develop semi-structured interview guides. We recruited key informants, including midwives and other health professionals, hospital leaders, leaders of midwifery organizations, and consumers, by email using both purposive and respondent driven sampling. Interviews were digitally recorded and professionally transcribed. We identified documents through key informants and searches of Nexis Uni, Hansard, and Google databases. We analyzed the data using a coding framework based on Greenhalgh et al.’s evidence-informed theory of the diffusion of innovations. ResultsBetween November 2018 and February 2019, we conducted fifteen key informant interviews. We identified thirteen relevant documentary sources of evidence, including news media coverage, website content, Ontario parliamentary records, and hospital documents. Conditions that influenced implementation of the AMU fell within the following domains from Greenhalgh's diffusion of innovations theory: the innovation, the outer context, the inner context – system antecedents for innovation and system readiness for innovation, communication and influence, linkage – design phase and implementation stage, and the implementation process. While several unique features of MSH supported innovation, factors that could be adopted elsewhere include organizational investment in the development of midwifery leadership skills, intentional use of change management theory, broad stakeholder involvement in the design and implementation processes, and frequent, open communication. ConclusionsThe example of the MSH-AMU illustrates the value of utilizing best practices with respect to change management and system transformation and demonstrates the potential value of using implementation theory to drive the successful implementation of AMUs. Lessons learned from the MSH-AMU can inform successful spread of this innovative service model.

A Proposal for Decentralized, Global, Verifiable Health Care Credential Standards Grounded in Pharmaceutical Authorized Trading Partners.

The twin forces of privacy law and data breaches have fundamentally challenged how we collect, store, and share sensitive information. Within this landscape, healthcare information is sacrosanct - and intimately tied to identity and data ownership. Building on prior work with UCLA Health, Genentech (a member of the Roche Group), Sanofi, Amgen, Biogen, and others, we offer this opinion piece to promote the development of a standard for decentralized Verifiable Credentials (VCs). This will empower Authorized Trading Partners (ATPs) in the pharmaceutical supply chain to trade and exchange information in compliance with the US federal law. Starting with credentialing and interoperability for the ATP community, our ultimate goal was to chart a path to a global standard for all health care VCs - providing individuals and health-care professionals control over their own data. By sharing our results and releasing essential components of the work to the public domain, we hope to align and connect with other foundational efforts, thus evolving standards within a truly open framework with broad stakeholder involvement.

The conceptualization of societal impacts of landfill mining – A system dynamics approach

Landfill mining (LFM) refers to the excavation and processing of formerly buried waste streams. It offers significant environmental and societal benefits through the mitigation of greenhouse gas emissions or the reduction of long-term waste management costs. LFM’s profitability, however, is still in question and public investment support might be necessary to fully exploit its potential. To enable decision-makers to identify the best solutions for a landfill site, societal impacts of LFM still have to be investigated. Throughout relevant literature, societal impacts of LFM projects have only selectively been studied and it remains unclear if and which benefits justify policy interventions. This paper firstly provides a comprehensive conceptualization of the societal impact of an LFM project and dives into the underlying societal context of this emerging industry. It disentangles formerly identified burdens and benefits by applying a system dynamics approach to LFM research. Based on this approach, four causal loop diagrams are presented showing how LFM is embedded into its societal context, analyzing the composition of the net societal impact of an LFM project, the mechanisms influencing LFM’s public acceptance, and the dynamics of the market acceptance of LFM products. Key variables and leverage points have been identified, such as (i) technology choices influencing avoided impacts from the mitigations of primary resource consumption, since many societal impacts are closely related to environmental impacts, (ii) a timely and broad stakeholder involvement to prevent project opposition, and (iii) the after-use of the mined landfill, generating a major part of the local and regional societal benefits but also creating potential conflicts between stakeholder interests. Key intradimensional trade-offs and potential conflicts were identified in (i) spatial and (ii) temporal risk distribution, (iii) conflicting societal goals of the after-use such as job creations and recreation, as well as (iv) material and energy recuperation. These findings provide important insights for LFM decision-makers and can help to implement this emerging industry in a sustainable way.

A critical exploration of adaptation heuristics

A large body of knowledge has been evolving to guide efforts in how we adapt to climate change. This knowledge is underpinned by a set of standardised rules of thumb (heuristics) that define what climate adaptation is and what it means. For example, it is widely accepted that adaptation is a local issue that is best achieved by urgent anticipatory action by using participatory processes. Yet, the validity and relevance of these heuristics have rarely been tested or questioned. If these heuristics are not based on sound empirical evidence, their inclusion and use in scientific studies, policy development, planning and implementation processes can generate inappropriate solutions for highly complex problems. This research critically examines and tests a set of common climate adaptation heuristics and investigates the extent to which they correspond to with the lived experiences of practitioners who are engaged in climate adaptation planning in Queensland, Australia. The findings provide new insights into the applicability of adaptation heuristics, and point to several new rules of thumb that underpin climate adaptation in practice. For example, adaptation was mainly seen as a regional/transboundary issue with broader stakeholder involvement that is best pursued through an incremental ‘learn-as-we-go’ approach. Retaining flexibility in the policy- and decision-making systems was preferred as were no-regret, value- and risk-based approaches. Future research is needed to explore further the different types of heuristics and how these best support adaptation science, policy, planning and decision-making processes.

Managing Climate Change by Managing Stakeholders? Information Processing in Urban Innovation

Urban renewal is increasing in relevance, mainly due to the need to address climate change. In pursuit of this goal, urban innovations target the development and implementation of collectively used infrastructures and resources in cities, like smart city solutions. These endeavors require the involvement of stakeholders to identify their needs and to garner their active support in urban environments. As a result, urban innovation projects can implement concrete solutions for ecological sustainability in local ecosystems that display multiple and frequent conflicting interests. Our study draws on stakeholder theory to investigate how the breadth of stakeholder involvement (the number of different stakeholder groups) and the depth of stakeholder involvement (the collaboration intensity with external stakeholders during the early innovation phase) affect the implementation orientation of urban innovation projects. Building on the perspective of information processing theory, we suggest that the efficacy of stakeholder involvement depends on the use of digital involvement and formalization tools. To explore these relationships, we analyze 106 urban innovation projects for energy efficiency improvements in urban districts. We use a text mining analysis of planning documents to assess the implementation orientation of targeted innovations and survey data to measure the independent variables. The results provide empirical evidence that (i) a broad involvement of stakeholders affects urban innovations’ implementation negatively, but a deep stakeholder involvement has the opposite effect, and that (ii) intensive use of digital involvement tools support stakeholder involvement, while (iii) a high degree of IT supported project formalization weakens the positive effect of stakeholder involvement intensity on the implementation orientation.

Economic city branding and stakeholder involvement in China: Attempt of a medium-sized city to trigger industrial transformation

Among known studies of city branding by Chinese megacities to realise urban transformation, there is no explorative study of how smaller Chinese cities engage in city branding and attempt to trigger industrial transformation. In response, this article presents an in-depth case study of city branding processes in a medium-sized Chinese city. Roles, resources and interactions among the city's stakeholders are analysed during the brand creation and implementation stages in two different economic city branding projects. The stakeholder involvement mechanisms we identify confirm that city branding creation in China primarily follows political rather than business channels. Chinese local public authorities and more specifically key politicians, departments, and public enterprises are core stakeholders in branding creation. However, this leads to challenges in the branding implementation, since key public sector players tend to withdraw themselves when implementation begins, leaving previously uninvolved private (and public) players to implement the brands. The unsuccessful transformation contrasts with those observed in Chinese megacities, where involvement of powerful corporations and support from higher levels of government are both much higher. It appears that the imperative of broad stakeholder involvement to make city branding successful as we know it for Western cities may also apply in medium-sized Chinese cities.

Fashion-Driven Textiles as a Crystal of a New Stream for Stakeholder Capitalism – Amazon's Endeavor

Fashion reflects changes in socio-economic and cultural life which, in turn, changes fashion, and apparel boosts such change. Thus, in response to a shift in people’s preferences from economic functionality to supra-functionality beyond an economic value, the fashion industry has been gaining momentum worldwide. In the digital economy, the fashion industry is in the midst of global dynamic change stimulating volatility, velocity, variety and dynamism, which necessitate a digital solution. Digital business leader Amazon has succeeded in constructing an R&D-driven disruptive businesss model. This can be attributed to a virtuous cycle among user-driven innovation, advancement of the Internet, co-emergence of soft innovation resources, and activation of a self-propagating function leading to supra-functionality satisfying user preferences. Given a timely digital solution, the fashion industry reinforces this cycle which, in turn, advances the solution. Thus, broad stakeholder involvement betting on a higher level of R&D expecting the future prospects of the industry can be expected. Based on a co-evolution analysis of the development trajectories of Amazon and the fashion industry, an insightful suggestion paving the way to stakeholder capitalism, essential for global business leaders, is thus provided.

Interprofessional simulation in a student community clinic: insights from an educational framework and contact theory

IntroductionSimulation in community care is a relatively understudied area. In this paper, we report a qualitative evaluation of the Simulated Client Interprofessional Education (SCIPE) program in a community clinic for undergraduate health and social care students in a rural setting. We sought to explore the stakeholders’ perceptions and experiences of training for, and conduct of, a simulated client-based activity to support the development of collaborative practice of students. We used an educational framework (presage, process, product–3P) and contact theory to analyse the evaluation data and suggest improvement strategies.MethodsData on professional characteristics was collected from facilitators, simulated client and students. Facilitators and simulated clients received training. Written evaluations were collected after training and after the simulated clinics. Purposively sampled facilitators, students and community partner agencies participated in individual semi-structured interviews to gain deeper insights into experiences.ResultsFourteen clinics involved 5 facilitators, 12 simulated clients and 40 students. Fifteen interviews were conducted. The SCIPE program led to perceived improvements in students’ communication and awareness of interprofessional collaboration. Participation in the program enabled students to experience a holistic approach to client interviewing and development of competency in collaborative goal setting. Further attention to presage and ability of facilitators to build positive contact conditions was identified. Coordination from a central site facilitated exchange and quality assurance for all elements of the program. Scoping of conditions of positive contact enabled a greater understanding of students’ and facilitators’ evaluation of the experience and constraints which would be modifiable for future improvement and sustainability.DiscussionAlthough the SCIPE program benefited students, the need for more explicit organisational engagement and support was revealed in interviews. The use of 3P and contact theory was helpful in identifying elements of the program for maintenance and development. Future research could follow students into practice to see if the behaviours are sustained and translated. Strengths included broad stakeholder involvement and immediate feedback. The key limitation was that the activity lacked explicit institutional support, facilitators required further training in briefing and the outcomes largely refer to participants’ perceptions and may not translate to practice.

The Holistic Approach to Urban Mobility Planning with a Modified Focus Group, SWOT, and Fuzzy Analytical Hierarchical Process

The urban mobility system is an important factor in social development and must, therefore, be tackled in a way that enables balanced, sustainable development. The purpose of the present work was to introduce a new holistic approach to urban mobility system (UMS) planning, which involves a strategic decision-making process with a broad involvement of various stakeholders. For this purpose, an innovative model was created by synthesizing the focus group (FG) method with the nominal group technique (NGT), SWOT (Strengths, Weaknesses, Opportunities, and Threats) analysis, and the fuzzy analytical hierarchical process (FAHP) method. The fuzzy approach was chosen for its ability to incorporate imprecise and vague information and make a decision-making UMS process more realistic. Accordingly, the objective of the paper was to propose a newly developed model that will (considering the integration of various urban mobility subsystems) enable the detection, identification, and ranking of key priorities required for a more holistic approach to UMS planning. The results revealed that the developed integrated model enables acquired areas to be ranked according to priorities, which further allows the development of scenarios. Moreover, the model allows a better understanding of how to search for compromises when one is faced with multi-criteria decision-making and coordination of frequently contradictory goals. A new integrated urban mobility model, as proposed herein, was also successfully tested in a real-life application, which proves its potential for use in sustainable urban mobility planning in a holistic way.

Developing a rare disease chronic care model: Management of systemic sclerosis (MANOSS) study protocol.

The aim of the management of systemic sclerosis (MANOSS) study described in this protocol is to develop a chronic care model, based on a contextual analysis and stakeholder involvement, for patients living with the rare disease systemic sclerosis (SSc) in Switzerland. Applying an implementation science approach, this study starts with an explanatory sequential mixed method study for contextual analysis, followed by broad stakeholder involvement for model development and a Delphi study to reach consensus. First, a quantitative cross-sectional survey with patients and healthcare professionals (HPs) will be conducted to identify current practice patterns of chronic illness management and technology readiness. Second, qualitative interviews with patients, family members and HPs will be performed to gain a deeper understanding of care needs identified in the quantitative survey. Third, a model of care will be co-created with input from patients, HPs and other experts. The eHealth enhanced Chronic Care Model will serve as a guiding framework. The new model and corresponding outcome parameters will be refined using a Delphi-study approach to reach consensus on a testable model of care for persons living with SSc. The protocol has received research ethics committee approval in September 2018 by the Swiss Ethics Committee. The MANOSS study's participatory approach is essential for contextual fit of the model for patients with SSc in this setting. Subsequent feasibility testing and implementation are planned to evaluate the model's value in relation to health disparities faced by this patient population. Patients living with this rare disease lack access to coordinated, specialized care and self-management support from qualified HPs. Reengineering of current care, with consideration for technological opportunities, is warranted to meet patients' and families' needs.

Stakeholder involvement in health research priority setting in low income countries: the case of Zambia

SummaryWhile there is increasing recognition of the importance of stakeholder involvement in health research priority setting there is a paucity of literature reporting on stakeholder involvement in health research priority setting in low income countries. This paper fills this gap by identifying and discussing the roles and legitimacy of different stakeholders (including the public and patients) involved in the health research priority setting process in Zambia; identifying the barriers to public participation and proposing improvement strategies.We interviewed 28 policy makers and practitioners who had participated in the national level health research priority setting in Zambia. Reported participants in health research priority setting included research users, researchers, research funders and the community/ public. Research funders were thought to have undue influence while the public and patients were not effectively involved. This could be due to the public’s lack of education, lack of resources to facilitate public involvement and limited skills to meaningfully engage the public. Participation of people from rural areas, women and young professionals was also limited.While there is a commitment to broad stakeholder involvement in health research priority setting, there’s limited public/patient involvement. Public education, availing more resources, and skills to meaningfully engage the public need to be explored. The undue influence of research funders should be mitigated and incentives availed to ensure that they align their research funding with the national priorities. These efforts would strengthen meaningful stakeholder engagement in health research prioritization within Zambia and other similar contexts.Background Stakeholder involvement in health research priority setting contributes to the legitimacy and acceptability of the priorities. Hence legitimate priority setting should involve a broad representation of stakeholders including the public. While there is a growing body of literature on health research prioritization in low income countries, there is a paucity of literature reporting on stakeholder involvement in the process. The objectives of this paper are to; 1) identify the stakeholders who were involved in the health research priority setting process in Zambia; 2) discuss the roles and perceived legitimacy of the stakeholders and analyze the degree to which patients/ public was involved; 3) To discuss some of the barriers to stakeholder participation in Zambia and similar contexts and to propose improvement strategies.Methods This was a qualitative study involving 28 in-depth interviews with stakeholders who had participated in the national level health research priority setting exercises in Zambia. An interview guide was used. Audio recorded interviews were transcribed and analyzed using INVIVO 10. Analysis of the Stakeholders’ theme involved identifying the different dimensions of stakeholder involvement as discussed in the interviews.Results Identified stakeholders included; research users, researchers, research funders and the community/ public. We found that health research priority setting involved research users, researchers, research funders and the community/ public. However, research funders were thought to have undue influence while the public and patients were not effectively involved. While the respondents recognized the advantages of involving the public and patients, they were not effectively involved. This could be due to the public’s limited understanding of the technicalities of priority setting, lack of resources to facilitate public involvement and limited skills to meaningfully engage the public. Participation from rural areas, women, and young professionals was also limited.Conclusions While there is a commitment to broad stakeholder involvement in health research priority setting, the public is left out. Efforts such as public education, availing more resources, and skills to meaningfully engage the public need to be explored. The undue influence of research funders should be mitigated through their direct involvement in the prioritization process and incentives to ensure that they align their research funding with the national priorities. These efforts would strengthen meaningful stakeholder engagement in health research prioritization within Zambia and other similar contexts.