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Background: The establishment of international collaborative research partnerships in times of infectious disease outbreaks of international importance has been considered an ethical imperative. Frail health research systems in low- and middle-income countries can be an obstacle to achieve the goal of knowledge generation and the search for health equity before, during and after infectious disease outbreaks.Methods: A qualitative case study was conducted to identify the challenges and opportunities facing the Dominican Republic with regards to developing international collaborative research partnerships in the context of the Zika outbreak and its ethical implications. Researchers conducted 34 interviews (n = 30 individual; n = 4 group) with 39 participants (n = 23 males; n = 16 females) representing the government, universities, international donor agencies, non-governmental organisations, community-based organisations and medical societies, in two metropolitan cities.Results: Five international collaborative research projects related to the Zika virus were identified. Major ethical challenges were linked to the governance of health research, training of human resources, the institutionalisation of scientific activity, access to research funds and cultural aspects. Capacity-building was not necessarily a component of some partnership agreements. With few exceptions, local researchers were merely participating in data collection and less on defining the problem. Opportunities for collaborative work included the possibility of participation in international research consortiums through calls for proposals.Conclusions: The Dominican government and research stakeholders can contribute to the international response to the Zika virus through active participation in international collaborative research partnerships; however, public recognition of the need to embrace health research as part of public policy efforts is warranted. A working group led by the government and formed by national and international research stakeholders will be key to identify ways in which the country could respond to the ethical demand of generating new knowledge in times of outbreaks. [ABSTRACT FROM AUTHOR]

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The objective is to describe the social management of knowledge through research and innovation networks to promote social inclusion. The reflection of the exploratory stage is presented within the doctoral thesis analyzing the challenges of the universities in the achievement of social inclusion with networks of research and innovation. A descriptive work was done, with documentary tracking, systematization and analysis. The findings show that it is necessary to articulate efforts in interdisciplinary and transdisciplinary networks with different actors: state, company, education, scientists, technologists and vulnerable, excluded populations, to build policies and strategies for social inclusion. [ABSTRACT FROM AUTHOR]

Copyright of Regional Studies is the property of Taylor & Francis Ltd and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Background: We explored the perceptions of members of the Network for Scientific Support in the field of Sexual and Reproductive Health (NetSRH) on North-South-South networking and on constraints and perspectives for South-led research.Methods: An exploratory qualitative study was conducted 18 months after the network was launched. In-depth interviews were carried out with NetSRH members (n = 15) affiliated to southern research institutions. A thematic analysis was done and N-Vivo 10 software used.Results: A number of barriers to South-led research were identified, the most important being a lack of time, resources and research skills, and donor influence for the choice of research topics. Although the level of technical skills, such as writing proposals and scientific papers, differed among NetSRH members, all welcomed additional research capacity building. All members have deplored the lack of research management skills such as project cycle management as well as how to communicate with and get funds from donor agencies. International (local or regional) donor agencies had their own agenda with a budget already reserved for other purposes, thus priorities identified by national researchers were less taken into consideration. Systemic dependencies on external funds lead southern research partners to respond to calls for proposals mostly initiated by partners from northern institutions, leaving limited leeway for local initiatives. Southern NetSRH members perceived coaching done by the northern partners in scientific writing positively. South-South collaboration was minimal within NetSRH at this stage of the project, mainly due to time and resources constraints.Conclusion: NetSRH members unanimously concluded that sustainable financing of southern research centres is a necessary condition for them to initiate their own research projects. We recommend reserving funds within the international donor agencies for South-led research in order to break the vicious circle of running behind money provided by northern donors, thereby missing out on time and resources for reviewing research gaps and/or conducting needs evaluations required to initiate relevant own research. [ABSTRACT FROM AUTHOR]

This paper is a case study of a network that combined participatory approaches to propose best suited knowledge management (KM) interventions for its member countries. A five-step exercise used existing elements of the alliance’s strategy, a KM survey and a face-to-face participatory validation of the analysis, to identify gaps in current KM approaches and to collectively point to immediate opportunities for improvement. The KM survey, also referred to as a scan, provided a neutral space for reflection. Its conclusions through the workshop process were crucial in confirming the network's strengths and weaknesses specific to KM. Feeding back the results into existing work plans provided concrete opportunities for country members to implement ideas that had been discussed. The approach to and the outputs of this exercise were extrapolated to formulate a theory of change on KM for the alliance. [ABSTRACT FROM AUTHOR]

Confidentiality and informed consent are important concepts enabling the sharing of sensitive data. In a paper on this topic of this issue, Williams and Pigeot () discuss that these have to be balanced with openness to ensure research standards. In this opinion paper, we give some background on how the paper by Williams and Pigeot evolved, reflect on their concepts, and provide some examples of the application of these concepts in various settings relevant to biostatisticians working in health research. [ABSTRACT FROM AUTHOR]

Background: The present paper aims to explore the role of Health Research Networks (HRN) in facilitating and expedite achieving the prospects for goals of health research based on the visions of Iran by 2025.Methods: Aiming to the main function of HSR to achieve the targeted conducting of health sciences research; more cooperation and coordination between health science researchers; avoid parallel investigations; and optimum utilization and appropriate distribution of resources, in 2000 the deputy of Research and Technology of Ministry of Health and Medical Education defined and developed a comprehensive HRN.Result: There are currently 27 research networks operating under the supervision of the Deputy of Research and Technology at MOHME. All of the HRN policies are following based on their strategic planning’s which are extracted from national visions of Iran by 2025.Conclusion: Promoting the current position needs a reliable and feasible new strategies. The present article introduces the lessons learned of our experience in virtual web-based health research networking in Endocrinology and Metabolism Research Institute (EMRI).

Background: Evidence-based medical education is playing an increasingly important role in the choice of didactic methods and the development of medical curricula and assessments. In Germany, a growing number of educational research projects has accompanied an ongoing change in the medical education process. The aim of this project was to assess medical education research activities at one medical faculty to develop procedural recommendations for the support and development of best evidence medical education.Methods: Using a newly developed online questionnaire, the 65 institutes and departments of the medical faculty of Hamburg University at Hamburg University Medical-Center (UKE) were asked to report their medical education research and service projects, medical education publications, medical education theses, financial support for educational projects, and supportive structures that they would consider helpful in the future. The data were grouped, and a SWOT analysis was performed.Results: In total, 60 scientists who were involved in 112 medical education research publications between 1998 and 2014 were identified at the UKE. Twenty-five of them had published at least one manuscript as first or last author. Thirty-three UKE institutions were involved in educational service or research projects at the time of the study, and 75.8% of them received internal or external funding. Regular educational research meetings and the acquisition of co-operation partners were mentioned most frequently as beneficial supportive structures for the future.Conclusion: An analysis to define the status quo of medical education research at a medical faculty seems to be a helpful first step for the development of a strategy and structure to further support researchers in medical education.

Tornou-se lugar comum, sobretudo em correntes ligadas aos movimentos sociais mais amplos e às questões ambientais, a crítica ao reducionismo da ciência clássica, à dinâmica de trabalho individualizado, à desconexão e à falta de integração com os problemas reais. Como resultado, cresce o número de formadores de opinião em favor de uma ciência mais integrada aos problemas reais e de um conhecimento como processo coletivo. O Conselho Nacional de Desenvolvimento Científico e Tecnológico (CNPq) desenvolveu um Diretório dos Grupos de Pesquisa existentes no Brasil, alguns destes grupos possuem modelo de rede. Com o cenário apresentado, a reflexão sobre a importância de avaliar o potencial destes grupos foi incentivada para influenciar a formulação e a implantação de políticas públicas ambientais. Foi possível identificar fatores chave para o fortalecimento da influência nas políticas públicas, destacando-se dentre estes, avanços em abordagens interdisciplinares. Porém, os grupos possuem dificuldades na utilização de ferramentas de comunicação mais eficientes para o trabalho em rede e para atingir os tomadores de decisões; no acesso a fundos e nos critérios para integrar os grupos estudados.Tornase como lugar común, sobretodo en corrientes ligadas a los movimientos sociales más amplios y a las temáticas ambientales, una crítica al reduccionismo de la ciencia clásica, a la dinámica del trabajo individualizado, a las desconexiones y la falta de integración con los problemas reales. Como resultado crece el número de formadores de opinión en favor de una ciencia mas integrada a los problemas reales y de un conocimiento como proceso colectivo. El Consejo Nacional de Desarrollo Científico y Tecnológico (CNPq) desarrolló un Directorio de los Grupos de Investigación existentes en Brasil. Algunos de estos grupos poseen un modelo en red. Este escenario originó una reflexión sobre la importancia de evaluar el potencial de estos grupos en influenciar la formulación e implementación de políticas públicas ambientales. Fue utilizado un estudio exploratorio con revisión bibliográfica y de profundización de la investigación teniendo por objetos a estos grupos. Entre los resultados fue posible identificar factores claves para el fortalecimiento de las influencias en las políticas públicas. Entre estos se destacan avances en el abordaje más interdisciplinario. Sin embargo, los grupos poseen dificultades en la utilización de herramientas de comunicación más eficientes para un trabajo en red y para asistir al decisor; el poco acceso a fondos y los criterios para integrarse a los grupos.For the current science related to social movements and environmental issues it is usual the critical discussion of classical science reductionism, the dynamics of individualized work, the disconnection and the lack of integration with the real problems. As a result, the number of opinion in favor of a more integrated science grows. The National Council for Scientific and Technological Development (CNPq) has developed a Research Groups Directory in Brazil. Some of these groups have a network model. It is important to evaluate the inherent capacity of these groups for influencing the formulation and implementation of environmental policies. We used the exploratory study based on the literature review focused on these groups. Among the results were identified key factors for strengthening influence on public policy which have stood out more interdisciplinary approaches. However, the groups had difficulties in using communication tools for more efficient networking and to reach decision makers. Some groups had difficulties in accessing funds and to join the groups.

Transnational Organisations increasingly prioritise the need to support local research capacity in low and middle income countries in order that local priorities are addressed with due consideration of contextual issues. There remains limited evidence on the best way in which this should be done or the ways in which external agencies can support this process.We present an analysis of the learning from the INDOX Research Network, established in 2005 as a partnership between the Institute of Cancer Medicine at the University of Oxford and India's top nine comprehensive cancer centres. INDOX aims to enable Indian centres to conduct clinical research to the highest international standards; to ensure that trials are developed to address the specific needs of Indian patients by involving Indian investigators from the outset; and to provide the training to enable them to design and conduct their own studies. We report on the implementation, outputs and challenges of simultaneously trying to build capacity and deliver meaningful research output.

The European Union Reference Laboratory for the detection of animal proteins in feedingstuffs (EURL-AP) has developed an online micrographs collection supporting its network activities within the European Union for the detection of prohibited animal by-products in feed. So far, the only official method for detecting these by-products is light microscopy, which is highly dependent on the skills of a microscopist because it relies on particle recognition. In order to help the microscopist network to achieve high proficiency levels, it was necessary to create an online reference tool based on micrographs and accessible via an Intranet platform. Members of the National Reference Laboratories for animal proteins in feedingstuffs (NRL-AP) and the International Association for Feedingstuff Analysis – Section Feedingstuff Microscopy (IAG) have access to this micrographs collection. This paper describes how the online collection was created and what conditions had to be taken into account in creating such a tool. It also describes how information are periodically updated and managed within the context of the large amount of information included in each micrograph. The need for a robust back-office system as the foundation for all the research activities in this project is also covered, and the evaluation of the use of the online collection is discussed.

This paper studies Spanish scientific production in Economics from 1994 to 2004. It focuses on aspects that have received little attention in other bibliometric studies, such as the impact of research and the role of scientific collaborations in the publications produced by Spanish universities. Our results show that national research networks have played a fundamental role in the increase in Spanish scientific production in this discipline. The outcome of this research is an invitation to universities in developing countries to encourage and stimulate the practice of academic co-authorships since they increase the level, quality, impact and diffusion of scientific production.

Attempts to improve the policy environment have led to a growing pressure on governments in Africa to embark on policymaking that is more evidence based and considers a wide spectrum of scientific and indigenous knowledge. Local – or ‘homegrown’ – research networks on the continent can help strengthen the role of scientific knowledge in policymaking by increasing the capacity of researchers and by enhancing the visibility and communication of the research produced. While a large number of regional and sub-regional research networks have sprung up in Africa, the mere existence of networks does not guarantee their success. In reality, the impact of research networks on the science–policy interface depends on how well the networks operate in practice. We present a framework for evaluating the effectiveness of research networks in a way that is comparable across networks. The evaluation framework was used to evaluate two sub-regional research networks: the NEPAD Southern African Networks of Water Centres of Excellence (SANWACTE) and the NEPAD Southern African Network for Biosciences (SANBio). The evaluation revealed some shared constraints limiting the effectiveness of both networks, including uneven regional representation, asymmetry between network members, and difficulties in securing sufficient, diverse and sustainable resources. Further research into network design and funding models is suggested in order to enhance the role of these networks in providing locally appropriate knowledge for policymaking on the continent. Significance: • While a large number of research networks have sprung up in Africa, the mere existence of networks does not guarantee success. • Uneven regional representation, power asymmetries, and limited funding constrain the effectiveness of research networks.

This article investigates the influence exerted by relationships between academic institutions and attributes of graduate management programs in shaping the structure of the Brazilian Graduate Management Program network. The research was designed according to a social network approach and the data collection was undertaken between February and July of 2007 and included the coordinators of the 58 programs that were operating at that time, to whom a link to an electronic questionnaire was e-mailed. Thirty two (55%) of these coordinators completed the questionnaire, providing information on the relationships between their programs and the other 57 programs in the following activities: joint research, shared scientific production, promotion of scientific events, shared courses, academic staff exchanges, graduate student exchanges and participation in examination boards for dissertations and theses. The programs’ attributes were obtained from the websites of each program and CAPES. The main results showed: (1) a low density network with mostly weak relationships between programs, (2) a network structure defined by geographical location and research area, with the better connected networks in the areas of Organization and Organizational Behaviour and Strategy; and (3) a network in which UFRGS is the most central program and the FGV/SP, USP/SP, UFRGS and FGV/RJ are the most prestigious.

Este artigo verifica, por meio da análise de redes, a estrutura de relacionamento entre instituições de pesquisa no campo de administração pública e gestão social no Brasil. O relacionamento entre instituições de pesquisa foi obtido com base nas afiliações institucionais dos autores pela análise de 549 artigos publicados nos anais do Enanpad, entre 2000 e 2005. Com o uso dos softwares Ucinet 6.0 e Pajek 1.10, foi elaborada a rede de relações da área e foi possível verificar tanto as propriedades estruturais e posicionais da rede, quanto avaliar a influência da estrutura da rede na produção científica. Verificou-se que, apesar de a densidade da rede ser baixa, a distância entre as instituições é pequena, com grande componente principal. Pode-se afirmar que, na maioria dos casos, as instituições que apresentam maior número de laços estão mais globalmente centralizadas e também são importantes elos de coesão na rede. Observou-se que a maioria dos laços acontece entre instituições do próprio estado. Pode-se também afirmar que a estrutura da rede tem relação direta com os indicadores de produção científica.This article examines, through network analysis, the relationship structure of research institutions in the field of public sector management and social management in Brazil. The relationship between research institutions is identified based on the institutional affiliations of the authors, by analyzing 549 papers published in the annals of the Anpad annual meeting, from 2000 to 2005. Aided by the Ucinet 6.0 and Pajek 1.10 software, the relationship network was established, making it possible to examine not only the structural and positional properties of the network, but also the influence of the network structure on the scientific production. It was found that, despite the network's low density, the distance between institutions is small, with a much larger central component. In most cases, it can be suggested that the institutions that have the higher number of loops are globally centered and are also important to the network's cohesion. Most loops occur between institutions in the same state. Moreover, the network structure is directly correlated with the production indicators.

Nos últimos anos houve um crescimento dos programas de pesquisa em rede, em que diferentes grupos de pesquisa reúnem competências em busca de avanços tecnológicos significativos. A gestão do conhecimento (GC) é um aspecto fundamental nessas iniciativas. Este trabalho descreve as práticas de GC em grupos de pesquisa membros de uma rede de âmbito nacional, o IFM. Identifica melhores práticas e discute desafios para a sua implantação. Empregou-se o estudo de casos múltiplos, por meio de entrevistas em profundidade, aplicadas a uma amostra de grupos de pesquisa da rede. Como resultado, apresenta-se um modelo de processo de desenvolvimento de pesquisa, um modelo teórico de práticas de GC em grupos de pesquisa, a lista de melhores práticas de GC identificadas e os desafios enfrentados pelos grupos na introdução das práticas. O resultado indica o uso de poucas práticas sistematizadas e predomínio da conversão do tipo socialização (tácito-tácito). Indica, portanto, que há potencial para o desenvolvimento de metodologias e ferramentas de GC voltadas especificamente para essa classe de organizações.Recent years have seen a growth in network research programs, with different distinct research groups bringing together competencies in their search for significant technological advances. Knowledge Management (KM) is an essential factor in these initiatives, but there are few studies about this theme. This paper describes KM practices in research groups of a Brazilian national research network called the Factory of the Millennium Institute (IFM). The research method adopted here was a multicase study, using interviews, applied to a sample of research groups of this network. The result was a conceptual research process development model, a theoretical model of best KM practices and barriers observed. The data confirms the importance of knowledge management practices and a focus on the aspect of socialization of knowledge conversion (tacit-tacit). A description is given of some directions for future research in this area.

The study aims at identifying in Romanian universities certain elements indicating the presence of entrepreneurial universities or preparing the foundation thereof. An analysis of the program-related documents on the websites of these universities was conducted (university charts, strategic plans, operational plans, regulations and scientific research strategies, etc.), in order to mark the stage reached by various Romanian universities in their institutional reconstruction process. The signs of institutional innovation identified include: laboratories and research centers, technological transfer centers, consultancy centers, centers created to work within universities, partnerships with private companies and public institutions, cooperation based on common projects, the involvement of students in research, financing from economic operators, participation in international research networks, the involvement in the local development of the area where the university is located, etc.

In 2016, England's National Institute for Health Research (NIHR) celebrated its tenth anniversary as an innovative national health research system with a focus on meeting patients' needs. This provides a good opportunity to reflect on how the creation of the NIHR has greatly enhanced important work, started in 1991, to develop a health research system in England that is embedded in the National Health Service.In 2004, WHO identified a range of functions that a national health research system should undertake to improve the health of populations. Health Research Policy and Systems (HRPS) has taken particular interest in the pioneering developments in the English health research system, where the comprehensive approach has covered most, if not all, of the functions identified by WHO. Furthermore, several significant recent developments in thinking about health research are relevant for the NIHR and have informed accounts of its achievements. These include recognition of the need to combat waste in health research, which had been identified as a global problem in successive papers in the Lancet, and an increasing emphasis on demonstrating impact. Here, pioneering evaluation of United Kingdom research, conducted through the impact case studies of the Research Excellence Framework, is particularly important. Analyses informed by these and other approaches identified many aspects of NIHR's progress in combating waste, building and sustaining research capacity, creating centres of research excellence linked to leading healthcare institutions, developing research networks, involving patients and others in identifying research needs, and producing and adopting research findings that are improving health outcomes.The NIHR's overall success, and an analysis of the remaining problems, might have lessons for other systems, notwithstanding important advances in many countries, as described in papers in HRPS and elsewhere. WHO's recently established Global Observatory for Health Research and Development provides an opportunity to promote some of these lessons. To inform its work, the Observatory is sponsoring a thematic series of papers in HRPS focusing on health research issues such as funding flows, priority setting, capacity building, utilisation and equity. While important papers on these have been published, this series is still open to new submissions. [ABSTRACT FROM AUTHOR]

Background: The analysis of scientific networks has been applied in health research to map and measure relationships between researchers and institutions, describing collaboration structures, individual roles, and research outputs, and helping the identification of knowledge gaps and cooperation opportunities. Driven by dengue continued expansion in Brazil, we explore the contribution, dynamics and consolidation of dengue scientific networks that could ultimately inform the prioritisation of research, financial investments and health policy. Method: Social network analysis (SNA) was used to produce a 20-year (1995-2014) retrospective longitudinal evaluation of dengue research networks within Brazil and with its partners abroad, with special interest in describing institutional collaboration and their research outputs. Results: The analysis of institutional co-authorship showed a significant expansion of collaboration over the years, increased international involvement, and ensured a shift from public health research toward vector control and basic biomedical research, probably as a reflection of the expansion of transmission, high burden and increasing research funds from the Brazilian government. The analysis identified leading national organisations that maintained the research network connectivity, facilitated knowledge exchange and reduced network vulnerability. Conclusions: SNA proved to be a valuable tool that, along with other indicators, can strengthen a knowledge platform to inform future policy, planning and funding decisions. The paper provides relevant information to policy and planning for dengue research as it reveals: (1) the effectiveness of the research network in knowledge generation, sharing and diffusion; (2) the near-absence of collaboration with the private sector; and (3) the key central organisations that can support strategic decisions on investments, development and implementation of innovations. In addition, the increase in research activities and collaboration has not yet significantly affected dengue transmission, suggesting a limited translation of research efforts into public health solutions. [ABSTRACT FROM AUTHOR]

Background: Research networks that facilitate collaborative research are increasing both regionally and globally and such collaborations contribute greatly to knowledge transfer particularly in health research. The Palliative Care Research Network is an Irish-based network that seeks to create opportunities and engender a collaborative environment to encourage innovative research that is relevant for policy and practice. The current review outlines a methodology to identify cross-cutting messages to identify how dissemination outputs can be optimized to ensure that key messages from this research reaches all knowledge users. Methods/design: Preferred reporting items for systematic review and meta-analysis protocol guidelines will inform the search and analysis plan to ensure that the synthesis of the data is as rigorous as possible. An approach based on critical interpretative synthesis will be adapted to include a thematic synthesis for the identification of higher-order themes and messages from a body of dissemination products generated by the Palliative Care Research Network. Discussion: The thematic synthesis outlined in the present protocol offers a novel method of synthesising data from a focused research network that employs a variety of dissemination materials as a means of identifying key themes and messages from a specific body of research. The high-level themes and messages will be identified from the thematic synthesis, widely disseminated and targeted towards a range of stakeholders and knowledge users such as carers, health and social care professionals, policy makers and researchers. [ABSTRACT FROM AUTHOR]

Good Participatory Practice Guidelines for TB Drug Trials (GPP-TB) were issued in 2012, based on similar guidelines for HIV prevention and reflecting growing acceptance of the importance of community engagement and participatory strategies in clinical research. Though the need for such strategies is clear, evaluation of the benefits and burdens are needed. Working with a diverse group of global TB stakeholders including advocates, scientists, and ethicists, we used a Theory of Change approach to develop an evaluation framework for GPP-TB that includes a clearly defined ethical goal, a set of powerful strategies derived from GPP-TB practices for achieving the goal, and outcomes connecting strategies to goal. The framework is a first step in systematically evaluating participatory research in clinical trials. [ABSTRACT FROM AUTHOR]

This paper builds upon the literature which provides conflicting theoretical insights and empirical results concerning the importance of companies’ collaborative relations, their position within a network of collaborative relations and the effects on their innovative performance. Taking the importance of collaborations and networks in the pharmaceutical industry into account, the paper untangles the influence of the firm’s co-publication relations with different types of partners and its network position on the company’s product innovation in a specific disease area—cancer. We find rather robust evidence that in particular, companies’ indirect connections within the co-publication network, including connections to academic institutions and biotechnology companies, support product innovation. In contrast to evidence in the strategic alliance literature, direct co-publication links to biotechnology companies do not support product innovation in terms of new cancer medications. [ABSTRACT FROM AUTHOR]

Introduction: The expanded availability of electronic health information has led to increased interest in distributed health data research networks. Distributed Research Network Model: The distributed research network model leaves data with and under the control of the data holder. Data holders, network coordinating centers, and researchers have distinct needs and challenges within this model. Software Enabled Governance: PopMedNet: The concerns of network stakeholders are addressed in the design and governance models of the PopMedNet software platform. PopMedNet features include distributed querying, customizable workflows, and auditing and search capabilities. Its flexible role-based access control system enables the enforcement of varying governance policies. Selected Case Studies: Four case studies describe how PopMedNet is used to enforce network governance models. Issues and Challenges: Trust is an essential component of a distributed research network and must be built before data partners may be willing to participate further. The complexity of the PopMedNet system must be managed as networks grow and new data, analytic methods, and querying approaches are developed. Conclusions: The PopMedNet software platform supports a variety of network structures, governance models, and research activities through customizable features designed to meet the needs of network stakeholders. Acknowledgements The work described was supported by the following grants and contracts: Efforts to Develop the Sentinel Initiative, FDA (HHSF223200910006I); PCORI National Patient-Centered Clinical Research Network Coordinating Center, PCORI (PCO-COORDCTR2013); Health Care Systems Research Collaboratory - Coordinating Center, NIH (1U54AT007748-01) [ABSTRACT FROM AUTHOR]

Introduction The Patient Outcomes Research to Advance Learning (PORTAL) Network was established with funding from the Patient-Centered Outcomes Research Institute (PCORI) in 2014. The PORTAL team adapted governance structures and processes from past research network collaborations. We will review and outline the structures and processes of the PORTAL governance approach and describe how proactively focusing on priority areas helped us to facilitate an ambitious research agenda. Background For years a variety of funders have supported large-scale infrastructure grants to promote the use of clinical datasets to answer important comparative effectiveness research (CER) questions. These awards have provided the impetus for health care systems to join forces in creating clinical data research networks. Often, these scientific networks do not develop governance processes proactively or systematically, and address issues only as problems arise. Even if network leaders and collaborators foresee the need to develop governance approaches, they may underestimate the time and effort required to develop sound processes. The resulting delays can impede research progress. Innovation Because the PORTAL sites had built trust and a foundation of collaboration by participating with one another in past research networks, essential elements of effective governance such as guiding principles, decision making processes, project governance, data governance, and stakeholders in governance were familiar to PORTAL investigators. This trust and familiarity enabled the network to rapidly prioritize areas that required sound governance approaches: responding to new research opportunities, creating a culture of trust and collaboration, conducting individual studies, within the broader network, assigning responsibility and credit to scientific investigators, sharing data while protecting privacy/security, and allocating resources. The PORTAL Governance Document, complete with a Toolkit of Appendices is included for reference and for adaptation by other networks. Credibility As a result of identifying project-based governance priorities (IRB approval, subcontracting, selection of new research including lead PI and participating sites, and authorship) and data governance priorities (reciprocal data use agreement, analytic plan procedures, and other tools for data governance), PORTAL established most of its governance structure by Month 6 of the 18 month project. This allowed science to progress and collaborators to experience first-hand how the structures and procedures functioned in the remaining 12 months of the project, leaving ample time to refine them and to develop new structures or processes as necessary. Discussion The use of procedures and processes with which participating investigators and their home institutions were already familiar allowed project and regulatory requirements to be established quickly to protect patients, their data, and the health care systems that act as stewards for both. As the project progressed, PORTAL was able to test and adjust the structures it put place, and to make substantive revisions by Month 17. As a result, priority processes have been predictable, transparent and effective. Conclusion/Next steps Strong governance practices are a stewardship responsibility of research networks to justify the trust of patients, health plan members, health care delivery organizations, and other stakeholders. Well-planned governance can reduce the time necessary to initiate the scientific activities of a network, a particular concern when the time frame to complete research is short. Effective network and data governance structures protect patient and institutional data as well as the interests of investigators and their institutions, and assures that the network has built an environment to meet the goals of the research. Acknowledgements This study used the infrastructure developed by the PORTAL (Patient Outcomes Research to Advance Learning) Network, a consortium of 4 integrated delivery systems (Kaiser Permanente, Group Health Cooperative, HealthPartners, and Denver Health) and their affiliated research centers, with funding support from a contract awarded by the Patient-Centered Outcomes Research Institute (PCORI). The authors also wish to acknowledge members of the PORTAL Steering Committee and the Data Core: Arthur Davidson, MD, MSPH, Denver Health and Hospital Authority; Kristina Lewis, MD, MPH, Kaiser Permanente Georgia; Beth Waitzfelder, PhD, Kaiser Permanente Hawaii; Mary L. Durham, PhD, Kaiser Permanente Northwest; and Michael Kahn, MD, PhD, University of Colorado Denver. [ABSTRACT FROM AUTHOR]

Introduction: The need for collaborations with bidirectional data exchange within and across distributed research networks has increased. Currently Existing Activities: This commentary will present currently publically available activities including the Sentinel Initiative, the Patient-Centered Outcomes Research Network (PCORnet), and the NIH Research Collaboratory. Current Technical and Governance Challenges: Even with the advances made in this arena, several technical and governance challenges remain including the evolution of clinically rich data sources and modes of care, availability of longitudinal data resources through data linkage, and the processes to share data and link data resources while ensuring privacy and proprietary control of data. Perspective: These activities will require enhanced levels of trust between entities involved in the delivery of healthcare (Trust 2.0) in addition to the trust health plans and health systems have with patients (Trust 1.0). Recent public funding announcements and public access to data resources will likely improve the landscape of bidirectional data collaborations in distributed research. Acknowledgements The authors wish to thank Marcus Wilson and Michael Pollack for reviews on earlier drafts of this commentary. [ABSTRACT FROM AUTHOR]

Objective To explore the ability of an integrated health information infrastructure to support outcomes research. Methods A systematic review of articles published from 1983 to 2012 by Regenstrief Institute investigators using data from an integrated electronic health record infrastructure involving multiple provider organisations was performed. Articles were independently assessed and classified by study design, disease and other metadata including bibliometrics. Results A total of 190 articles were identified. Diseases included cognitive, (16) cardiovascular, (16) infectious, (15) chronic illness (14) and cancer (12). Publications grew steadily (26 in the first decade vs. 100 in the last) as did the number of investigators (from 15 in 1983 to 62 in 2012). The proportion of articles involving non-Regenstrief authors also expanded from 54% in the first decade to 72% in the last decade. During this period, the infrastructure grew from a single health system into a health information exchange network covering more than 6 million patients. Analysis of journal and article metrics reveals high impact for clinical trials and comparative effectiveness research studies that utilised data available in the integrated infrastructure. Discussion Integrated information infrastructures support growth in high quality observational studies and diverse collaboration consistent with the goals for the learning health system. More recent publications demonstrate growing external collaborations facilitated by greater access to the infrastructure and improved opportunities to study broader disease and health outcomes. Conclusions Integrated information infrastructures can stimulate learning from electronic data captured during routine clinical care but require time and collaboration to reach full potential. [ABSTRACT FROM AUTHOR]

As redes de pesquisa impulsionam a criação do conhecimento e o processo de inovação resultantes do intercâmbio de informações e, sobretudo, da junção de competências de grupos que unem esforços na busca de metas comuns. Este artigo apresenta breve histórico dos estudos relativos às redes de colaboração científica, sua evolução cronológica e as principais abordagens de estudo. Discute-se particularmente como as análises de redes de pesquisa podem ser revisitadas à luz das possibilidades recentes surgidas com as novas Tecnologias de Informação e de Comunicação (TICs). Para tal, apresentam-se exemplos de sistemas de conhecimento no âmbito da Plataforma Lattes: Egressos, Colaboradores e Redes-GP. Esses sistemas permitem executar, com grandes volumes de dados, análises de redes por meio de algoritmos descritos na literatura, bem como criar novas formas de análise possibilitadas pelas TICs.Scientific networks have fostered knowledge creation and the innovation process by means of information interchange and mainly by the combination of competences of different groups searching for common goals. In this paper we outline the chronology and review the main approaches to study collaborative scientific networks. More specifically the article addresses the possibilities brought by the new Information and Communication Technologies (ICTs) to scientific network research by discussing examples of knowledge systems from the Lattes Platform: Egressos (Alumni), Colaboradores (Collaborators), and Redes-GP (Research Group Networks). Those systems allow for the realization, with wide amounts of data, of social network analysis, both using algorithms from the literature and creating new approaches brought about by the ICTs.

• The advancement of drug repurposing (DR) relies on scientific leadership and innovative institutions with access to knowledge. • A bibliometric review and a social network analysis were used to map the trends in DR research and to identify innovation and knowledge leaders (IKLs). • Most active countries, research trends, and major funders, as well as the global research network, were mapped. • Using a combination of network centrality metrics, 41 IKLs affiliated to central and pericentral institutions in the global research network were identified. The advancement of drug repurposing (DR) relies on scientific leadership and innovative institutions with access to knowledge. We performed a bibliometric and social network analysis (covering the period 2011–2020) to map the DR research trends and to identify innovation and knowledge leaders (IKLs). The indexing rate of DR publications has steadily increased. Major research areas included emerging viruses, cancer, methodological approaches, preclinical research, and infectious diseases. Government and academia accounted for nearly 65% of funding. Using a combination of network centrality metrics, 41 IKLs affiliated to central and pericentral institutions in the global research network were identified. These IKLs can facilitate the flow of knowledge and are best positioned to promote interactions within the network, with the potential to contribute significantly to advancing the DR field. [ABSTRACT FROM AUTHOR]

Background: Little is known about patient engagement in the context of large teams or networks. Quantitative data from a larger sample of CHILD-BRIGHT Network members suggest that patient engagement was beneficial and meaningful. To extend our understanding of the barriers, facilitators, and impacts identified by patient-partners and researchers, we conducted this qualitative study., Methods: Participants completed semi-structured interviews and were recruited from the CHILD-BRIGHT Research Network. A patient-oriented research (POR) approach informed by the SPOR Framework guided the study. The Guidance for Reporting Involvement of Patients and the Public (GRIPP2-SF) was used to report on involvement of patient-partners. The data were analyzed using a qualitative, content analysis approach., Results: Twenty-five CHILD-BRIGHT Network members (48% patient-partners, 52% researchers) were interviewed on their engagement experiences in the Network's research projects and in network-wide activities. At the research project level, patient-partners and researchers reported similar barriers and facilitators to engagement. Barriers included communication challenges, factors specific to patient-partners, difficulty maintaining engagement over time, and difficulty achieving genuine collaboration. Facilitators included communication (e.g., open communication), factors specific to patient-partners (e.g., motivation), and factors such as respect and trust. At the Network level, patient-partners and researchers indicated that time constraints and asking too much of patient-partners were barriers to engagement. Both patient-partners and researchers indicated that communication (e.g., regular contacts) facilitated their engagement in the Network. Patient-partners also reported that researchers' characteristics (e.g., openness to feedback) and having a role within the Network facilitated their engagement. Researchers related that providing a variety of activities and establishing meaningful collaborations served as facilitators. In terms of impacts, study participants indicated that POR allowed for: (1) projects to be better aligned with patient-partners' priorities, (2) collaboration among researchers, patient-partners and families, (3) knowledge translation informed by patient-partner input, and (4) learning opportunities., Conclusion: Our findings provide evidence of the positive impacts of patient engagement and highlight factors that are important to consider in supporting engagement in large research teams or networks. Based on these findings and in collaboration with patient-partners, we have identified strategies for enhancing authentic engagement of patient-partners in these contexts., (© 2023. The Author(s).)