Development Of Research Infrastructure Research Articles

Enhancing Clinical Content and Race/Ethnicity Data in Statewide Hospital Administrative Databases: Obstacles Encountered, Strategies Adopted, and Lessons Learned.

Eight grant teams used Agency for Healthcare Research and Quality infrastructure development research grants to enhance the clinical content of and improve race/ethnicity identifiers in statewide all-payer hospital administrative databases. Grantees faced common challenges, including recruiting data partners and ensuring their continued effective participation, acquiring and validating the accuracy and utility of new data elements, and linking data from multiple sources to create internally consistent enhanced administrative databases. Successful strategies to overcome these challenges included aggressively engaging with providers of critical sources of data, emphasizing potential benefits to participants, revising requirements to lessen burdens associated with participation, maintaining continuous communication with participants, being flexible when responding to participants' difficulties in meeting program requirements, and paying scrupulous attention to preparing data specifications and creating and implementing protocols for data auditing, validation, cleaning, editing, and linking. In addition to common challenges, grantees also had to contend with unique challenges from local environmental factors that shaped the strategies they adopted. The creation of enhanced administrative databases to support comparative effectiveness research is difficult, particularly in the face of numerous challenges with recruiting data partners such as competing demands on information technology resources. Excellent communication, flexibility, and attention to detail are essential ingredients in accomplishing this task. Additional research is needed to develop strategies for maintaining these databases when initial funding is exhausted.

지역사회 건강증진 연구방법 및 전략으로서의 포토보이스

Objectives: This study aims to explain the process of photovoice, to review relevant research cases, and to discuss the issues in photovoice applications for community health promotion. Methods: Literature review is performed on photovoice manuals, systematic review literature on international photovoice research, and Korean photovoice studies. The review was based on 8 research papers and 6 practice manuals. Results: Photovoice so far has specified its orientation to participatory research. Its implementation includes photovoice training, photo taking and sharing, interviews and discussions, photo exhibit, and social action planning for policy change. SHOWeD questions and the like guide photovoice discussions while they face some challenges in application. Social action planning for policy change part of the photovoice needs attention in implementation and evaluation. Conclusions: Adherence to the participatory principles and action research orientation in photovoice requires persistent efforts. Process and impact evaluation with development of photovoice research infrastructure will enhance photovoice application.

The challenges of commercializing second-generation transgenic crop traits necessitate the development of international public sector research infrastructure.

It has been 30 years since the first transformation of a gene into a plant species, and since that time a number of biotechnology products have been developed, with the most important being insect- and herbicide-resistant crops. The development of second-generation products, including nutrient use efficiency and tolerance to important environmental stressors such as drought, has, up to this time, been less successful. This is in part due to the inherent complexities of these traits and in part due to limitations in research infrastructure necessary for public sector researchers to test their best ideas. Here we discuss lessons from previous work in the generation of the first-generation traits, as well as work from our labs and others on identifying genes for nitrogen use efficiency. We then describe some of the issues that have impeded rapid progress in this area. Finally, we propose the type of public sector organization that we feel is necessary to make advances in important second-generation traits such as nitrogen use efficiency.

HIV practitioners in Madrid and New York improving inclusion of underrepresented populations in research.

Practitioners have frequent contact with populations underrepresented in scientific research--ethnic/racial groups, sexual minorities and others at risk for poor health and whose low participation in research does not reflect their representation in the general population. Practitioners aspire to partner with researchers to conduct research that benefits underrepresented groups. However, practitioners are often overlooked as a work force that can help erase inclusion disparities. We recruited (n = 282) practitioners (e.g. physicians, social workers, health educators) to examine associations between their attitudes toward research purposes, risks, benefits and confidentiality and their involvement in recruitment, interviewing and intervention facilitation. Participants worked in community-based agencies in Madrid and New York City (NYC), two large and densely populated cities. We used cross-sectional data and two-sample tests to compare attitudes toward research and practitioner involvement in recruiting, interviewing and facilitating interventions. We fit logistic regression models to assess associations between practitioner attitudes toward ethical practices and recruitment, interviewing and facilitating interventions. The likelihood of recruiting, interviewing and facilitating was more pronounced among practitioners agreeing more strongly with ethical research practices. Though Madrid practitioners reported stronger agreement with ethical research practices, NYC practitioners were more involved in recruiting, interviewing and facilitating interventions. Practitioners can be trained to improve attitudes toward ethical practices and increase inclusion of underrepresented populations in research. Funders and researchers are encouraged to offer opportunities for practitioner involvement by supporting research infrastructure development in local agencies. Practices that promise to facilitate inclusion herein may be used in other countries.

200th ENMC International Workshop “European Reference Networks: Recommendations and Criteria in the Neuromuscular field”, 18–20 October 2013, Naarden, the Netherlands

200th ENMC International Workshop “European Reference Networks: Recommendations and Criteria in the Neuromuscular field”, 18–20 October 2013, Naarden, the Netherlands

POSSIBILITIES FOR PRESENTING THE LATGALIAN LANGUAGE MATERIAL IN THE TRANSLATING TRILINGUAL DICTIONARIES

POSSIBILITIES FOR PRESENTING THE LATGALIAN LANGUAGE MATERIAL IN THE TRANSLATING TRILINGUAL DICTIONARIES

Report on the 1st Indian cancer congress 2013.

The 1st Indian Cancer Congress (Delhi, 21-24th Nov) has been a reminder that the world of cancer is not all about the ASCOs and the ECCOs. What made this conference arguably more impactful and important globally than most others, was its relevance not just for India but also for many other emerging and low-income economies. Most cancer patients will live and die far away from high-income systems. Indeed India is pioneering in many domains of cancer research that high-income countries could and should learn from, from research into cost-effective site-specific care pathways to technological innovations. In a country as socio-politically diverse as India it was a triumph to bring the four major associations (Association of Radiation Oncologists of India, Indian Society of Medical & Pediatric Oncology, Indian Association of Surgical Oncology and the Indian Society of Oncology) together for the first time. With over four thousand delegates the program reflected the richness and diversity of India. Plenary sessions, special tracts, and education jostled with round-tables on a huge range of topics. Coffee tables, seemingly ever open, hummed with old friends catching up, jocular arguments and new research relationships. It was dynamic, slightly chaotic but hugely intellectually stimulating. The round tables on subjects such as “beyond tobacco control” and cost effective cancer care were hotbeds of debate. These policy debate sessions were excellent and far better than anything heard at other conferences. The conference had a strong focus on site-specific research with a really strong showing from the surgical community, another pleasant change from the dominant medical oncology nature of conferences in Europe and North America. Nursing and palliative care also had a strong showing which was excellent given that in India they both struggle for recognition. Highlights? There were many and therefore it would be unfair to pick any one individual or discipline out. However, it is worth mentioning the National Cancer Grid (NCG) of India, now expanded to 36 cancer centres which had its third meeting at the Congress. There is little doubt that this is a huge step forward for tackling cancer in India. The NCG is undertaking, amongst other areas, issues of quality assurance for cancer care and the development of research infrastructure. In a country where health is a mostly a state responsibility and where geographic variations are marked, the ability to bring together cancer leaders from across state boundaries has been a major achievement. The commitment by the NCG leaders to improving cancer care quality through evidenced-based guidelines, for example like those developed through Tata Memorial Centre reflects a reality, even on show at the congress, of a lack of governance around the quality of care in many places. It was a privilege to attend this Congress and the organisers and participants should be congratulated for hosting a scientific meeting that has national and global impact. Watch videos from the 1st Indian Cancer Congress for free

The Entrepreneurial University: The Building Block of the Innovation Economy

This paper explores the role of entrepreneurial universities in economic growth and development. Specifically, it defines the indicators of an entrepreneurial university, traces the impact of university innovation on economic growth, and correlates the university ranking with indicators of innovation, competitiveness, and development. The Quacquarelli Symonds (QS) World University Rankings 2011/12 provided the data for entrepreneurial universities. Correlates of rankings of entrepreneurial universities include the global innovation index, global competitive index and human development index. The top 400 world universities are large (enrolment over 12,000) and historic (over 100 years). They cluster in Europe and North America, offer fully comprehensive programs, and have high research intensity. U.S. data show that university innovations contribute substantially to jobs, value creation and industry output. The Pearson coefficients indicate that QS university ranking is significantly and positively correlated with research infrastructure (gross expenditure in R&D, number of researchers, total patents) and economic development (gross national income, global competitiveness index, global innovation index and human development index). Thus, research infrastructures are necessary for entrepreneurial universities to flourish. Once established, entrepreneurial universities, through job and value creation, transforms the country into an innovation economy, boost its global competitiveness, and improve its quality of life.Keywords: Business and economics, entrepreneurial university, correlation analysis, globalranking

An Approach to Analyzing Working Practices of Research Communities in the Humanities

The need for a firm understanding of the working practices of researchers in the humanities emerges as a prerequisite for the development of effective digital research infrastructures. This paper will focus on the rationale behind the design and implementation of two related studies conducted in the context of two European e-Infrastructures projects, DARIAH and EHRI. Within DARIAH the challenge involved conducting, analysing and understanding research practices of arts and humanities researchers, a largely ill-defined community encompassing a wide spectrum of disciplines. Each of them deals with a variety of objects employing an extensive number of methods. In the context of EHRI, the challenge is slightly different, due to the involvement of a better-defined research community. Holocaust researchers share well-identified objects, common ground on methods, and handle similar setbacks. In this paper we discuss the approach adopted for designing and implementing qualitative user-centric studies aimed at capturing activities, methods, and types of information objects employed by researchers grounded in identified research goals and questions. It addresses both generic and specific entities and processes, and supports the understanding of researchers’ working practices in settings as diverse and wide as DARIAH, or as specialized as EHRI. The outcomes of the analysis of working practices are used in determining user requirements for digital infrastructures to serve the respective research communities.

What are Research Infrastructures?

This paper reflects on what research infrastructures are, suggesting that there are two dominant themes – one arising from the funding bodies postulating that research infrastructure development offers unprecedented opportunities to drive forward that which is new, which is innovative, and which drives competition and success; the other which suggests that infrastructure is subordinate, a substrate that supports the real work of research, and which becomes a thing that shifts into the background and is invisible. This paper argues that neither of these positions is wholly true or particularly helpful as we move to invest significant sums of money in digital research infrastructures. Instead, I propose that we need to view infrastructure as a material and experiential presence that is embedded in the practices and experience of research, which builds on and enhances that which already exists, that unites scholars with archivists, librarians, and museum curators, and that also finds a place for the amateur. Finally, and most importantly, I wish to argue that we must foreground the ‘research’ in ‘research infrastructures’. concentrating less on the component parts of infrastructure and instead focusing on its relationship to research practices.

“These are Good Problems to Have…”: Establishing a Collaborative Research Partnership in East Africa

In the context of a long-term institutional 'twinning' partnership initiated by Indiana and Moi Universities more than 22 years ago, a vibrant program of research has arisen and grown in size and stature. The history of the AMPATH (Academic Model Providing Access to Healthcare) Research Program is described, with its distinctive attention to Kenyan-North American equity, mutual benefit, policies that support research best practices, peer review within research working groups/cores, contributions to clinical care, use of healthcare informatics, development of research infrastructure and commitment to research workforce capacity. In the development and management of research within our partnership, we describe a number of significant challenges we have encountered that require ongoing attention, many of which are "good problems" occasioned by the program's success and growth. Finally, we assess the special value a partnership program like ours has created and end by affirming the importance of organizational diversity, solidarity of purpose, and resilience in the 'research enterprise.'

“This Drug May Work, But Is It Worth the Cost?” Can Comparative Effectiveness Research Help Tame Rising Health Care Costs?

“This Drug May Work, But Is It Worth the Cost?” Can Comparative Effectiveness Research Help Tame Rising Health Care Costs?

Tools and methods for capturing Twitter data during natural disasters

During the course of several natural disasters in recent years, Twitter has been found to play an important role as an additional medium for many-to-many crisis communication. Emergency services are successfully using Twitter to inform the public about current developments, and are increasingly also attempting to source first-hand situational information from Twitter feeds (such as relevant hashtags). The further study of the uses of Twitter during natural disasters relies on the development of flexible and reliable research infrastructure for tracking and analysing Twitter feeds at scale and in close to real time, however. This article outlines two approaches to the development of such infrastructure: one which builds on the readily available open source platform yourTwapperkeeper to provide a low-cost, simple, and basic solution; and one which establishes a more powerful and flexible framework by drawing on highly scaleable, state-of-the-art technology.

Developing the Community Empowered Research Training Program: Building Research Capacity for Community-Initiated and Community-Driven Research

Health promotion practice research conducted by or in partnership with community-based organizations (CBOs) serving Asian Americans, Native Hawaiians, and Pacific Islanders (AA and NHPI) can address health disparities. Few CBOs have the tools to integrate or initiate research into their programmatic agenda. The New York University (NYU) Center for the Study of Asian American Health (CSAAH) and the Asian & Pacific Islander American Health Forum (APIAHF) created a partnership with the goal to support CBO research infrastructure development by creating the Community Empowered Research Training (CERT) program. A survey was conducted and discussions held with CBO leaders representing AA and NHPI communities to inform the development of the CERT program. The majority of participants are engaged in service-related research and reported interest in building their research capacity. CBOs may require help reframing how data can be collected and used to better inform programmatic activities and to address health disparities facing AA and NHPI communities. CBOs possess both an interest in and access to local knowledge that can inform health priorities. Findings have been applied to the CERT program to build capacity to support community-initiated/driven research to address health disparities affecting AAs and NHPIs.

Selection and Implementation of the ISO9001 Standard to Support Biobanking Research Infrastructure Development

The UK DNA Banking Network (UDBN) undertakes biobanking for genetic epidemiology research projects. A task assigned to it is the addition of scientific value to the resources under its management. This task is implemented by enabling appropriate access to the resources. We reasoned that access requires not only a fair access policy but also a quality policy implemented via a Quality Management System (QMS). UDBN decided to achieve consistency in sample management by identifying and implementing a suitable QMS with external certification. UDBN selected ISO9001 as a QMS. It was soon recognized that the QMS needed to encompass not only UDBN but also the academic department in which UDBN sits. An external certification body was selected and a post was dedicated to the role of QMS-Management Representative. Specialized software was acquired. A Quality Manual, individual training files and Standard Operating Procedures (SOPs) were prepared. QMS training was provided. These actions led to the approval of the ISO9001:2000 standard. This is the first report of an academic genetic epidemiology research laboratory receiving approval of the ISO9001 standard to validate the consistency of its operations. ISO9001 was selected because of its greater breadth of scope compared with other QMSs. We found that while laboratory protocols are transferable between labs, QMS SOPs are not transferable. This has consequences for efforts to ensure consistency across a biobank network: joint adoption of one multiparty QMS is probably required. We found that it was not possible to implement a QMS for biobanking in isolation: its host university department needed to be included. We have found that ISO9001 helps enable longitudinal accrual of data on the use of biobanking methods. Thus ISO9001 is not only a management tool to improve access to a biobanking research infrastructure but also a research tool for research infrastructure development.

A Model for Sustainable Development of Child Mental Health Infrastructure in the LMIC World: Vietnam as a Case Example

Children and adolescents are among the highest need populations in regards to mental health support, especially in low and middle income countries (LMIC). Yet resources in LMIC for prevention and treatment of mental health problems are limited, in particular for children and adolescents. In this paper, we discuss a model for development of child and adolescent mental health (CAMH) resources in LMIC that has guided a ten year initiative focused on development of CAMH treatment and research infrastructure in Vietnam. We first review the need for development of mental health resources for children and adolescents in general, and then in Vietnam. We next present the model that guided our program as it developed, focused on the twin Capacity Development Goals of efficacy and sustainability, and the Capacity Development Targets used to move towards these goals. Finally we discuss our CAMH development initiative in Vietnam, the center of which has been development of a graduate program in clinical psychology at Vietnam National University, linking program activities to this model.

Building a biomedical research program in Qatar

The State of Qatar under the leadership of His Highness the Emir Hamad Bin Khalifa Al Thani has invested heavily into higher education and research infrastructure development through Qatar Foundation under the leadership of Her Highness Sheikha Mozah Bint Nasser Al Missned. Part of that effort is the establishment of the biomedical research program at Weill Cornell Medical College in Qatar (WCMC-Q), which, in collaboration with other stakeholders in Qatar, aims at instituting a world-class biomedical research program in Qatar. This presentation will highlight the efforts over the past two years expanded toward establishing the WCMC-Q research program. It will present a model for research infrastructure ramp-up in Qatar and the region. We will discuss: research support services including compliance and grants and contracts; the organization, staffing and high-end equipment of core research laboratories that are becoming increasingly important for collaborative biomedical research; and scientific areas of focus for the WCMC-Q program in the context of national priorities, including the diabetes, obesity and metabolic syndrome center of excellence that is underway.

Practical and Political Problems With a Global Research Tax

Practical and Political Problems With a Global Research Tax

University of Michigan Addiction Research Center (UMARC): development, evolution, and direction

ABSTRACTA historical summary is provided of the evolution of the University of Michigan Addiction Research Center (UMARC) since its origins in 1988. Begun as an National Institutes of Health (NIH) research center within a Department of Psychiatry and focused solely upon alcohol and aging, early work emphasized treatment efficacy, differential outcome studies and characterization of the neurophysiological and behavioral manifestations of chronic alcoholism. Over the last 15 years, UMARC has extended its research focus along a number of dimensions: its developmental reach has been extended etiologically by studies of risk early in the life span, and by way of work on earlier screening and the development of early, brief treatment interventions. The addiction focus has expanded to include other drugs of abuse. Levels of analysis have also broadened, with work on the molecular genetics and brain neurophysiology underlying addictive processes, on one hand, and examination of the role of the social environment in long‐term course of disorder on the other hand. Activities have been facilitated by several research training programs and by collaborative relationships with other universities around the United States and in Poland. Since 2002, a program for research infrastructure development and collaboration has been ongoing, initially with Poland and more recently with Ukraine, Latvia and Slovakia. A blueprint for the future includes expanded characterization of the neurobiology and genetics of addictive processes, the developmental environment, as well as programmatic work to address the public health implications of our ability to identify risk for disorder very early in life.

White Paper on CTSA Consortium Role in Facilitating Comparative Effectiveness Research

Background Appreciating the need to better translate biomedical research into improved clinical care and health, the NIH Roadmap was initiated in 2003 to focus on this by strengthening NIH’s central role in clinical research and clinical research training. As part of the needed re-engineering, in 2006 NIH began the CTSA program. At this writing (Summer 2009), there are 39 CTSAs at leading universities across the United States, each having a clinical research graduate program and extensive resources for promoting clinical and translational research. Each of these, and the CTSA Consortium as a whole, are committed to transforming clinical and translational research to maximize impact on health. The CTSAs bring to this challenge an array of capacities, extensive research infrastructure, formal training and career development programs, community engagement of the public and of clinical practice communities, and informatics related to research and clinical practice. Various CTSAs have different areas of emphasis, including along the spectrum of translational research from bench to patient bedside (the first translational step, “T1”), from the bedside to general use in clinical practice (“T2”), and from clinical practice to public benefit and policy (“T3”). This broad array of activities has allowed the national consortium to be responsive to needs all along this path of translation of biomedical research into practice and public benefit. Although the activities of CER can be seen as primarily involving T2 and T3 research, they also can be seen as focusing on the optimal translation of T1 research into effective treatment, and thus the very epitome of work in which CTSAs should be deeply involved. This appreciation was reinforced by CER’s selection as a key Strategic Goal focus of the CTSA Consortium. In this context, the CER Strategic Goal of the CTSA Consortium is to promote the translation of the results of clinical and translational research into practice and public policy. In service of this, in two sections below, we review the span of CER resources across the CTSA Consortium and propose potential roles for CTSAs in supporting CER. As a point of reference for this White Paper, below are two important definitions of CER from reports released at the end of June 2009, from the IOM and from the FCC-CER: Definition from the IOM Report on Priorities for CER The generation and synthesis of evidence that compares the benefits and harms of alternative methods to prevent, diagnose, treat, and monitor a clinical condition or to improve the delivery of care. The purpose of CER is to assist patients, clinicians, purchasers, and policy makers, and the public to make informed decisions that will improve healthcare at both the individual and population levels.