Counting the Costs of Open Access: the estimated cost to UK research organisations of achieving compliance with open access mandates in 2013 / 14 – Research Consulting – November 2014
“Commissioned by London Higher and SPARC Europe, Counting the Costs of Open Access highlights the compliance burden associated with the move to open access publication of research articles, and for the first time identifies the administrative cost of making articles open access through the ‘gold’ and ‘green’ routes. Based on a national survey of UK research organisations conducted in September 2014, the report’s key findings include:”
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Big Data and Public Health – POST Note – Parliament [UK] – 22 July 2014
“Patient health records and other large scale medical and administrative datasets are increasingly being considered as a valuable tool for the study and improvement of health. This POSTnote examines the sources of data, their current and potential uses for health improvement, and the legal and practical issues raised by data use for public health or research purposes.”
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Contemporary Issues for Protecting Patients in Cancer Research: Workshop Summary – Institute of Medicine – 2014
Institute of Medicine. Contemporary Issues for Protecting Patients in Cancer Research: Workshop Summary. Washington, DC: The National Academies Press, 2014.
In the nearly 40 years since implementation of federal regulations governing the protection of human participants in research, the number of clinical studies has grown exponentially. These studies have become more complex, with multisite trials now common, and there is increasing use of archived biospecimens and related data, including genomics data. In addition, growing emphasis on targeted cancer therapies requires greater collaboration and sharing of research data to ensure that rare patient subsets are adequately represented. Electronic records enable more extensive data collection and mining, but also raise concerns about the potential for inappropriate or unauthorized use of data, bringing patient protections into a new landscape. There are also long-standing concerns about the processes and forms used to obtain informed consent from patients participating in clinical studies. These changes and challenges raise new ethical and practical questions for the oversight of clinical studies, and for protecting patients and their health information in an efficient manner that does not compromise the progress of biomedical research.
Contemporary Issues for Protecting Patients in Cancer Research is the summary of a workshop convened by the National Cancer Policy Forum of the Institute of Medicine in February 2014 to explore contemporary issues in human subjects protections as they pertain to cancer research, with the goal of identifying potential relevant policy actions. Clinical researchers, government officials, members of Institutional Review Boards, and patient advocates met to discuss clinical cancer research and oversight. This report examines current regulatory provisions that may not adequately protect patients or may be hindering research, and discusses potential strategies and actions to address those challenges.”
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Agency for Healthcare Research and Quality (US)
This User’s Guide is intended to support the design, implementation, analysis, interpretation, and quality evaluation of registries created to increase understanding of patient outcomes. For the purposes of this guide, a patient registry is an organized system that uses observational study methods to collect uniform data (clinical and other) to evaluate specified outcomes for a population defined by a particular disease, condition, or exposure, and that serves one or more predetermined scientific, clinical, or policy purposes. A registry database is a file (or files) derived from the registry. Although registries can serve many purposes, this guide focuses on registries created for one or more of the following purposes: to describe the natural history of disease, to determine clinical effectiveness or cost-effectiveness of health care products and services, to measure or monitor safety and harm, and/or to measure quality of care.
Registries are classified according to how their populations are defined. For example, product registries include patients who have been exposed to biopharmaceutical products or medical devices. Health services registries consist of patients who have had a common procedure, clinical encounter, or hospitalization. Disease or condition registries are defined by patients having the same diagnosis, such as cystic fibrosis or heart failure.”Read Full Post | Make a Comment ( Comments Off on Registries for Evaluating Patient Outcomes: A User’s Guide 3rd edition – AHRQ – April 2014 )
“In recent years, researchers and funders have aimed to better understand the range of impacts arising from public and charitable funding for medical research — including the resulting economic benefits. Such information provides accountability to taxpayers and charity donors, and increases our understanding of how research effectively translates to health gains. Financial returns may not be a key driver in research decisions, but the demands on public funding are substantial and it is therefore important to evaluate investment in research.
While it is easy to cite examples of breakthroughs that have led to substantial patient benefits or improvements in quality of life, it is more difficult to assess the nature and extent of the economic returns arising from investment in a whole body of medical research, some of which may inevitably be less fruitful.
This study, led by RAND Europe, the Health Economics Research Group (HERG) at Brunel University and King’s College London, aimed to estimate the returns generated by public and charitable investment in UK research. The work focuses on cancer and followed a ground-breaking study published in 2008, which yielded the first quantitative assessment of the economic benefit of biomedical and health science in the UK. The original report focused on the returns generated from investment in cardiovascular disease research, also testing the methodology to a more limited extent on mental health research.”Read Full Post | Make a Comment ( Comments Off on Estimating the Economic Returns on Cancer Research in the UK – RAND – 2014 )
A blueprint for the National Health Service (NHS England) to develop a research and learning programme for the open data era in health and social care
Extract from the executive summary
“The United Kingdom has been a leader in the open data movement – a new movement by governments around the world to open up the vast repositories of data they hold across agencies and departments, and to collect new kinds of data for public use. Open data is publicly available data that can be universally and readily accessed, used, and redistributed free of charge. It is changing the way governments, nonprofits, and the private sector use data to understand public issues and solve problems in areas as diverse as financial regulation, energy, education, and more.
Open data holds particular potential in the health sector. By releasing health data to patients and, when appropriate, on an anonymized basis to researchers and the public, governments and healthcare organizations are betting on the power of greater openness of data to improve the quality of care, lower healthcare costs, and facilitate patient choice. The NHS has made and continues to make significant investments in opening data. Over the past several years, it has launched a series of initiatives that have already had a positive impact on patient education, healthcare choice, healthcare costs, and patient outcomes. Now the NHS is planning a broader, more ambitious programme that has the potential to serve as a worldwide model for the opening of data in healthcare. The purpose of this report is to help design this programme, establishing priorities and ways of measuring impact to guide this and future efforts at data transparency.
This report examines the current literature, drawing on case studies and published research to highlight the following value propositions for using more open data in healthcare:
- Accountability: The use of data to hold healthcare organizations and providers accountable for treatment outcomes.
- Choice: Providing open data to help patients make informed choices from among the healthcare options available to them.
- Efficiency: Improving the efficiency and cost-effectiveness of healthcare delivery.
- Outcomes: Improving treatment outcomes by using open data to make the results of different treatments, healthcare organizations, and providers’ work more transparent.
- Patient satisfaction and customer service: Using open data to educate patients and their families and make healthcare institutions more responsive.
- Economic growth and innovation: Using open data to fuel new healthcare companies and initiatives, and to spur innovation in the broader economy.”
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Senior Investigators: Leaders for patient and public involvement in research – National Institute for Health Research (NIHR) – April 2014Read Full Post | Make a Comment ( Comments Off on Senior Investigators: Leaders for patient and public involvement in research – National Institute for Health Research (NIHR) – April 2014 )
Observational Evidence and Strength of Evidence Domains: Case Examples. Research White Paper – AHRQ – April 2014
O’Neil M, Berkman N, Hartling L, Chang S, Anderson J, Motu’apuaka M, Guise JM, McDonagh M. Observational Evidence and Strength of Evidence Domains: Case Examples. Research White Paper. (Prepared by the AHRQ Scientific Resource Center under Contract No. 290-2012-00004-C). AHRQ Publication No. 14-EHC001-EF. Rockville, MD: Agency for Healthcare Research and Quality. April 2014.
Background. Systematic reviews of health care interventions most often focus on randomized controlled trials. However, certain circumstances warrant consideration of observational evidence, and such studies are increasingly being included as evidence in systematic reviews.
Methods. To illustrate the use of observational evidence, we present case examples of systematic reviews in which observational evidence was considered as well as case examples of individual observational studies and how they demonstrate various strength of evidence domains in accordance with current AHRQ Evidence-based Practice Center methods guidance.
Results. In the presented examples, observational evidence is used when randomized controlled trials are infeasible or raise ethical concerns, lack generalizability, or provide insufficient data. Individual study case examples highlight how observational evidence may fulfill required strength of evidence domains, such as study limitations (reduced risk of selection, detection, performance, and attrition); directness; consistency; precision; and reporting bias (publication, selective outcome reporting, and selective analysis reporting), as well as additional domains of dose-response association, plausible confounding that would decrease the observed effect, and strength of association (magnitude of effect).
Conclusions. The cases highlighted in this paper demonstrate how observational studies may provide moderate-to (rarely) high-strength evidence in systematic reviews.”Read Full Post | Make a Comment ( Comments Off on Observational Evidence and Strength of Evidence Domains: Case Examples. Research White Paper – AHRQ – April 2014 )
Health and Healthcare: Assessing the Real World Data Policy Landscape in Europe – RAND Europe – 24 April 2014
Real-world data (RWD) is an umbrella term for different types of healthcare data that are not collected in conventional randomised controlled trials. RWD in the healthcare sector comes from various sources and includes patient data, data from clinicians, hospital data, data from payers and social data.
Research has contributed to the provision, construction and capture of RWD to improve health outcomes, but to maximise the potential of these new pools of data in the healthcare sector, stakeholders need to identify pathways and processes which will allow them to efficiently access and use RWD to achieve better research outcomes and improved healthcare delivery. Current efforts to improve access to RWD and facilitate its use take place in a context of resource scarcity.
The objectives of the work were the following:
Construct an evidence base on the establishment and evolution of standards governing the collection and use of RWD and identify the different ways in which standards have been applied.
Understand the factors that have enabled or limited access to and use of RWD.
Learn lessons from the use of RWD in different contexts
Identify opportunities for increasing access to RWD and contributing constructively to standard setting in Europe.
RAND Europe, supported by IBM, worked through a multi-method approach to assess different RWD pathways that the health and healthcare sector has explored and the options going forward. Based on a literature review, case studies, a small set of interviews of experts from public and private organisations, and a scenario-based workshop, researchers outlined possible strategies to illustrate how the development of standards could facilitate RWD-based research.
By investigating the current forms and uses of RWD in Europe, this study has highlighted their significant potential for assessing the (short- or long-term) impact of different drugs or medical treatments and for informing and improving healthcare service delivery. Although the potential of RWD use seems quite clear, this research reveals barriers that restrict further development towards its full exploitation:
the absence of common standards for defining the content and quality of RWD
methodological barriers that may limit the potential benefits of RWD analysis
governance issues underlying the absence of standards for collaboration between stakeholders
privacy concerns and binding data protection legislation which can be seen to restrict access and use of data.”
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By Brian KennettRead Full Post | Make a Comment ( Comments Off on Planning and Managing Scientific Research: A guide for the beginning researcher – ANU Press – 2014 )
COAG Standing Council on Health – 11 April 2014
Items discussed included:
Australian Health Management Plan for Pandemic Influenza
20th International AIDS Conference – Melbourne from 20 to 25 July 2014
Privately Practicing Midwives
Organ Donation targets
Multi-jurisdiction clinical trials
Medical Intern Training
Childhood Immunisation and Family Assistance Payments
Hospital Capacity Recording in Contemporary Healthcare
A National Framework for Communicable Disease Control
National Blood Supply
Review of the National Registration and Accreditation Scheme (NRAS) for Health Practitioners
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Q&A: New rules for clinical trials conducted in the EU – 2 April 2014
“Why is the current legislation being replaced?
The 2001 Clinical Trials Directive has been criticised by patients, researchers and industry alike for its disproportionate regulatory requirements. High costs and a lack of harmonisation of the applicable rules necessary for multinational clinical trials are a few examples.
Taken together, these restrictions have contributed to a significant decline in the number of clinical trials in the EU – a reduction of about 25 % in the last few years.
The new Regulation aims at restoring the EU’s competitiveness in clinical research and the development of new and innovative treatments and medicines by cutting red-tape and bringing patient-oriented research back to Europe.
What are the main changes introduced by the Regulation?
The new Regulation will make it easier to conduct multinational clinical trials, i.e. conducted in more than one Member State, in the EU. Measures that cut red tape and simplify the current rules are:
– A straightforward authorisation procedure allowing for a fast and thorough assessment of the application by all Member States concerned and resulting in one single assessment outcome. The authorisation procedure allows the individual EU countries to determine the roles of the bodies in charge of the assessment, on the condition that the assessment is fully independent and based on the necessary expertise.
– Simplified reporting procedures so that researchers no longer have to submit largely identical information on the clinical trial separately to various bodies and Member States.
– The possibility for the Commission to conduct controls in EU countries and third countries to make sure the rules are being properly supervised and enforced.
Finally, the new legislation will take the legal form of a Regulation. This will ensure that the rules for conducting clinical trials are identical throughout the EU. This is vital to ensure that Member States, in authorising and supervising the conduct of a clinical trial, base themselves on identical rules.
What role will Ethics Committees have under the new rules?”
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Supporting the development of a new health R&D strategy: A rapid review of international theory and practice for Norway’s HelseOmsorg21 – RAND – 2014
“The HelseOmsorg21 initiative was set up by the Ministry of Health and Care Services to develop a new research and innovation strategy for health and care services in Norway. The HelseOmsorg21 Strategy Group, through the Research Council of Norway which is providing the secretariat for the strategy development, asked RAND Europe to support the strategic review process. RAND Europe’s role was to conduct a series of rapid evidence reviews around the recommendations arising from the five working groups that comprise the initiative. The reviews were conducted around networks and collaboration, data linkage and exchange, culture, values and leadership, and incentives for innovation, while capacity building was a recurrent theme throughout.
This report presents the rapid evidence reviews, summarising relevant literature and highlighting international examples of particularly relevant or innovative approaches. The issues and ideas identified around each theme are then pulled together in a suggested conceptual representation of the Norwegian health and care research system.”
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Conflict of Interest and Medical Innovation: Ensuring Integrity While Facilitating Innovation in Medical Research: Workshop Summary – National Academies Press – 2014
National Research Council. Conflict of Interest and Medical Innovation: Ensuring Integrity While Facilitating Innovation in Medical Research: Workshop Summary. Washington, DC: The National Academies Press, 2014.
Scientific advances such as the sequencing of the human genome have created great promise for improving human health by providing a greater understanding of disease biology and enabling the development of new drugs, diagnostics, and preventive services. However, the translation of research advances into clinical applications has so far been slower than anticipated. This is due in part to the complexity of the underlying biology as well as the cost and time it takes to develop a product. Pharmaceutical companies are adapting their business models to this new reality for product development by placing increasing emphasis on leveraging alliances, joint development efforts, early-phase research partnerships, and public-private partnerships. These collaborative efforts make it possible to identify new drug targets, enhance the understanding of the underlying basis of disease, discover novel indications for the use of already approved products, and develop biomarkers for disease outcomes or directed drug use. While the potential benefits of collaboration are significant, the fact that the relationships among development partners are often financial means that it is vital to ensure trust by identifying, disclosing, and managing any potential sources of conflict that could create bias in the research being performed together.
Conflict of Interest and Medical Innovation is the summary of a workshop convened by the Institute of Medicine Roundtable on Translating Genomic-Based Research for Health in June 2013 to explore the appropriate balance between identifying and managing conflicts of interest and advancing medical innovation. A wide range of stakeholders, including government officials, pharmaceutical company representatives, academic administrators and researchers, health care providers, medical ethicists, patient advocates, and consumers, were invited to present their perspectives and participate in discussions during the workshop. This report focuses on current conflict of interest policies and their effect on medical innovation in an effort to identify best practices and potential solutions for facilitating innovation while still ensuring scientific integrity and public trust.”Read Full Post | Make a Comment ( Comments Off on Conflict of Interest and Medical Innovation: Ensuring Integrity While Facilitating Innovation in Medical Research: Workshop Summary – National Academies Press – 2014 )
Design and Implementation of N-of-1 Trials: A User’s Guide – AHRQ – 12 February 2014
AHRQ = US Agency for Healthcare Research and Quality
“Design and Implementation of N-of-1 Trials: A User’s Guide provides information on the design and implementation of n-of-1 trials (a.k.a. single-patient trials), a form of prospective research in which different treatments are evaluated in an individual patient over time. The apparent simplicity of this study design has caused it to be enthusiastically touted in some research fields and yet overlooked, underutilized, misunderstood, or erroneously implemented in other fields. With the advent of comparative effectiveness research and patient-centered outcomes research, there is a renewed interest in n-of-1 trials as an important research method for generating unique scientific evidence on patient health outcomes. A core aspect of this interest is that the n-of-1 approach may overcome some important limitations of other methodologies that involve larger samples of subjects. As a result, findings from n-of-1 trials may be especially useful in informing key health care decisions by patients and providers, particularly when combined with other scientific evidence. Likewise, the expansion of electronic health information technology into all areas of clinical care and the increasing recognition that new systems may also be deployed for research and quality improvement have further driven interest in conducting more n-of-1 trials as part of a learning health care system.
AHRQ commissioned this User’s Guide as an informational resource to researchers, health care providers, patients, and other stakeholders to improve general understanding of n-of-1 trials and strengthen the quality of evidence that is generated when an n-of-1 trial is conducted. The overarching aim of this User’s Guide is to guide readers by identifying key decisions and tradeoffs in the design and implementation of n-of-1 trials, particularly when used for patient-centered outcomes research. Patient-centered outcomes research includes investigations of a wide range of research problems, particularly studying the outcomes, effectiveness, benefits, and harms of diagnostic tests, treatments, procedures, or health care services. This User’s Guide identifies key elements to consider in applying the n-of-1 trial methodology to patient-centered outcomes research, describes some of the important complexities of the method, and provides readers with checklists to summarize the main points.”
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Capacity development in health systems and policy research: a survey of the Canadian context – Health Research Policy and Systems 7 February 2014
Health Research Policy and Systems 2014, 12:9 doi:10.1186/1478-4505-12-9
Over the past decade, substantial global investment has been made to support health systems and policy research (HSPR), with considerable resources allocated to training. In Canada, signs point to a larger and more highly skilled HSPR workforce, but little is known about whether growth in HSPR human resource capacity is aligned with investments in other research infrastructure, or what happens to HSPR graduates following training.
We collected data from the Canadian Institutes of Health Research, Canada’s national health research funding agency, and the Canadian Association for Health Services and Policy Research on recent graduates in the HSPR workforce. We also surveyed 45 Canadian HSPR training programs to determine what information they collect on the career experiences of graduates.
No university programs are currently engaged in systematic follow-up. Collaborative training programs funded by the national health research funding agency report performing short-term mandated tracking activities, but whether and how data are used is unclear. No programs collected information about whether graduates were using skills obtained in training, though information collected by the national funding agency suggests a minority (<30%) of doctoral-level trainees moving on to academic careers.
Significant investments have been made to increase HSPR capacity in Canada and around the world but no systematic attempts to evaluate the impact of these investments have been made. As a research community, we have the expertise and responsibility to evaluate our health research human resources and should strive to build a stronger knowledge base to inform future investment in HSPR research capacity.”
Peer J – Affordable, open access, publishing now available to biological and medical science researchers – JISC – 28 January 2014
“From today UK universities will be able to centrally fund their researchers’ publication plans for biological and medical sciences journal PeerJ following an agreement with Jisc. This will allow authors to publish articles in the award winning journal for free, for life.
PeerJ is open access and affordable for both researchers and their universities. It provides academics with two open access publications: PeerJ (a peer-reviewed academic journal) and PeerJ PrePrints (a ‘pre-print server’). Both cover the whole of the biological and medical sciences and the PeerJ journal peer-reviews content only for scientific and methodological soundness.
Carolyn Alderson, acting head of licensing at Jisc Collections said: “The PeerJ tag line is: “Your Peers, Your Science. Academic Publishing Is Evolving” and we are delighted to be part of the enabling process for UK authors and institutions to participate in this new way of working.”
PeerJ’s pioneering new model was recognised in 2013 by the Association of Learned and Professional Society Publishers when it was awarded the “Publishing Innovation” of the year. This model is increasingly relevant as the importance of open access comes to the fore in research funding policy.
Neil Jacobs, head of scholarly communications Jisc said: “UK institutions can now give their authors an advantage as open access grows, as it inevitably will, with the forthcoming Higher Education Funding Council for England’s Research Excellence Framework. As well as being innovative, PeerJ is a first class publication option. It provides authors with a great publishing service, visibility for their research and significant impact.”
With the new arrangement institutions pre-pay for publication plans and individuals take advantage of that pre-payment when they come to publish. As a result institutions now have an easy, frictionless, and cost-effective way to provide their faculty with a world class open access publication option.
Peter Binfield, co-founder and publisher of PeerJ said: “we are excited to be offering our publication plans through Jisc. With this arrangement, UK institutions are now able to easily purchase a publication package that is tailored to their needs and which will provide large numbers of their faculty with the lifetime ability to publish their open access articles.” ”
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Discussion Framework for Clinical Trial Data Sharing: Guiding Principles, Elements, and Activities – National Research Council – 2014
Authors: Committee on Strategies for Responsible Sharing of Clinical Trial Data; Board on Health Sciences Policy; Institute of Medicine
Sharing data generated through the conduct of clinical trials offers the promise of placing evidence about the safety and efficacy of therapies and clinical interventions on a firmer basis and enhancing the benefits of clinical trials. Ultimately, such data sharing – if carried out appropriately – could lead to improved clinical care and greater public trust in clinical research and health care.
Discussion Framework for Clinical Trial Data Sharing: Guiding Principles, Elements, and Activities is part of a study of how data from clinical trials might best be shared. This document is designed as a framework for discussion and public comment. This framework is being released to stimulate reactions and comments from stakeholders and the public. The framework summarizes the committee s initial thoughts on guiding principles that underpin responsible sharing of clinical trial data, defines key elements of clinical trial data and data sharing, and describes a selected set of clinical trial data sharing activities.”
Suggested Citation: National Research Council. Discussion Framework for Clinical Trial Data Sharing: Guiding Principles, Elements, and Activities. Washington, DC: The National Academies Press, 2014.Read Full Post | Make a Comment ( Comments Off on Discussion Framework for Clinical Trial Data Sharing: Guiding Principles, Elements, and Activities – National Research Council – 2014 )
System framework for research studies – eHealth Insider – 15 January 2014
“The National Institute for Health Research has launched a local portfolio management system framework to help manage research studies for researchers and NHS trusts.
From April 2014, 15 hosts around the UK supporting the research networks are contractually obliged to provide an IT system to support clinical research.
Richard Corbridge, chief information officer at the NIHR clinical research network, told EHI that the ‘Local Portfolio Management System, Systems of Choice’, or LPMS SoC for short, aims to get rid of silos and support the research journey from beginning to end by an information system.”
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Evidence gap maps – a tool for promoting evidence-informed policy and prioritizing future research – The World Bank – 1 December 2013
Snilstveit, Birte; Vojtkova, Martina; Bhavsar, Ami; Gaarder, Marie. 2013. Evidence gap maps – a tool for promoting evidence-informed policy and prioritizing future research. Policy Research working paper ; no. WPS 6725. Washington DC ; World Bank Group.
“Evidence-gap maps present a new addition to the tools available to support evidence-informed policy making. Evidence-gap maps are thematic evidence collections covering a range of issues such as maternal health, HIV/AIDS, and agriculture. They present a visual overview of existing systematic reviews or impact evaluations in a sector or subsector, schematically representing the types of interventions evaluated and outcomes reported. Gap maps enable policy makers and practitioners to explore the findings and quality of the existing evidence and facilitate informed judgment and evidence-based decision making in international development policy and practice. The gap map also identifies key “gaps” where little or no evidence from impact evaluations and systematic reviews is available and where future research should be focused. Thus, gap maps can be a useful tool for developing a strategic approach to building the evidence base in a particular sector. This paper provides an introduction to evidence-gap maps, outlines the gap-map methodology, and presents some examples.”Read Full Post | Make a Comment ( Comments Off on Evidence gap maps – a tool for promoting evidence-informed policy and prioritizing future research – The World Bank – 1 December 2013 )
NHS England Research and Development Strategy Consultation – January 2014
“The vision of the Research and Development Strategy is to;
Support development of high quality commissioning underpinned by research and innovation,
Support NHS England in becoming an excellent organisation by encouraging a culture that values and promotes research and innovation
Create an evidence based decision making culture
Ensure research undertaken or commissioned by NHS England is patient centred
Offer every patient the opportunity to take part in research (where practical)
Contribute to economic growth
The strategy’s aim is to:
promote the use of research and the use of evidence obtained from high quality research,
support the NHS outcomes framework objectives by building the evidence base,
identify best practice to commission research that delivers benefits for patients and their families,
support the development of evidenced based innovative practice.
There are six objectives to be delivered by 2018; these outline how NHS England will deliver to the vision, the aim and its priorities. Each objective has an associated outcome and impact highlighted.”
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Organ donor registrations: trialling different approaches – UK Cabinet Office, Behavioural Insights Team – 24 December 2013
“A randomised controlled trial measured how successful different approaches were in encouraging more people to join the Organ Donor Register.
The Behavioural Insights Team worked in partnership with NHS Blood and Transplant, Department of Health, Government Digital Services and DVLA to run one of the largest randomised controlled trials (RCTs) ever conducted in this county.
We found that making small changes to a government website led to significantly increased registrations for the NHS Organ Donor Register. These results highlight the value of the RCT approach, and of trialling several variants, where possible, before implementing them.”
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Starting the Conversation: University-wide Research Data Management Policy – An OCLC Research Report – December 2013
“Starting the Conversation: University-wide Research Data Management Policy is a call for action that summarizes the benefits of systemic data management planning and identifies the stakeholders and their concerns. It also suggests that the library director proactively initiate a conversation among these stakeholders to get buy-in for a high-level, responsible data planning and management policy that is proactive, rather than reactive.”
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New report released tracking usage pattern of academic journal articles – American Association of American Publishers – 18 December 2013
Journal Usage Half-Life
By Phil Davis, Ph.D.
Subjective Well-Being: Measuring Happiness, Suffering, and Other Dimensions of Experience – National Academies Press – 2013
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Arthur A. Stone and Christopher Mackie, Editors; Panel on Measuring Subjective Well-Being in a Policy-Relevant Framework; Committee on National Statistics; Division on Behavioral and Social Sciences and Education; National Research Council
Subjective well-being refers to how people experience and evaluate their lives and specific domains and activities in their lives. This information has already proven valuable to researchers, who have produced insights about the emotional states and experiences of people belonging to different groups, engaged in different activities, at different points in the life course, and involved in different family and community structures. Research has also revealed relationships between people’s self-reported, subjectively assessed states and their behavior and decisions. Research on subjective well-being has been ongoing for decades, providing new information about the human condition. During the past decade, interest in the topic among policy makers, national statistical offices, academic researchers, the media, and the public has increased markedly because of its potential for shedding light on the economic, social, and health conditions of populations and for informing policy decisions across these domains.”
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Engagement in research: an innovative three-stage review of the benefits for health-care performance – October 2013
Hanney S, Boaz A, Jones T, Soper B. Engagement in research: an innovative three-stage review of the beneﬁts for health-care performance. Health Serv Deliv Res 2013;1(8)
Background: There is a widely held assumption that research engagement improves health-care performance at various levels, but little direct empirical evidence.
Objectives: To conduct a theoretically and empirically grounded synthesis to map and explore plausible mechanisms through which research engagement might improve health services performance. A review of the effects on patients of their health-care practitioner’s or institution’s participation in clinical trials was published after submission of the proposal for this review. It identiﬁed only 13 relevant papers and, overall, suggested that the evidence that research engagement improves health-care performance was less strong than some thought. We aimed to meet the need for a wider review.”
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World Medical Association Declaration of Helsinki: Ethical Principles for Medical Research Involving Human Subjects – JAMA – 19 October 2013Read Full Post | Make a Comment ( Comments Off on World Medical Association Declaration of Helsinki: Ethical Principles for Medical Research Involving Human Subjects – JAMA – 19 October 2013 )
Towards a Framework for Communicating Confidence in Methodological Recommendations for Systematic Reviews and Meta-Analyses – AHRQ – September 2013
Trikalinos TA, Dahabreh IJ, Wallace BC, Schmid CH, Lau J. Towards a Framework for Communicating Confidence in Methodological Recommendations for Systematic Reviews and Meta-Analyses. Methods Research Report. (Prepared by Tufts Evidence-based Practice Center under Contract No. 290-2007-10055-I). AHRQ Publication No. 13-EHC119-EF. Rockville, MD: Agency for Healthcare Research and Quality; September 2013
We propose a framework for organizing and describing the rationale behind methodological recommendations, and for communicating one’s confidence in them. We start by defining the background context in which the recommendations are made. We distinguish recommendations that are testable (in that their likelihood to hold can be informed by theoretical arguments or empirical data) from nontestable ones, which represent beliefs or assumptions that are not verifiable. Nontestable statements can be justified, but their validity cannot be demonstrated. Testable statements can be assessed in terms of the adequacy of their evidentiary basis.
Both testable and nontestable statements can be evaluated regarding their feasibility of implementation, the expected impact of following them versus not, and their congruence with the desired characteristics of the background context. Considering these four dimensions, one can indicate one’s confidence (along a continuum) about how closely a methods recommendation should be followed: some recommendations may be perceived and communicated as mandatory items (minimum standards), while others as highly desirable but not mandatory items. Finally, giving specific methods guidance for addressing difficult or ill-defined problems can be premature pending more research or clearer problem specification. In such cases, describing the problem and laying out attributes of a satisfactory resolution can serve until actionable guidance can be offered.
We view the proposed framework strictly as a communication tool to describe rationale for the recommendations to the intended audience and not as a device to deduce the “correctness” of a recommendation. Nonetheless, application of the framework can facilitate the latter, because methodologists can most effectively and honestly critique recommendations whose rationale is transparent. We anticipate that this initial instantiation of the framework for making methods recommendations will evolve.”Read Full Post | Make a Comment ( Comments Off on Towards a Framework for Communicating Confidence in Methodological Recommendations for Systematic Reviews and Meta-Analyses – AHRQ – September 2013 )
Knowledge strategy: Harnessing the power of information to improve the public’s health – Public Health England – October 2013
Extract from the Executive Summary
“This document describes the strategic approach that the public health system will take around information and knowledge in order to improve and protect public health and reduce inequalities. It is a response from the whole public health system, under the leadership of PHE, to the Department of Health information strategy, The Power of Information: Putting all of us in control of the health and care information we need.
This strategy describes how PHE will meet the knowledge and information requirements of public health practitioners across the public health system. For this
reason, the primary audience for the strategy is knowledge and intelligence professionals across all directorates of PHE. This strategy exists because of a desire to improve the quality of knowledge in the whole public health system. Therefore the other key recipients of this document are the public health practitioners in local authorities who use public health knowledge on a day-to-day basis. These users, as well as all other stakeholders, are welcomed to shape the implementation of this strategy.
Taking the lead from The Power of Information, this strategy does not propose specific system implementations or set down detailed mechanisms for delivery. It provides a framework to support changes across the public health system, putting the user of knowledge at the centre and promoting flexibility and innovation within an environment that promotes efficiency.
The strategy is focused around the eight priorities for public health knowledge identified by PHE. It addresses the entire information lifecycle from understanding the requirements of those who are using public health knowledge through to what technologies PHE will use to disseminate knowledge.”
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Data Warehouse Governance Programs in Healthcare Settings: A Literature Review and a Call to Action – Academy Health – 2013
lliott, Thomas E.; Holmes, John H.; Davidson, Arthur J.; La Chance, Pierre-Andre; Nelson, Andrew F.; and Steiner, John F. (2013) “Data Warehouse Governance Programs in Healthcare Settings: A Literature Review and a Call to Action,” eGEMs (Generating Evidence & Methods to improve patient outcomes): Vol. 1: Iss. 1, Article 15.
Purpose Given the extensive data stored in healthcare data warehouses, data warehouse governance policies are needed to ensure data integrity and privacy. This review examines the current state of the data warehouse governance literature as it applies to healthcare data warehouses, identifies knowledge gaps, provides recommendations, and suggests approaches for further research.
Methods A comprehensive literature search using five data bases, journal article title-search, and citation searches was conducted between 1997 and 2012. Data warehouse governance documents from two healthcare systems in theUSA were also reviewed. A modified version of nine components from the Data Governance Institute Framework for data warehouse governance guided the qualitative analysis.
Results Fifteen articles were retrieved. Only three were related to healthcare settings, each of which addressed only one of the nine framework components. Of the remaining 12 articles, 10 addressed between one and seven framework components and the remainder addressed none. Each of the two data warehouse governance plans obtained from healthcare systems in theUSA addressed a subset of the framework components, and between them they covered all nine.
Conclusions While published data warehouse governance policies are rare, the 15 articles and two healthcare organizational documents reviewed in this study may provide guidance to creating such policies. Additional research is needed in this area to ensure that data warehouse governance polices are feasible and effective. The gap between the development of data warehouses in healthcare settings and formal governance policies is substantial, as evidenced by the sparse literature in this domain.”Read Full Post | Make a Comment ( Comments Off on Data Warehouse Governance Programs in Healthcare Settings: A Literature Review and a Call to Action – Academy Health – 2013 )
Implementation Research in Health: A Practical Guide – WHO – Alliance for Health Policy and Systems Research – 9 October 2013
ISBN 978 92 4 150621 2
Extract from the executive summary
“A key challenge faced by the global health community is how to take proven interventions and implement them in the real world. Affordable, life-saving interventions exist to confront many of the health challenges we face, but there is little understanding of how best to deliver those interventions across the full range of existing health systems and in the wide diversity of possible settings. Our failure to effectively implement interventions carries a price.”Read Full Post | Make a Comment ( Comments Off on Implementation Research in Health: A Practical Guide – WHO – Alliance for Health Policy and Systems Research – 9 October 2013 )
British Pyschological Society’s Dancing Statistics – on YouTube – 27 September 2013
Dancing statistics: explaining the statistical concept of correlation through dance
Dancing statistics: explaining the statistical concept of frequency distributions through dance
Dancing statistics: explaining the statistical concept of sampling & standard error through dance
Dancing statistics: explaining the statistical concept of variance through danceRead Full Post | Make a Comment ( Comments Off on British Pyschological Society’s Dancing Statistics – on YouTube – 27 September 2013 )
“The REDCap Consortium is composed of 812 active institutional partners from CTSA, GCRC, RCMI and other institutions in 64 countries. The consortium supports a secure web application (REDCap) designed exclusively to support data capture for research studies.
The REDCap application allows users to build and manage online surveys and databases quickly and securely, and is currently in production use or development build-status for more than 85,000 projects with over 111,000 users spanning numerous research focus areas across the consortium. To find out if your institution is already running REDCap, you will find contact information on the Consortium Partners page.”
The Telethon Institute for Child Health Research (Australia) is listed as a consortium partner along with several others in other states.
From the Software tab on the site
“REDCap (Research Electronic Data Capture) is a secure web application for building and managing online surveys and databases. Using REDCap’s stream-lined process for rapidly developing projects, you may create and design projects using 1) the online method from your web browser using the Online Designer; and/or 2) the offline method by constructing a ‘data dictionary’ template file in Microsoft Excel, which can be later uploaded into REDCap. Both surveys and databases (or a mixture of the two) can be built using these methods. REDCap provides audit trails for tracking data manipulation and user activity, as well as automated export procedures for seamless data downloads to Excel, PDF, and common statistical packages (SPSS, SAS, Stata, R). Also included are a built-in project calendar, a scheduling module, ad hoc reporting tools, and advanced features, such as branching logic, file uploading, and calculated fields. REDCap has a quick and easy software installation process, so that you can get REDCap running and fully functional in a matter of minutes.”
From the Library tab
“The REDCap Shared Library is a repository for REDCap data collection instruments and forms that can be downloaded and used by researchers at REDCap partner institutions. Curated instruments have been approved for inclusion by the REDCap Library Oversight Committee (REDLOC) after review for research relevance, accuracy in coding and function, and copyright issues.”
162 research instruments are currently listedRead Full Post | Make a Comment ( Comments Off on Research Electronic Data Capture (REDCap) )
“This guidance provides recommendations to sponsors, Contract Research Organizations (CROs), clinical investigators, and others involved in the capture, review, and retention of electronic source data in FDA-regulated clinical investigations.
In an effort to streamline and modernize clinical investigations this guidance promotes capturing source data in electronic form, and it is intended to assist in ensuring the reliability, quality, integrity, and traceability of data from electronic source to electronic regulatory submission.”
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Navigating the Translation and Dissemination of PHSSR Findings: A Decision Guide for Researchers – Academy Health – 2013
Extract from the foreword
“The U.S. health system is undergoing a critically transformative process. The public health community acknowledges this unique opportunity—the chance to be leaders, or ‘chief health strategists,’ in guiding the development of a new health system that supports prevention and community-based approaches to health. Yet there certainly is no clarity with regard to the role of public health in this rapidly evolving health care environment, and specifically the role of governmental public health agencies. The emerging field of public health services and systems research (PHSSR) has the potential to inform this health system transformation—it studies the impact of different approaches to organizing, delivering, and paying for public health services and examines strategies for improving the quality and
performance of the U.S. public health system.”
My NCBI Curriculum Vitae Web Application: SciENcv – NLM – 17 September 2013
Hutcherson L. My NCBI Curriculum Vitae Web Application: SciENcv. NLM Tech Bull. 2013 Sep-Oct;(394):e3.
2013 September 17 [posted]
“SciENcv is a new feature in My NCBI that helps users create an online professional profile that can be made public to share with others. In SciENcv users can document their education, employment, research activities, publications, honors, research grants, and other professional contributions. In addition, the SciENcv profile may include an ORCID® iD, when registered with ORCID.
[electronic Research Administration] eRA Commons account holders who have linked their eRA account to My NCBI will find their SciENcv profile automatically populated with the information stored in their eRA Commons profile. The information transferred from eRA Commons to SciENcv profiles can be changed, hidden, augmented, or deleted.
The SciENcv Web application is the end product of a request made by the Federal Demonstration Partnership (FDP) to reduce the administrative burden associated with federal grant submissions. It is being developed under the aegis of an interagency workgroup composed of members from the Department of Defense, the Department of Energy, the Environmental Protection Agency, the National Institutes of Health, the National Science Foundation, The Smithsonian, and the United States Department of Agriculture. For additional details on the mission and guiding principles of the Science Experts Network Curriculum Vitae project, please see the project page.”
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A New Way to Follow the Research Trail – D-Lib Magazine – September October 2013
Contributed by: Balviar Notay, Programme Manager, JISC, United Kingdom
“The need to find good quality research has probably never been greater. Researchers need to find collaborators, research managers want to develop commercial partnerships, and funders have to demonstrate the value of their investments.
Discovering and tracking research outputs across different scholarly systems, however, is more difficult than it should be. The key to finding a solution to this problem is the systematic collection and use of good, standardised metadata – information about the books, papers and articles that researchers produce.
Over the years, various metadata schemas and models for scholarly outputs have emerged, but they have led to a very fragmented metadata landscape. Repositories have taken different approaches to metadata implementation – some have gone down the tailor-made route, customising metadata fields to suit their own particular requirements or preferences, while others have simply adopted the default option with their software or applied known metadata schemas. This difference of approach has made interoperability between scholarly systems within institutions and those held by funders hard to achieve.
So, in April 2013, Jisc and UKOLN launched the first release of a new Metadata Application Profile and associated guidelines. Known as RIOXX, it will enable the efficient tracking of research outputs across scholarly systems. Crucially, RIOXX mandates the collection of metadata describing funder names and unique project identifiers. Reliably linking funding information with research outputs will benefit anyone needing to track research across scholarly systems.”
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Moving to a User-Driven Research Paradigm – 22 August 2013
Randhawa, Gurvaneet (2013) “Moving To A User-Driven Research Paradigm,” eGEMs (Generating Evidence & Methods to improve patient outcomes): Vol. 1: Iss. 2, Article 2.
The traditional “bench-to-bedside” paradigm for clinical research has been successfully used for many decades. This
model of knowledge generation has led to discoveries that have enhanced the quality and length of life. The combination
of changes in research practice and in health care delivery, growing complexity in decision-making, increasing use of
electronic health records (EHR), and growing resource constraints necessitate a shift to a user-driven research paradigm
to generate new knowledge. This conceptual framework was created to clarify the perspective of the decision makers as
well as the range of factors and the variability in thresholds used to make decisions. This framework may help researchers
in creating actionable information to meet the needs of decision makers, which is needed for the transition to a user-driven
research paradigm. Further, it is important to create an appropriate set of incentives to facilitate this transition to a userdriven research paradigm. “
New edition of the Australian code for the care and use of animals for scientific purposes – NHMRC – 23 July 2013
“All researchers and teachers in Australia considering the use of animals for scientific purposes are required to adhere to the new 8th edition of the Australian code for the care and use of animals for scientific purposes. If animals need to be used, the new edition outlines how they must be cared for and treated.
The new edition of the Code provides clearer, stronger and up-to-date information on the ethical, humane and responsible care and use of animals for scientific purposes. It outlines the governing principles and ethical framework to guide the decisions and actions of all those involved and in all situations where animals are used.”
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London : The Stationery Office Limited
Extract from the summary
“Regenerative medicine involves replacing or regenerating cells, tissues or organs in the human body, in order to restore or establish normal function. It includes cell therapy, gene therapy, tissue engineering and other methods, and it has enormous potential to treat and cure diseases. It could also improve the quality of peoples’ lives and generate significant economic benefits for the UK.
In this inquiry we have sought to identify what the UK is doing well in regenerative medicine and any barriers to its future development. We make recommendations to the Government that, if acted upon, would facilitate the translation of scientific knowledge into clinical practice and encourage its commercial exploitation.”Read Full Post | Make a Comment ( Comments Off on Regenerative medicine Report – House of Lords Science and Technology Committee – 1 July 2013 )
Strengthening Health Information Infrastructure for Health Care Quality Governance: Good Practices, New Opportunities and Data Privacy Protection Challenges – OECD – 30 May 2013
“Privacy-respectful uses of data for health, health care quality and health system performance monitoring and research must become widespread, regular activities. This report is about the progress OECD countries have made in the development and linkage of health and health care data and in the development and use of data from electronic health record systems for statistics and research.”Read Full Post | Make a Comment ( Comments Off on Strengthening Health Information Infrastructure for Health Care Quality Governance: Good Practices, New Opportunities and Data Privacy Protection Challenges – OECD – 30 May 2013 )
“But they are less sure of their own role in improving patient care through research
Results of a survey of healthcare professionals released today (15 May), commissioned by some of the UK’s leading medical research charities*, highlight the practical challenges to be overcome if the NHS is to become an innovative research organisation driving improvements in patient care.
The survey carried out by ComRes with 392 GPs, hospital doctors and nurses, showed universal agreement among them that the NHS should support research into treatments for patients. However 91% of those surveyed identified barriers they had experienced to taking part in research – including lack of time (62%), funding (30%), practical support (27%) and difficulties navigating regulation (24%) were among the reasons given.
And although a majority of GPs believed it is very important for the NHS to support research into treatments for their patients, only 22% felt it was very important for them to be personally involved. Lack of time was a key issue for GPs, with nearly three quarters (73%) naming it as the biggest barrier to preventing them from getting involved in research. As the majority of NHS contact with patients is made in general practice, GPs can play a vital role in engaging patients in research, conducting innovative research themselves and facilitating research though commissioning.
Among all health professionals, around a fifth (18%) felt they did not have the necessary skills to get involved in research and some reported a lack of confidence in talking about research with their patients, with a third of nurses (31%) and GPs (34%) not very or not at all confident. And whilst many resources exist for clinicians about medical research and how to be involved, a fifth of healthcare professionals (20%) did not use any of the tailored information resources available.
Patients can be part of the solution here. We know from other studies** that the public are keen to be involved in research, yet the majority (53%) of health professionals told us that they are asked by their patients about research opportunities less than once a year, if at all.”
… continuesRead Full Post | Make a Comment ( Comments Off on Our vision for research in the NHS – Association of Medical Research Charities – 15 May 2013 )
Riding the Crest of the Altmetrics Wave: How Librarians Can Help Prepare Faculty for the Next Generation of Research Impact Metrics – arXiv – 15 May 2013
Scott Lapinski, Countway Library, Harvard Medical School,
Heather Piwowar, Co-Founder, ImpactStory, Postdoc at National Evolutionary Synthesis through Duke University
Jason Priem, Co-Founder, ImpactStory, PhD Student, School of Information and Library Science, UNC-Chapel Hill
“As scholars migrate into online spaces like Mendeley, blogs, Twitter, and more, they leave new traces of once-invisible interactions like reading, saving, discussing, and recommending. Observing these traces can inform new metrics of scholarly influence and impact — so-called “altmetrics.” Stakeholders in academia are beginning to discuss how and where altmetrics can be useful towards evaluating a researcher’s academic contribution. As this interest grows, libraries are in a unique position to help support an informed dialog on campus. We suggest that librarians can provide this support in three main ways: informing emerging conversations with the latest research, supporting experimentation with emerging altmetrics tools, and engaging in early altmetrics education and outreach. We include examples and lists of resources to help librarians fill these roles. “Read Full Post | Make a Comment ( Comments Off on Riding the Crest of the Altmetrics Wave: How Librarians Can Help Prepare Faculty for the Next Generation of Research Impact Metrics – arXiv – 15 May 2013 )
“The San Francisco Declaration on Research Assessment (DORA), initiated by the American Society for Cell Biology (ASCB) together with a group of editors and publishers of scholarly journals, recognizes the need to improve the ways in which the outputs of scientific research are evaluated. The group met in December 2012 during the ASCB Annual Meeting in San Francisco and subsequently circulated a draft declaration among various stakeholders. DORA as it now stands has benefited from input by many of the original signers listed below. It is a worldwide initiative covering all scholarly disciplines. We encourage individuals and organizations who are concerned about the appropriate assessment of scientific research to sign DORA.”Read Full Post | Make a Comment ( Comments Off on The San Francisco Declaration on Research Assessment (DORA) )
Zenodo – Sharing Research Data across Europe – Making Science More Visible
by Wilda Newman
“Newly launched, Zenodo http://www.zenodo.org offers a one-stop-store for research output. Created by OpenAIRE and CERN, and supported by the European Commission, this new-generation online repository offers its service from the OpenAIRE pan-European initiative, which expands the linking of research output to datasets and funding information, in European and national contexts.
*Enabling everyone to Share and Cite Data*
Zenodo welcomes multi-disciplinary research data from any individual, scientific community or research institution. Upload allowance is generous (1GB) and can be used by institutions without their own data repository. Based on the same concept as OpenAIRE, which gathers Open Access publications across a variety of funding schemes, Zenodo provides a rich interface to link objects together with funding information.
*Supporting the long-tail of research output*
Any data uploaded, or collections created are harvestable via OAI-PMH by third parties: expose your collection to PubMedCentral or your local institution. For research institutions who don’t want the overhead of establishing their own data repository to support their researchers’ scientific output, this is a convenient solution. The repository accepts any data without an obvious service at hand, in a variety of formats. Zenodo fully encourages deposition under an open licence, and while it will also accept other licence types, the Zenodo community will take a lead in signalling the benefits of open licenses such as visibility and credit.”
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Guidance: Attributing the costs of health and social care research [UK] – 9 April 2013
“This guidance provides a framework for the NHS and its partners to identify, recover and attribute the costs of health and social care R&D (ACoRD), in a transparent, and consistent manner. It clarifies the distinction between the 3 costs of research:
NHS support costs
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Perspectives on Research with H5N1 Avian Influenza: Scientific Inquiry, Communication, Controversy: Summary of a Workshop – Institute of Medicine – 2013
“When, in late 2011, it became public knowledge that two research groups had submitted for publication manuscripts that reported on their work on mammalian transmissibility of a lethal H5N1 avian influenza strain, the information caused an international debate about the appropriateness and communication of the researchers’ work, the risks associated with the work, partial or complete censorship of scientific publications, and dual-use research of concern in general.
Recognizing that the H5N1 research is only the most recent scientific activity subject to widespread attention due to safety and security concerns, on May 1, 2012, the National Research Council’s Committee on Science, Technology and Law, in conjunction with the Board on Life Sciences and the Institute of Medicine’s Forum on Microbial Threats, convened a one-day public workshop for the purposes of 1) discussing the H5N1 controversy; 2) considering responses by the National Institute of Allergy and Infectious Diseases (NIAID), which had funded this research, the World Health Organization, the U.S. National Science Advisory Board for Biosecurity (NSABB), scientific publishers, and members of the international research community; and 3) providing a forum wherein the concerns and interests of the broader community of stakeholders, including policy makers, biosafety and biosecurity experts, non-governmental organizations, international organizations, and the general public might be articulated.
Perspectives on Research with H5N1 Avian Influenza: Scientific Enquiry, Communication, Controversy summarizes the proceedings of the workshop.”
Strategic Review of Health and Medical Research in Australia – Better Health Through Research
“Minister for Health Tanya Plibersek today released the report of the McKeon Review – Strategic Review of Health and Medical Research – Better Health through Research.
In 2011, the Gillard government commissioned Mr Simon McKeon and a distinguished panel to conduct a major independent review of health and medical research in Australia.
“I would like to thank Simon McKeon and the review panel – Ms Elizabeth Alexander AM; Professor Henry Brodaty AO; Mr Bill Ferris AC; Professor Ian Frazer AC; and Professor Melissa Little – for all of their hard work in producing this wide-ranging review and plan for the future.
“The review focused on maximising Australia’s capacity to produce world class health and medical research across the research spectrum, from discovery through to translation.
“It found that Australia has one of the world’s best performing health systems. But we need new strategies and processes to drive improvements in healthcare delivery through a renewed and fully integrated health and medical research sector.
“The overarching vision of the report is embedding health and medical research into all aspects of the health system. This is because health services that conduct research deliver better health outcomes for patients.
“The review recommends a 10 year strategy with 21 recommendations across a number of themes to achieve the vision.
“Some of the recommendations directly impact on the running of the public hospital system which is managed by the states and territories and I intend to take the report to the Standing Council on Health and to seek feedback from my state and territory counterparts.
“There are many people and organisations from researchers, health professionals and consumers who have already provided input into the review process and will be interested in its conclusions. The government will engage with relevant parties in formulating its response,” said Ms Plibersek.
The report can be accessed at the following Strategic Review of Health and Medical Research web page“Read Full Post | Make a Comment ( Comments Off on McKeon Medical Research Review Released – 5 April 2013 )
“Pharmaceutical companies, academic researchers, and government agencies compile large quantities of clinical research data, which, if shared more widely both within and across sectors, could improve public health, enhance patient safety, and spur drug development. Data sharing also can increase public trust in clinical trials and the conclusions derived from them by lending transparency to the clinical research process.
Despite several barriers to data sharing – such as concerns about data mining, erroneous secondary analyses of data, and unwarranted litigation – there is increasing acknowledgement among researchers of the importance and potential benefits to sharing clinical research data at various stages of the research, discovery, and development pipeline.
On October 4-5, 2012, four groups within the IOM – the Forum on Drug Discovery, Development, and Translation; the Forum on Neuroscience and Nervous System Disorders; the National Cancer Policy Forum; and the Roundtable on Translating Genomic-Based Research for Health – hosted a workshop to explore the benefits of sharing clinical research data, the barriers to such sharing, and strategies to address these barriers to facilitate the development of safe, effective therapeutics and diagnostics. This document summarizes the workshop.
As follow up to this workshop the IOM is in the process of developing a consensus study that will focus on the open availability and use of clinical trial data.”Read Full Post | Make a Comment ( Comments Off on Sharing Clinical Research Data – Institute of Medicine Workshop Summary – 29 March 2013 )
Assessing Research Impact: An international review of the Excellence in Innovation for Australia Trial – RAND – 2013
by Molly Morgan Jones, Sophie Castle-Clarke, Catriona Manville, Salil Gunashekar, Jonathan Grant
“The Australian Technology Network of Universities asked RAND Europe to review the Excellence in Innovation for Australia (EIA) Impact Assessment Trial (‘the EIA Trial’), in order to assess how well universities identified and demonstrated impact, as well as how the process could be further improved. This report offers headlines regarding the success of the process, as well as actionable recommendations for improving the EIA Trial in its current form, and for scaling up the process in the future. It also includes a detailed review of the Trial guidance, an analysis of case studies submitted to the Trial, an analysis of how each case study was scored by the assessment panels and an analysis of surveys completed by institutions and case study authors. The report is intended for those responsible for the EIA Trial, in order to enable them to improve the exercise. However, it may also be of interest to others working in the evaluation of research impact.”Read Full Post | Make a Comment ( Comments Off on Assessing Research Impact: An international review of the Excellence in Innovation for Australia Trial – RAND – 2013 )
Through the Quality Kaleidoscope: Reflections on the Science and Practice of Improving Health Care Quality – Agency for Healthcare Research and Quality [US] – February 2013
Closing the Quality Gap: Revisiting the State of the Science
Methods Research Reports
Investigators: Kathryn M McDonald, MM, Christine Chang, MD, MPH, and Ellen Schultz, MS.
Rockville (MD): Agency for Healthcare Research and Quality (US); February 2013.
Report No.: 13-EHC041-EF
The United States devotes significant resources to health care, yet quality is often lacking. In 2004, the Agency for Healthcare Research and Quality launched a collection of evidence reports on quality improvement (QI) opportunities and strategies related to chronic conditions, practice areas, and cross-cutting priorities. This new Closing the Quality Gap series expands the topics examined and marshals the knowledge of eight Evidence-based Practice Centers (EPCs) to synthesize lessons learned and to advance the state of QI science.”
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Framework for Determining Research Gaps During Systematic Review: Evaluation – Agency for Healthcare Research and Quality [US] – February 2013
Methods Research Reports
Investigators: Karen A Robinson, PhD, Oluwaseun Akinyede, MPH, Tania Dutta, MS, MPP, Veronica Ivey Sawin, BA, Tianjing Li, MD, PhD, Merianne Rose Spencer, BS, Charles M Turkelson, PhD, and Christine Weston, PhD.
Johns Hopkins University Evidence-based Practice Center
Rockville (MD): Agency for Healthcare Research and Quality (US); February 2013.
Report No.: 13-EHC019-EF
Research gaps prevent systematic reviewers from making conclusions and, ultimately, limit our ability to make informed health care decisions. While there are well-defined methods for conducting a systematic review, there has been no explicit process for the identification of research gaps from systematic reviews. In a prior project we developed a framework to facilitate the systematic identification and characterization of research gaps from systematic reviews. This framework uses elements of PICOS (Population, Intervention, Comparison, Outcomes, Setting) to describe the gaps and categorizes the reasons for the gaps as (A) insufficient or imprecise information, (B) biased information, (C) inconsistent or unknown consistency results, and/or (D) not the right information.”
continuesRead Full Post | Make a Comment ( Comments Off on Framework for Determining Research Gaps During Systematic Review: Evaluation – Agency for Healthcare Research and Quality [US] – February 2013 )
PatientsLikeMe tool matches patients around the world with clinical trials – Healthcare IT News – 13 March 2013
“Patient network and real-time research platform PatientsLikeMe announced its clinical trials tool at Europe’s Health Innovation Expo 2013, hosted by the National Health Service (NHS).
The tool pulls from open data to match patients around the world with clinical trials based on their condition and location. The U.S. prototype was launched in 2012.”
“PatientsLikeMe was co-founded in 2004 by three MIT engineers: brothers Benjamin and James Heywood and longtime friend Jeff Cole. Five years earlier, their brother and friend Stephen Heywood was diagnosed with ALS (Lou Gehrig’s disease) at the age of 29. The Heywood family soon began searching the world over for ideas that would extend and improve Stephen’s life. Inspired by Stephen’s experiences, the co-founders and team conceptualized and built a health data-sharing platform that we believe can transform the way patients manage their own conditions, change the way industry conducts research and improve patient care.
Today, PatientsLikeMe is a for-profit company, but not one with a “just for profit” mission. We follow four core values: putting patients first, promoting transparency (“no surprises”), fostering openness and creating “wow.” We’re guided by these values as we continually enhance our platform, where patients can share and learn from real-world, outcome-based health data. We’ve also centered our business around these values by aligning patient and industry interests through data-sharing partnerships. We work with trusted nonprofit, research and industry Partners who use this health data to improve products, services and care for patients.”Read Full Post | Make a Comment ( Comments Off on PatientsLikeMe tool matches patients around the world with clinical trials – Healthcare IT News – 13 March 2013 )
by Catriona Manville, Petal Hackett, Salil Gunashekar, Molly Morgan Jones
“This report is intended to help improve understanding of health research governance in the UK by exploring the regulatory practices and cultures in other countries and sectors. It is a comparative study of the practice of those who are subject to regulatory requirements in the health research, medical drugs, environmental and financial sectors. The report is informed by a review of a small subset of literature which is particularly relevant to this question, and focuses on different elements of regulation and regulatory governance for each of the different sectors.”
Read Full Post | Make a Comment ( Comments Off on Regulatory cultures and research governance – RAND – 2013 )
Developing a Protocol for Observational Comparative Effectiveness Research: A User’s Guide – Agency for Healthcare Research and Quality – January 2013
Edited by Priscilla Velentgas, PhD, Nancy A Dreyer, MPH, PhD, Parivash Nourjah, PhD, Scott R Smith, PhD, and Marion M Torchia, PhD.
Rockville (MD): Agency for Healthcare Research and Quality (US)
Publication No.: 12(13)-EHC099
“The Observational CER User’s Guide serves as a resource for investigators and stakeholders when designing observational comparative effectiveness research (CER) studies, particularly those with findings that are intended to translate into decisions or actions. The User’s Guide provides principles for designing research that will inform health care decisions of patients and other stakeholders. Furthermore, it serves as a reference for increasing the transparency of the methods used in a study and standardizing the review of protocols through checklists provided in every chapter.”Read Full Post | Make a Comment ( Comments Off on Developing a Protocol for Observational Comparative Effectiveness Research: A User’s Guide – Agency for Healthcare Research and Quality – January 2013 )
We do clinical research – NHS National Institute for Health Research, Clinical Research Network – February 2013
A guide to support materials that help Trusts promote clinical research in the NHS
“The aim of this booklet is to help you increase research awareness within your Trust and promote the local research opportunities available to your patients.
It features a range of materials that you can order at low cost, which will help your staff and patients gain a better understanding of what research is, its benefits and how they can get involved.
You will also find examples of good practice that will help you develop your Trust’s research culture. There are many other examples of good practice in the NHS and those presented in this booklet are intended as a useful insight to inspire your own ideas.”Read Full Post | Make a Comment ( Comments Off on We do clinical research – NHS National Institute for Health Research, Clinical Research Network – February 2013 )
by Catriona Manville, Petal Hackett, Salil Gunashekar, Molly Morgan Jones
“This report is intended to help improve understanding of health research governance in the UK by exploring the regulatory practices and cultures in other countries and sectors. It is a comparative study of the practice of those who are subject to regulatory requirements in the health research, medical drugs, environmental and financial sectors. The report is informed by a review of a small subset of literature which is particularly relevant to this question, and focuses on different elements of regulation and regulatory governance for each of the different sectors.”Read Full Post | Make a Comment ( Comments Off on Regulatory cultures and research governance – RAND – 2013 )
Supporting Consumer and Community Participation in Health and Medical Research: Future Directions for Australia – Consumers Health Forum of Australia – February 2013
“The purpose of this paper is to explore mechanisms to support consumer participation in health and medical research. This paper also provides a snapshot of the current literature, research and policy debate surrounding these issues. Our analysis draws on extensive work in this area, including consumer consultations and literature scoping undertaken by CHF throughout 2012.
CHF’s research and consultations suggest that more must be done to support active consumer engagement in health research to deliver more relevant and more responsive outcomes. This paper calls for consumer participation to play a key role in any future plans and strategies on health and medical research in the coming years.
CHF also calls for the inclusion of comparative effectiveness research as a central component of future health and medical research planning in Australia, and stronger incentives to encourage the publication of research in non-peer reviewed formats that can be more accessible to policymakers, practitioners and consumers.
To enable more collaborative research practices, CHF considers that the rules for Administering Institutions and Eligible Organisations should be reviewed and amended to support research funding for a broader range of organisations. Other grant funding rules and requirements should also be reviewed to enable greater community engagement in research design, investigation and data collection.
To support all of these activities, and to build on existing models of active consumer engagement, CHF calls for the establishment of a Consumer Health Research Centre.”
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Developing a Protocol for Observational Comparative Effectiveness Research: A User’s Guide – Agency for Healthcare Research and Quality – 12 February 2013
“Researchers from the Effective Health Care Program’s DEcIDE Network authored this 11-chapter guide that aims to serve as a resource for researchers when developing observational comparative effectiveness research (CER) studies. The user’s guide identifies best practices for designing observational CER studies and standardizes the review of study protocols with checklists in each chapter. Topics in this user’s guide include developing study objectives and questions, study design, data sources, and analysis.
The educator resources, 12 presentations in PowerPoint format, are aligned with each chapter to expand training in these best practices.”Read Full Post | Make a Comment ( Comments Off on Developing a Protocol for Observational Comparative Effectiveness Research: A User’s Guide – Agency for Healthcare Research and Quality – 12 February 2013 )
“The NHMRC 2013-15 Strategic Plan includes NHMRC priorities, the major health issues identified for the 2013-15 triennium, how NHMRC will deal with those issues and a strategy for medical research and public health research.
The Plan was presented “out of session” on 18 January 2013.”
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Introduction. Systematic reviewers are challenged by how to report and synthesize information about benefits and harms of medical interventions so that decisionmakers with varying preferences can better assess the balance of benefit and harm. Quantitative approaches exist for assessing benefits and harms, but it is unclear whether they are applicable to systematic reviews.
Objectives. The objectives of this report are: (1) to describe the challenges of quantitative approaches for assessing benefits and harms, (2) to describe methodological characteristics of existing quantitative approaches for assessing benefits and harms, (3) to determine the role of values and preferences in assessing benefits and harms across each step of a systematic review and (4) to formulate principles for assessing benefits and harms in systematic reviews.
Process. We formed a multidisciplinary team with expertise in clinical medicine, systematic reviews, statistics, and epidemiology. The team reviewed the literature on quantitative approaches for assessing benefits and harms of medical interventions, and held 12 weekly meetings to establish consensus about: 1) the challenges in assessing benefits and harms; 2) the methodological characteristics of approaches that have been used; and 3) the role of values and preferences when assessing benefits and harms in systematic reviews.
The team used that information to formulate principles for analyzing benefits and harms in systematic reviews so that decisionmakers are able to weigh the benefits and harms for a given population. An external panel of experts provided input in this process.
Results. Our team identified numerous challenges for the assessment of benefits and harms. The main challenges relate to selection of health outcomes important to patients, information asymmetry (e.g., reliable and robust data on benefits with sparse data on harms), and calculation of statistical uncertainty if benefit and harm are put on the same scale using a benefit harm comparison metric, and consideration of patient preferences.
We identified 16 quantitative approaches for the assessment of benefits and harms. Twelve of the methods can be used in a systematic review because the methods can be applied with the types of summary data that are typically reported and do not require individual patient data. Simpler approaches, such as the ratio of the number needed to treat to the number needed to harm, may be suitable for relatively simple decisionmaking contexts where relevant benefit and harm outcomes are few in number and similar in importance. More complex approaches are needed for decisionmaking contexts having a large number of relevant benefits and harms.
For individual-level decisions, values and preferences are key for determining the balance of benefit and harm. Choices are made by decisionmakers that are informed by the preferences of patients and other considerations. These choices, and therefore preferences, have an important role in determining how benefits and harms are assessed in systematic reviews. These choices and preferences also affect how guideline developers frame recommendations, how regulatory bodies make decisions at the population level, and how clinicians, patients, and other end users make decisions at the individual level.
The team formulated principles to conduct comparative assessments of benefits and harms in the context of a systematic review. For example, we recommend that systematic reviews define the decisionmaking context, report the sources of evidence used (e.g., estimates of baseline risks or treatment effects), be explicit about if and how patient preferences are considered, and provide a rationale for choosing a particular quantitative approach for comparative assessment of benefits and harms.
Conclusion. Quantitative approaches for comparative assessment of benefits and harms have strengths and limitations. The choice of a particular approach depends on the decisionmaking context, the quality and quantity of available data, and the epidemiological-statistical expertise of the systematic review team. A quantitative approach may help to improve the transparency of a review, relative to a qualitative approach, by being explicit about how benefits and harms are estimated and compared. Such transparency may help decisionmakers give proper consideration to complex information about benefits and harms.”Read Full Post | Make a Comment ( Comments Off on Methods for Benefit and Harm Assessment in Systematic Reviews – AHRQ – November 2012 )
Changing Mindsets – Strategy on Health Policy and Systems Research – WHO – 1 November 2012
“The World Health Organization has launched the first global strategy on health policy and systems research (HPSR) at the Second Global Symposium on Health Systems Research. This document represents a unique milestone in the evolution of health policy and systems research and has three broad aims.
First, it seeks to unify the worlds of research and decision-making and connect the various disciplines of research that generate knowledge to inform and strengthen health systems. Second, the strategy contributes to a broader understanding of this field by clarifying the scope and role of HPSR. It provides insight into the dynamic processes through which HPSR evidence is generated and used in decision-making. Finally, it is hoped that this strategy will serve as an agent for change and calls for a more prominent role for HPSR at a time when the health systems mandate is evolving towards broader goals of universal health coverage and equity.
This strategy on health policy and systems research is intended to augment and amplify WHO’s previous affirmations on the importance of health research, by explaining how this evolving field is sensitive and responsive to the needs of those who are responsible for the planning and performance of national health systems – decision-makers, health practitioners, citizens and civil society. By doing so, it does not move away from the field of health research – it aims to move the field ahead.”Read Full Post | Make a Comment ( Comments Off on Changing Mindsets – Strategy on Health Policy and Systems Research – WHO – 1 November 2012 )
“This year’s opinion polling looked at the importance of health and medical research to ordinary Australians, perceptions of who currently pays for health and medical research, and opinions on who should fund it. The survey was conducted online by email invitation to a national panel between 19 and 28 June 2012 with a representative sample of 1053 Australians aged 18 and over.
We have sought to understand who makes donations to health and medical research and why, and the barriers that prevent people from donating more when a majority of respondents think they should do so. We also gauged the response of individuals to the creation of a large government supported foundation for health and medical research, and the factors that would influence people to donate to such a foundation. Our history in conducting opinion polling (the first was conducted in 2004) enabled us to look at trends over time, identifying attitudes that have changed and some that have remained remarkably consistent over that period.”Read Full Post | Make a Comment ( Comments Off on What do Australians think about health & medical research? – Research Australia – November 2012 )
Audit of VA’s Systems Interconnections With Research and University Affiliates – Department of Veterans Affairs [US] – October 2012
“Why we did this review
VA Medical Cennters have numerouss systems interconnections witth external organizations to exchhange the daata needed to support a range of healthcare services and collaborative research studies. We conducted this audit to determine the effectivenness of VA’s management of its systems interconnections and data exchanges with external research and university affiliates.”Read Full Post | Make a Comment ( Comments Off on Audit of VA’s Systems Interconnections With Research and University Affiliates – Department of Veterans Affairs [US] – October 2012 )
FDA works with partners to establish important therapeutic area data standards – ExpressPharma – 25 October 2012
“A new partnership between the FDA, the Clinical Data Interchange Standards Consortium (CDISC), and the Critical Path Institute (C-Path) was officially launched at the CDISC International Interchange in Baltimore. This partnership, called the Coalition For Accelerating Standards and Therapies or CFAST, will bring together clinical data experts from the FDA, the pharmaceutical industry, and the information technology sector, to develop and maintain data standards tailored to individual diseases and therapeutic areas.
Standardised data elements that are common to all clinical trials, such as age and gender, have been established using CDISC terminology. However, data elements that are unique for a particular disease or therapeutic area still need to be developed so that the data from multiple trials can be more easily grouped for reporting and analysis.
In short, establishing common standards for data reporting will provide new opportunities to transform the massive amount of data from drug studies on specific diseases into useful information to potentially speed the delivery of new therapies to patients.”
“Clinical Data Interchange Standards Consortium (CDISC) Exit Disclaimer is an international, non-profit organization that develops and supports global data standards for medical research. CDISC is working actively with EVS to develop and support controlled terminology for a wide spectrum of clinical and nonclinical studies. CDISC terminology goes through an extensive process of content development and public review before it is declared ready for release. CDISC controlled terminology is versioned by date. All previous versions of CDISC controlled terminology can be found by clicking on the directory links below and going into the Archive subdirectory.”Read Full Post | Make a Comment ( Comments Off on FDA works with partners to establish important therapeutic area data standards – ExpressPharma – 25 October 2012 )
Europeran Science Foundation recent publications on research and knowledge translation
Implementation of Medical Research in Clinical Practice – 28 September 2012
A pan-European professional development framework for researchers – A feasibility study by the ESF Member Organisation Forum, European Alliance on Research Career Development – 24 August 2012
Author: Janet Metcalfe
The European Science Foundation Member Organisation Forum ‘European Alliance on Research Career Development’1 (MOF) was set up in 2010 following publication of the ‘EUROHORCs and ESF Vision on a Globally Competitive ERA and their Road Map for Actions’ report2 in July 2009. It consists of 21 ESF member organisations (research funding and performing organisations) from 17 European countries and active observers from the European Commission (EC), European Research Council (ERC), European Universities Association (EUA), League of European Research Universities (LERU), European Federation of National Academies of Science and Humanities (ALLEA) and Vitae. The Forum’s mission is to make sound and implementable recommendations in order to make Europe an attractive place to work as a researcher.
One of the Working Groups within the Forum is exploring researcher skills. It aims to work towards a shared definition of researchers’ professional profiles and provide guidance to encourage continuous professional development of researchers, thereby enhancing their chances of employment inside and outside academia. Part of this work stream is a Feasibility Study to assess the applicability across Europe of a generic framework for the professional development of researchers based on the Vitae Researcher Development Framework (RDF)3. The ESF hereby addresses an identified need for a structured approach towards continued professional development and the career development of researchers4. The present report presents the findings and recommendations from the feasibility study.”Read Full Post | Make a Comment ( Comments Off on A pan-European professional development framework for researchers – A feasibility study by the ESF Member Organisation Forum, European Alliance on Research Career Development – 24 August 2012 )
Dissemination and Adoption of Comparative Effectiveness Research Findings When Findings Challenge Current Practices – RAND – 2011
by Eric C. Schneider, Justin W. Timbie, D. Steven Fox, Kristin R. Van Busum, John Caloyeras
“Insufficient evidence regarding the effectiveness of medical treatments has been identified as a key source of inefficiency in the U.S. healthcare system. Variation in the use of diagnostic tests and treatments for patients with similar symptoms or conditions has been attributed to clinical uncertainty, since the published scientific evidence base does not provide adequate information to determine which treatments are most effective for patients with specific clinical needs. The federal government has made a dramatic investment in comparative effectiveness research (CER), with the expectation that CER will influence clinical practice and improve the efficiency of healthcare delivery. To do this, CER must provide information that supports fundamental changes in healthcare delivery and informs the choice of diagnostic and treatment strategies. This report summarizes findings from a qualitative analysis of the factors that impede the translation of CER into clinical practice and those that facilitate it. A case-study methodology is used to explore the extent to which these factors led to changes in clinical practice following five recent key CER studies. The enabling factors and barriers to translation for each study are discussed, the root causes for the failure of translation common to the studies are synthesized, and policy options that may optimize the impact of future CER — particularly CER funded through the American Recovery and Reinvestment Act of 2009 -are proposed.”Read Full Post | Make a Comment ( Comments Off on Dissemination and Adoption of Comparative Effectiveness Research Findings When Findings Challenge Current Practices – RAND – 2011 )
Studying policy implementation using a macro, meso and micro frame analysis: the case of the Collaboration for Leadership in Applied Health Research & Care (CLAHRC) programme nationally and in North West London
Studying policy implementation using a macro, meso and micro frame analysis: the case of the Collaboration for Leadership in Applied Health Research & Care (CLAHRC) programme nationally and in North West London
Sarah EM Caldwell and Nicholas Mays
Health Research Policy and Systems 2012, 10:32 doi:10.1186/1478-4505-10-32
Published: 15 October 2012
The publication of Best research for best health in 2006 and the “ring-fencing” of health research funding in England marked the start of a period of change for health research governance and the structure of research funding in England. One response to bridging the ‘second translational gap’ between research knowledge and clinical practice was the establishment of nine Collaborations for Leadership in Applied Health Research and Care (CLAHRCs). The goal of this paper is to assess how national-level understanding of the aims and objectives of the CLAHRCs translated into local implementation and practice in North West London.
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“NOO has now produced three Standard Evaluation Frameworks (SEFs):
SEF for weight management interventions (published March 2009)
SEF for physical activity interventions (published September 2012)
SEF for dietary interventions (published September 2012)
The aim of the Standard Evaluation Frameworks (SEF) is to support high quality, consistent evaluation of weight management, diet and physical activity interventions in order to increase the evidence base.
The SEFs provide introductory guidance on the principles of evaluation, and list ‘essential’ and ‘desirable’ criteria. Essential criteria are presented as the minimum recommended data for evaluating a weight management intervention. Desirable criteria are additional data that would enhance the evaluation. Supporting guidance describes why particular criteria have been categorised as essential or desirable, and provides further information on collecting data. The SEFs are essential reading to those commissioning, running or evaluating weight management, diet or physical activity interventions.”Read Full Post | Make a Comment ( Comments Off on National Obesity Observatory [NHS] – Standard evaluation frameworks )
NIH creates Office of Emergency Care Research – 31 July 2012
“Will coordinate and foster research and training in the emergency setting
To help improve health outcomes of patients who require emergency care, the National Institutes of Health has created a new Office of Emergency Care Research (OECR). The office is a focal point for basic, clinical and translational emergency care research and training across NIH.
“NIH has supported research to advance emergency care for years; however, now we have a single office to coordinate and foster our activities in this arena,” said NIH Director Francis S. Collins, M.D., Ph.D. “The NIH Office of Emergency Care Research will focus on speeding diagnosis and improving care for the full spectrum of conditions that require emergency treatment.”
Although OECR will not fund grants, it will foster innovation and improvement in emergency care and in the training of future researchers in this field by:”
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“ORCID is an international, interdisciplinary, open, and not-for-profit organization created for the benefit of all stakeholders, including research institutions, funding organizations, publishers, and researchers to enhance the scientific discovery process and improve collaboration and the efficiency of research funding.
ORCID aims to solve the name ambiguity problem in scholarly communications by creating a registry of persistent unique identifiers for individual researchers and an open and transparent linking mechanism between ORCID, other ID schemes, and research objects such as publications, grants, and patents.”
“The ORCID Registry will go live in October, 2012. At that time, individuals may register for a persistent ORCID ID and manage their ORCID record.”Read Full Post | Make a Comment ( Comments Off on ORCID: Open Researcher and Contributor ID – launch plan announced – 17 July 2012 )
Preliminary Draft Methodology Report: Our Questions, Our Decisions: Standards for Patient-centered Outcomes Research – Patient-Centered Outcomes Research Institute – published for public comment 23 July 2012
Preliminary Draft Methodology Report: Our Questions, Our Decisions: Standards for Patient-centered Outcomes Research – Patient-Centered Outcomes Research Institute – published for public comment 23 July 2012
Extract from the executive summary:
“In this first report, the Methodology Committee puts forward 60 standards to guide patient-centered outcomes research (Appendix A). The initial range of topics was chosen to reflect areas in which the Committee believed that there were either substantial deficiencies or inconsistencies in how the methods were applied in practice, or for which there was specialized knowledge in how best to conduct research that had not been effectively disseminated.(1-3)”
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Informatics Needs and Challenges in Cancer Research – Workshop Summary – Institute of Medicine – 16 July 2012
“As information technology becomes an integral part of health care, it is important to collect and analyze data in a way that makes the information understandable and useful. Informatics tools – which help collect, organize, and analyze data – are essential to biomedical and health research and development. The field of cancer research is facing an overwhelming deluge of data, heightening the national urgency to find solutions to support and sustain the cancer informatics ecosystem. There is a particular need to integrate research and clinical data to facilitate personalized medicine approaches to cancer prevention and treatment – for example, tailoring treatment based on an individual patient’s genetic makeup as well as that of the tumor – and to allow for more rapid learning from patient experiences.
To further examine informatics needs and challenges for 21st century biomedical research, the IOM’s National Cancer Policy Forum held a workshop February 27-28, 2012. The workshop was designed to raise awareness of the critical and urgent importance of the challenges, gaps and opportunities in informatics; to frame the issues surrounding the development of an integrated system of cancer informatics for acceleration of research; and to discuss solutions for transformation of the cancer informatics enterprise. This document summarizes the workshop.”Read Full Post | Make a Comment ( Comments Off on Informatics Needs and Challenges in Cancer Research – Workshop Summary – Institute of Medicine – 16 July 2012 )
Australian-first technology initiative a shot in the arm for health research – Sax Institute – 5 July 2012
“Faster, more comprehensive answers to Australia’s most pressing health questions are now within the grasp of researchers following the launch of an innovative $4million public-good technology initiative in Sydney today.
SURE – the Secure Unified Research Environment – is Australia’s first high-performance “virtual computing environment” designed specifically for health researchers to securely access, store and rapidly analyse anonymised health information brought together from sources such as hospitals, cancer registries, clinical trials, general practice, and research studies. ”
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Table of contents
Case 1: The “public voice” informs HIV service planning at Vancouver Coastal Health
Case 2: Engaging Canadians in the development of a mental health strategy for Canada
Case 3: Campobello Island health and well-being needs assessment (2008-2009)
Case 4: Québec health and welfare commissioner’s consultation forum
Case 5: The CommunityView Collaboration
Case 6: Shared challenge, shared solution: Northumberland hills hospital’s collaborative budget strategy
Case 7: Our health. Our perspectives. Our solutions: Establishing a common health vision
Case 8: The use of a holistic wellness framework & knowledge networks in Métis health planning
Case 9: Canadian Blood Services’ stakeholder engagement for organ and tissue donation
Case 10: Human tissue biobanking in B.C
Case 11: Share your story, shape your care — engaging Northwestern Ontario
Case 12: Consulting Ontario citizens to inform the evaluation of health technologies: The citizens’ reference panel on health technologies
Case 13: The Eastern Health patient advisory council for cancer care
Case 14: The Toronto food policy council: Twenty years of citizen leadership for a healthy, equitable, and sustainable food system
Clear and Present Data: how access to our medical records can help life-saving science – British Heart Foundation – 25 June 2012
“… shows how the information contained in our medical records has helped us better understand the factors that lead to heart and circulatory disease – and sets out what needs to happen to make sure we can all benefit from this information.”Read Full Post | Make a Comment ( Comments Off on Clear and Present Data: how access to our medical records can help life-saving science – British Heart Foundation – 25 June 2012 )
“This resource provides examples of the impact of public involvement in the ethical design and conduct of research.
Authors: Kristina Staley, TwoCan Associates; Maryrose Tarpey, INVOLVE Coordinating Centre; Helen Hayes, INVOLVE Coordinating Centre and Sarah Buckland, INVOLVE Coordinating Centre.
Drawing on findings from three reviews (Brett et al. 2010; Staley 2009; Smith et al. 2008) and more recent literature, this supplement illustrates how public involvement throughout a study can help to make research more ethical.”Read Full Post | Make a Comment ( Comments Off on Public involvement in research:impact on ethical aspects of research – INVOLVE – June 2012 )
“The NHS’s ability to harness innovation to improve patient outcomes is more important than ever in a tough financial climate. Uniquely among the organisations supporting this agenda, the National Institute for Health Research (NIHR) Collaborations for Leadership in Applied Health Research and Care (CLAHRCs) have integrated research and implementation to ensure findings improve practice in real time.
They carry out high-quality applied health research and support getting research evidence into practice in the NHS. It has been said that getting research into practice takes 17 years; CLAHRCs have shown that it’s possible within three years through collaborative partnership working. They provide a powerful model to connect innovation, evidence and implementation.
The NHS Confederation has been closely involved in the work of CLAHRCs and continues to host their national support function. This Briefing describes the CLAHRC approach and their impact to date as well as the factors that continue to contribute to their successes.”Read Full Post | Make a Comment ( Comments Off on Integrating research into practice: the CLAHRC experience – NHS Confederation – 19 June 2012 )
Patient-Centered Outcomes Research Institute [US] – website link
“The Patient-Centered Outcomes Research Institute (PCORI) is authorized by Congress to conduct research to provide information about the best available evidence to help patients and their health care providers make more informed decisions. PCORI’s research is intended to give patients a better understanding of the prevention, treatment and care options available, and the science that supports those options.”Read Full Post | Make a Comment ( Comments Off on Patient-Centered Outcomes Research Institute [US] – website link )
Prepared by: Sarah Bowen, PhD, Associate Professor, Department of Public Health Sciences, School of Public Health, University of AlbertaRead Full Post | Make a Comment ( Comments Off on A Guide to Evaluation in Health Research – Canadian Institutes of Health Research – June 2012 )
Peer Review of Search Strategies – AHRQ – June 2012
Prepared for: Agency for Healthcare Research and Quality, U.S. Department of Health and Human Services
Background. Many steps in the preparation of effectiveness and comparative effectiveness reviews (CERs) by the Agency for Healthcare Research and Quality‘s Effective Health Care (EHC) Program involve outside review and input (e.g., by Key Informants, the Technical Expert Panel, Draft Report Peer Reviewers). However, development of bibliographic database search strategies is currently not consistently peer reviewed. An opportunity exists for the EHC Program to leverage its expert searchers across the 14 Evidence-based Practice Centers (EPCs) in the Program by implementing a process of peer review of search strategies.
Objective. Due to the number and frequency of observed errors in published search strategies uncovered in the research literature, an evaluation of the feasibility of instituting a peer review process is warranted.
1. Evaluate whether the PRESS instrument or no-instrument (‗free-form‘ evaluations) is preferred by Technical Expert Peer Reviewers (TEPRs) of search strategies.
2. Evaluate the usefulness of a peer review process for database search strategies, that is, do peer reviews change search strategies.
3. Evaluate the costs of implementing a formal peer review of search strategies program as a part of the review process.
Methods. We identified current research protocol phase CER search strategies to review, TEPRs from across the EHC Program, and the original expert searchers who worked on developing each of the search strategies. Each TEPR was assigned to either the control group who only wrote ―free-form‖ reviews or to the group who initially wrote a ―free-form‖ review, then trained using the PRESS Instrument, and finally completed the last review using the PRESS instrument. Original expert searchers were asked to comment on the reviews of their searches. One study researcher administered the peer review process and log time required to perform it, while the other, blinded study researcher analyzed qualitative and quantitative data derived from the reviews, as well as demographic information about the TEPR and original expert searchers.
Results. As a whole, the group of people available to conduct and review search strategies in the EHC Program is professionally educated and very experienced. Of the 24 respondents to the demographic survey, 20 (83%) have master‘s degrees in library science. Most have more than 10 years‘ experience as a librarian or other information professional. Sixty-seven percent of respondents have more than 5 years experience contributing to systematic reviews, with 63 percent having contributed to more than 10 systematic reviews. These experienced searchers have a variety of relationships with the EPCs for whom they do searches. Of the 25 peer reviewers invited to participate, 24 completed the initial free-form round of reviews, and 15 completed either the PRESS review or a second free-form review as part of our control group. For the most part peer reviewers were positive about the review process, although many hesitated to incorporate the review process into their current workflow. All of the reviewers found the background material (systematic review protocol) helpful to the review. Of those who used the PRESS instrument, 82 percent (9) indicated that the instrument was helpful, 18 percent (2) reported that it was neither helpful nor limiting, and none of the reviewers indicated that the PRESS instrument was limiting. The PRESS instrument reviews contained more recommendations on the whole and in particular had more comments that could be termed error detection—specific comments about spelling or syntax indicating that a mistake had been made. In 97 percent of cases, the original searcher indicated that the comments did not cause them to alter their search strategies.
Conclusions. While the results of this study suggest that if a formal peer review process is to be valuable then it would need to be both timely and timed for a window of opportunity immediately prior to the finalization of the protocol. Even if a formal peer review process is not implemented, the PRESS instrument could be useful in informal peer review or even self review. If review of search strategies is to take place, then these results suggest that the use of the PRESS instrument would cut down the time taken, increase the likelihood of response and be more effective in identifying actual errors in search strategies. Additionally, the content of the reviews indicates that there are several search tactics for which there is no consensus, and further research could help us to understand variation in practice around such issues as limits, searching for observational studies, and searching for outcomes and comparators. The process of reviewing other searchers‘ work can bring these issues to light, and a peer review-like process could be used to start investigations and discussions of what techniques work and why. Finally, many of the reviewers commented on the difficulty of reading the search strategies as currently presented. The EHC Program currently has no standards for reporting search strategies, and there is no recognized standard for reporting search strategies. Adopting standard of reporting designed to facilitate review may make it easier to review search strategies both internally and when reported to the public.”Read Full Post | Make a Comment ( Comments Off on Peer Review of Search Strategies – AHRQ – June 2012 )
Embedding of research into decision-making processes – WHO Alliance for Health Policy and Systems Research – April 2012
Adam D Koon, Devaki Nambiar, Krishna D Rao
Background paper commissioned by the Alliance for Health Policy and Systems Research to develop the WHO Health Systems Research Strategy
This study is concerned with the uptake of research evidence in policy decisions for health and the factors which are conducive for this. Specifically, this study seeks to:
(a) Present a conceptual understanding of institutional embeddedness and apply it to the context of research in policy making in health. Further, through a review of the literature, document the institutional arrangements that facilitate the embedding of research use in the policy-making domain.
(b) Present country case studies to illustrate the embeddedness of research use in policy-making and the contextual and institutional factors that create enabling conditions for it.
We examine these questions from the perspective of the six WHO building blocks – service delivery, health workforce, information, medical products, financing and governance. Information is sourced from the existing literature and from country case studies.Read Full Post | Make a Comment ( Comments Off on Embedding of research into decision-making processes – WHO Alliance for Health Policy and Systems Research – April 2012 )
“GEM (Grid-Enabled Measures) is an interactive website containing behavioral, social science, and other scientific measures organized by theoretical constructs. GEM enables researchers to collaborate with others, encourages the use of common measures, and facilitates the sharing of harmonized data.
Users can search for a construct (e.g., anxiety, depression), see a definition of the construct, view its theoretical foundation, and download different measures of the construct.
Users can also search for a measure and see attributes of that measure (e.g., definition, target population, author, reliability, validity), including the associated construct.
Users can also examine usage statistics, comments, and ratings from other GEM users about measures to help decide which measure to use in future research.
Users can contribute to the virtual community by adding or editing meta-data about constructs and measures and commenting on and rating measures.
Datasets using GEM measures and constructs may be available for downloading and sharing.
Goals of GEM
GEM enables users to collaborate with their peers to build consensus on the use of common measures and to facilitate broad-scale data sharing and harmonization.”
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Bisias D, Lo AW, Watkins JF (2012) Estimating the NIH Efficient Frontier. PLoS ONE 7(5): e34569. doi:10.1371/journal.pone.0034569
The National Institutes of Health (NIH) is among the world’s largest investors in biomedical research, with a mandate to: “…lengthen life, and reduce the burdens of illness and disability.” Its funding decisions have been criticized as insufficiently focused on disease burden. We hypothesize that modern portfolio theory can create a closer link between basic research and outcome, and offer insight into basic-science related improvements in public health. We propose portfolio theory as a systematic framework for making biomedical funding allocation decisions–one that is directly tied to the risk/reward trade-off of burden-of-disease outcomes.
Methods and Findings
Using data from 1965 to 2007, we provide estimates of the NIH “efficient frontier”, the set of funding allocations across 7 groups of disease-oriented NIH institutes that yield the greatest expected return on investment for a given level of risk, where return on investment is measured by subsequent impact on U.S. years of life lost (YLL). The results suggest that NIH may be actively managing its research risk, given that the volatility of its current allocation is 17% less than that of an equal-allocation portfolio with similar expected returns. The estimated efficient frontier suggests that further improvements in expected return (89% to 119% vs. current) or reduction in risk (22% to 35% vs. current) are available holding risk or expected return, respectively, constant, and that 28% to 89% greater decrease in average years-of-life-lost per unit risk may be achievable. However, these results also reflect the imprecision of YLL as a measure of disease burden, the noisy statistical link between basic research and YLL, and other known limitations of portfolio theory itself.
Our analysis is intended to serve as a proof-of-concept and starting point for applying quantitative methods to allocating biomedical research funding that are objective, systematic, transparent, repeatable, and expressly designed to reduce the burden of disease. By approaching funding decisions in a more analytical fashion, it may be possible to improve their ultimate outcomes while reducing unintended consequences.”
Public access to publicly-funded research – By David Willetts, Minister of State for Universities and Science (attending Cabinet) – 2 May 2012
Speech delivered to the Publishers Association annual general meeting, London
“I am very grateful for this opportunity to set out the Government’s approach to accessing and publishing research findings.
We are very fortunate to have such outstanding science and research capacity in this country. It is second in its range and volume only to the US. When it comes to the output generated from the funding that goes in, it is quite simply the most productive in the world. And no other country produces such a high proportion of work that is excellent. The recent review by Reed Elsevier, amongst others, provides the rigorous evidence behind these statements. With 1% of the world’s population and 4% of its researchers, we produce 6% of the world’s academic articles and 14% of those which are most highly cited. There are about 1.7 million academic articles published around the world, of which about 120,000 come from UK research. Thanks to the quality and success of our publishing industry, meanwhile, 400,000 of the world’s academic papers are published in the UK. If the rest of Britain performed like our research and publishing community, we would have rather fewer economic problems to tackle.”
“The British government has enlisted the services of Wikipedia in a push to make all taxpayer-funded academic research from the UK freely available online – regardless of whether it is also published in a subscription-only journal.
The move is to be announced by the universities and science minister, David Willetts, when he addresses the Publishers Association on Wednesday (British time).”
by Guy Rundle
“Quietly this week, while the UK was in uproar about the activities of the last big media company in a dying industry, something of far greater import happened in the world of media and information. The UK government announced that it would be making all research papers generated within its public universities available openly, online, for free.”Read Full Post | Make a Comment ( Comments Off on Public access to publicly-funded research – By David Willetts, Minister of State for Universities and Science (attending Cabinet) – 2 May 2012 )
by Claire Goodman, Katherine Froggatt, Elspeth Mathie
This review provides an overview of the range of research methods that have been commonly used in end of life care research and their relevance for social care. It provides a policy and service context for understanding end of life care research in social care and, using examples from relevant research, considers the advantages and disadvantages of different research methods and tools. The particular ethical challenges and practical issues that may arise are discussed along with some strategies and sources of support to address them.”Read Full Post | Make a Comment ( Comments Off on End of Life Care [research methodology] – School for Social Care Research – April 2012 )
Valuing Health Care: Improving Productivity and Quality – Ewing Marion Kauffman Foundation [US] – 19 April 2012
“Cost trends in U.S. health care consistently increase at about 2.5 percentage points faster than the general rate of inflation – clearly an unsustainable rate. To address what it called “America’s most urgent public policy problem,” the Ewing Marion Kauffman Foundation released a report at The Atlantic’s fourth annual Health Care Forum in Washington today that focuses on improving the cost-benefit balance in American health care through open access to medical data….
The report, “Valuing Health Care: Improving Productivity and Quality,” is based on the recommendations of 31 experts from related fields, whom the Kauffman Foundation convened to reframe thinking around the question, “How can the productivity and value of American health care be increased, in both the short-term and long-term?”
Specifically, the report recommends:
Unleashing the power of information by breaking down silos and encouraging data sharing between research centers, medical offices, pharmaceutical companies, insurance firms and others; and that a new corps of data entrepreneurs be incentivized to collect and analyze existing medical data to discover and then disseminate new therapies.
Funding more translational, cross-cutting research, with larger average grants made available to larger teams, many of them with participants from multiple institutions; and requiring collaboration across research institutions.
Reforming medical malpractice systems to streamline new drug approvals and remove counter-productive restrictions on health insurance premiums.
Empowering patients by, among other means, providing unbiased information on treatment options’ benefits and drawbacks, and helping them make choices about the relevant lifestyle implications and risk-reward tradeoffs.
Further, the task force contends, health care delivery deserves its own national research program, one focused on comparative efficiency research. More efficiency (with acceptable quality guidelines) leads to profitability, and corrects the easy practice of simply passing costs down the health care stream.”Read Full Post | Make a Comment ( Comments Off on Valuing Health Care: Improving Productivity and Quality – Ewing Marion Kauffman Foundation [US] – 19 April 2012 )
Envisioning a Transformed Clinical Trials Enterprise in the United States: Establishing an Agenda for 2020 – Workshop Summary – Institute of Medicine – 13 April 2012
“There is growing recognition that the United States’ clinical trials enterprise (CTE) faces great challenges. There is a gap between what is desired – where medical care is provided solely based on high quality evidence – and the reality – where there is limited capacity to generate timely and practical evidence for drug development and to support medical treatment decisions.
With the need for transforming the CTE in the U.S. becoming more pressing, the IOM Forum on Drug Discovery, Development, and Translation held a two-day workshop in November 2011, bringing together leaders in research and health care. The workshop focused on how to transform the CTE, and discussed a vision to make the enterprise more efficient, effective, and fully integrated into the health care system. Key issue areas addressed at the workshop included: the development of a robust clinical trials workforce, the alignment of cultural and financial incentives for clinical trials, and the creation of a sustainable infrastructure to support a transformed CTE. This document summarizes the workshop.”Read Full Post | Make a Comment ( Comments Off on Envisioning a Transformed Clinical Trials Enterprise in the United States: Establishing an Agenda for 2020 – Workshop Summary – Institute of Medicine – 13 April 2012 )
“Addressing a major concern of Member States, UNESCO has released a new publication entitled Policy Guidelines for the Development and Promotion of Open Access to demystify the concept of Open Access and provide concrete steps on putting relevant policies in place.
Besides strengthening capacities to adopt Open Access (OA) and to serve as a clearing-house on global OA debate, the 187th session of the Executive Board identified provision of upstream policy advice as the core priority while approving the Open Access Strategy on UNESCO’s contribution to promotion of Open Access to scientific information and research.
Building capacities in Member States for Open Access is a necessary but not sufficient condition for promotion of OA. Creating an enabling policy environment in Member States for OA is therefore a priority. The new publication will serve the needs of OA policy development at the government, institutional and funding agency level.
The overall objective of the Policy Guidelines is to promote Open Access in Member States by facilitating understanding of all relevant issues related to Open Access. Specifically, it is expected that the document shall:”
… continues on the siteRead Full Post | Make a Comment ( Comments Off on Policy Guidelines for the Development and Promotion of Open Access – UNESCO – 6 April 2012 )
Canada, Australia and New Zealand establish a new research partnership – Australian Health Workforce Institute – 20 March 2012
“Ottawa (March 20, 2012) – The Canadian Institutes of Health Research (CIHR), the Australian Primary Health Care Research Institute (APHCRI) at the Australian National University and the Health Research Council of New Zealand (HRC NZ) are partnering to fund research on innovative models of Community-based Primary Healthcare (CBPHC). As part of CIHR’s Signature Initiative, funded teams will examine how to better prevent and manage chronic disease, as well as improve access to care for vulnerable populations.”
Read more:http://www.cihr-irsc.gc.ca/e/45078.htmlRead Full Post | Make a Comment ( Comments Off on Canada, Australia and New Zealand establish a new research partnership – Australian Health Workforce Institute – 20 March 2012 )
Background Paper on Conceptual Issues Related to Health Systems Research to Inform a WHO Global Strategy on Health Systems Research – 29 February 2012
Steven J. Hoffman et al
“This paper was commissioned to provide a conceptual underpinning for the WHO Global Strategy on Health Systems Research that is currently under development. It reviews existing definitions, terms, conceptual models, taxonomies, standards, methods and research designs which describe the scope of health systems research as well as the barriers and opportunities that flow from them. It addresses each of the five main goals of the WHO Strategy on Research for Health, including organization, priorities, capacity, standards and translation.1 Any feedback would be greatly appreciated and can be sent by email to Steven Hoffman (email@example.com).”
Health systems research is widely recognized as essential for strengthening health systems, getting cost-effective treatments to those who need them, and achieving better health status around the world. However, there is significant ambiguity and confusion in this field’s characteristics, boundaries, definition and methods. Adding to this ambiguity are major conceptual barriers to the production, reproduction, translation and implementation of health systems research relating to both the complexity of health systems and research involving them. These include challenges with generalizability, comparativity, applicability, transferability, standards, priority-setting and community diversity. Three promising opportunities exist to mitigate these barriers and strengthen the important contributions of health systems research. First, health systems research can be supported as a field of scientific endeavour, with a shared language, rigorous interdisciplinary approaches, cross-jurisdictional learning and an international society. Second, national capacity for health systems research can be strengthened at the individual, organizational and system levels. Third, health systems research can be embedded as a core function of every health system. Addressing these conceptual barriers and supporting the field of health systems research promises to both strengthen health systems around the world and improve global health outcomes.”
Designing the Microbial Research Commons: Proceedings of an International Workshop – National Research Council (US) Board on Research Data and Information – 5 March 2012
Edited by Paul F UhlirRead Full Post | Make a Comment ( Comments Off on Designing the Microbial Research Commons: Proceedings of an International Workshop – National Research Council (US) Board on Research Data and Information – 5 March 2012 )
Developing the Role of the Clinical Academic Researcher in the Nursing, Midwifery and Allied Health Professions – Department of Health [UK] – 8 March 2012Read Full Post | Make a Comment ( Comments Off on Developing the Role of the Clinical Academic Researcher in the Nursing, Midwifery and Allied Health Professions – Department of Health [UK] – 8 March 2012 )
Focus & alignment : the research priorities of Canada’s academic healthcare organizations – Association of Canadian Academic Healthcare Organizations – February 2012
by Tina Saryeddine, Glenn Brimacombe ISBN 978-0-9865955-5-4
“The purpose of this report is to address the following three questions: what are the top three research priorities that ACAHO members are focused on? how do these priorities map against the Canadian Institutes of Health Research’s (CIHR) four pillars of health research and the emerging health and health system challenges that have been identified by governments, health charities and CIHR?; and how are these priorities aligned with the federal government’s Science and Technology Strategy and its sub-themes for health?”Read Full Post | Make a Comment ( Comments Off on Focus & alignment : the research priorities of Canada’s academic healthcare organizations – Association of Canadian Academic Healthcare Organizations – February 2012 )
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