Keeping Research Data Safe: a cost model and guidance for UK universities (KRDS1)

This study has investigated the medium to long term costs to Higher Education Institutions (HEIs) of the preservation of research data and developed guidance to HEFCE and institutions on these issues. It has provided an essential methodological foundation on research data costs for the forthcoming HEFCE-sponsored feasibility study for a UK Research Data Service.It will also assist HEIs and funding bodies wishing to establish strategies and TRAC costings for long-term data management and archiving. The rising tide of digital research data raises issues relating to access, curation and preservation for HEIs and within the UK a growing number of research funders are now implementing policies requiring researchers to submit data management, preservation or data sharing plans with their funding applications.

JRDPR Research Data Policy Survey

Spreadsheet list of discovered journal research data policies, gathered in 2015 as a part of the JRPDR project. Research conducted for Jisc by Research Consulting and Spotlight Data. Underpins project final report [http://repository.jisc.ac.uk/6264/ ]

Data for research data policy registry final report

Underpins final report at: http://repository.jisc.ac.uk/6264/ Spreadsheet of discovered research data journal policies, collected late 2015.

Methodology of the Lake Victoria Fisheries Research Project's Co-management survey

In this book section, the theoretical background to the methodology is outlined, questionnaire development described, sample selection outlined and biases and shortcomings to the survey noted.

Efficacy of a cognitive and behavioural psychotherapy applied by primary care psychologists in patients with mixed anxiety-depressive disorder: a research protocol

Background: In contrast with the recommendations of clinical practice guidelines, the most common treatment for anxiety and depressive disorders in primary care is pharmacological. The aim of this study is to assess the efficacy of a cognitive-behavioural psychological intervention, delivered by primary care psychologists in patients with mixed anxiety-depressive disorder compared to usual care. Methods/Design: This is an open-label, multicentre, randomized, and controlled study with two parallel groups. A random sample of 246 patients will be recruited with mild-to-moderate mixed anxiety-depressive disorder, from the target population on the lists of 41 primary care doctors. Patients will be randomly assigned to the intervention group, who will receive standardised cognitive-behavioural therapy delivered by psychologists together with usual care, or to a control group, who will receive usual care alone. The cognitive-behavioural therapy intervention is composed of eight individual 60-minute face-to face sessions conducted in eight consecutive weeks. A follow-up session will be conducted over the telephone, for reinforcement or referral as appropriate, 6 months after the intervention, as required. The primary outcome variable will be the change in scores on the Short Form-36 General Health Survey. We will also measure the change in the frequency and intensity of anxiety symptoms (State-Trait Anxiety Inventory) and depression (Beck Depression Inventory) at baseline, and 3, 6 and 12 months later. Additionally, we will collect information on the use of drugs and health care services. Discussion: The aim of this study is to assess the efficacy of a primary care-based cognitive-behavioural psychological intervention in patients with mixed anxiety-depressive disorder. The international scientific evidence has demonstrated the need for psychologists in primary care. However, given the differences between health policies and health services, it is important to test the effect of these psychological interventions in our geographical setting.

National Agricultural Research Organisation. National Fisheries Resources Research Institute Annual Report 2007/2008

During the reporting period, NaFIRRI realigned its projects under ARTP II extension to focus on: 1. Determination of appropriate technologies and methods for harvesting and conservation of fish species in the Albert and Kyoga Systems 2. Impact of policies and technologies on livelihoods 3. Generation of knowledge for the management of aquatic invasive weeds and their hot spots in Lakes Albert and Kyoga 5. Determination of environmental factors influencing productivity for fisheries in Lakes Albert and Kyoga Systems 6. MSI - Nile perch project 7. Adaptation and Facilitating Dissemination of Appropriate technologies for harvesting Commercial Species 8. Identification of fish species suitable for culture and marketing, and promotion of their commercial culture in the Eastern AEZ.

Policies on poverty and the fisheries sector in Uganda: the current policy trends

There are concerns, at least among the proponents of development, on how to link policy development processes in Uganda and the associated transformation of the poor to high standards of living. In fact some questions have been posed as to whether it's the absence of poverty-targeted policies that a good proportion of individuals or communities are still poor. In the fisheries sector where most of the fish dependent communities live, poverty indications are still prevalent although arguments have been put that current reforms in the sector have transformed the lives of the fish dependent communities. The 1999/2000 household survey report indicates that the poverty levels reduced to 35% of Uganda's total population from 44% in 1997. The question that arose, which still arises anyway, was to define who is actually poor. When measuring poverty one is ultimately interested in the 'standards of living' of individuals especially those, whose standards of living are inadequate. The basic element of measuring this inadequacy/adequacy, at least in Uganda, is to use the household income or consumption per adult equivalent. Studies have demonstrated that household consumption expenditure is a good approximation of household income1. Therefore, for purpose of this report, we define poor households to mean based on that that one adopted by the Ministry of Finance to mean "households whose expenditure per adult equivalent falls below the poverty line 3 ". Many government documents report that the poverty line is one dollar a day. Therefore someone is below the poverty line if he or she lives on less than one dollar a day. In this paper, we analyse the evolution of poverty-driven policies that have been put in place by government and how these policies are shifting or are likely to shift the lives of fish dependent communities. We argue that combinations of poverty-policies are being translated into increased incomes and welfare of most individuals in the fisheries sector. The reasons for this shift, we argue, is as a result of a combination of factors all supported by non other that poverty-led government policies.

The Limitations of Law in promoting synergy between environment and development policies in developing countries

Journal of Energy and Natural Resources Law, 24(4) pp.574-606 RAE2008

Media Literacy in Wales: a Critical Review of Industry and Education Policies

Griffiths, L.; and O'Malley, T. (2007). Media Literacy in Wales: a Critical Review of Industry and Education Policies. Cyfrwng. 4, pp.7-23. RAE2008

Declarative Transport: No More Transport Protocols to Design, Only Policies to Specify

Transport protocols are an integral part of the inter-process communication (IPC) service used by application processes to communicate over the network infrastructure. With almost 30 years of research on transport, one would have hoped that we have a good handle on the problem. Unfortunately, that is not true. As the Internet continues to grow, new network technologies and new applications continue to emerge putting transport protocols in a never-ending flux as they are continuously adapted for these new environments. In this work, we propose a clean-slate transport architecture that renders all possible transport solutions as simply combinations of policies instantiated on a single common structure. We identify a minimal set of mechanisms that once instantiated with the appropriate policies allows any transport solution to be realized. Given our proposed architecture, we contend that there are no more transport protocols to design—only policies to specify. We implement our transport architecture in a declarative language, Network Datalog (NDlog), making the specification of different transport policies easy, compact, reusable, dynamically configurable and potentially verifiable. In NDlog, transport state is represented as database relations, state is updated/queried using database operations, and transport policies are specified using declarative rules. We identify limitations with NDlog that could potentially threaten the correctness of our specification. We propose several language extensions to NDlog that would significantly improve the programmability of transport policies.

The effects of copayment policies on adherence to prescription medicines in publicly insured populations

Introduction: Copayments for prescriptions are associated with decreased adherence to medicines resulting in increased health service utilisation, morbidity and mortality. In October 2010 a 50c copayment per prescription item was introduced on the General Medical Services (GMS) scheme in Ireland, the national public health insurance programme for low-income and older people. The copayment was increased to €1.50 per prescription item in January 2013. To date, the impact of these copayments on adherence to prescription medicines on the GMS scheme has not been assessed. Given that the GMS population comprises more than 40% of the Irish population, this presents an important public health problem. The aim of this thesis was to assess the impact of two prescription copayments, 50c and €1.50, on adherence to medicines.Methods: In Chapter 2 the published literature was systematically reviewed with meta-analysis to a) develop evidence on cost-sharing for prescriptions and adherence to medicines and b) develop evidence for an alternative policy option; removal of copayments. The core research question of this thesis was addressed by a large before and after longitudinal study, with comparator group, using the national pharmacy claims database. New users of essential and less-essential medicines were included in the study with sample sizes ranging from 7,007 to 136,111 individuals in different medication groups. Segmented regression was used with generalised estimating equations to allow for correlations between repeated monthly measurements of adherence. A qualitative study involving 24 individuals was conducted to assess patient attitudes towards the 50c copayment policy. The qualitative and quantitative findings were integrated in the discussion chapter of the thesis. The vast majority of the literature on this topic area is generated in North America, therefore a test of generalisability was carried out in Chapter 5 by comparing the impact of two similar copayment interventions on adherence, one in the U.S. and one in Ireland. The method used to measure adherence in Chapters 3 and 5 was validated in Chapter 6. Results: The systematic review with meta-analysis demonstrated an 11% (95% CI 1.09 to 1.14) increased odds of non-adherence when publicly insured populations were exposed to copayments. The second systematic review found moderate but variable improvements in adherence after removal/reduction of copayments in a general population. The core paper of this thesis found that both the 50c and €1.50 copayments on the GMS scheme were associated with larger reductions in adherence to less-essential medicines than essential medicines directly after the implementation of policies. An important exception to this pattern was observed; adherence to anti-depressant medications declined by a larger extent than adherence to other essential medicines after both copayments. The cross country comparison indicated that North American evidence on cost-sharing for prescriptions is not automatically generalisable to the Irish setting. Irish patients had greater immediate decreases of -5.3% (95% CI -6.9 to -3.7) and -2.8% (95% CI -4.9 to -0.7) in adherence to anti-hypertensives and anti-hyperlipidaemic medicines, respectively, directly after the policy changes, relative to their U.S. counterparts. In the long term, however, the U.S. and Irish populations had similar behaviours. The concordance study highlighted the possibility of a measurement bias occurring for the measurement of adherence to non-steroidal anti-inflammatory drugs in Chapter 3. Conclusions: This thesis has presented two reviews of international cost-sharing policies, an assessment of the generalisability of international evidence and both qualitative and quantitative examinations of cost-sharing policies for prescription medicines on the GMS scheme in Ireland. It was found that the introduction of a 50c copayment and its subsequent increase to €1.50 on the GMS scheme had a larger impact on adherence to less-essential medicines relative to essential medicines, with the exception of anti-depressant medications. This is in line with policy objectives to reduce moral hazard and is therefore demonstrative of the value of such policies. There are however some caveats. The copayment now stands at €2.50 per prescription item. The impact of this increase in copayment has yet to be assessed which is an obvious point for future research. Careful monitoring for adverse effects in socio-economically disadvantaged groups within the GMS population is also warranted. International evidence can be applied to the Irish setting to aid in future decision making in this area, but not without placing it in the local context first. Patients accepted the introduction of the 50c charge, however did voice concerns over a rising price. The challenge for policymakers is to find the ‘optimal copayment’ – whereby moral hazard is decreased, but access to essential chronic disease medicines that provide advantages at the population level is not deterred. This evidence presented in this thesis will be utilisable for future policy-making in Ireland.

Application description and policy model in collaborative environment for sharing of information on epidemiological and clinical research data sets.

BACKGROUND: Sharing of epidemiological and clinical data sets among researchers is poor at best, in detriment of science and community at large. The purpose of this paper is therefore to (1) describe a novel Web application designed to share information on study data sets focusing on epidemiological clinical research in a collaborative environment and (2) create a policy model placing this collaborative environment into the current scientific social context. METHODOLOGY: The Database of Databases application was developed based on feedback from epidemiologists and clinical researchers requiring a Web-based platform that would allow for sharing of information about epidemiological and clinical study data sets in a collaborative environment. This platform should ensure that researchers can modify the information. A Model-based predictions of number of publications and funding resulting from combinations of different policy implementation strategies (for metadata and data sharing) were generated using System Dynamics modeling. PRINCIPAL FINDINGS: The application allows researchers to easily upload information about clinical study data sets, which is searchable and modifiable by other users in a wiki environment. All modifications are filtered by the database principal investigator in order to maintain quality control. The application has been extensively tested and currently contains 130 clinical study data sets from the United States, Australia, China and Singapore. Model results indicated that any policy implementation would be better than the current strategy, that metadata sharing is better than data-sharing, and that combined policies achieve the best results in terms of publications. CONCLUSIONS: Based on our empirical observations and resulting model, the social network environment surrounding the application can assist epidemiologists and clinical researchers contribute and search for metadata in a collaborative environment, thus potentially facilitating collaboration efforts among research communities distributed around the globe.

Impact of economic, regulatory, and patent policies on innovation in cancer chemoprevention.

Chemoprevention agents are an emerging new scientific area that holds out the promise of delaying or avoiding a number of common cancers. These new agents face significant scientific, regulatory, and economic barriers, however, which have limited investment in their research and development (R&D). These barriers include above-average clinical trial scales, lengthy time frames between discovery and Food and Drug Administration approval, liability risks (because they are given to healthy individuals), and a growing funding gap for early-stage candidates. The longer time frames and risks associated with chemoprevention also cause exclusivity time on core patents to be limited or subject to significant uncertainties. We conclude that chemoprevention uniquely challenges the structure of incentives embodied in the economic, regulatory, and patent policies for the biopharmaceutical industry. Many of these policy issues are illustrated by the recently Food and Drug Administration-approved preventive agents Gardasil and raloxifene. Our recommendations to increase R&D investment in chemoprevention agents include (a) increased data exclusivity times on new biological and chemical drugs to compensate for longer gestation periods and increasing R&D costs; chemoprevention is at the far end of the distribution in this regard; (b) policies such as early-stage research grants and clinical development tax credits targeted specifically to chemoprevention agents (these are policies that have been very successful in increasing R&D investment for orphan drugs); and (c) a no-fault liability insurance program like that currently in place for children's vaccines.

Environmental and technology policies for climate mitigation

We assess different policies for reducing carbon dioxide emissions and promoting innovation and diffusion of renewable energy. We evaluate the relative performance of policies according to incentives provided for emissions reduction, efficiency, and other outcomes. We also assess how the nature of technological progress through learning and research and development (R&D), and the degree of knowledge spillovers, affects the desirability of different policies. Due to knowledge spillovers, optimal policy involves a portfolio of different instruments targeted at emissions, learning, and R&D. Although the relative cost of individual policies in achieving reductions depends on parameter values and the emissions target, in a numerical application to the U.S. electricity sector, the ranking is roughly as follows: (1) emissions price, (2) emissions performance standard, (3) fossil power tax, (4) renewables share requirement, (5) renewables subsidy, and (6) R&D subsidy. Nonetheless, an optimal portfolio of policies achieves emissions reductions at a significantly lower cost than any single policy. © 2007 Elsevier Inc. All rights reserved.