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Govt., Academic and Industry Reports

The Management and Organisation of Clinical Trials
This report presents the findings from a 2-year EPSRC-funded study which was undertaken to systematically explore the challenges of organising and managing different models of clinical research in the UK. Published in December 2009, the report covers Regulation and Governance, Knowledge and Expertise, Networks and Strategy, and Incentives and Drivers. In our opinion, the observations made remain true in 2011

ICREL was a one-year project financed by the European 7th Framework Programme. Under EFGCP’s coordination, ECRIN, EORTC, as well as the Hospital ClĂ­nic of Barcelona and the Ethics Committee of the Medical University of Vienna collaborated in this project. Its aim was to measure and analyse the direct and indirect impact of the Clinical Trials Directive2001/20/EC and related legislations in the EU on all categories of clinical research and on the different stakeholders: commercial and non-commercial sponsors, ethics committees and competent authorities.

A report of research patterns in life sciences revealing that researcher practices diverge from policies promoted by funders and information service providers

Royal Academy of Engineering (2010).Privacy and prejudice: young people’s views on the development and use of electronic patient records.
This report presents the findings of the public attitudes research project that was embedded within the wider engagement programme to explore young people’s views on the development of an EPR system in the UK and its use in medical research. Some information was also collected on adult views. The research was conducted using electronic polling, focus groups, a two-day deliberative conference and a community researchers activity

This report presents the findings of a programme of research carried out among the general public by Ipsos MORI on behalf of the Medical Research Council (MRC).

The General Medical Council commissioned Cambridge Health Informatics Limited to conduct a survey of the available literature on public and professional attitudes to privacy in healthcare information. This report covers the general environment considered, the methodology used, the results of the survey of the literature, the outcomes of the materials reviewed in depth, and the conclusions that the authors believe can be drawn together with limitations and cautions about the results and reliability of the materials

Response to review carried out by Dr Mark Walport of the Wellcome Trust and the Information commissioner, Richard Thomas

Discussions with the MRC’s Council, Strategy Board, its research boards and overview groups have reflected on how the MRC can be best positioned to deliver its mission to policy-makers, the general public and the healthcare, life science, devices and medical engineering industries. This strategy defines the MRC’s distinctive role in contributing to faster and more effective ways for medical research to flourish, at all stages – from working to understand the fundamental science prior to having specific health questions in mind, to tackling some of the most pressing health issues facing society

The Health Survey for England (HSE) is a series of annual surveys designed to measure health and health related behaviours in adults and children, in England.

Potentially useful research data are at risk of inaccessibility in the long-term, and there is no consistent approach to assessing and assuring the scholarly content or usability of the datasets being published today. Realising the full potential of data requires further progress in data management policies and practice.

Reports from the Academy of Medical Sciences:
"In anticipation of the next general election, the Academy of Medical Sciences has written to the leaders of the major political parties to outline its vision for UK medical science. The vision highlights how groundbreaking advances in medical science offer the next UK Government an unprecedented opportunity to reinvigorate the economy, to enhance the productivity of the NHS and to make public services more cost-effective."

"A new pathway for the regulation and governance of health research' was published in January 2011. The report was prepared by a working group, chaired by Professor Sir Michael Rawlins FMedSci, convened in response to an invitation from Government to review the regulation and governance of UK health research involving human participants, their tissue or their data."

"In July 2010, the Academy produced a briefing at the request of the Minister of State for Universities and Science, David Willetts MP, which outlined the health and wealth benefits of investing in biomedical research."

"Medical research using patient data has had a long and successful history of providing vital knowledge on the causes of disease and the effectiveness of treatments. The unique features of the UK National Health Service and the advent of large patient databases present unparalleled opportunities for enhancing such research. However, it appears that advances in this field are increasingly inhibited by unnecessary constraints on the use of patient data. "

Reports and papers from the Department of Health and NHS:
"The NHS White Paper, Equity and excellence: Liberating the NHS, sets out the Government's long-term vision for the future of the NHS.  The vision builds on the core values and principles of the NHS - a comprehensive service, available to all, free at the point of use, based on need, not ability to pay. "

"An Information Revolution is one of a series of documents for consultation published subsequent to the White Paper Equity and Excellence: Liberating the NHS.  It is part of the Government’s agenda to create a revolution for patients - “putting patients first” - giving people moreinformation and control and greater choice about their care.  The information revolution is about transforming the way information is accessed, collected, analysed, and used so that people are at the heart of health and adult social care services."

"The report of the review, which follows the publication of the White Paper, Equity and excellence: Liberating the NHS, sets out our proposals for ALBs in the health and social care sector. These proposals form part of the cross-Government strategy to increase accountability and transparency, and to reduce the number and cost of quangos.

NHS Connecting for Health (2009). Using patient information in the NHS.
In the summer of 2008 the Government published its wide-ranging review of the use of information across the NHS, this is called the Informatics Review.  As part of the Review a deliberative event with members of the public was conducted in February 2008.  At this event a commitment was made to keep the public informed of progress and future plans.  As a result a consultative event with the public was held in February 2009. This report summarises the outcomes of that event