Medical Research Charities Research Articles

Exploring the Interdependencies of Research Funders in the UK

Investment in medical research is vital to the continuing improvement of the UK's health and wealth. It is through research that we expand our understanding of disease and develop new treatments for patients. Medical research charities currently contribute over £1 billion annually to medical research in the UK, of which over £350 million is provided by Cancer Research UK. Many charities, including Cancer Research UK, receive no government funding for their research activity. Cancer Research UK is engaged in a programme of work in order to better understand the medical research funding environment and demonstrate the importance of sustained investment. A key part of that is the Office of Health Economics‟ (OHE) 2011 report “Exploring the interdependency between public and charitable medical research”. This study found that there are substantial benefits, both financial and qualitative, from the existence of a variety of funders and that reductions in the level of government financial support for medical research are likely to have broader negative effects. This contributed to other evidence which found that the activities and funding of the charity, public and private sectors respectively are complementary, i.e. mutually reinforcing, rather than duplicative or merely substituting for one another. “Exploring the interdependencies of research funders in the UK” by the Office of Health Economics (OHE) and SPRU: Science and Technology Policy Research at the University of Sussex, represents a continued effort to build the evidence base around the funding of medical research. This report uncovers the extent to which funders of cancer research are interdependent, nationally and internationally. Key figures show that two thirds of publications acknowledging external support have relied on multiple funders, while just under half benefited from overseas funding, and almost a fifth are also supported by industry. In addition the analysis shows that the general public would not want tax funding of cancer research to be reduced, but would not donate enough to charities to compensate for any such reduction.

Sixteen Years of the Roche Organ Transplantation Research Foundation

Sixteen Years of the Roche Organ Transplantation Research Foundation

AM last page: funding of academic research in clinical medicine in the United Kingdom.

All medical schools and teaching hospitals in the United Kingdom – England, Scotland, Wales, and Northern Ireland – operate as academic health centers (AHCs) under an “unlinked partners” model, characterized by minimal structural integration. Despite a need for high functional integration, UK medical schools do not own or govern teaching hospitals and faculty practice plans (as in US and Canadian AHCs); thus, UK medical schools are unable to cross-subsidize research and education from patient care revenues. Instead, they must fully fund research through competition in three main funding sectors: government and its agencies, medical research charities (philanthropic foundations), and the pharmaceutical and medical device industries. Recent years have seen a growth in funding for UK clinical research; an increased share of funding by government; and continuing concentration of funding in the “golden triangle” formed by Cambridge, London, and Oxford. AM Last Page: Funding of Academic Research in Clinical Medicine in the United Kingdom Pavel V. Ovseiko, DPhil, senior research fellow in health policy and management, University of Oxford, Stephen M. Davies, MSc, doctoral student, London School of Hygiene and Tropical Medicine, and Alastair M. Buchan, MD, DSc, dean of medicine, University of Oxford

Medical research charities encourage patients to share data

Medical research charities encourage patients to share data

Medical research charities and open access

ABSTRACTThis paper provides an analysis of the attitudes and activities of UK medical research charities in relation to open access (OA). Both quantitative and qualitative data are presented derived from a recent survey of charities covering areas such as policy development, funding arrangements, and business process design for OA. Positions on key issues including green and gold OA, funding article‐processing charges (APCs), and publication licences are assessed. Modelling of potential APCs as a percentage of overall annual research spend is undertaken to show possible costs of a charged‐for gold system. Medical research charities clearly regard OA as important and some see it as an opportunity to further their mission. However, many expressed significant concerns particularly about the costs and expertise required to support OA. Further co‐ordination of policy development and action across the sector and with other stakeholders is recommended in order to help ensure optimal implementation of OA.

SAT0568 Evaluating the Perceptions and Barriers towards Clinical Research in Rheumatology Patients

BackgroundAdvances in the rheumatology treatments rely on recruitment and retention of patients to clinical trials. National surveys reflective of the UK population by the National Institute of Health Research and...

Conducting retrospective impact analysis to inform a medical research charity's funding strategies: the case of Asthma UK.

BackgroundDebate is intensifying about how to assess the full range of impacts from medical research. Complexity increases when assessing the diverse funding streams of funders such as Asthma UK, a charitable patient organisation supporting medical research to benefit people with asthma. This paper aims to describe the various impacts identified from a range of Asthma UK research, and explore how Asthma UK utilised the characteristics of successful funding approaches to inform future research strategies.MethodsWe adapted the Payback Framework, using it both in a survey and to help structure interviews, documentary analysis, and case studies. We sent surveys to 153 lead researchers of projects, plus 10 past research fellows, and also conducted 14 detailed case studies. These covered nine projects and two fellowships, in addition to the innovative case studies on the professorial chairs (funded since 1988) and the MRC-Asthma UK Centre in Allergic Mechanisms of Asthma (the ‘Centre’) which together facilitated a comprehensive analysis of the whole funding portfolio. We organised each case study to capture whatever academic and wider societal impacts (or payback) might have arisen given the diverse timescales, size of funding involved, and extent to which Asthma UK funding contributed to the impacts.ResultsProjects recorded an average of four peer-reviewed journal articles. Together the chairs reported over 500 papers. All streams of funding attracted follow-on funding. Each of the various categories of societal impacts arose from only a minority of individual projects and fellowships. Some of the research portfolio is influencing asthma-related clinical guidelines, and some contributing to product development. The latter includes potentially major breakthroughs in asthma therapies (in immunotherapy, and new inhaled drugs) trialled by university spin-out companies. Such research-informed guidelines and medicines can, in turn, contribute to health improvements. The role of the chairs and the pioneering collaborative Centre is shown as being particularly important.ConclusionsWe systematically demonstrate that all types of Asthma UK’s research funding assessed are making impacts at different levels, but the main societal impacts from projects and fellowships come from a minority of those funded. Asthma UK used the study’s findings, especially in relation to the Centre, to inform research funding strategies to promote the achievement of impact.

It’s plain and simple: transparency is good for science and in the public interest

In the past couple of years, there has been a growing focus on the need to make scientific output accessible to a greater number of people, especially in the field of clinical research. The public are being urged to become more well-informed and to ask their doctors about taking part in clinical trials.A key finding of a report from the Association of Medical Research Charities was that all published scientific papers would benefit from having a section in plain English. Researchers running a clinical trial are expected to provide a summary of their intended research at various stages of the research process. However, there is evidence that existing summaries are of variable length and quality and not always in plain English.As a result, the National Institute for Health Research (NIHR) commissioned a review of the guidance that is available to researchers. However, recent initiatives demonstrate that there are still a number of challenges in making current research both accessible and understandable by prospective participants.BioMed Central also has a number of ongoing initiatives involving trial registration services and journals.

Assessing research impact in academic clinical medicine: a study using Research Excellence Framework pilot impact indicators.

BackgroundFunders of medical research the world over are increasingly seeking, in research assessment, to complement traditional output measures of scientific publications with more outcome-based indicators of societal and economic impact. In the United Kingdom, the Higher Education Funding Council for England (HEFCE) developed proposals for the Research Excellence Framework (REF) to allocate public research funding to higher education institutions, inter alia, on the basis of the social and economic impact of their research. In 2010, it conducted a pilot exercise to test these proposals and refine impact indicators and criteria.MethodsThe impact indicators proposed in the 2010 REF impact pilot exercise are critically reviewed and appraised using insights from the relevant literature and empirical data collected for the University of Oxford’s REF pilot submission in clinical medicine. The empirical data were gathered from existing administrative sources and an online administrative survey carried out by the university’s Medical Sciences Division among 289 clinical medicine faculty members (48.1% response rate).ResultsThe feasibility and scope of measuring research impact in clinical medicine in a given university are assessed. Twenty impact indicators from seven categories proposed by HEFCE are presented; their strengths and limitations are discussed using insights from the relevant biomedical and research policy literature.ConclusionsWhile the 2010 pilot exercise has confirmed that the majority of the proposed indicators have some validity, there are significant challenges in operationalising and measuring these indicators reliably, as well as in comparing evidence of research impact across different cases in a standardised manner. It is suggested that the public funding agencies, medical research charities, universities, and the wider medical research community work together to develop more robust methodologies for capturing and describing impact, including more valid and reliable impact indicators.

Fight for Sight: Advancing the Treatment and Prevention of Eye Disease

Fight for Sight was founded in 1965 by Dr. Norman Ashton, C.B.E., director of pathology at the University College London (UCL) Institute of Ophthalmology and a world leader in research into eye diseases. In the same year, the Prevention of Blindness Research Fund (which later became the British Eye Research Foundation) was establishedwith funds raised by the Royal Eye Hospital League of Friends. Fight for Sight, as it exists today, evolved through amerger of Fight for Sight and the British Eye Research Foundation in 2005. This merger created the largest national charity dedicated to funding eye research in the U.K. The charity’s aim is to fund research that increases knowledge, which leads to prevention, cures, and improved treatments for eye diseases and offers a better quality of life for patients. The eye diseases that we are addressing include a wide range of maladies, from age-relatedmacular degeneration and glaucoma to cataract, diabetic retinopathy, corneal eye disease, and trachoma. We also are studying various inherited eye diseases and the causes of childhood blindness. Fight for Sight-funded researchers are based at academic institutions and hospitals across the U.K. and may be conducting research either in the U.K. or overseas. Each year, the charity receives more than 100 applications for funding, but we are able to fund only 15%–20% of these applications. To decide which applications to fund, Fight for Sight undertakes a rigorous process of peer review; applications are assessed by international leaders in the relevant fields and by our own scientific panel. This process helps ensure that the research funded is of the highest standard and that applications are assessed in the context of other research being undertaken worldwide. As a member of the Association of Medical Research Charities (AMRC), the peer review process complies with AMRC guidelines for best practice. In the fiscal year that ended March 31, 2011, the charity’s total income amounted to about U.S. $7.47 million (£4.8 million), and the charity committed more than U.S. $5.3 million (£3.4 million) of this to new research grants. Fight for Sight is dependent on voluntary donations and actively raises money from a variety of sources, including grant-making trusts and companies, legacies, sponsored and regional events, and individual donations.

Why patients and clinicians should set priorities for cardiac researchers

British Journal of Cardiac NursingVol. 7, No. 2 CommentWhy patients and clinicians should set priorities for cardiac researchersSophie Petit-ZemanSophie Petit-ZemanSearch for more papers by this authorSophie Petit-ZemanPublished Online:27 Sep 2013https://doi.org/10.12968/bjca.2012.7.2.95AboutSectionsView articleView Full TextPDF/EPUB ToolsAdd to favoritesDownload CitationsTrack CitationsPermissions ShareShare onFacebookTwitterLinked InEmail View article References Chalmers I (1995) What do I want from health research and researchers when I am a patient? BMJ 310: 1315–1315 Crossref, Google ScholarChalmers I (2003) The James Lind Initiative. J R Soc Med 96: 575–575 Crossref, Google ScholarLind J (1753) A Treatise of the Scurvy. In Three Parts. Printed by Sands, Murray and Cochran for A Kincaid and A Donaldson, Edinburgh. Google ScholarMedical Research Council (2003) Clinical Trials for Tomorrow. MRC, London. Google ScholarPartridge N, Scadding J (2004) The James Lind Alliance: patients and clinicians should jointly identify their priorities for clinical trials. Lancet 364: 1923–1923 Crossref, Google ScholarPetit-Zeman S (2005) Lunch with the Lancet: Lester Firkins. Lancet 365: 1223 Crossref, Google ScholarStewart R, Oliver S (2008) A Systematic Map of Studies of Patients' and Clinicians' Research Priorities. James Lind Alliance, Oxford Google ScholarTallon D, Chard J, Dieppe P (2000) Relation between agendas of the research community and the research consumer. Lancet 355: 2037–2037 Crossref, Google ScholarWelfare M (2007) ‘Researchers should ignore patients’. Presentation at ‘Should Patients tell Researchers what to do? If so, how?’—meeting organised jointly by the James Lind Alliance and the Association of Medical Research Charities at The Wellcome Trust, London 17 September. http://www.lindalliance.org/JLA_AMRC_Event_Sept2007.asp (accessed 20 January 2012) Google Scholar FiguresReferencesRelatedDetailsCited ByPartnering With Patients in the Development and Lifecycle of Medicines: A Call for Action30 December 2015 | Therapeutic Innovation & Regulatory Science, Vol. 49, No. 6 1 February 2012Volume 7Issue 2ISSN (online): 2052-2207 Metrics History Published online 27 September 2013 Published in print 1 February 2012 Information© MA Healthcare LimitedPDF download

Straight talk with...Phil Willis

Late last year, Phil Willis stepped into the role of chairman of the Association of Medical Research Charities (AMRC) in the UK. He spoke with Asher Mullard about his plans to drive the medical research sector forward through tough economic times. When Phil Willis, a former school headmaster turned politician, landed a seat on the UK government's Science and Technology Committee in 2005, he found a way to make his mark as a nonscientist by obsessively asking for evidence from researchers. Now in the House of Lords, he continues to advise the government on biomedicine, among other topics. Willis recently found a new cause to champion as well, the Association of Medical Research Charities (AMRC). The AMRC represents 124 UK nonprofits that collectively spend £1 billion ($1.6 billion) a year on biomedical research, around one third of the total amount of money put toward health research in the country. As Willis stepped into his role as chairman of the association in November, he spoke with Asher Mullard about his plans to drive the sector forward through tough economic times.

“Natural Ground” for Medical Research Charities

Improving patient and public involvement in research is now an established goal of UK science policy. With many medical research charities often representing distinct patient groups as part of their broader charitable role, or having strong patient groups allied to them, patient and public involvement would seem "natural ground" for them. The Association of Medical Research Charities Natural Ground project brought together a learning set of staff and volunteers from member organizations to discuss current activities and share best practice. This article identifies 5 areas where medical research charities involve patients and discusses some of the methods used.

A key piece of the jigsaw for improving world health

access is good for science, the research community and mankind. Sir John Sulston, biologist and Nobel Laureate Impaired access to research information in health-related fields is not solely the preserve of developing countries but it is hugely exacerbated in poorer regions of the world. While these regions bear the brunt of the world's health problems, only 10% of health research effort goes into these areas (referred to as the 10/90 gap). (1) If we are going to achieve what the World Conference on Science held by UNESCO and the International Council for Science in 1999 termed the true orienting of scientific progress towards meeting the needs of humankind, then we must improve the research effort on the health problems that afflict the greatest part of the world's population. That cannot happen until research communication is optimized: at the turn of the new millennium more than half of research-based institutions in lower-income countries had no current subscriptions at all to international research journals. (2) Open access changes this. It permanently delivers free research information to any would-be user. The security of long-term free access is relevant here because other programmes that purport to deliver health research information on an equitable basis to the developing world are not guaranteed for the long-term. (3) Access may be discontinued because new rules have been applied. No health research or practitioner programmes can operate properly under such circumstances. Open access literature, by definition, is freely available on a permanent basis. Some distinguished examples of open access journals in the health sciences are PLoS Neglected Tropical Diseases and BioMed Central's Malaria Journal, which have the top two impact factor scores in the tropical medicine category of Thomson Reuter's Journal Citation Reports service, and Environmental Health Perspectives, the journal of the National Institute of Environmental Health Sciences in the United States of America (USA), which has recently recommitted itself to an open access policy. Open access journals are just one route to open access for health research literature. Open access repositories or archives are perhaps even more important, collecting as they do the outputs from research organizations around the world. Currently over 1400 in number, they have been established at an average of one per day for the past 3 to 4 years. Two of the largest, PubMed Central at the National Institute of Health, USA, (4) and United Kingdom PubMed Central (5) (run by a consortium of medical research charities and the British Library), presently provide free access to 1. …

Medical research charities brace for economic impact

Medical research charities brace for economic impact

Reporting of clinical trials: a review of research funders' guidelines.

BackgroundRandomised controlled trials (RCTs) represent the gold standard methodological design to evaluate the effectiveness of an intervention in humans but they are subject to bias, including study publication bias and outcome reporting bias. National and international organisations and charities give recommendations for good research practice in relation to RCTs but to date no review of these guidelines has been undertaken with respect to reporting bias.MethodsNational and international organisations and UK based charities listed on the Association for Medical Research Charities website were contacted in 2007; they were considered eligible for this review if they funded RCTs. Guidelines were obtained and assessed in relation to what was written about trial registration, protocol adherence and trial publication. It was also noted whether any monitoring against these guidelines was undertaken. This information was necessary to discover how much guidance researchers are given on the publication of results, in order to prevent study publication bias and outcome reporting bias.ResultsSeventeen organisations and 56 charities were eligible of 140 surveyed for this review, although there was no response from 12. Trial registration, protocol adherence, trial publication and monitoring against the guidelines were often explicitly discussed or implicitly referred too. However, only eleven of these organisations or charities mentioned the publication of negative as well as positive outcomes and just three of the organisations specifically stated that the statistical analysis plan should be strictly adhered to and all changes should be reported.ConclusionOur review indicates that there is a need to provide more detailed guidance for those conducting and reporting clinical trials to help prevent the selective reporting of results. Statements found in the guidelines generally refer to publication bias rather than outcome reporting bias. Current guidelines need to be updated and include the statement that all primary and secondary outcomes prespecified in the protocol should be fully reported and should not be selected for inclusion in the final report based on their results.

Understanding the Economic and Social Effects of Academic Clinical Partnerships

Partnerships between medical schools and their clinical associates, which we describe in this article as academic clinical partnerships (ACPs), are powerful economic and social actors through their roles as major employers and procurers of goods and services. A broad spectrum of effects extending beyond the tripartite mission shapes the social contract between ACPs and the communities they serve. The authors present a model for identifying and measuring effects across this spectrum and illustrate the model's application with reference to specific case studies set in the United Kingdom. This model categorizes effects into five different domains: economic, human capital, social capital, knowledge, and place. These different effects express themselves along a spatial scale that varies from the very local to the global. The authors describe the theoretical background for each domain, as well as the methods required to identify and measure effects. These methods range from a quantitative economic impact analysis using extended input-output models to qualitative methods to capture social capital and place effects. The authors demonstrate how leaders in academic medicine can use the model to build a holistic picture of the societal effects of ACPs. Evidence of impact is of value to ACP leaders in engaging with both national and local stakeholders, and the approach is likely transferable to different countries.

Pounds for Paws

Britain's largest medical research charity hopes to help veterinarians keep up with the latest developments with a $22.5 million initiative to recruit them into research. In 2004, the U.K. government provided $43 million to boost the number of scientists trained to tackle challenges such as foot-and-mouth disease. But that program ends in 2009. Last week, the Wellcome Trust made awards to seven U.K. veterinary schools for efforts including summer courses and postdoctoral training. “This is an absolutely vital development,” says Christopher Stokes of the University of Bristol, one of the recipient universities.

The Bernal Lecture 2004 Are low-frequency electromagnetic fields a health hazard?

Electric power is an essential commodity of the developed world, and is critical to the continuing progress of our technology-based society, as well as to the growth of less privileged societies. In contrast to its overwhelming benefits, there is a suspicion that the magnetic component of the electromagnetic fields (EMFs) associated with power distribution and electrical appliances has adverse health effects, especially a small increased incidence of childhood leukaemia. The possibility that environmental EMFs represent a health hazard has serious economic implications for government, the electricity industry and society, as well as raising several profound scientific challenges, including, in particular, biophysical mechanisms, experimental replication and scientific uncertainty. These challenges are explored in relation to the experiences of the EMF Biological Research Trust, a UK medical research charity which funds basic research on the biological effects of extremely low-frequency electromagnetic fields (ELF-EMFs). As judged from these experiences, at the present time there is no compelling experimental evidence that environmental ELF-EMFs induce biological responses.

Funding the Way to Open Access

Imagine this scenario. You're the director of one of the world's largest medical research charities, and you receive notification from one of your funded investigators in Africa reporting some exciting progress toward the development of a vaccine for malaria. The work has just been published, so you log onto the Web to do a quick keyword search, and a link to the article is brought up on your screen.