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1.  The Research Council System and the Politics of Medical and Agricultural Research for the British Colonial Empire, 1940–52 
Medical History  2013;57(3):338-358.
Historical accounts of colonial science and medicine have failed to engage with the Colonial Office’s shift in focus towards the support of research after 1940. A large new fund was created in 1940 to expand activities in the colonies described as fundamental research. With this new funding came a qualitative shift in the type of personnel and activity sought for colonial development and, as a result, a diverse group of medical and technical officers existed in Britain’s colonies by the 1950s. The fact that such variety existed amongst British officers in terms of their qualifications, institutional locations and also their relationships with colonial and metropolitan governments makes the use of the term ‘expert’ in much existing historical scholarship on scientific and medical aspects of empire problematic. This article will consider how the Colonial Office achieved this expansion of research activities and personnel after 1940. Specifically, it will focus on the reasons officials sought to engage individuals drawn from the British research councils to administer this work and the consequences of their involvement for the new apparatus established for colonial research after 1940. An understanding of the implications of the application of the research council system to the Colonial Empire requires engagement with the ideology promoted by the Agricultural Research Council (ARC) and Medical Research Council (MRC) which placed emphasis on the distinct and higher status of fundamental research and which privileged freedom for researchers.
doi:10.1017/mdh.2013.17
PMCID: PMC3865944  PMID: 24069883
Medical Research Council; Agricultural Research Council; Colonial Office; 1940 CDW Act; Colonial Medical Research Council; East Africa
2.  Prescriptions for medical research. I--Management within the Medical Research Council. 
BMJ : British Medical Journal  1993;306(6893):1668-1672.
In their submission to the government in advance of the white paper on science policy in the United Kingdom the Medical Research Council commends the MRC's own approach to managing directly funded research. But a series of semi-structured interviews with the directors of some of the MRC's units suggests a gap between the MRC's model of managed research and the reality. Although such units are theoretically managed from MRC head office (and units are charged an overhead for this), in practice each unit runs its own affairs. Between major reviews average contact time with the head office contact person is seven hours a year. The first paper argues that a purchaser-provider split would recognise the benefits of decentralisation and allow units to bid for research funds from several sources, the successful ones guaranteeing their survival through a rolling series of research programmes. The second paper criticises the MRC's cumbersome peer review system. Reliance on outside experts atrophies the scientific skills of head office staff and builds delays into decision making. A purchaser-provider model would allow the head office scientific staff to act like commercial research and development managers, commissioning research, and using the outcome, rather than peer review, as a criterion for continued funding.
PMCID: PMC1678049  PMID: 8324441
3.  Why the Medical Research Council refused Robert Edwards and Patrick Steptoe support for research on human conception in 1971 
Human Reproduction (Oxford, England)  2010;25(9):2157-2174.
BACKGROUND
In 1971, Cambridge physiologist Robert Edwards and Oldham gynaecologist Patrick Steptoe applied to the UK Medical Research Council (MRC) for long-term support for a programme of scientific and clinical ‘Studies on Human Reproduction’. The MRC, then the major British funder of medical research, declined support on ethical grounds and maintained this policy throughout the 1970s. The work continued with private money, leading to the birth of Louise Brown in 1978 and transforming research in obstetrics, gynaecology and human embryology.
METHODS
The MRC decision has been criticized, but the processes by which it was reached have yet to be explored. Here, we present an archive-based analysis of the MRC decision.
RESULTS
We find evidence of initial support for Edwards and Steptoe, including from within the MRC, which invited the applicants to join its new directly funded Clinical Research Centre at Northwick Park Hospital. They declined the offer, preferring long-term grant support at the University of Cambridge, and so exposed the project to competitive funding mode. Referees and the Clinical Research Board saw the institutional set-up in Cambridge as problematic with respect to clinical facilities and patient management; gave infertility a low priority compared with population control; assessed interventions as purely experimental rather than potential treatments, and so set the bar for safety high; feared fatal abnormalities and so wanted primate experiments first; and were antagonized by the applicants’ high media profile. The rejection set MRC policy on IVF for 8 years, until, after the birth of just two healthy babies, the Council rapidly converted to enthusiastic support.
CONCLUSIONS
This analysis enriches our view of a crucial decision, highlights institutional opportunities and constraints and provides insight into the then dominant attitudes of reproductive scientists and clinicians towards human conception research.
doi:10.1093/humrep/deq155
PMCID: PMC2922998  PMID: 20657027
Robert Edwards; funding; history; human conception; IVF; Medical Research Council; Patrick Steptoe
4.  Views of the Medical Research Council on the Green Paper “A Framework for Government Research and Development”* 
British Medical Journal  1972;1(5796):357-360.
The Council recognize the research needs of Government departments and wish to play their part in meeting them (paragraph 4). The Council have an important role in the national research effort (paragraph 5). Coherent policies in medical research are essential for the best use of resources (paragraph 6). The customer/contractor relationship is inappropriate to most biomedical research (paragraph 8). Transfer of 25% of the Council's budget to departments would, in the long term, hinder the advance of medical practice (paragraph 9). Short-term consequences for universities would be severe (paragraph 10). It would be uneconomical for departments to duplicate machinery for making detailed research policy choices (paragraph 11). A better partnership that will meet the needs of government should be developed between departments and the Council (paragraph 12). Respective responsibilities of departments and the Council in research should be redefined (paragraph 12a). Government funds for medical and related research should be reapportioned in relation to responsibilities (paragraph 12b). A basis is proposed for future partnership with departments, which is not dependent on financial sanctions (paragraph 12c). The Council favour establishment of a board similar to that proposed in the Dainton report (Annex 2).
PMCID: PMC1787266  PMID: 5008667
5.  What happens to clinical training fellows? A retrospective study of the 20 years outcome of a Medical Research Council UK cohort 
BMJ Open  2012;2(4):e001792.
Objectives
The Clinical Research Training Fellowship (CRTF) allows up to 3 years support for clinically qualified candidates to undertake specialised or further research training in biomedical sciences. CRTFs are perceived as a crucial step in the career development and progression of Clinical Academics but there are no published data to support this notion. We conducted an electronic survey of a large cohort of Medical Research Council (MRC) CRTFs followed for up to 20 years.
Design
Retrospective analysis of CRTF outcome data held with the MRC, UK.
Participants
Two cohorts comprising 40 CRFTs awarded by the MRC in the year 1991 and 299 MRC CRTFs who were awarded a fellowship between 1993 and 2003.
Results
The MRC CRTF scheme built capacity in clinical academia across the UK with 40% of CRTFs progressing to a University professorship. Importantly, the CRTF scheme is also providing NHS consultants who remain research active.
Conclusions
This is the first analysis of outcome of CRTFs in the UK and provides robust evidence of the importance of this capacity building mode of funding to underpin research excellence at the University–NHS interface.
doi:10.1136/bmjopen-2012-001792
PMCID: PMC3432844  PMID: 22936819
6.  The UPBEAT depression and coronary heart disease programme: using the UK medical research council framework to design a nurse-led complex intervention for use in primary care 
BMC Family Practice  2012;13:119.
Background
Depression is common in coronary heart disease (CHD) and increases the incidence of coronary symptoms and death in CHD patients. Interventions feasible for use in primary care are needed to improve both mood and cardiac outcomes. The UPBEAT-UK programme of research has been funded by the NHS National Institute for Health Research (NIHR) to explore the relationship between CHD and depression and to develop a new intervention for use in primary care.
Methods
Using the Medical Research Council (MRC) guidelines for developing and evaluating complex interventions, we conducted a systematic review and qualitative research to develop a primary care-based nurse-led intervention to improve mood and cardiac outcomes in patients with CHD and depression. Iterative literature review was used to synthesise our empirical work and to identify evidence and theory to inform the intervention.
Results
We developed a primary care-based nurse-led personalised care intervention which utilises elements of case management to promote self management. Following biopsychosocial assessment, a personalised care plan is devised. Nurses trained in behaviour change techniques facilitate patients to address the problems important to them. Identification and utilisation of existing resources is promoted. Nurse time is conserved through telephone follow up.
Conclusions
Application of the MRC framework for complex interventions has allowed us to develop an evidence based intervention informed by patient and clinician preferences and established theory. The feasibility and acceptability of this intervention is now being tested further in an exploratory trial.
doi:10.1186/1471-2296-13-119
PMCID: PMC3538052  PMID: 23234253
Complex intervention; Personalised care; Coronary heart disease; Depression; Primary care
7.  Epidemiological Pathology of Dementia: Attributable-Risks at Death in the Medical Research Council Cognitive Function and Ageing Study 
PLoS Medicine  2009;6(11):e1000180.
Researchers from the Medical Research Council Cognitive Function and Ageing Neuropathology Study carry out an analysis of brain pathologies contributing to dementia, within a cohort of elderly individuals in the UK who agreed to brain donation.
Background
Dementia drug development aims to modulate pathological processes that cause clinical syndromes. Population data (epidemiological neuropathology) will help to model and predict the potential impact of such therapies on dementia burden in older people. Presently this can only be explored through post mortem findings. We report the attributable risks (ARs) for dementia at death for common age-related degenerative and vascular pathologies, and other factors, in the MRC Cognitive Function and Ageing Study (MRC CFAS).
Methods and Findings
A multicentre, prospective, longitudinal study of older people in the UK was linked to a brain donation programme. Neuropathology of 456 consecutive brain donations assessed degenerative and vascular pathologies. Logistic regression modelling, with bootstrapping and sensitivity analyses, was used to estimate AR at death for dementia for specific pathologies and other factors. The main contributors to AR at death for dementia in MRC CFAS were age (18%), small brain (12%), neocortical neuritic plaques (8%) and neurofibrillary tangles (11%), small vessel disease (12%), multiple vascular pathologies (9%), and hippocampal atrophy (10%). Other significant factors include cerebral amyloid angiopathy (7%) and Lewy bodies (3%).
Conclusions
Such AR estimates cannot be derived from the living population; rather they estimate the relative contribution of specific pathologies to dementia at death. We found that multiple pathologies determine the overall burden of dementia. The impact of therapy targeted to a specific pathology may be profound when the dementia is relatively “pure,” but may be less impressive for the majority with mixed disease, and in terms of the population. These data justify a range of strategies, and combination therapies, to combat the degenerative and vascular determinants of cognitive decline and dementia.
Please see later in the article for the Editors' Summary
Editors' Summary
Background
Losing one's belongings and forgetting people's names is often a normal part of aging. But increasing forgetfulness can also be a sign of dementia, a group of symptoms caused by several disorders that affect the structure of the brain. The commonest form of dementia is Alzheimer disease. In this, protein clumps called plaques and neurofibrillary tangles form in the brain and cause its degeneration. Vascular dementia, in which problems with blood circulation deprive parts of the brain of oxygen, is also common. People with dementia have problems with two or more “cognitive” functions—thinking, language, memory, understanding, and judgment. As the disease progresses, they gradually lose their ability to deal with normal daily activities until they need total care, their personality often changes, and they may become agitated or aggressive. Dementia is rare before the age of 65 years but about a quarter of people over 85 years old have dementia. Because more people live to a ripe old age these days, the number of people with dementia is increasing. According to the latest estimates, about 35 million people now have dementia and by 2050, 115 million may have the disorder.
Why Was This Study Done?
There is no cure for dementia but many drugs designed to modulate specific abnormal (pathological) changes in the brain that can cause the symptoms of dementia are being developed. To assess the likely impact of these potentially expensive new therapies, experts need to know what proportion of dementia is associated with each type of brain pathology. Although some brain changes can be detected in living brains with techniques such as computed tomography brain scans, most brain changes can only be studied in brains taken from people after death (post mortem brains). In this study, which is part of the UK Medical Research Council Cognitive Function and Ageing Study (MRC CFAS), the researchers look for associations between dementia in elderly people and pathological changes in their post mortem brains and estimate the attributable-risk (AR) for dementia at death associated with specific pathological features in the brain. That is, they estimate the proportion of dementia directly attributable to each type of pathology.
What Did the Researchers Do and Find?
Nearly 20 years ago, the MRC CFAS interviewed more than 18,000 people aged 65 years or older recruited at six sites in England and Wales to determine their cognitive function and their ability to deal with daily activities. 20% of the participants, which included people with and without cognitive impairment, were then assessed in more detail and invited to donate their brains for post mortem examination. As of 2004, 456 individuals had donated their brains. The dementia status of these donors was established using data from their assessment interviews and death certificates, and from interviews with relatives and carers, and their brains were carefully examined for abnormal changes. The researchers then used statistical methods to estimate the AR for dementia at death associated with various abnormal brain changes. The main contributors to AR for dementia at death included age (18% of dementia at death was attributable to this factor), plaques (8%), and neurofibrillary tangles (11%) in a brain region called the neocortex, small blood vessel disease (12%), and multiple abnormal changes in blood vessels (9%).
What Do These Findings Mean?
These findings suggest that multiple abnormal brain changes determine the overall burden of dementia. Importantly, they also suggest that dementia is often associated with mixed pathological changes—many people with dementia had brain changes consistent with both Alzheimer disease and vascular dementia. Because people with dementia live for variable lengths of time during which the abnormal changes in their brain are likely to alter, it may be difficult to extrapolate these findings to living populations of elderly people. Furthermore, only a small percentage of the MRC CFAS participants have donated their brains so the findings of this study may not apply to the general population. Nevertheless, these findings suggest that the new therapies currently under development may do little to reduce the overall burden of dementia because most people's dementia involves multiple pathologies. Consequently, it may be necessary to develop a range of strategies and combination therapies to deal with the ongoing dementia epidemic.
Additional Information
Please access these Web sites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1000180.
The US National Institute on Aging provides information for patients and carers about forgetfulness and about Alzheimer disease (in English and Spanish)
The US National Institute of Neurological Disorders and Stroke provides information about dementia (in English and Spanish)
The UK National Health Service Choices Web site also provides detailed information for patients and their carers about dementia and about Alzheimer disease
MedlinePlus provides links to additional resources about dementia and Alzheimer disease (in English and Spanish)
More information about the UK Medical Research Council Cognitive Function and Ageing Study (MRC CFAS) is available
doi:10.1371/journal.pmed.1000180
PMCID: PMC2765638  PMID: 19901977
8.  The Registration of Medical Graduates from Eastern European Union Countries with the General Medical Council (GMC) and the Medical Council, Ireland. 
The Ulster Medical Journal  2013;82(2):71-74.
The purpose of this study was to identify the number of medical graduates registered with the General Medical Council (GMC) between 1990 and 2005, whose initial training was in Eastern Europe and who came from universities which have subsequently developed an “English Parallel” course and are now within the European Union (EU). A similar exercise was undertaken with graduates registered with the Medical Council, Ireland.
Between 1990 and 2005 one thousand six hundred and fourteen (1614) doctors, who had trained in the selected universities from Eastern Europe, registered with the General Medical Council (GMC) in the United Kingdom (Table 1). The Register of Medical Practitioners for Ireland as at 1st July 2005 was also scanned manually to identify graduates from these countries who were registered in Ireland. Sixty four such graduates were identified of whom 6 qualified before 1990 and 5 were in their internship year. The study suggests that since 2000 younger graduates who sought training in Central and Eastern Europe are returning to the UK shortly after graduation to register and start clinical training.
PMCID: PMC3756861  PMID: 24082282
9.  Homeopathy – what are the active ingredients? An exploratory study using the UK Medical Research Council's framework for the evaluation of complex interventions 
Background
Research in homeopathy has traditionally addressed itself to defining the effectiveness of homeopathic potencies in comparison to placebo medication. There is now increasing awareness that the homeopathic consultation is in itself a therapeutic intervention working independently or synergistically with the prescribed remedy. Our objective was to identify and evalute potential "active ingredients" of the homeopathic approach as a whole, in a prospective formal case series, which draws on actual consultation data, and is based on the MRC framework for the evaluation of complex interventions.
Methods
Following on from a theoretical review of how homeopathic care might mediate its effects, 18 patients were prospectively recruited to a case series based at Bristol Homeopathic Hospital. Patients, who lived with one of three index conditions, were interviewed before and after a five visit "package of care". All consultations were recorded and transcribed verbatim. Additional data, including generic and condition-specific questionnaires, artwork and "significant other" reports were collected. Textual data was subject to thematic analysis and triangulated with other sources.
Results
We judged that around one third of patients had experienced a major improvement in their health over the study period, a third had some improvement and a third had no improvement. Putative active ingredients included the patients' "openness to the mind-body connection", consultational empathy, in-depth enquiry into bodily complaints, disclosure, the remedy matching process and, potentially, the homeopathic remedies themselves.
Conclusion
This study has has identified, using primary consultation and other data, a range of factors that might account for the effectiveness of homeopathic care. Some of these, such as empathy, are non-specific. Others, such as the remedy matching process, are specific to homeopathy. These findings counsel against the use of placebo-controlled RCT designs in which both arms would potentially be receiving specific active ingredients. Future research in homeopathy should focus on pragmatic trials and seek to confirm or refute the therapeutic role of constructs such as patient "openness", disclosure and homeopathicity.
doi:10.1186/1472-6882-6-37
PMCID: PMC1676018  PMID: 17101037
10.  Alternative allergy and the General Medical Council. 
BMJ : British Medical Journal  1993;306(6870):122-124.
In July 1992 Dr Keith Mumby, a clinical ecologist, appeared before the professional conduct committee of the General Medical Council on five charges to do with his practice of clinical ecology. He was found guilty of two of the charges--touting for publicity and failing to give a patient adequate medical attention--and admonished. The GMC failed, however, to address the issue of the nature of Mumby's treatments--clinical ecology itself. This is based on the idea that some patients are unusually susceptible to their environment, the diagnosis and treatment are based on an unstandardised provocation-neutralisation test. A variety of medical bodies have failed to find scientific foundation for the technique. The GMC's policy on advertising services to patients is inconsistent, and in this case it has shown a regrettable reluctance to deal with the issue of treatments that are not scientifically validated.
Images
PMCID: PMC1676702  PMID: 8435610
11.  Late Gastrointestinal Toxicity After Dose-Escalated Conformal Radiotherapy for Early Prostate Cancer: Results From the UK Medical Research Council RT01 Trial (ISRCTN47772397) 
Purpose
In men with localized prostate cancer, dose-escalated conformal radiotherapy (CFRT) improves efficacy outcomes at the cost of increased toxicity. We present a detailed analysis to provide further information about the incidence and prevalence of late gastrointestinal side effects.
Methods and Materials
The UK Medical Research Council RT01 trial included 843 men with localized prostate cancer, who were treated for 6 months with neoadjuvant radiotherapy and were randomly assigned to either 64-Gy or 74-Gy CFRT. Toxicity was evaluated before CFRT and during long-term follow-up using Radiation Therapy Oncology Group (RTOG) grading, the Late Effects on Normal Tissue: Subjective, Objective, Management (LENT/SOM) scale, and Royal Marsden Hospital assessment scores. Patients regularly completed Functional Assessment of Cancer Therapy--Prostate (FACT-P) and University of California, Los Angeles, Prostate Cancer Index (UCLA-PCI) questionnaires.
Results
In the dose-escalated group, the hazard ratio (HR) for rectal bleeding (LENT/SOM grade ≥2) was 1.55 (95% CI, 1.17–2.04); for diarrhea (LENT/SOM grade ≥2), the HR was 1.79 (95% CI, 1.10–2.94); and for proctitis (RTOG grade ≥2), the HR was 1.64 (95% CI, 1.20–2.25). Compared to baseline scores, the prevalence of moderate and severe toxicities generally increased up to 3 years and than lessened. At 5 years, the cumulative incidence of patient-reported severe bowel problems was 6% vs. 8% (standard vs. escalated, respectively) and severe distress was 4% vs. 5%, respectively.
Conclusions
There is a statistically significant increased risk of various adverse gastrointestinal events with dose-escalated CFRT. This remains at clinically acceptable levels, and overall prevalence ultimately decreases with duration of follow-up.
doi:10.1016/j.ijrobp.2009.05.052
PMCID: PMC2937212  PMID: 19836155
Prostate cancer; Conformal radiotherapy; Dose escalation; Late gastrointestinal toxicity; Phase III trial
12.  A comparison of the incidence of the myelodysplastic syndrome and acute myeloid leukaemia following melphalan and cyclophosphamide treatment for myelomatosis. A report to the Medical Research Council's working party on leukaemia in adults. 
British Journal of Cancer  1987;55(5):523-529.
Twelve of 648 patients in the Medical Research Council's first two trials in myelomatosis have developed myelodysplasia or acute leukaemia. This corresponds to a 5-year actuarial prevalence of 3% and an 8-year prevalence of 10%. Patients were randomised to treatment with either melphalan or cyclophosphamide and the relative capabilities of these two drugs to cause these conditions were examined as a function of duration of treatment. A significant relationship with length of melphalan treatment was found but no relationship was observed for cyclophosphamide treatment. The amount of melphalan treatment given in various intervals before diagnosis of myelodysplasia or leukaemia was studied and it was found that the amount of treatment in the most recent 3-year period was the most important determinant of risk (P = 0.0001). It is estimated that the risk of haemopoietic neoplasia after 10 years of follow-up is about 3% for each year of melphalan treatment and that much of this risk will occur within three years of the last treatment.
PMCID: PMC2001731  PMID: 3300761
13.  Proximal renal tubular function in myelomatosis: observations in the fourth Medical Research Council trial. 
Journal of Clinical Pathology  1984;37(8):852-858.
Proximal renal tubular function was studied in 522 consecutive patients entered into the Medical Research Council's fourth myelomatosis trial. Assessment was made at presentation after a 48 h period of hydration but before administration of chemotherapy. The most common abnormalities in the urine other than light chain proteinuria were raised concentrations of the low molecular weight proteins alpha 1-microglobulin and alpha 1-acid glycoprotein. These were usually accompanied by increases in urinary beta-N-acetyl-D-glucosaminidase concentrations. The concentration of these substances in the urine directly correlated with urinary free light chain output. This tubular proteinuria was seen whether or not patients had impaired glomerular function, as assessed by a rise in serum creatinine concentration. Urinary concentrations of retinol binding protein, however, were generally increased only when serum creatinine concentrations were raised. This applied even when there were high concentrations of light chains, alpha 1-microglobulin, alpha 1-acid glycoprotein, and beta-N-acetyl-D-glucosaminidase in the urine. There is therefore a selective tubular proteinuria in myelomatosis which is seen in almost all patients with urinary light chain values greater than 1 u/l. This proteinuria is generally reversible, when light chains no longer appear in the urine. Patients whose serum creatinine was greater than 200 mumol/l, however, had increased urinary output of retinol binding protein in addition to increased excretion of alpha 1-microglobulin, alpha 1-acid glycoprotein, and beta-N-acetyl-D-glucosaminidase. Tubular proteinuria in many of these patients presenting in renal failure persisted even when light chain output was reduced after chemotherapy.
PMCID: PMC498880  PMID: 6206095
14.  Usefulness of the Medical Research Council (MRC) dyspnoea scale as a measure of disability in patients with chronic obstructive pulmonary disease 
Thorax  1999;54(7):581-586.
BACKGROUND—Methods of classifying chronic obstructive pulmonary disease (COPD) depend largely upon spirometric measurements but disability is only weakly related to measurements of lung function. With the increased use of pulmonary rehabilitation, a need has been identified for a simple and standardised method of categorising disability in COPD. This study examined the validity of the Medical Research Council (MRC) dyspnoea scale for this purpose.
METHODS—One hundred patients with COPD were recruited from an outpatient pulmonary rehabilitation programme. Assessments included the MRC dyspnoea scale, spirometric tests, blood gas tensions, a shuttle walking test, and Borg scores for perceived breathlessness before and after exercise. Health status was assessed using the St George's Respiratory Questionnaire (SGRQ) and Chronic Respiratory Questionnaire (CRQ). The Nottingham Extended Activities of Daily Living (EADL) score and Hospital Anxiety and Depression (HAD) score were also measured.
RESULTS—Of the patients studied, 32 were classified as having MRC grade 3 dyspnoea, 34 MRC grade 4 dyspnoea, and 34 MRC grade 5 dyspnoea. Patients with MRC grades 1 and 2 dyspnoea were not included in the study. There was a significant association between MRC grade and shuttle distance, SGRQ and CRQ scores, mood state and EADL. Forced expiratory volume in one second (FEV1) was not associated with MRC grade. Multiple logistic regression showed that the determinants of disability appeared to vary with the level of disability. Between MRC grades 3 and 4 the significant covariates were exercise performance, SGRQ and depression score, whilst between grades 4 and 5 exercise performance and age were the major determinants.
CONCLUSIONS—The MRC dyspnoea scale is a simple and valid method of categorising patients with COPD in terms of their disability that could be used to complement FEV1 in the classification of COPD severity.


PMCID: PMC1745516  PMID: 10377201
15.  Management and outcome of pulmonary tuberculosis in adults notified in England and Wales in 1983. Medical Research Council Tuberculosis and Chest Diseases Unit. 
Thorax  1988;43(8):591-598.
The management and outcome of treatment were studied, two years or more after notification, in previously untreated adult patients of white and Indian subcontinent (Indian, Pakistani, and Bangladeshi) ethnic origin with pulmonary tuberculosis notified in England and Wales in the first six months of 1983. Of the 1068 patients, 10% had died, 3% defaulted, and 1% left the UK before completing chemotherapy. Of the 917 patients who completed chemotherapy, 90% were prescribed rifampicin and isoniazid throughout, most having ethambutol in addition either in the initial phase only (72%) or throughout (3%); 18% had pyrazinamide. The outcome of chemotherapy at the time the patient was last seen was reported by the clinician. Of those completing treatment, most were classified as cured after the primary course of chemotherapy (86%) or after modification of chemotherapy because of toxicity (10%) or therapeutic failure (2%). Altogether, 28 patients were classified as therapeutic failures because of a slow response, deterioration, or failure during chemotherapy or relapse after stopping chemotherapy. A further 151 patients, however, failed to complete chemotherapy, some for reasons attributable to a failure of the routine clinical services. This should prompt continued efforts to maximise the efficiency of the services for tuberculosis. The main differences between the findings of this survey and those of the previous Medical Research Council survey (of patients starting chemotherapy in 1978-9) were an increased use of pyrazinamide and a reduction in the duration of the chemotherapy prescribed.
PMCID: PMC461393  PMID: 3175971
16.  Medical Research Council leukaemia trial, UKALL VII. A report to the Council by the Working Party on Leukaemia in Childhood. 
Archives of Disease in Childhood  1985;60(11):1050-1054.
Eighty two eligible children with 'standard risk' lymphoblastic leukaemia were entered into the Medical Research Council UKALL VII trial. Three failed to remit. With a minimum follow up time of four years, actuarial relapse free survival for the remainder was 65%; a significant improvement over the two preceding 'standard risk' trials at the same stage. Only one of five treatment variables possibly affected relapse free survival; this being whether methotrexate was given orally or parenterally during remission maintenance treatment. Twenty seven of 36 patients (75%) who were given intramuscular methotrexate remain alive and in their first remission compared with 23 of 41 (56%) given the drug orally. Although statistically significant differences in small trials should be interpreted with caution, this finding raises the possibility that orally administered methotrexate is not completely absorbed.
PMCID: PMC1777623  PMID: 3907505
17.  Modifying the Medical Research Council grading system through Rasch analyses 
Brain  2011;135(5):1639-1649.
The Medical Research Council grading system has served through decades for the evaluation of muscle strength and has been recognized as a cardinal feature of daily neurological, rehabilitation and general medicine examination of patients, despite being respectfully criticized due to the unequal width of its response options. No study has systematically examined, through modern psychometric approach, whether physicians are able to properly use the Medical Research Council grades. The objectives of this study were: (i) to investigate physicians’ ability to discriminate among the Medical Research Council categories in patients with different neuromuscular disorders and with various degrees of weakness through thresholds examination using Rasch analysis as a modern psychometric method; (ii) to examine possible factors influencing physicians’ ability to apply the Medical Research Council categories through differential item function analyses; and (iii) to examine whether the widely used Medical Research Council 12 muscles sum score in patients with Guillain–Barré syndrome and chronic inflammatory demyelinating polyradiculoneuropathy would meet Rasch model's expectations. A total of 1065 patients were included from nine cohorts with the following diseases: Guillain–Barré syndrome (n = 480); myotonic dystrophy type-1 (n = 169); chronic inflammatory demyelinating polyradiculoneuropathy (n = 139); limb-girdle muscular dystrophy (n = 105); multifocal motor neuropathy (n = 102); Pompe's disease (n = 62) and monoclonal gammopathy of undetermined related polyneuropathy (n = 8). Medical Research Council data of 72 muscles were collected. Rasch analyses were performed on Medical Research Council data for each cohort separately and after pooling data at the muscle level to increase category frequencies, and on the Medical Research Council sum score in patients with Guillain–Barré syndrome and chronic inflammatory demyelinating polyradiculoneuropathy. Disordered thresholds were demonstrated in 74–79% of the muscles examined, indicating physicians’ inability to discriminate between most Medical Research Council categories. Factors such as physicians’ experience or illness type did not influence these findings. Thresholds were restored after rescoring the Medical Research Council grades from six to four options (0, paralysis; 1, severe weakness; 2, slight weakness; 3, normal strength). The Medical Research Council sum score acceptably fulfilled Rasch model expectations after rescoring the response options and creating subsets to resolve local dependency and item bias on diagnosis. In conclusion, a modified, Rasch-built four response category Medical Research Council grading system is proposed, resolving clinicians’ inability to differentiate among its original response categories and improving clinical applicability. A modified Medical Research Council sum score at the interval level is presented and is recommended for future studies in Guillain–Barré syndrome and chronic inflammatory demyelinating polyradiculoneuropathy.
doi:10.1093/brain/awr318
PMCID: PMC3338921  PMID: 22189568
MRC; manual muscle testing; Rasch; neuromuscular disorders
18.  Involvement of consumers in studies run by the Medical Research Council Clinical Trials Unit: Results of a survey 
Trials  2012;13:9.
Background
We aimed to establish levels of consumer involvement in randomised controlled trials (RCTs), meta-analyses and other studies carried out by the UK Medical Research Council (MRC) Clinical Trials Unit across the range of research programs, predominantly in cancer and HIV.
Methods
Staff responsible for studies that were included in a Unit Progress Report (MRC CTU, April 2009) were asked to complete a semi-structured questionnaire survey regarding consumer involvement. This was defined as active involvement of consumers as partners in the research process and not as subjects of that research. The electronic questionnaires combined open and closed questions, intended to capture quantitative and qualitative information on whether studies had involved consumers; types of activities undertaken; recruitment and support; advantages and disadvantages of involvement and its perceived impact on aspects of the research.
Results
Between October 2009 and April 2010, 138 completed questionnaires (86%) were returned. Studies had been conducted over a 20 year period from 1989, and around half were in cancer; 30% in HIV and 20% were in other disease areas including arthritis, tuberculosis and blood transfusion medicine. Forty-three studies (31%) had some consumer involvement, most commonly as members of trial management groups (TMG) [88%]. A number of positive impacts on both the research and the researcher were identified. Researchers generally felt involvement was worthwhile and some felt that consumer involvement had improved the credibility of the research. Benefits in design and quality, trial recruitment, dissemination and decision making were also perceived. Researchers felt they learned from consumer involvement, albeit that there were some barriers.
Conclusions
Whilst most researchers identified benefits of involving consumers, most of studies included in the survey had no involvement. Information from this survey will inform the development of a unit policy on consumer involvement, to guide future research conducted within the MRC Clinical Trials Unit and beyond.
doi:10.1186/1745-6215-13-9
PMCID: PMC3398265  PMID: 22243649
Public and patient involvement; consumer involvement; clinical trials; systematic reviews; RCTs
19.  ‘You feel you've been bad, not ill’: Sick doctors’ experiences of interactions with the General Medical Council 
BMJ Open  2014;4(7):e005537.
Objective
To explore the views of sick doctors on their experiences with the General Medical Council (GMC) and their perception of the impact of GMC involvement on return to work.
Design
Qualitative study.
Setting
UK.
Participants
Doctors who had been away from work for at least 6 months with physical or mental health problems, drug or alcohol problems, GMC involvement or any combination of these, were eligible for inclusion into the study. Eligible doctors were recruited in conjunction with the Royal Medical Benevolent Fund, the GMC and the Practitioner Health Programme. These organisations approached 77 doctors; 19 participated. Each doctor completed an in-depth semistructured interview. We used a constant comparison method to identify and agree on the coding of data and the identification of central themes.
Results
18 of the 19 participants had a mental health, addiction or substance misuse problem. 14 of the 19 had interacted with the GMC. 4 main themes were identified: perceptions of the GMC as a whole; perceptions of GMC processes; perceived health impacts and suggested improvements. Participants described the GMC processes they experienced as necessary, and some elements as supportive. However, many described contact with the GMC as daunting, confusing and anxiety provoking. Some were unclear about the role of the GMC and felt that GMC communication was unhelpful, particularly the language used in correspondence. Improvements suggested by participants included having separate pathways for doctors with purely health issues, less use of legalistic language, and a more personal approach with for example individualised undertakings or conditions.
Conclusions
While participants recognised the need for a regulator, the processes employed by the GMC and the communication style used were often distressing, confusing and perceived to have impacted negatively on their mental health and ability to return to work.
doi:10.1136/bmjopen-2014-005537
PMCID: PMC4120406  PMID: 25034631
MENTAL HEALTH; QUALITATIVE RESEARCH; OCCUPATIONAL & INDUSTRIAL MEDICINE
20.  Analysis of the Indian Council of Medical Research–India Diabetes (ICMR–INDIAB) Study 
The Indian Council of Medical Research–India Diabetes (ICMR-INDIAB) study is the first nationally representative survey of diabetes in India. It aims to provide national and regional counts of diabetes and prediabetes and also of cardiovascular risk factors. This ambitious and complex survey uses robust sampling techniques, standardized methods, appropriate quality assurance, and a three-phase data collection. However, the survey should be completed within a reasonable time span to avoid a differential effect of secular trends on regional estimates. A high response rate and low missing values must also be ensured.
Reliance on capillary whole blood glucose (CBG) for the diagnosis of hyperglycemic states is a limitation of the survey. However, this is a reasonable compromise given the practical challenges of such a large study. Despite a good correlation between CBG and venous plasma glucose (VPG), the use of CBG may misclassify glycemic status. A better characterization of the CBG–VPG relationship, and the performance of CBG for detecting hyperglycemia, using a much larger sample, seems therefore advisable. This should be possible given that venous blood has been collected on a sizeable subset of participants.
The Indian Council of Medical Research and the Madras Diabetes Research Foundation deserve praise for this massive undertaking, which will highlight areas for policy action and establish a national framework for noncommunicable disease (NCD) surveillance. The ICMR–INDIAB survey lays the foundation for effective NCD prevention and control and for applied public health research.
PMCID: PMC3192598  PMID: 21880234
capillary glucose; diabetes; India; prevalence; survey
21.  Advocacy for active transport: advocate and city council perspectives 
Background
Effective advocacy is an important part of efforts to increase population participation in physical activity. Research about effective health advocacy is scarce, however, the health sector can learn from the experiences and knowledge of community advocates and those who are on the receiving end of this advocacy. The aim of this study is to explore advocacy for active transport from the perspectives of community advocates and representatives from City councils.
Methods
Cycling and walking advocates were identified from the local contact list of Cycling Advocates Network and Living Streets Aotearoa. Semi-structured telephone interviews were conducted with cycle and walking advocates from throughout New Zealand. Advocates also nominated a suitable council officer at their local City council to be interviewed. Interviews were recorded and transcribed and categories of responses for each of the questions created.
Results
Several processes were used by advocates to engage with council staff, including formal council submissions, meetings, stakeholder forums and partnership in running community events promoting active transport. Several other agencies were identified as being influential for active transport, some as potential coalition partners and others as potential adversaries. Barriers to improving conditions for active transport included a lack of funding, a lack of will-power among either council staff or councillors, limited council staff capacity (time or training) and a culture of providing infrastructure for motor vehicles instead of people. Several suggestions were made about how the health sector could contribute to advocacy efforts, including encouraging political commitment, engaging the media, communicating the potential health benefits of active transport to the general public and being role models in terms of personal travel mode choice and having workplaces that support participation in active transport.
Conclusions
There is potential for the health sector to make an important contribution to advocacy for active transport in New Zealand. While there are many barriers to achieving supportive environments for cycling and walking, a range of advocacy strategies were identified which could help ensure that health perspectives are considered in decisions relevant to active transport.
doi:10.1186/1479-5868-7-5
PMCID: PMC2830166  PMID: 20181003
22.  Reducing Adverse Childhood Experiences (ACE) by Building Community Capacity: A Summary of Washington Family Policy Council Research Findings 
Community capacity for organization and collaboration has been shown to be a powerful tool for improving the health and well-being of communities. Since 1994 the Washington State Family Policy Council has supported the development of community capacity in 42 community public health and safety networks. Community networks bring local communities together to restructure natural supports and local resources to meet the needs of families and children, and increase cross-system coordination and flexible funding streams to improve local services and policy. In this study, researchers sought to demonstrate the strong impact of the community networks’ capacity to interrupt health and social problems. Findings suggest that community networks reduce health and safety problems for the entire community population. Further, community networks with high community capacity reduced adverse childhood experiences (ACE) in young adults ages 18–34.
doi:10.1080/10852352.2012.707463
PMCID: PMC3483862  PMID: 22970785
adverse childhood experiences (ACE); community capacity; cost savings; health; social services
23.  Community-Led Cancer Action Councils in Queens, New York: Process Evaluation of an Innovative Partnership With the Queens Library System 
Introduction
Community-based participatory research (CBPR) has great potential to address cancer disparities, particularly in racially and ethnically diverse and underserved neighborhoods. The objective of this study was to conduct a process evaluation of an innovative academic–community partnership, Queens Library HealthLink, which aimed to reduce cancer disparities through neighborhood groups (Cancer Action Councils) that convened in public libraries in Queens, New York.
Methods
We used a mixed-methods approach to conduct 69 telephone survey interviews and 4 focus groups (15 participants) with Cancer Action Council members. We used 4 performance criteria to inform data collection: action or attention to sustainability, library support for the council, social cohesion and group leadership, and activity level. Focus group transcripts were independently coded and cross-checked for consensus until saturation was achieved.
Results
Members reported benefits and barriers to participation. Thirty-three original focus group transcript codes were organized into 8 main themes related to member experiences: 1) library as a needed resource, 2) library as a reputable and nondenominational institution, 3) value of library staff, 4) need for a HealthLink specialist, 5) generation of ideas and coordination of tasks, 6) participation challenges, 7) use of community connections, and 8) collaboration for sustainability.
Conclusion
In response to the process evaluation, Cancer Action Council members and HealthLink staff incorporated member suggestions to improve council sustainability. The councils merged to increase intercouncil collaboration, and institutional changes were made in funding to sustain a HealthLink specialist beyond the grant period.
doi:10.5888/pcd11.130176
PMCID: PMC3921904  PMID: 24503342
24.  Making progress: the role of cancer councils in Australia in indigenous cancer control 
BMC Public Health  2014;14:347.
Background
Indigenous Australians have poorer outcomes from cancer for a variety of reasons including poorer participation in screening programs, later diagnosis, higher rates of cancer with poor prognosis and poorer uptake and completion of treatment. Cancer prevention and support for people with cancer is part of the core business of the State and Territory Cancer Councils. To support sharing of lessons learned, this paper reports an environmental scan undertaken in 2010 in cancer councils (CCs) nationwide that aimed to support Indigenous cancer control.
Methods
The methods replicated the approach used in a 2006 environmental scan of Indigenous related activity in CCs. The Chief Executive Officer of each CC nominated individuals for interview. Interviews explored staffing, projects, programs and activities to progress cancer control issues for Indigenous Australians, through phone or face-to-face interviews. Reported initiatives were tabulated using predetermined categories of activity and summaries were returned to interviewees, the Aboriginal and Torres Strait Islander Subcommittee and Chief Executive Officers for verification.
Results
All CCs participated and modest increases in activity had occurred in most states since 2006 through different means. Indigenous staff numbers were low and no Indigenous person had yet been employed in smaller CCs; no CC had an Indigenous Board member and efforts at capacity building were often directed outside of the organisation. Developing partnerships with Indigenous organisations were ongoing. Acknowledgement and specific mention of Indigenous people in policy was increasing. Momentum increased following the establishment of a national subcommittee which increased the profile of Indigenous issues and provided collegial and practical support for those committed to reducing Indigenous cancer disparities. Government funding of “Closing the Gap” and research in the larger CCs have been other avenues for increasing knowledge and activity in Indigenous cancer control.
Conclusions
This environmental scan measured progress, allowed sharing of information and provided critical assessment of progress across areas of importance for increasing Indigenous cancer control. Structured examination of policies, institutional support systems, programs and interventions is a useful means of highlighting opportunities for progress with minority groups relevant for many organisations. Progress has occurred with momentum likely to increase in the future and benefit from commitment to long-term monitoring and sharing of achievements.
doi:10.1186/1471-2458-14-347
PMCID: PMC4004461  PMID: 24725974
Cancer; Aboriginal; Indigenous; Environmental scan; Delivery of health care/*organization & administration; Health services accessibility; Neoplasms/*prevention & control
25.  The European Research Council—A European Renaissance 
PLoS Biology  2004;2(5):e161.
European scientists are pressing for the creation of an independent body to fund European research - driven by the pursuit of scientific excellence
doi:10.1371/journal.pbio.0020161
PMCID: PMC406409  PMID: 15138516

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