The Million Women Study

Lead Research Organisation: University of Oxford
Department Name: Clinical Medicine

Abstract

We actively involve participants and the public in various stages of our research, using focus groups when designing questionnaires and including lay members in our Steering Committees. The views of members of the public are invited via our study websites and free-phone lines. To date, we have responded to over 6000 enquiries.

We regularly update our websites, summarizing our results in lay language, and frequently discuss our work at public meetings. We will continue to disseminate our findings widely, since our research is aimed primarily at providing reliable information on modifiable factors that directly affect the health of the public.

Technical Summary

The Million Women Study is the world largest longitudinal study of the health of women, worldwide. In 1996-2001 1.36 million UK women were recruited through NHS breast screening centres. In the eligible age range, 50-64 years, they include ~25% of all UK women; and, in the recruitment areas, ~50% of the general population and ~70% of those screened. To join the study women completed a questionnaire about a range of social, demographic, personal and lifestyle factors and gave signed consent for follow-up.



The average age was 56 then, and is now 65. Two postal re-surveys have been done collecting information on a wide range of variables. Some 10 million women-years of follow-up have already accrued, with more than 40,000 deaths and 2 million admissions to NHS hospitals. Over 99% of the survivors are still being routinely followed for cause-specific deaths and hospital admissions. Further details and study questionnaires are at www.millionwomenstudy.org.



The Million Women Study was set up to provide reliable information about the major causes of disability and death among women. The long-term plan is to continue following the cohort until the average age is 80 at least, focusing on changing public health issues as women age. Initial emphasis was on hormone replacement therapy and breast cancer, because one third used HRT and breast cancer is the most common cause of death among women in their 50s.



For women in their 60s, however, heart disease and stroke become the leading causes of disability and death. Obesity, alcohol, smoking, physical inactivity, body size at various ages, and other factors have been linked to the risk of women developing vascular disease. There is concern about the rapid rise in obesity, not only for vascular disease, but for many non-fatal conditions. There is also concern about the effects of the rising consumption alcohol and there is a need to characterize the net effect of moderate intakes on the health of women.



In the next 5 years, and beyond, the Million Women Study can provide uniquely reliable evidence about the changing role of obesity, drinking, smoking and many other factors in vascular and other major diseases among women.

Publications

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Allen NE (2011) Fluid intake and incidence of renal cell carcinoma in UK women. in British journal of cancer

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Allen NE (2009) Moderate alcohol intake and cancer incidence in women. in Journal of the National Cancer Institute

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Armstrong ME (2011) Body mass index and physical activity in relation to the incidence of hip fracture in postmenopausal women. in Journal of bone and mineral research : the official journal of the American Society for Bone and Mineral Research

 
Guideline Title prescribing HRT
Description HRT Prescribing advice
Geographic Reach Multiple continents/international 
Policy Influence Type Citation in clinical guidelines
Impact HRT prescribing has fallen substantially in the UK and worldwide and this has been followed by a fall in the number of incident cases of breast cancer. Current scientific opinion is that the two are causally related, and that the fall in (unnecessary) prescribing of HRT has prevented tens of thousands of breast cancer cases worldwide. The guidelines no longer advise prescripion of HRT as first-line treatment for postmenopausal osetoposis and this has controbuted to the very rapid rise in prescribing of other agents, notably of oral bisphosphonates. The long-term efficacy and effects of these agents is not clear and further research is underway.
 
Description Post-operative VTE risk
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Citation in clinical reviews
 
Description advisory positions- please see Awards section.
Geographic Reach National 
Policy Influence Type Participation in advisory committee
 
Description Shiftwork and disease (HSE) 2009-2015
Amount £530,000 (GBP)
Organisation Health and Safety Executive (HSE) 
Sector Public
Country United Kingdom
Start 06/2009 
End 12/2015
 
Title Record linkage of large epidemiological data-bases 
Description We were the first group in England to successfully link a large database (The Million Women Study) with HES data. We have in 2014 obtained linkage to the primary care data in CPRD (and plan to link to equivalent datsets in Scotland) We have linked MWS data to that held by the NHS Cancer Screening Programmes. Our research staff have developed methods for reliable use of linked data in large epidemiological studies, including data dictionaries,derived variables and outcomes adjudication; we are working in collaboration with other UK cohorts. We have applied to link MWS data with that in UK Biobank. We have taken part in conferences on e-health research. 
Type Of Material Technology assay or reagent 
Year Produced 2009 
Provided To Others? Yes  
Impact Many groups have consulted us about record linkage, and we regularly assist them in such work. We are working with UK biobank on validation studies on use of linked data eg for stroke and for neurodegenerative disease. Linkage with Cancer Screening will allow us to feed back information eg on characteristics of screened women which has the potential to improve service. 
 
Title Web-based questionnaires 
Description We have developed web-based questionnaires on diet and physical activity. 
Type Of Material Technology assay or reagent 
Year Produced 2009 
Provided To Others? Yes  
Impact UK Biobank has incorporated our web-questionnaires into their work. 
 
Title Oxford WebQ 
Description Online dietary questionnaire with automatic data coding by nutrient values. 
Type Of Material Database/Collection of data 
Year Produced 2012 
Provided To Others? Yes  
Impact The WebQ has been used by us and by UK Biobank to collect repeated measures of dietary intake for our large cohort studies. Data from the webQ will shortly be available for research use. Experiwence in using the webQ in UK Biobank has led to development of other online questionnaires, and so a new model of data collection in ongoing cohorts. 
 
Description BHFCRE 
Organisation University of Oxford
Department BHF Centre of Research Excellence
Country United Kingdom 
Sector Academic/University 
PI Contribution Cardiovascular research on Million Women Study and EPIC-Oxford cohorts contributes to the Population health component of the current round of funded research (2014-); CEU staff named as senior PIs for the BHFCRE; collaborative research projects with other Oxford groups within BHFCRE underway and planned.
Collaborator Contribution Collaboration on CVD research; opportunities for funding for specific projects and fellowships.
Impact Funding for feasibility study of genetic and environmental risk factors for aortic stenosis [Million Women Study].
Start Year 2011
 
Description CTSU 
Organisation Medical Research Council (MRC)
Department MRC/Cancer Research UK/BHF Clinical Trial Service Unit & Epidemiological Studies Unit
Country United Kingdom 
Sector Public 
PI Contribution Collaboration on a number of analyses of Million Women Study Data, particularly with respect to vascular disease epidemiology and statistical methods.
Collaborator Contribution Intellectual imput
Impact Several papers jointly written. Multidisciplinary - statistics and cardiovascular epidemiology
Start Year 2006
 
Description DementiasPlatformUK 
Organisation MRC Dementias Platform UK
Country United Kingdom 
Sector Public 
PI Contribution Contributing cohort with particular interest/expertise in outcomes adjudication for research using electronic health records.
Collaborator Contribution Collaboration on outcomes adjudication work -also includes UK Biobank and UK-wide neurodegenerative disease outcomes groups [including NOWG]
Impact None yet; platform launched October 2014
Start Year 2014
 
Description Economic costs of obesity 
Organisation University of Oxford
Country United Kingdom 
Sector Academic/University 
PI Contribution Epidemiological expertise Data on obesity and use of primary and secondary care in the Million women Study cohort
Collaborator Contribution Expertise in health economics and health policy
Impact None yet
Start Year 2014
 
Description NSHD 
Organisation Medical Research Council (MRC)
Department National Survey of Health and Development (NSHD)
Country United Kingdom 
Sector Public 
PI Contribution Linkage of anthropometric and other data from MWS to data held by NSHD; analysis of comparison between measured and reported values
Collaborator Contribution Linkage of measured values from NSHD to MWS data Intellectual input for publication
Impact Publication (Cairns 2011)
Start Year 2010
 
Description Oxford WebQ 
Organisation UK Biobank
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution Collaborative development of online dietary questionnaire (the Oxford WebQ); in use by UKBiobank and MWS; MWS programmer led development.
Collaborator Contribution Programming and scientific input.
Impact Methods and validation publication: Liu et al 2011 Data collected in UK biobank for 200,000 particpants Within MWS for 20,000 participants
Start Year 2007
 
Description UKBiobank 
Organisation UK Biobank
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution Membership of steering committee and International Scientific Advisory Board Contribution of MWS data to UK Biobank outcomes validation working group: stroke, neurodegenerative disease Development of online questionnaires on diet (the Oxford WebQ, developed in CEU and used by UKB) ,occupation, cognitive function.
Collaborator Contribution UK Biobank financial and staff support for outcomes validation and online questionnaires is relevant both to UKB and to our large epidemiological studies.
Impact The Oxford WebQ diet questionnaire [enquiries: krys.baker@ceu.ox.ac.uk].
Start Year 2011
 
Description genotyping 
Organisation McGill University
Country Canada 
Sector Academic/University 
PI Contribution Blood samples for genotyping collected by Million Women Study. Data analysed by Million Women Study.
Collaborator Contribution DNA extraction and genotyping.
Impact 3 publications on joint effects of genetic and environmental risk factors for breast cancer (Travis et al, 2010; Reeves etal, 2010 and 2011).
Start Year 2006
 
Description genotyping 
Organisation National Genotyping Center (CNG)
Country France 
Sector Public 
PI Contribution Blood samples for genotyping collected by Million Women Study. Data analysed by Million Women Study.
Collaborator Contribution DNA extraction and genotyping.
Impact 3 publications on joint effects of genetic and environmental risk factors for breast cancer (Travis et al, 2010; Reeves etal, 2010 and 2011).
Start Year 2006
 
Description I'm a scientist 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? Yes
Geographic Reach National
Primary Audience Schools
Results and Impact Both researchers engaged with hundreds of children on a wide range of topics. The researcher who won the award received a prize which is being used to develop educational materials about science for schools.

Not measurable.
Year(s) Of Engagement Activity 2011,2012
 
Description Media: general 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact Many of our findings are disseminated widely in the media and to policy makers, as our findings are often relevant to public health - eg the health consequences of alcohol consumption and of obesity in women; the effects of HRT; physical activity and vascular diseases

Our finging on HRT and alcohol have affected policy.
Year(s) Of Engagement Activity 2006,2007,2008,2009,2010
 
Description Prescribing policy: HRT 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? Yes
Geographic Reach National
Primary Audience Health professionals
Results and Impact Our results have been summarized by the MHRA and have informed their prescribing guidelines both on use of HRT for menopause and on treatment of postmenopausal osteoporosis

Prescribing of HRT has declined and the incidence of breast cancer has declined in the UK and in other 'developed' countries where HRT was widely prescribed.
Year(s) Of Engagement Activity 2006,2007,2008,2009
 
Description Science Fairs 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact Research staff are active in having stalls with interactive games etc to help people understand our work and what it means at public Science Fairs eg:
Science in your world' Science Week 2013, Oxford: epidemiology game, discussions on cohort studies
Cancer Research UK Interactive Science Fair, Oxford: personalised medicine
Bright Sparks Brighton Science Festival 2014: obesity and cancer stall/activities
MRC Centenary Celebration Science Fair, London: epidemiology stall and activity
'Science Lates' event, Science Museum, London, September 2015
Oxford Science Festival, July 2016 WCRF Support Event, Worcester College, 2017
ScienceOxford 'Famelab', February 2017

Stalls and games provoke interest and engagement at the time. Further impact unknown.
Year(s) Of Engagement Activity 2012,2013,2014,2015,2016
 
Description science open days 
Form Of Engagement Activity Participation in an open day or visit at my research institution
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact Open days held at the Cancer Research UK Oxford Research Centre are attended by MWS staff; our posters present both cancer and some non-cancer work to local supporters and the general public .

Not measured.
Year(s) Of Engagement Activity 2011,2012,2013,2014,2015
 
Description talks to participants 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact MWS researchers speak about the study at meetings of interested local groups (eg Women's Institute), including study participants.

2015/16 several researchers have spoken to the Nuffield Department of Population Health participant panel.

November 2016 one of researchers gave two lectures about the MWS to U3A meeting in Haddenham, Bucks

Not measured.
Year(s) Of Engagement Activity 2008,2009,2010,2011,2012