The effect of socioeconomic status on outcomes for people with cystic fibrosis: A longitudinal study

Lead Research Organisation: University of Liverpool
Department Name: Population Community and Behavioural Sci

Abstract

People from disadvantaged backgrounds experience worse health than those more well off in society. In the UK and internationally policies are being implemented to try to reduce these differences in health. This is proving difficult, however, and it is important to develop a better understanding of how these health differences are generated and maintained.
In this project cystic fibrosis will be used as an example, to investigate these processes. Cystic fibrosis is an important chronic disease of childhood and young adulthood. It is a genetic disease requiring intensive medical and social support. I will analyse the national cystic fibrosis registers from the UK and Denmark from a health inequalities point of view. I will investigate the health and social outcomes experienced by people with cystic fibrosis from different socio-economic backgrounds. For example, are there differences in lung function, access to healthcare, survival, educational attainment and employment, for people living in different socio-economic circumstances?
In addition to improving our understanding of health inequalities, this project will generate an in-depth description of the outcomes experienced by people with cystic fibrosis. These insights will inform the development of policies to improve public health and patient care.

Technical Summary

Aim
To investigate the effect of socioeconomic status on clinical outcomes, healthcare use and employment opportunities in people with cystic fibrosis.

Objectives
In people with cystic fibrosis:
1. To investigate the relationships between socioeconomic status and clinical outcomes.
2. To investigate the impact of socioeconomic status on educational attainment and employment.
3. To assess the policy implications of the above.

Design
Longitudinal analysis of the UK and Danish cystic fibrosis registers.

Methodology
Extensive data are available from cystic fibrosis registers in the UK and Denmark. In the first analysis, data from the UK CF register will be analysed. The UK Cystic Fibrosis Patient Register (CFPTR) captures data on all people with CF in the UK at patient registration (11,359 records to end of 2007), annual review (42,267 records) and ad hoc clinic visits (86,182 records). The database contains clinical (e.g.% predicted FEV1; Body mass index centile; survival; frequency of respiratory exacerbations); social (e.g. employment status; educational achievement) and healthcare use data (e.g. time in hospital, intravenous therapy days, CF related therapy use). Full postcode data allows estimation of an area-based measure of socioeconomic status. To analyse these data, we will use recently developed methodology and associated open-source software that allow examination of association between important CF outcomes and socio-economic status whilst allowing for correlation between repeated measurements within patients, trends over time and potentially informative missing values. For the Danish CF register, the analysis will exploit the richer, individual-level socioeconomic data that they contain, including employment, income, healthcare expenditure and receipt of welfare benefits.

Scientific and medical opportunities
This project will inform policy and practice around inequalities in health. This is a priority at national and international levels. A better understanding of the mechanisms that generate and maintain health differentials is required in order to design effective policy interventions. In addition this project will generate an in-depth longitudinal description of the health, healthcare and social outcomes of people with cystic fibrosis in the UK. This will be an important contribution to our understanding of the clinical and social epidemiology of cystic fibrosis.

Publications

10 25 50

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Barr B (2014) Poor areas lose out most in new NHS budget allocation. in BMJ (Clinical research ed.)

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Barrett J (2015) Joint modelling of repeated measurements and time-to-event outcomes: flexible model specification and exact likelihood inference. in Journal of the Royal Statistical Society. Series B, Statistical methodology

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Campbell MC (2016) Investment in Sure Start children's centres is needed more than ever. in BMJ (Clinical research ed.)

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Garner P (2015) Commentary: Replication of influential trial helps international policy. in International journal of epidemiology

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Garner P (2013) DEVTA: results from the biggest clinical trial ever. in Lancet (London, England)

 
Description BMJ editorial on health inequalities in cystic fibrosis
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Citation in other policy documents
 
Description Deworming Cochrane Review
Geographic Reach Multiple continents/international 
Policy Influence Type Citation in other policy documents
Impact Recent Cochrane review has influenced debate on global deworming policies. For archived web references see: http://storify.com/JHeditor/deworming-drugs
URL http://storify.com/JHeditor/deworming-drugs
 
Description Due North report contributor
Geographic Reach National 
Policy Influence Type Citation in other policy documents
Impact Influenced PH England policy on health inequalities
URL http://www.cles.org.uk/wp-content/uploads/2014/09/Due-North-Report-of-the-Inquiry-on-Health-Equity-i...
 
Description Engagement with CALM
Geographic Reach Local/Municipal/Regional 
Policy Influence Type Influenced training of practitioners or researchers
URL https://www.thecalmzone.net/2012/12/calmsummit-success/
 
Description Engagement with CF Trust
Geographic Reach National 
Policy Influence Type Citation in other policy documents
URL http://cysticfibrosis.org.uk/news/latest-news/trust-announces-review-to-maximise-impact-of-uk-cf-reg...
 
Description Gave evidence at CMO meeting
Geographic Reach National 
Policy Influence Type Gave evidence to a government review
 
Description Gave oral evidence to APPG on the Impact of the Welfare Reform and Work Bill 2015-16
Geographic Reach National 
Policy Influence Type Gave evidence to a government review
Impact Influenced welfare reform bill - Amendment to welfare bill means four indicators of child poverty including household income will be kept
URL http://www.theguardian.com/society/2016/feb/26/uk-government-forced-to-retain-household-income-as-me...
 
Description Research cited in CMO report
Geographic Reach National 
Policy Influence Type Citation in other policy documents
URL https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/351629/Annual_report_2013_...
 
Description WHO health equity document
Geographic Reach Multiple continents/international 
Policy Influence Type Influenced training of practitioners or researchers
URL http://www.euro.who.int/__data/assets/pdf_file/0019/155062/E95912.pdf
 
Description Cystic Fibrosis Trust Project Research Grant
Amount £99,745 (GBP)
Organisation Cystic Fibrosis Trust 
Sector Charity/Non Profit
Country United Kingdom
Start 10/2013 
End 11/2016
 
Description MRC Centenary Award
Amount £100,000 (GBP)
Organisation Medical Research Council (MRC) 
Sector Academic/University
Country United Kingdom
Start 04/2013 
End 12/2014
 
Description MRC Clinician Scientist
Amount £1,200,000 (GBP)
Funding ID MR/P008577/1 
Organisation Medical Research Council (MRC) 
Sector Academic/University
Country United Kingdom
Start 07/2017 
End 06/2021
 
Title Joint modelling collaboration 
Description Collaboration between myself, Jessica Barrett (MRC Biostats unit and MRC Career Development Fellow), Prof Robin Henderson, Prof. Peter Diggle. The work is motivated by data from the UK cystic fibrosis register that I have been working with. Clinical questions to be addressed using these data include the relationship between lung function and survival in cystic fibrosis patients, which necessitate the use of statistical methodology to jointly model longitudinal and survival data. Jessica Barrett is developing a new approach to joint modelling which will enable greater flexibility in the specification of the longitudinal and survival models, while I am leading clinical work exploring the effect of other covariates on lung function and survival. The dataset is rich in methodological challenges and would lead to innovative future work, including joint modelling with left-truncated data, joint modelling encompassing a relative survival framework, joint modelling with change-point longitudinal models, and application of landmark analysis, a recently developed methodology for predicting patient outcomes. Both Jessica Barrett and David Taylor-Robinson have MRC Centenary Awards to continue this work. 
Type Of Material Model of mechanisms or symptoms - human 
Year Produced 2012 
Provided To Others? Yes  
Impact Collaboration with MRC biostatistics unit and further funding via MRC Centenary award Jessica B, Diggle P, Henderson R, Taylor-Robinson D. Joint Modelling of Repeated Measurements and Time-to-Event Outcomes: Flexible Model Specification and Exact Likelihood Inference (under review Journal of the Royal Statistical Society) Taylor-Robinson D, Whitehead M, Smyth R, Diggle P, Henderson R, Barrett J (2012) Longitudinal Changes in Lung Function and risk of Death in Cystic Fibrosis: developing a Joint Model for the UK Population. Journal of Cystic Fibrosis vol 11 (s1) pp 7 (presented at European CF conference 2012) Jessica Barrett was invited to speak at "The Statistical Analysis of Multi-outcome Data" workshop to be held at the Universite Pierre et Marie Curie in Paris on the 9th and 10th July 2012. The workshop, which aims to bring together international researchers in statistics and biostatistics has a truly international feel with a global list of speakers including experts from China, Japan, USA and Europe. http://www.mrc-bsu.cam.ac.uk/NewsandEvents/previous_news_Jun-Jul2012.html#News_July2012_1 Barrett J, Diggle P, Henderson R, Taylor-Robinson D. Joint Modelling of Repeated Measurements and Time-to-Event Outcomes: Flexible Model Specification and Exact Likelihood Inference. Journal of the Royal Statistical Society Series B (2014) doi: 10.1111/rssb.12060 
URL http://www.mrc-bsu.cam.ac.uk/NewsandEvents/previous_news_Jun-Jul2012.html#News_July2012_1
 
Title Joint modelling update 
Description Paper accepted in Journal of the Royal Statistical Society Series B outlining novel method for joint modelling of time to event and longitudinal outcomes: Barrett J, Diggle P, Henderson R, Taylor-Robinson D. Joint Modelling of Repeated Measurements and Time-to-Event Outcomes: Flexible Model Specification and Exact Likelihood Inference. Journal of the Royal Statistical Society Series B (2014) doi: 10.1111/rssb.12060 
Type Of Material Model of mechanisms or symptoms - human 
Year Produced 2013 
Provided To Others? Yes  
Impact We are applying this approach to analyse registry data for people with Cystic Fibrosis, but expect that this approach can be widely applied in other areas. We are further developing an R package to operationalise this statistical technique and make it broadly available to the research community 
 
Title Longitudinal modelling 
Description New approach to modelling longitudinal lung function data: Taylor-Robinson D, Whitehead M, Diderichsen F, Olesen HV, Pressler T, Smyth R, Diggle P. (2012) Understanding the natural progression in %FEV1 decline in patients with cystic fibrosis: A longitudinal study. Thorax http://thorax.bmj.com/content/early/2012/05/02/thoraxjnl-2011-200953.abstract 
Type Of Material Model of mechanisms or symptoms - human 
Year Produced 2012 
Provided To Others? Yes  
Impact Other groups using this approach at MRC Biostatistics Unit 
URL http://thorax.bmj.com/content/early/2012/05/02/thoraxjnl-2011-200953.abstract
 
Title UK and Danish Registers with socioeconomic linkeage 
Description 1. UK Cystic Fibrosis Trust Patient Registry (CFTPR): The CFTPR is the main data source for this project, administered by the UK CF Trust. It is a longitudinal patient register that achieved complete coverage of the UK in 1999. Individual level patient data are collected at annual review, and at hospital or clinic visits in the interim. At the end of 2007, the register contained 11,359 individuals, and captured 42,267 annual reviews, 86,192 ad hoc clinical visits, and 968 deaths. The database is rich in clinical, healthcare use and social data, containing over 130 fields, including full postcodes. We have linked this register to ONS data, using patient postcodes. 2. Danish CF register: This started in 2000, and contains around 500 patients. Data linkage in Denmark allows access to rich individual level socioeconomic data on patients and their parents. This linked data extends retrospectively to 1981 and contains information on employment, income, healthcare expenditure, hospitalisations and receipt of welfare benefits. This makes it possible to study changes in socioeconomic conditions over time, before and after specific phases of disease development. 
Type Of Material Biological samples 
Provided To Others? No  
Impact Taylor-Robinson, D., Whitehead, M., Diggle, P., Smyth, R. SOCIOECONOMIC STATUS AND RATE OF DECLINE OF LUNG FUNCTION IN THE UK CYSTIC FIBROSIS POPULATION. Pediatric Pulmonology 2010 Volume 45, Issue S33, Page 449 Taylor-Robinson D, Whitehead M, Diderichsen F, Olesen HV, Pressler T, Smyth R, Diggle P (2012) Understanding the natural progression in %FEV1 decline in patients with cystic fibrosis: A longitudinal study. Thorax, 67, 860-6. Taylor-Robinson DC, Smyth R, Diggle PJ, Whitehead M (2013) A Longitudinal Study of the Impact of Social Deprivation and Disease Severity on Employment Status in the UK Cystic Fibrosis Population. PLoS One, 8, e73322. Taylor-Robinson D, Diderichsen F, Olesen HV, Pressler T, Smyth R, Diggle P, Whitehead M. Low socio-economic status is associated with worse lung function in Danish CF population (2014) European Respiratory Journal doi: 10.1183/09031936.00063714 (in press) Qvist T, Gilljam M, Jönsson B, Taylor-Robinson D, Jensen-Fangel S, Wang M, Svahn A, Kötz K, Hansso L , Hollsing A, Hansen C, Finstad P, Pressler T, Høiby N, Katzenstein T. Epidemiology of nontuberculous mycobacteria among patients with cystic fibrosis in Scandinavia. Journal of Cystic Fibrosis doi: 10.1016/j.jcf.2014.08.002 (in press) 
 
Title Linked Danish CF registry 
Description Danish CF registry linked to other routine administrative data sources 
Type Of Material Database/Collection of data 
Year Produced 2013 
Provided To Others? Yes  
Impact Taylor-Robinson D, Diderichsen F, Olesen HV, Pressler T, Smyth R, Diggle P, Whitehead M. Low socio-economic status is associated with worse lung function in Danish CF population (2014) European Respiratory Journal doi: 10.1183/09031936.00063714 (in press) 
 
Title Novel longitudinal data analysis approach 
Description Barrett J, Diggle P, Henderson R, Taylor-Robinson D. Joint Modelling of Repeated Measurements and Time-to-Event Outcomes: Flexible Model Specification and Exact Likelihood Inference. Journal of the Royal Statistical Society Series B (2014) doi: 10.1111/rssb.12060 
Type Of Material Data analysis technique 
Year Produced 2013 
Provided To Others? Yes  
Impact Approach shared with other researchers: http://www.ucl.ac.uk/ich/research-ich/population-policy-practice/events/documents/Daivd_Taylor_Robinson 
URL http://www.ucl.ac.uk/ich/research-ich/population-policy-practice/events/documents/Daivd_Taylor_Robin...
 
Description CF-Epinet 
Organisation Cystic Fibrosis Trust
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution CF Trust Strategic Research Centre: CF Epinet Collaboration between Imperial College, Universities of Liverpool and Nottingham, UEA, LSHTM and the CF Trust. PI. Di Bilton (Imperial) Co-investigator David Taylor-Robinson. June 2015 - July 2019 (£750, 000) David Taylor-Robinson leading Liverpool work package, building on MRC Fellowship work
Collaborator Contribution As above
Impact Successful funding application to UK CF Trust
Start Year 2016
 
Description Centre for Policy Research 
Organisation University College London
Department MRC Centre for Epidemiology for Child Health
Country United Kingdom 
Sector Academic/University 
PI Contribution As part of my MRC Centenary Award, I am on a placement at ICH working on inequalities in child health outcomes in the Millennium Cohort Study
Collaborator Contribution Supported placement at Centre for Policy Research under supervision of Prof Catherine Law
Impact Research placement at ICH, Centre for Policy Research
Start Year 2013
 
Description Cochrane Infectious Diseases Group 
Organisation Liverpool School of Tropical Medicine
Department International Health
Country United Kingdom 
Sector Academic/University 
PI Contribution Cochrane author: Taylor-Robinson DC, Maayan N, Soares-Weiser K, Donegan S, Garner P.Deworming drugs for soil-transmitted intestinal worms in children: effects on nutritional indicators, haemoglobin and school performance. Cochrane Database Syst Rev. 2012 Jul 11;7:CD000371.
Collaborator Contribution Taylor-Robinson DC, Maayan N, Soares-Weiser K, Donegan S, Garner P.Deworming drugs for soil-transmitted intestinal worms in children: effects on nutritional indicators, haemoglobin and school performance. Cochrane Database Syst Rev. 2012 Jul 11;7:CD000371.
Impact Taylor-Robinson DC, Maayan N, Soares-Weiser K, Donegan S, Garner P.Deworming drugs for soil-transmitted intestinal worms in children: effects on nutritional indicators, haemoglobin and school performance. Cochrane Database Syst Rev. 2012 Jul 11;7:CD000371.
Start Year 2007
 
Description DEMETRIQ 
Organisation Erasmus University Rotterdam
Department Department of Public Health
Country Netherlands 
Sector Academic/University 
PI Contribution Member of work package 1 for EU Demetriq project, developing new methods of policy analysis and evaluation of natural experiments, in order to generate new knowledge on differential effects of policies targeting the strategic drivers of health inequalities.
Collaborator Contribution The project involves 7 work streams, in collaboration with 9 European Universities. More details here: http://www.demetriq.eu/project/background/
Impact "Interim guidance for the evaluation of natural policy experiments for their impact on social inequalities in health." This will be published in due course and translated into a number of research outputs.
Start Year 2012
 
Description INRICH 
Organisation Léa-Roback Research Center
Department INRICH
Country Canada 
Sector Public 
PI Contribution International Network for Research on Inequalities in Child Health (INRICH): I have almost completed a systematic review of impact of the current economic and financial crisis on child health in collaboration other INRICH members
Collaborator Contribution As above
Impact Systematic review of impact of the current economic and financial crisis on child health (in draft)
Start Year 2013
 
Description Liverpool, Newcastle, Cambridge modelling 
Organisation Newcastle University
Department School of Mathematics and Statistics
Country United Kingdom 
Sector Academic/University 
PI Contribution Collaboration between myself, Jessica Barrett (MRC Biostats unit and MRC Career Development Fellow), Prof Robin Henderson, Prof. Peter Diggle. The work is motivated by data from the UK cystic fibrosis register that I have been working with. Clinical questions to be addressed using these data include the relationship between lung function and survival in cystic fibrosis patients, which necessitate the use of statistical methodology to jointly model longitudinal and survival data. Jessica Barrett is developing a new approach to joint modelling which will enable greater flexibility in the specification of the longitudinal and survival models, while I am leading clinical work exploring the effect of other covariates on lung function and survival. The dataset is rich in methodological challenges and would lead to innovative future work, including joint modelling with left-truncated data, joint modelling encompassing a relative survival framework, joint modelling with change-point longitudinal models, and application of landmark analysis, a recently developed methodology for predicting patient outcomes. Both Jessica Barrett and David Taylor-Robinson have MRC Centenary Awards to continue this work.
Collaborator Contribution As above
Impact Jessica B, Diggle P, Henderson R, Taylor-Robinson D. Joint Modelling of Repeated Measurements and Time-to-Event Outcomes: Flexible Model Specification and Exact Likelihood Inference (under review Journal of the Royal Statistical Society) Taylor-Robinson D, Whitehead M, Smyth R, Diggle P, Henderson R, Barrett J (2012) Longitudinal Changes in Lung Function and risk of Death in Cystic Fibrosis: developing a Joint Model for the UK Population. Journal of Cystic Fibrosis vol 11 (s1) pp 7 (presented at European CF conference 2012) Jessica Barrett was invited to speak at "The Statistical Analysis of Multi-outcome Data" workshop to be held at the Universite Pierre et Marie Curie in Paris on the 9th and 10th July 2012. The workshop, which aims to bring together international researchers in statistics and biostatistics has a truly international feel with a global list of speakers including experts from China, Japan, USA and Europe. http://www.mrc-bsu.cam.ac.uk/NewsandEvents/previous_news_Jun-Jul2012.html#News_July2012_1
Start Year 2011
 
Description Liverpool, Newcastle, Cambridge modelling 
Organisation University of Cambridge
Department MRC Biostatistics Unit
Country United Kingdom 
Sector Public 
PI Contribution Collaboration between myself, Jessica Barrett (MRC Biostats unit and MRC Career Development Fellow), Prof Robin Henderson, Prof. Peter Diggle. The work is motivated by data from the UK cystic fibrosis register that I have been working with. Clinical questions to be addressed using these data include the relationship between lung function and survival in cystic fibrosis patients, which necessitate the use of statistical methodology to jointly model longitudinal and survival data. Jessica Barrett is developing a new approach to joint modelling which will enable greater flexibility in the specification of the longitudinal and survival models, while I am leading clinical work exploring the effect of other covariates on lung function and survival. The dataset is rich in methodological challenges and would lead to innovative future work, including joint modelling with left-truncated data, joint modelling encompassing a relative survival framework, joint modelling with change-point longitudinal models, and application of landmark analysis, a recently developed methodology for predicting patient outcomes. Both Jessica Barrett and David Taylor-Robinson have MRC Centenary Awards to continue this work.
Collaborator Contribution As above
Impact Jessica B, Diggle P, Henderson R, Taylor-Robinson D. Joint Modelling of Repeated Measurements and Time-to-Event Outcomes: Flexible Model Specification and Exact Likelihood Inference (under review Journal of the Royal Statistical Society) Taylor-Robinson D, Whitehead M, Smyth R, Diggle P, Henderson R, Barrett J (2012) Longitudinal Changes in Lung Function and risk of Death in Cystic Fibrosis: developing a Joint Model for the UK Population. Journal of Cystic Fibrosis vol 11 (s1) pp 7 (presented at European CF conference 2012) Jessica Barrett was invited to speak at "The Statistical Analysis of Multi-outcome Data" workshop to be held at the Universite Pierre et Marie Curie in Paris on the 9th and 10th July 2012. The workshop, which aims to bring together international researchers in statistics and biostatistics has a truly international feel with a global list of speakers including experts from China, Japan, USA and Europe. http://www.mrc-bsu.cam.ac.uk/NewsandEvents/previous_news_Jun-Jul2012.html#News_July2012_1
Start Year 2011
 
Description UK and Danish Cystic Fibrosis Collaboration 
Organisation Aarhus University Hospital
Department Department of Paediatrics
Country Denmark 
Sector Hospitals 
PI Contribution Analysis of the UK and Danish Cystic Fibrosis cohorts, focusing on factors affecting the longitudinal decline of % predicted FEV1 in people with Cystic Fibrosis Collaborators: UK Cystic Fibrosis Trust, University of Liverpool, Lancaster University, University of Copenhagen, Rigshospitalet (Copenhagen), Aarhuus University Hospital (Denmark) 1. The last 12 months (Sept 2009 - current) has involved intensive training in statistical methods in parallel with work on analysis of the UK and Danish Cystic Fibrosis datasets, focusing initially on the longitudinal decline of % predicted FEV1. 2. At Lancaster University I have completed the taught component of an MSc in Applied Social Statistics. This has provided me with a firm grounding in substantive statistical theory, data collection and statistical analysis, using a range of statistical packages. This has been ideal training for the work that I have been undertaking on the CF data. 3. I have been collaborating with the UK CFTrust, to link socioeconomic data to the UK dataset. 4. One of my MRC supervisors in Lancaster, has assisted in the application of novel longitudinal analysis techniques to the UK and Danish datasets. 5. 6 week placement at the University of Copenhagen, accessing the Danish CF register and linking this to social information held by Statistics Denmark. This has involved collaboration with Rigshospitalet (Copenhagen) and Aarhus University Hospital.
Collaborator Contribution Data analysis support and trainingSupporting placement and expertise in data linkeage and analysisProvision of data and analysis supportProvision of data and analysis supportProvision of dataAcademic input into developing hypotheses. Joint work on BMJ editorial.
Impact 2014 update: Qvist T, Gilljam M, Jönsson B, Taylor-Robinson D, Jensen-Fangel S, Wang M, Svahn A, Kötz K, Hansso L , Hollsing A, Hansen C, Finstad P, Pressler T, Høiby N, Katzenstein T. Epidemiology of nontuberculous mycobacteria among patients with cystic fibrosis in Scandinavia. Journal of Cystic Fibrosis doi: 10.1016/j.jcf.2014.08.002 Taylor-Robinson D, Diderichsen F, Olesen HV, Pressler T, Smyth R, Diggle P, Whitehead M. Low socio-economic status is associated with worse lung function in Danish CF population (2014) European Respiratory Journal doi: 10.1183/09031936.00063714 Barrett J, Diggle P, Henderson R, Taylor-Robinson D. Joint Modelling of Repeated Measurements and Time-to-Event Outcomes: Flexible Model Specification and Exact Likelihood Inference. Journal of the Royal Statistical Society Series B (2014) 1. Taylor-Robinson, D., Whitehead, M., Diggle, P., Smyth, R. SOCIOECONOMIC STATUS AND RATE OF DECLINE OF LUNG FUNCTION IN THE UK CYSTIC FIBROSIS POPULATION (abstract). Pediatric Pulmonology 2010 Volume 45, Issue S33, Page 449 2. Datasets: UK and Danish CF registers with linked socioeconomic data Collaboration is multidisciplinary involving: Public health, Clinical paediatrics, Social epidemiologists and Statisticians and the UK CF Trust. 2011 update 1. Taylor-Robinson D, Whitehead M, Olesen HV, Pressler T, Smyth R, Diggle P. Understanding the natural progression in FEV1 decline in patients with cystic fibrosis. Journal of Cystic Fibrosis 2011, 10 Supp 1, p49.(Prize for best abstract http://www.ecfs.eu/meetings_awards/ecfs_awards_ecf_conferences) 2. Taylor-Robinson D, Whitehead M, Olesen HV, Pressler T, Smyth R, Diggle P. The effect of social deprivation on weight in the UK cystic fibrosis population. Journal of Cystic Fibrosis 2011, 10 Supp 1, p72. 3. Taylor-Robinson DC, Schechter MS (2011) Health inequalities and cystic fibrosis. BMJ vol 343:d4818 Invited speaker: Irish CF Conference invited speaker (by Irish CF Conference organising committee) (Killarney, 2011) Centre of Excellence for Public Health, Northern Ireland. Invited speaker, October 2011 see: http://blogs.bmj.com/bmj/2011/10/21/domhnall-macauley-the-high-metal-fences-at-work/ Two papers currently under review: Taylor-Robinson D, Whitehead M, Olesen HV, Pressler T, Smyth R, Diggle P. Understanding the natural progression in %FEV1 decline in patients with lung disease: A longitudinal study (under review at Thorax) Taylor-Robinson D, Whitehead M, Diggle P, Smyth R (2010) The effect of deprivation on weight, height, %FEV1 and pseudomonas acquisition in the UK cystic fibrosis population: A longitudinal study (under review BMJ)
Start Year 2009
 
Description UK and Danish Cystic Fibrosis Collaboration 
Organisation Cystic Fibrosis Trust
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution Analysis of the UK and Danish Cystic Fibrosis cohorts, focusing on factors affecting the longitudinal decline of % predicted FEV1 in people with Cystic Fibrosis Collaborators: UK Cystic Fibrosis Trust, University of Liverpool, Lancaster University, University of Copenhagen, Rigshospitalet (Copenhagen), Aarhuus University Hospital (Denmark) 1. The last 12 months (Sept 2009 - current) has involved intensive training in statistical methods in parallel with work on analysis of the UK and Danish Cystic Fibrosis datasets, focusing initially on the longitudinal decline of % predicted FEV1. 2. At Lancaster University I have completed the taught component of an MSc in Applied Social Statistics. This has provided me with a firm grounding in substantive statistical theory, data collection and statistical analysis, using a range of statistical packages. This has been ideal training for the work that I have been undertaking on the CF data. 3. I have been collaborating with the UK CFTrust, to link socioeconomic data to the UK dataset. 4. One of my MRC supervisors in Lancaster, has assisted in the application of novel longitudinal analysis techniques to the UK and Danish datasets. 5. 6 week placement at the University of Copenhagen, accessing the Danish CF register and linking this to social information held by Statistics Denmark. This has involved collaboration with Rigshospitalet (Copenhagen) and Aarhus University Hospital.
Collaborator Contribution Data analysis support and trainingSupporting placement and expertise in data linkeage and analysisProvision of data and analysis supportProvision of data and analysis supportProvision of dataAcademic input into developing hypotheses. Joint work on BMJ editorial.
Impact 2014 update: Qvist T, Gilljam M, Jönsson B, Taylor-Robinson D, Jensen-Fangel S, Wang M, Svahn A, Kötz K, Hansso L , Hollsing A, Hansen C, Finstad P, Pressler T, Høiby N, Katzenstein T. Epidemiology of nontuberculous mycobacteria among patients with cystic fibrosis in Scandinavia. Journal of Cystic Fibrosis doi: 10.1016/j.jcf.2014.08.002 Taylor-Robinson D, Diderichsen F, Olesen HV, Pressler T, Smyth R, Diggle P, Whitehead M. Low socio-economic status is associated with worse lung function in Danish CF population (2014) European Respiratory Journal doi: 10.1183/09031936.00063714 Barrett J, Diggle P, Henderson R, Taylor-Robinson D. Joint Modelling of Repeated Measurements and Time-to-Event Outcomes: Flexible Model Specification and Exact Likelihood Inference. Journal of the Royal Statistical Society Series B (2014) 1. Taylor-Robinson, D., Whitehead, M., Diggle, P., Smyth, R. SOCIOECONOMIC STATUS AND RATE OF DECLINE OF LUNG FUNCTION IN THE UK CYSTIC FIBROSIS POPULATION (abstract). Pediatric Pulmonology 2010 Volume 45, Issue S33, Page 449 2. Datasets: UK and Danish CF registers with linked socioeconomic data Collaboration is multidisciplinary involving: Public health, Clinical paediatrics, Social epidemiologists and Statisticians and the UK CF Trust. 2011 update 1. Taylor-Robinson D, Whitehead M, Olesen HV, Pressler T, Smyth R, Diggle P. Understanding the natural progression in FEV1 decline in patients with cystic fibrosis. Journal of Cystic Fibrosis 2011, 10 Supp 1, p49.(Prize for best abstract http://www.ecfs.eu/meetings_awards/ecfs_awards_ecf_conferences) 2. Taylor-Robinson D, Whitehead M, Olesen HV, Pressler T, Smyth R, Diggle P. The effect of social deprivation on weight in the UK cystic fibrosis population. Journal of Cystic Fibrosis 2011, 10 Supp 1, p72. 3. Taylor-Robinson DC, Schechter MS (2011) Health inequalities and cystic fibrosis. BMJ vol 343:d4818 Invited speaker: Irish CF Conference invited speaker (by Irish CF Conference organising committee) (Killarney, 2011) Centre of Excellence for Public Health, Northern Ireland. Invited speaker, October 2011 see: http://blogs.bmj.com/bmj/2011/10/21/domhnall-macauley-the-high-metal-fences-at-work/ Two papers currently under review: Taylor-Robinson D, Whitehead M, Olesen HV, Pressler T, Smyth R, Diggle P. Understanding the natural progression in %FEV1 decline in patients with lung disease: A longitudinal study (under review at Thorax) Taylor-Robinson D, Whitehead M, Diggle P, Smyth R (2010) The effect of deprivation on weight, height, %FEV1 and pseudomonas acquisition in the UK cystic fibrosis population: A longitudinal study (under review BMJ)
Start Year 2009
 
Description UK and Danish Cystic Fibrosis Collaboration 
Organisation Emory University
Department Emory School of Medicine
Country United States 
Sector Academic/University 
PI Contribution Analysis of the UK and Danish Cystic Fibrosis cohorts, focusing on factors affecting the longitudinal decline of % predicted FEV1 in people with Cystic Fibrosis Collaborators: UK Cystic Fibrosis Trust, University of Liverpool, Lancaster University, University of Copenhagen, Rigshospitalet (Copenhagen), Aarhuus University Hospital (Denmark) 1. The last 12 months (Sept 2009 - current) has involved intensive training in statistical methods in parallel with work on analysis of the UK and Danish Cystic Fibrosis datasets, focusing initially on the longitudinal decline of % predicted FEV1. 2. At Lancaster University I have completed the taught component of an MSc in Applied Social Statistics. This has provided me with a firm grounding in substantive statistical theory, data collection and statistical analysis, using a range of statistical packages. This has been ideal training for the work that I have been undertaking on the CF data. 3. I have been collaborating with the UK CFTrust, to link socioeconomic data to the UK dataset. 4. One of my MRC supervisors in Lancaster, has assisted in the application of novel longitudinal analysis techniques to the UK and Danish datasets. 5. 6 week placement at the University of Copenhagen, accessing the Danish CF register and linking this to social information held by Statistics Denmark. This has involved collaboration with Rigshospitalet (Copenhagen) and Aarhus University Hospital.
Collaborator Contribution Data analysis support and trainingSupporting placement and expertise in data linkeage and analysisProvision of data and analysis supportProvision of data and analysis supportProvision of dataAcademic input into developing hypotheses. Joint work on BMJ editorial.
Impact 2014 update: Qvist T, Gilljam M, Jönsson B, Taylor-Robinson D, Jensen-Fangel S, Wang M, Svahn A, Kötz K, Hansso L , Hollsing A, Hansen C, Finstad P, Pressler T, Høiby N, Katzenstein T. Epidemiology of nontuberculous mycobacteria among patients with cystic fibrosis in Scandinavia. Journal of Cystic Fibrosis doi: 10.1016/j.jcf.2014.08.002 Taylor-Robinson D, Diderichsen F, Olesen HV, Pressler T, Smyth R, Diggle P, Whitehead M. Low socio-economic status is associated with worse lung function in Danish CF population (2014) European Respiratory Journal doi: 10.1183/09031936.00063714 Barrett J, Diggle P, Henderson R, Taylor-Robinson D. Joint Modelling of Repeated Measurements and Time-to-Event Outcomes: Flexible Model Specification and Exact Likelihood Inference. Journal of the Royal Statistical Society Series B (2014) 1. Taylor-Robinson, D., Whitehead, M., Diggle, P., Smyth, R. SOCIOECONOMIC STATUS AND RATE OF DECLINE OF LUNG FUNCTION IN THE UK CYSTIC FIBROSIS POPULATION (abstract). Pediatric Pulmonology 2010 Volume 45, Issue S33, Page 449 2. Datasets: UK and Danish CF registers with linked socioeconomic data Collaboration is multidisciplinary involving: Public health, Clinical paediatrics, Social epidemiologists and Statisticians and the UK CF Trust. 2011 update 1. Taylor-Robinson D, Whitehead M, Olesen HV, Pressler T, Smyth R, Diggle P. Understanding the natural progression in FEV1 decline in patients with cystic fibrosis. Journal of Cystic Fibrosis 2011, 10 Supp 1, p49.(Prize for best abstract http://www.ecfs.eu/meetings_awards/ecfs_awards_ecf_conferences) 2. Taylor-Robinson D, Whitehead M, Olesen HV, Pressler T, Smyth R, Diggle P. The effect of social deprivation on weight in the UK cystic fibrosis population. Journal of Cystic Fibrosis 2011, 10 Supp 1, p72. 3. Taylor-Robinson DC, Schechter MS (2011) Health inequalities and cystic fibrosis. BMJ vol 343:d4818 Invited speaker: Irish CF Conference invited speaker (by Irish CF Conference organising committee) (Killarney, 2011) Centre of Excellence for Public Health, Northern Ireland. Invited speaker, October 2011 see: http://blogs.bmj.com/bmj/2011/10/21/domhnall-macauley-the-high-metal-fences-at-work/ Two papers currently under review: Taylor-Robinson D, Whitehead M, Olesen HV, Pressler T, Smyth R, Diggle P. Understanding the natural progression in %FEV1 decline in patients with lung disease: A longitudinal study (under review at Thorax) Taylor-Robinson D, Whitehead M, Diggle P, Smyth R (2010) The effect of deprivation on weight, height, %FEV1 and pseudomonas acquisition in the UK cystic fibrosis population: A longitudinal study (under review BMJ)
Start Year 2009
 
Description UK and Danish Cystic Fibrosis Collaboration 
Organisation Lancaster University
Department Faculty of Health and Medicine
Country United Kingdom 
Sector Academic/University 
PI Contribution Analysis of the UK and Danish Cystic Fibrosis cohorts, focusing on factors affecting the longitudinal decline of % predicted FEV1 in people with Cystic Fibrosis Collaborators: UK Cystic Fibrosis Trust, University of Liverpool, Lancaster University, University of Copenhagen, Rigshospitalet (Copenhagen), Aarhuus University Hospital (Denmark) 1. The last 12 months (Sept 2009 - current) has involved intensive training in statistical methods in parallel with work on analysis of the UK and Danish Cystic Fibrosis datasets, focusing initially on the longitudinal decline of % predicted FEV1. 2. At Lancaster University I have completed the taught component of an MSc in Applied Social Statistics. This has provided me with a firm grounding in substantive statistical theory, data collection and statistical analysis, using a range of statistical packages. This has been ideal training for the work that I have been undertaking on the CF data. 3. I have been collaborating with the UK CFTrust, to link socioeconomic data to the UK dataset. 4. One of my MRC supervisors in Lancaster, has assisted in the application of novel longitudinal analysis techniques to the UK and Danish datasets. 5. 6 week placement at the University of Copenhagen, accessing the Danish CF register and linking this to social information held by Statistics Denmark. This has involved collaboration with Rigshospitalet (Copenhagen) and Aarhus University Hospital.
Collaborator Contribution Data analysis support and trainingSupporting placement and expertise in data linkeage and analysisProvision of data and analysis supportProvision of data and analysis supportProvision of dataAcademic input into developing hypotheses. Joint work on BMJ editorial.
Impact 2014 update: Qvist T, Gilljam M, Jönsson B, Taylor-Robinson D, Jensen-Fangel S, Wang M, Svahn A, Kötz K, Hansso L , Hollsing A, Hansen C, Finstad P, Pressler T, Høiby N, Katzenstein T. Epidemiology of nontuberculous mycobacteria among patients with cystic fibrosis in Scandinavia. Journal of Cystic Fibrosis doi: 10.1016/j.jcf.2014.08.002 Taylor-Robinson D, Diderichsen F, Olesen HV, Pressler T, Smyth R, Diggle P, Whitehead M. Low socio-economic status is associated with worse lung function in Danish CF population (2014) European Respiratory Journal doi: 10.1183/09031936.00063714 Barrett J, Diggle P, Henderson R, Taylor-Robinson D. Joint Modelling of Repeated Measurements and Time-to-Event Outcomes: Flexible Model Specification and Exact Likelihood Inference. Journal of the Royal Statistical Society Series B (2014) 1. Taylor-Robinson, D., Whitehead, M., Diggle, P., Smyth, R. SOCIOECONOMIC STATUS AND RATE OF DECLINE OF LUNG FUNCTION IN THE UK CYSTIC FIBROSIS POPULATION (abstract). Pediatric Pulmonology 2010 Volume 45, Issue S33, Page 449 2. Datasets: UK and Danish CF registers with linked socioeconomic data Collaboration is multidisciplinary involving: Public health, Clinical paediatrics, Social epidemiologists and Statisticians and the UK CF Trust. 2011 update 1. Taylor-Robinson D, Whitehead M, Olesen HV, Pressler T, Smyth R, Diggle P. Understanding the natural progression in FEV1 decline in patients with cystic fibrosis. Journal of Cystic Fibrosis 2011, 10 Supp 1, p49.(Prize for best abstract http://www.ecfs.eu/meetings_awards/ecfs_awards_ecf_conferences) 2. Taylor-Robinson D, Whitehead M, Olesen HV, Pressler T, Smyth R, Diggle P. The effect of social deprivation on weight in the UK cystic fibrosis population. Journal of Cystic Fibrosis 2011, 10 Supp 1, p72. 3. Taylor-Robinson DC, Schechter MS (2011) Health inequalities and cystic fibrosis. BMJ vol 343:d4818 Invited speaker: Irish CF Conference invited speaker (by Irish CF Conference organising committee) (Killarney, 2011) Centre of Excellence for Public Health, Northern Ireland. Invited speaker, October 2011 see: http://blogs.bmj.com/bmj/2011/10/21/domhnall-macauley-the-high-metal-fences-at-work/ Two papers currently under review: Taylor-Robinson D, Whitehead M, Olesen HV, Pressler T, Smyth R, Diggle P. Understanding the natural progression in %FEV1 decline in patients with lung disease: A longitudinal study (under review at Thorax) Taylor-Robinson D, Whitehead M, Diggle P, Smyth R (2010) The effect of deprivation on weight, height, %FEV1 and pseudomonas acquisition in the UK cystic fibrosis population: A longitudinal study (under review BMJ)
Start Year 2009
 
Description UK and Danish Cystic Fibrosis Collaboration 
Organisation Rigshospitalet
Department Department of Paediatrics and Adolescent Medicine
Country Denmark 
Sector Hospitals 
PI Contribution Analysis of the UK and Danish Cystic Fibrosis cohorts, focusing on factors affecting the longitudinal decline of % predicted FEV1 in people with Cystic Fibrosis Collaborators: UK Cystic Fibrosis Trust, University of Liverpool, Lancaster University, University of Copenhagen, Rigshospitalet (Copenhagen), Aarhuus University Hospital (Denmark) 1. The last 12 months (Sept 2009 - current) has involved intensive training in statistical methods in parallel with work on analysis of the UK and Danish Cystic Fibrosis datasets, focusing initially on the longitudinal decline of % predicted FEV1. 2. At Lancaster University I have completed the taught component of an MSc in Applied Social Statistics. This has provided me with a firm grounding in substantive statistical theory, data collection and statistical analysis, using a range of statistical packages. This has been ideal training for the work that I have been undertaking on the CF data. 3. I have been collaborating with the UK CFTrust, to link socioeconomic data to the UK dataset. 4. One of my MRC supervisors in Lancaster, has assisted in the application of novel longitudinal analysis techniques to the UK and Danish datasets. 5. 6 week placement at the University of Copenhagen, accessing the Danish CF register and linking this to social information held by Statistics Denmark. This has involved collaboration with Rigshospitalet (Copenhagen) and Aarhus University Hospital.
Collaborator Contribution Data analysis support and trainingSupporting placement and expertise in data linkeage and analysisProvision of data and analysis supportProvision of data and analysis supportProvision of dataAcademic input into developing hypotheses. Joint work on BMJ editorial.
Impact 2014 update: Qvist T, Gilljam M, Jönsson B, Taylor-Robinson D, Jensen-Fangel S, Wang M, Svahn A, Kötz K, Hansso L , Hollsing A, Hansen C, Finstad P, Pressler T, Høiby N, Katzenstein T. Epidemiology of nontuberculous mycobacteria among patients with cystic fibrosis in Scandinavia. Journal of Cystic Fibrosis doi: 10.1016/j.jcf.2014.08.002 Taylor-Robinson D, Diderichsen F, Olesen HV, Pressler T, Smyth R, Diggle P, Whitehead M. Low socio-economic status is associated with worse lung function in Danish CF population (2014) European Respiratory Journal doi: 10.1183/09031936.00063714 Barrett J, Diggle P, Henderson R, Taylor-Robinson D. Joint Modelling of Repeated Measurements and Time-to-Event Outcomes: Flexible Model Specification and Exact Likelihood Inference. Journal of the Royal Statistical Society Series B (2014) 1. Taylor-Robinson, D., Whitehead, M., Diggle, P., Smyth, R. SOCIOECONOMIC STATUS AND RATE OF DECLINE OF LUNG FUNCTION IN THE UK CYSTIC FIBROSIS POPULATION (abstract). Pediatric Pulmonology 2010 Volume 45, Issue S33, Page 449 2. Datasets: UK and Danish CF registers with linked socioeconomic data Collaboration is multidisciplinary involving: Public health, Clinical paediatrics, Social epidemiologists and Statisticians and the UK CF Trust. 2011 update 1. Taylor-Robinson D, Whitehead M, Olesen HV, Pressler T, Smyth R, Diggle P. Understanding the natural progression in FEV1 decline in patients with cystic fibrosis. Journal of Cystic Fibrosis 2011, 10 Supp 1, p49.(Prize for best abstract http://www.ecfs.eu/meetings_awards/ecfs_awards_ecf_conferences) 2. Taylor-Robinson D, Whitehead M, Olesen HV, Pressler T, Smyth R, Diggle P. The effect of social deprivation on weight in the UK cystic fibrosis population. Journal of Cystic Fibrosis 2011, 10 Supp 1, p72. 3. Taylor-Robinson DC, Schechter MS (2011) Health inequalities and cystic fibrosis. BMJ vol 343:d4818 Invited speaker: Irish CF Conference invited speaker (by Irish CF Conference organising committee) (Killarney, 2011) Centre of Excellence for Public Health, Northern Ireland. Invited speaker, October 2011 see: http://blogs.bmj.com/bmj/2011/10/21/domhnall-macauley-the-high-metal-fences-at-work/ Two papers currently under review: Taylor-Robinson D, Whitehead M, Olesen HV, Pressler T, Smyth R, Diggle P. Understanding the natural progression in %FEV1 decline in patients with lung disease: A longitudinal study (under review at Thorax) Taylor-Robinson D, Whitehead M, Diggle P, Smyth R (2010) The effect of deprivation on weight, height, %FEV1 and pseudomonas acquisition in the UK cystic fibrosis population: A longitudinal study (under review BMJ)
Start Year 2009
 
Description UK and Danish Cystic Fibrosis Collaboration 
Organisation University of Copenhagen
Country Denmark 
Sector Academic/University 
PI Contribution Analysis of the UK and Danish Cystic Fibrosis cohorts, focusing on factors affecting the longitudinal decline of % predicted FEV1 in people with Cystic Fibrosis Collaborators: UK Cystic Fibrosis Trust, University of Liverpool, Lancaster University, University of Copenhagen, Rigshospitalet (Copenhagen), Aarhuus University Hospital (Denmark) 1. The last 12 months (Sept 2009 - current) has involved intensive training in statistical methods in parallel with work on analysis of the UK and Danish Cystic Fibrosis datasets, focusing initially on the longitudinal decline of % predicted FEV1. 2. At Lancaster University I have completed the taught component of an MSc in Applied Social Statistics. This has provided me with a firm grounding in substantive statistical theory, data collection and statistical analysis, using a range of statistical packages. This has been ideal training for the work that I have been undertaking on the CF data. 3. I have been collaborating with the UK CFTrust, to link socioeconomic data to the UK dataset. 4. One of my MRC supervisors in Lancaster, has assisted in the application of novel longitudinal analysis techniques to the UK and Danish datasets. 5. 6 week placement at the University of Copenhagen, accessing the Danish CF register and linking this to social information held by Statistics Denmark. This has involved collaboration with Rigshospitalet (Copenhagen) and Aarhus University Hospital.
Collaborator Contribution Data analysis support and trainingSupporting placement and expertise in data linkeage and analysisProvision of data and analysis supportProvision of data and analysis supportProvision of dataAcademic input into developing hypotheses. Joint work on BMJ editorial.
Impact 2014 update: Qvist T, Gilljam M, Jönsson B, Taylor-Robinson D, Jensen-Fangel S, Wang M, Svahn A, Kötz K, Hansso L , Hollsing A, Hansen C, Finstad P, Pressler T, Høiby N, Katzenstein T. Epidemiology of nontuberculous mycobacteria among patients with cystic fibrosis in Scandinavia. Journal of Cystic Fibrosis doi: 10.1016/j.jcf.2014.08.002 Taylor-Robinson D, Diderichsen F, Olesen HV, Pressler T, Smyth R, Diggle P, Whitehead M. Low socio-economic status is associated with worse lung function in Danish CF population (2014) European Respiratory Journal doi: 10.1183/09031936.00063714 Barrett J, Diggle P, Henderson R, Taylor-Robinson D. Joint Modelling of Repeated Measurements and Time-to-Event Outcomes: Flexible Model Specification and Exact Likelihood Inference. Journal of the Royal Statistical Society Series B (2014) 1. Taylor-Robinson, D., Whitehead, M., Diggle, P., Smyth, R. SOCIOECONOMIC STATUS AND RATE OF DECLINE OF LUNG FUNCTION IN THE UK CYSTIC FIBROSIS POPULATION (abstract). Pediatric Pulmonology 2010 Volume 45, Issue S33, Page 449 2. Datasets: UK and Danish CF registers with linked socioeconomic data Collaboration is multidisciplinary involving: Public health, Clinical paediatrics, Social epidemiologists and Statisticians and the UK CF Trust. 2011 update 1. Taylor-Robinson D, Whitehead M, Olesen HV, Pressler T, Smyth R, Diggle P. Understanding the natural progression in FEV1 decline in patients with cystic fibrosis. Journal of Cystic Fibrosis 2011, 10 Supp 1, p49.(Prize for best abstract http://www.ecfs.eu/meetings_awards/ecfs_awards_ecf_conferences) 2. Taylor-Robinson D, Whitehead M, Olesen HV, Pressler T, Smyth R, Diggle P. The effect of social deprivation on weight in the UK cystic fibrosis population. Journal of Cystic Fibrosis 2011, 10 Supp 1, p72. 3. Taylor-Robinson DC, Schechter MS (2011) Health inequalities and cystic fibrosis. BMJ vol 343:d4818 Invited speaker: Irish CF Conference invited speaker (by Irish CF Conference organising committee) (Killarney, 2011) Centre of Excellence for Public Health, Northern Ireland. Invited speaker, October 2011 see: http://blogs.bmj.com/bmj/2011/10/21/domhnall-macauley-the-high-metal-fences-at-work/ Two papers currently under review: Taylor-Robinson D, Whitehead M, Olesen HV, Pressler T, Smyth R, Diggle P. Understanding the natural progression in %FEV1 decline in patients with lung disease: A longitudinal study (under review at Thorax) Taylor-Robinson D, Whitehead M, Diggle P, Smyth R (2010) The effect of deprivation on weight, height, %FEV1 and pseudomonas acquisition in the UK cystic fibrosis population: A longitudinal study (under review BMJ)
Start Year 2009
 
Description WHO Collaborating Centre for Policy Research on Social Determinants of Health 
Organisation World Health Organization (WHO)
Country Global 
Sector Public 
PI Contribution Member of collaborating center. Author of recent WHO document: Milton B, Moonan M, Taylor-Robinson D, Whitehead M. (2011) How can the equity impact of universal policies be evaluated. WHOLIS E95912. Copenhagen, World Health Organisation.
Collaborator Contribution Milton B, Moonan M, Taylor-Robinson D, Whitehead M. (2011) How can the equity impact of universal policies be evaluated. WHOLIS E95912. Copenhagen, World Health Organisation.
Impact Milton B, Moonan M, Taylor-Robinson D, Whitehead M. (2011) How can the equity impact of universal policies be evaluated. WHOLIS E95912. Copenhagen, World Health Organisation.
Start Year 2010
 
Description BBC More or less 
Form Of Engagement Activity A broadcast e.g. TV/radio/film/podcast (other than news/press)
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact More or less radio interview regarding Cochrane review
Year(s) Of Engagement Activity 2015,2016
URL http://www.bbc.co.uk/programmes/p02yg705
 
Description BBC TV interview 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Type Of Presentation Paper Presentation
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact 10 minute interview on effect of recession on suicide (recent BMJ paper) on BBC Look North West


Invited to speak at upcoming suicide prevention conference for CALM (Campaign against Living Miserably)
Year(s) Of Engagement Activity 2012
 
Description BBC radio show on world service about food banks 
Form Of Engagement Activity A broadcast e.g. TV/radio/film/podcast (other than news/press)
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact Radio interview for world service
Year(s) Of Engagement Activity 2015,2016
URL http://www.bbc.co.uk/programmes/p01snj24
 
Description CALM presentation 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? Yes
Type Of Presentation Keynote/Invited Speaker
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact About 50 policymakers attended the presentation, and the discussions at the meeting informed the development of the regional mental health strategy
http://www.thecalmzone.net/2012/12/calmsummit-success/

Informed local policy makers about the mental health effects of the current economic crisis.
Year(s) Of Engagement Activity 2012
URL http://www.thecalmzone.net/2012/12/calmsummit-success/
 
Description CF Trust press release 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? Yes
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Press release published on CF Trust website, and disseminated to media organisations

Ongoing interest and concern on the part of the CF community in relation to the proposed disability benefit changes
Year(s) Of Engagement Activity 2013
URL https://www.cysticfibrosis.org.uk/news/latest-news/mobility-survey-findings.aspx
 
Description European CF conference 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Paper Presentation
Geographic Reach International
Primary Audience Health professionals
Results and Impact Conference presentation:
Taylor-Robinson D, Whitehead M, Smyth R, Diggle P, Henderson R, Barrett J (2012) Longitudinal Changes in Lung Function and risk of Death in Cystic Fibrosis: developing a Joint Model for the UK Population. Journal of Cystic Fibrosis vol 11 (s1) pp 7

http://ecfs2go.org/talk/show/3380433761?show_map=true&source=event_map&id=3380433761?=en

Developed collaboration with colleagues at MRC Biostatistics unit for further work
Year(s) Of Engagement Activity 2012
URL http://ecfs2go.org/talk/show/3380433761?show_map=true&source=event_map&id=3380433761&lang=en
 
Description First Cystic Fibrosis Trust research conference 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? Yes
Type Of Presentation Keynote/Invited Speaker
Geographic Reach International
Primary Audience Participants in your research and patient groups
Results and Impact Presentation entitles: "The effect of socio-economic status on outcomes in CF: a registry-based study"
Event attended by around 150 participants, but also streamed live online to the broader CF community, to make the event accessible to people with CF.

CF Trust are exploring ways to stratify the CF registry data on the basis of socio-economic status, in order to monitor and address health inequalities in outcomes.
Year(s) Of Engagement Activity 2013
URL https://www.cysticfibrosis.org.uk/who-we-are/conferences-and-events/research-conference.aspx
 
Description NACF 2012 - biostatistic workshop 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Type Of Presentation Keynote/Invited Speaker
Geographic Reach International
Primary Audience Health professionals
Results and Impact Invite to present at biostatistics workshop:

"Dear Distinguished Speakers,
We thank you again for accepting our invitation to present at the 2012 NACFC (to be held in Orlando, FL). Our session will occur on Thursday, Oct 11th, 7:30-9:30 a.m. EST. Dr. Ted Liou and I will be co-leading the special topics session focused on statistical issues in CF study design and data analysis."

Interest in new methodology outlined in recent Thorax paper
Year(s) Of Engagement Activity 2012
 
Description North American CF conference (NACF) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation Keynote/Invited Speaker
Geographic Reach International
Primary Audience Health professionals
Results and Impact Invited speaker: NACF 2012, Oct 13th 2012

Taylor-Robinson D, Olesen HV, Pressler T, Thielen K, Diderichsen F, Diggle P, Smyth R, Whitehead M (2012) The effect of socioeconomic status on outcomes in CF. Pediatric Pulmonology vol 47 issue S35 pp 199-200

https://www.nacfconference.org/art/2012%20Preliminary%20Program.pdf

Developed collaborations
Year(s) Of Engagement Activity 2012
URL https://www.nacfconference.org/art/2012%20Preliminary%20Program.pdf
 
Description Presentation to UK Cystic Fibrosis Trust 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Participants in your research and patient groups
Results and Impact Presentation to Registry Team and Chief Executive

UKCF Trust aware of effect of socioeconomic factors on outcomes in CF, and importance to data collection to facilitate analysis stratified by individual level socioeconomic indicators
Year(s) Of Engagement Activity 2009,2010
 
Description UK CFTrust website 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Information posted online following prize for conference presentation:
http://www.cftrust.org.uk/research/ecfsconference
Year(s) Of Engagement Activity 2011
URL http://www.cftrust.org.uk/research/ecfsconference