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To conduct the study, a core research team was put together, led by principal investigators. This project team worked closely with expert Clinical/Scientific and User Advisory groups as well as clinical and methodological opinion leaders who agreed to collaborate.
Professor Adam Glaser
Adam Glaser is a Consultant Paediatric Oncologist and Late Effects physician at the Leeds Teaching Hospitals NHS Trust. He is a Professor of Paediatric Oncology and Late Effects at the University of Leeds.
Whilst working at the Department of Health as Clinical Director of the National Cancer Survivor Initiative (2010-13), he identified the dearth of robust evidence to suppport the introduction of sustainable services for the increasingly prevalent section of society living with and beyond cancer. Consequently, he led on the development of the National Cancer PROMs (Patient Reported Outcome Measures) Programme and successfully delivered the national colorectal cancer PROMs survey, that largest cancer PROMs exercise in the world to date.
A successful research programme in Leeds focusing on identification of the consequences of living with and beyond cancer has been established. He is currently principal, or co-principal, investigator on in excess of £5 million of research and teaching programmes. These include the Prostate Cancer UK/Movember Foundation funded Life After Prostate Cancer Diagnosis programme and the Yorkshire Cancer Research Bladder Cancer Patient Reported Outcomes Survey. Personal and societal costs of cancer are being explored through the linkage of primary, secondary and tertiary health care records as part of a Macmillan Cancer Support funded programme CPR for Cancer Outcomes: The use of comprehensive patient records (CPR) to define the impact of cancer, co-morbidities and late-effects on individuals and the health service. An innovative clinical research training fellowship programme funded by Candelighters has been established to allow paediatric oncologists in training to obtain high quality research exposure.
Dr Anna Gavin
Anna Gavin, Consultant in Public Health, Reader Centre for Public Health, Queen’s University Belfast and Director of the Northern Ireland Cancer Registry is the national lead for UK initiatives and analysis within the National Cancer Intelligence Network (NCIN).
She is also PI on a Prostate Cancer UK grant comparing patients reported outcomes on the island of Ireland, analysis is ongoing on 3000+ completed surveys. She has experience of international collaboration as a member of the European Network of Cancer Registries and is the Northern Ireland lead for the International Cancer Benchmarking Partnership (ICBP) which is investigating reasons for international cancer survival differences across European, Australian and Canadian jurisdictions.
The Northern Ireland Cancer Registry under her direction has undertaken regular population based audits of prostate cancer care which have policy relevant findings and produce recommendations for service change publications. She plans to audit prostate cancer patients diagnosed in 2012 including all relevant questions from the planned England and Wales audit.
She has ensured that patients are included in all aspects of the Northern Ireland Cancer Registry work from the steering group and council, to having a role in research project steering groups and involvement in reports and their launches.
She is an active member of the UK and Ireland Association of Cancer Registries linking regularly with registry colleagues.
Dr Penny Wright
Following a degree in Psychology and qualification in Social Work, Penny worked as a social worker for seventeen years, the last seven at a regional cancer hospital. In 1996 Penny moved to psychosocial oncology research to work on a project led by Professor Peter Selby on routine electronic collection of quality of life data in cancer practice.
She completed a part-time PhD in 2002 concerned with the social impact of cancer on patients. This led to the development of the Social Difficulties Inventory (SDI-21), which is now used nationally in clinical practice as part of Macmillan Cancer Support’s electronic holistic needs assessment programme and internationally in Canada. In addition, the instrument was used as one of the Patient Reported Outcome Measures (PROMs) in the Department of Health English National CancerPilot and Colorectal PROMs surveys.
In 2009 Penny was awarded a grant funded by Macmillan Cancer Support to determine the feasibility of running a large-scale longitudinal cohort study to assess psychological outcomes in survivors of prostate, breast and colorectal cancer. The project was successful resulting in two of the new technologies being adopted for wider use, and a series of technical, methodological, feasibility and health economic papers published, under review and in preparation.
Professor Eila Watson
Eila Watson is Professor of Supportive Cancer Care at Oxford Brookes University since 2007. Eila is an experienced health services researcher and her main research activity is in the area of cancer survivorship. She has a particular interest in supporting men with prostate cancer and their families and has conducted research in this area over the past 12 years, holding grants from Cancer Research UK, NHS Cancer Screening Programmes, Macmillan Cancer Support and Prostate Cancer UK.
She has conducted both quantitative surveys and qualitative research to explore and describe the experiences and needs of this patient group. Her work has led to numerous publications in peer-reviewed journals, and to a current Prostate Cancer UK-funded pilot trial of a nurse-led intervention delivered in primary care which aims to improve the prostate-related quality of life of prostate cancer survivors.
Eila is currently Chair of the Survivorship sub-group of the National Cancer Research Institute Primary Care Clinical Studies Group, and is a member of the NIHR Research for Patient Benefit Advisory Group, the TENOVUS Psychosocial Advisory Group and the Executive Committee of the British Psychosocial Oncology Society.
Dr Amy Downing
Amy is a Senior Research Fellow in Cancer Epidemiology at the University of Leeds. She has a degree in Human Biology from Loughborough University and has completed a PhD in the use of Accident & Emergency services at the University of Birmingham. She has been at Leeds since 2005.
Her Research has focussed on several different types of cancer including malignant melanoma, breast cancer, colorectal cancer and prostate cancer. Amy has interests in the linkage and analysis of large and complex routinely collected datasets. Recently she was involved in the analysis of the data collected by the colorectal cancer PROMs survey undertaken by NHS England.
Amy had a key role in linking the PROMs data with other datasets, including Hospital Episode Statistics and the Health Survey for England and in analysing the health-related quality of life outcomes of the cancer survivors included in the survey.
As part of the Life After Prostate Cancer Diagnosis team Amy’s role was to lead on the data linkage and analysis of the information provided by men through the surveys.
Professor Paul Kind
Paul has a somewhat unconventional background as an academic researcher in the field of health economics. He studied a variety of subjects including Mathematics, Economics, Psychology and Computer Science before starting life as a systems designer in an engineering research unit. His professional life took a completely different direction following an MSc at Warwick University, in which he studied Microeconomics, Information Sciences and Organisational Psychology.
He worked for the Royal Commission on the National Health Service as an information scientist with a special interest in HAA the pre-cursor to HSE, before taking up a post at Charing Cross Hospital Medical School. He moved to the newly-formed Centre for Health Economics at the University of York in 1981, working on methods for valuing health in economic evaluation. In 1988 he was the first to report hospital-based mortality data for the NHS.
He is a founder member of the EuroQoL Group and for more than 25 years has been involved in every aspect of the scientific development, testing and application of EQ-5D – a generic measure of health status that is now in worldwide use.
His current research interests centres around 3 themes : developing novel methods for the description and valuation of mental health ; use of patient values for health to inform healthcare and decision-making ; meeting management information needs using routinely generated health status data.
Professor Dame Jessica Corner
Jessica is the Dean of the Faculty of Health Sciences and Professor of Cancer and Palliative Care at the Univrsity of Southampton.
One of the first students to graduate with a degree in Nursing from London University, she went on to specialise in Cancer Nursing at the Royal Marsden Hospital. She gained her PhD in 1990 from Kings College London.
Throughout her career she has had a wide range of research interests focused on improving the care and support for people with cancer combining academic, clinical work and research. She is co-chair of the Department of Health Cancer Patient Experience Advisory Group, a body that advises on the Cancer Patient Experience Survey programme in England. Also, a founding member of the Department of Health National Cancer Survivorship Initiative Steering group, leading the work stream related to supporting self-management. She is Chair of the Movember Foundation Global Prostate Cancer Survivorship Steering Committee.
Mr Hugh Butcher
Hugh Butcher has been a patient champion and service user researcher, working with statutory and voluntary sector organisations and groups, over the past six years.
Following work as a mental health social worker, a community worker, and teaching/researching in higher education, he took early retirement from his post of Head of Department in a College of Higher and Further Education in 2006. His academic and research interests centred on citizen action, community practice and participatory democracy.
Following treatment for prostate cancer at York NHS Foundation Trust, and the Institute of Oncology, St James University Hospital, he became immersed in public and patient involvement (PPI) at both local and national levels.
Recent roles include being a member of MacMillan Cancer Support ‘Spiritual Task Force’ and other Macmillan ‘Cancer Voices’ activities, and Co-Chair of Yorkshire Cancer Network User Partnership Group and Co-Chair of York and District Cancer Partnership Group. He has also been involved in numerous Research and Development activities.
Hugh’s experience of user involvement has impressed upon him the centrality of working with patients and carers which empowers them to both work in full partnership with health professionals, and to take greater responsibility for their own health.
Professor Peter Selby CBE
Peter Selby is a consultant physician at St James’ University Hospital, and has worked in cancer research and cancer care since 1976. Peter was Head of Oncology and Cancer Research in Leeds (1988-2010) and was Director of the Leeds Biomedical and Health Research Centre (2008-2012) which linked basic science with translational and clinical research.
From 2000-2004 he initiated and was Director of the National Cancer Research Network. From 2004-2010 he initiated and was Joint Director of the NIHR Clinical Research Network, providing support to clinical research within the NHS and delivering improvements in participation and the quality of research and services.
He was appointed Fellow of the Academy of Medical Sciences in 1998, and awarded a CBE in 2001 for services to cancer research and cancer care. Peter is a Trustee of Cancer Research UK, Chairman of the Cancer Research UK Public Policy Advisory Group and a member of the Cancer Research UK Research Strategy Committee.
Dr Luke Hounsome
Luke Hounsome has been lead analyst for the NCIN Urological Cancers SSCRG since 2009.
He has been involved with a number of projects to understand prostate cancer using routine data, including reports on variations in mortality and treatment.
He has also worked closely with Prostate Cancer UK on differences in lifetime risk between ethnic groups. He has supported a number of peer-reviewed publications investigating aspects of prostate cancer.
Dr Richard Wagland
Richard Wagland has been a senior research fellow in the faculty of Health Sciences at the University of Southampton since 2010, and in that time has undertaken data collection, analysis and project management for several funded research studies in cancer care, investigating quality of life issues, supportive care interventions, patient pathways and PROM development, and utilising quantitative, qualitative, and mixed methods designs.
With reference to work in PROMs, Richard was one of a team who developed a PROM specifically sensitive to nursing service quality for use in ambulatory chemotherapy units (Armes et al 2013), and who are currently developing a set of PROMs measuring service quality reflective of the wider multi-disciplinary team during chemotherapy (Griffiths et al).
He was also involved with analysis of the free-text comments in both the pilot National Cancer Survivorship Survey (Corner & Wagland 2012; Corner et al 2013), and the National Colorectal PROM Survey (England 2013), where he led development of a text mining approach using machine learning algorithms to identify comments on specific ‘hot topics’ within large datasets.
Professor Julia Verne
Julia Verne has been a Consultant in Public Health Medicine since 1996 and has over 20 years’ experience in cancer epidemiology and health services working regionally, nationally and internationally. She has held a wide variety of senior roles and is currently the Public Health England Knowledge & Intelligence Lead for Cancer and Clinical Lead for the National End of Life Care Intelligence Network. Her team has been the NCIN Lead for Urological Cancer since 2008 producing 8 reports and various types of products, and a number of journal publications.
She is currently chairing the NICE Guideline Development Group (GDG) for Bladder Cancer having previously chaired the NICE GDG for Skin Cancer in 2003-06 and its revision in 2009-10. Her team is providing the epidemiological needs assessment for the NICE Bladder Cancer CDG and previously contributed data for the NICE Prostate Cancer GDG in 2007 and Review 2012-13. She had a grant from NAEDI to undertake background work on PROMs for Skin Cancer patients with the University of the West of England in 2012. A literature review was prepared to identify key issues.
Mr Conan Donnelly
Conan Donnelly, research fellow, Centre for Public Health, Queen’s University Belfast, is currently working on a CRUK funded study into early death in cancer patients.
He is also responsible for coordinating the work of the International Cancer Benchmarking Partnership in Northern Ireland including securing funding for the research, co-ordination of clinical advisory and policy groups as well as design and delivery of the NI component of the research programme.
Conan oversees the publication of official statistics in the NICR as well as the ethical approvals for the registry and acquisition of new data sources.