Who was involved
The Steering Group was responsible for coordinating and organising the priority setting process. The group was chaired by Katherine Cowan from the James Lind Alliance (JLA). Katherine was responsible for ensuring that the prioritisation process followed the JLA principles of transparency and equal involvement of patients, carers and clinicians.
Dr Helen Clayson is a former hospice medical director and GP who has been involved in the palliative care of people with mesothelioma since 1995. Her doctoral study investigated the experience of pleural mesothelioma in Northern England from the perspectives of social medicine and palliative care. This led to many teaching opportunities.
She is chair/founder of a support group, CARDS (Cumbria Asbestos-Related Disease Support), and has contributed to national and international meetings concerning mesothelioma. Now retired from clinical practice she is currently leading the SHWAAS project: a community-based breathlessness intervention programme for people with advanced asbestos in Mumbai and Ahmedabad. She is Honorary Medical Adviser to IBAS (International Ban Asbestos Secretariat).
Katherine is the chair of the Steering Group and has been working with the JLA for almost five years. She chairs a number of Priority Setting Partnerships and also co-wrote and edits the JLA online Guidebook on research priority setting. Her role is to ensure the process is undertaken in a fair, rigorous and transparent way, with input from patients, families and healthcare professionals.
Liz is currently a Consultant Nurse and clinical lead for Mesothelioma UK which has established itself as an essential part of the UK Mesothelioma landscape; a centre of excellence providing mesothelioma information, support and education.
Liz is an Honorary Senior Lecturer at the DeMontfort University, Leicester and Associate Lecturer at the Royal Marsden School of Cancer Nursing and Rehabilitation. Liz is ex-chair of the National Lung Cancer Forum for Nurses (NLCFN) and a current active member of the British Thoracic Oncology Group steering committee.
Liz is also proud to be a founding member of the International Thoracic Oncology Nursing Forum which held its inaugural meeting in 2011.
Professor Fennell is a leading thoracic medical oncologist and former Cancer Research UK clinical research fellow. He is a professor and consultant in thoracic Medical oncology based at the Medical Research Council.
A leading UK researcher in thoracic cancers, Dean heads a translational research laboratory in the University of Leicester, exploring mechanisms of drug resistance related to agents under investigation in his investigator led clinical trials in lung cancer and mesothelioma. He was elected president of the International Mesothelioma Interest group in 2012.
John Flanagan has been employed by Merseyside Asbestos Victims Support Group (MAVSG) for the past 17 years. He comes from a trade union background, having campaigned on Health and Safety at work (particularly in construction) since the 1970s. He has held several positions (all voluntary) including Credentialed Shop Steward, Safety Representative, Branch Secretary for UCATT, Vice Chair of the Construction Safety Campaign (CSC) and steering group member of the former Liverpool Occupational Health Project (LOHP). He still attends Liverpool’s Trade Union Council – a trade union group based in Liverpool and the oldest in the world.
Heather was born in Derbyshire. She is a bereaved carer. Her husband Alan was diagnosed with Mesothelioma in November 2006. He had worked with asbestos on a construction site in the late 60's and early 70's. Despite a prognosis of 6 to 9 months, Alan lived for a further five years.
During this time Heather, Alan and family took an active role in supporting others through the Derbyshire Asbestos Support Group, attending conferences, joining Mesothelioma forums and researching as much as they could about Mesothelioma treatments and trials available.
Over the last three years Heather has shared her experiences of Mesothelioma through Patient Participation and Involvement and is also a member of the Lung NSSG (Sheffield) and North Trent Network Patient Partnership.
At the time of this PSP, Sarah was the senior programme manager at NIHR responsible for coordinating the work of the James Lind Alliance (JLA) and the team of JLA advisers. On this PSP steering group, she was a representative of the NIHR, which funded the PSP.
Dr Kate Hill is an applied health researcher with an interest in thoracic cancers (particularly mesothelioma) and long term conditions like cardiovascular disease, stroke and chronic respiratory disease. She has worked in research for almost 20 years, both in the NHS and in academia. She was appointed to her current role as Senior Research Fellow at the University of Leeds in September 2009 to manage a portfolio of vascular themed projects. Kate is also a trustee and director of the June Hancock Mesothelioma Research Fund. Her main role is to manage the charity’s research activities.
Ian Jarrold is the Head of Research at the British Lung Foundation, where he is responsible for managing the charity’s research grants programme, funding world-class research into lung disease in the UK. This work also includes reporting on the outcomes of funded research and communicating about this work to non-scientists.
Chris set up the Mick Knighton Mesothelioma Research Fund in memory of her husband in 2002. So far she has raised over £1m towards four mesothelioma studies and launched the first UK mesothelioma tissue bank (MesobanK) in 2012, all in conjunction with the British Lung Foundation. She was awarded an MBE in 2012 for services to mesothelioma research.
Dr Andrew Lawson was a Medical Ethicist (MSc Med Ethics, Imperial, Distinction 2001), and Honorary Senior Lecturer in Medical Ethics. He was diagnosed with mesothelioma in March 2007. Andrew was Chair of the Royal Berkshire Hospital Clinical Ethics Committee and a medical journalist and author. He was previously a Consultant in Pain Medicine, Anaesthesia and Intensive Care and was a keen supporter of this Priority Setting Partnership. Sadly Andrew died in February 2014.
Dr Peake is Consultant and Senior Lecturer in Respiratory Medicine at the Glenfield Hospital, Leicester. He is Clinical Lead for the National Cancer Intelligence Network and National Lung Cancer Audit. He is Chair of the Board of Trustees of Mesothelioma UK. His major interests are in the early diagnosis and improving outcomes for cancer patients by using clinical outcome data to drive up standards of care.
Dr Sanjay Popat is a Consultant Thoracic Medical Oncologist at The Royal Marsden and Honorary Clinical Senior Lecturer in the Molecular Genetics and Genomics Group at the National Heart and Lung Institute, Imperial College London.
He is a specialist thoracic oncologist, and is an internationally recognised expert in the treatment of lung cancer, mesothelioma and cancers of the thymus (thymoma and thymic carcinoma). He is Chairman of the British Thoracic Oncology Group (BTOG), and also chairs the Advanced Diseases Sub-group of the UK NCRI Lung Cancer Clinical Studies Group.
Dr Rintoul is the lead clinician for Lung Cancer and Mesothelioma at Papworth Hospital, Cambridge. He has a major research interest in mesothelioma. Currently he is the chief investigator for the MesoVATs trial and for the MesobanK project – a national bioresource for mesothelioma. He is a member of the NCRI Lung Cancer Clinical Studies Group and a member of the mesothelioma subgroup.
Graham was born in Nottingham in 1946, graduated in Maths at UMIST and then spent 40 years in IT, mainly with IBM. He was a keen hockey player and all-round sportsman. Married with three sons, Graham is now retired and spends time playing bridge (quite well), writing (not so well), painting (even worse) and coping with one lung (very well). At the time of the PSP, Graham had been diagnosed with mesothelioma for 11 years. Sadly Graham died in 2017.
Dr Mark Slade is a respiratory physician specialising in thoracic malignancy at Papworth Hospital, Cambridge. His particular interest is in interventional techniques for the relief of breathlessness. He is chair of the British Thoracic Society Lung Cancer and Mesothelioma Specialist Advisory Group, and has contributed to clinical guidelines in thoracic malignancy for the BTS and American College of Chest Physicians.
Caroline Whiting is a Research Manager for the James Lind Alliance and coordinated this PSP.