ICPV Trustees meet face-to-face at least twice a year for formal meetings, at other times business is dealt with by email.
Adrienne was diagnosed with breast cancer in 2005 and secondary breast cancer in 2010.
Adrienne is a PhD medical research scientist and worked for 20 years in academia and industry. After breast cancer she worked in the cancer charity sector, spending three years as the staff scientist at Children with Leukaemia, and then a year as the secretariat for Cancer52 – an umbrella organisation that represents the less common cancers.
She worked as a patient advocate with Breakthrough and Breast Cancer Campaign following her diagnosis and now with the new merged charity Breast Cancer Now. She has been involved with Breast Cancer Now's Cell and Tissue Bank since its inception and is a valued member of the Barts Cell Research Team. She is a lay member of several Clinical Trial Management and Working Groups and a familiar independent patient voice in Q and A sessions at cancer research conferences.
Mairead was diagnosed with breast cancer in 2002. She had chemotherapy, followed by a mastectomy with immediate reconstruction, radiotherapy and endocrine therapy. Since her treatment Mairead has developed mild lymphoedema which is now under control and capsular contraction in her reconstruction which has resulted in the need for further surgery. This has prompted Mairead to feel strongly about the issues and potential problems patients face with the long term effects of cancer treatment.
Mairead has been a member of ICPV since 2009 and currently sits on a number of trial management groups. She is a member of the Breast Cancer Campaign Now Tissue Bank Access Committee, steering group for the UK Therapeutic Cancer Prevention Network, and the ICR CTSU PPI Group.
Mairead is now retired and enjoys gardening, needlework, reading, walking and travelling.
Following a diagnosis of breast cancer several years ago Pat became involved in patient advocacy. Working in healthcare, which included a contract as patient involvement facilitator, gave her a unique insight into the need for patients to be involved at the heart of planning services. Pat developed an interest in research after working at a regional and national level with breast cancer charities, and local cancer services. She joined ICPV as a virtual member whilst living in New Zealand where she carried on with voluntary work with national cancer organisations. Since coming back to the UK Pat has become involved in several research projects through ICPV alongside voluntary work in cancer services regionally and nationally. Pat believes research needs the patients' unique perspective and is absolutely essential in order to make the research work.
Elspeth’s career was in education and before she retired was a secondary headteacher.
Following a diagnosis of malignant melanoma and initial treatment in 1996 Elspeth had recurrences in 2002 and 2004. During this period she had extensive surgery and participated in an EORTC clinical trial.
In 2011 she was invited to join several research groups at the Glasgow Clinical Trials Unit
Her involvement extended to other organisations including the NCRI LWBC Group, the Scottish Cancer Prevention Advisory Committee, the Scottish Cancer Research Network 'Working With Industry' Forum and the ECMC Network Steering and PPI Groups.
Elspeth is a co-applicant and a member of steering groups or trial management groups in respect of a number of clinical trials and intervention studies across the broad range of tumour types and responds to many requests for guidance and advice in reviewing protocols, funding applications and patient information.
She is active in organizing and encouraging patient and public involvement in research activities.
Margaret lives in Belfast and before retirement worked in the NHS for 40 years as a Therapy Radiographer. Margaret had her first breast cancer diagnosis in 2004 and her second diagnosis in 2021. Margaret believes excellence in health care is based on excellence in research and the patient voice is central in this.
As a patient, she has been partnering with researchers since 2010 and sits on a number of trial management and steering groups.
Margaret chairs the National Cancer Institute / Cancer Research UK Cancer Grand Challenges Advocacy Panel and sits on the Scientific Committee.
She is a founder member of the NI Cancer Research Consumer Forum, which she chaired 2011 to 2021, working with the NI Cancer Trials Network. Margaret represents HSC NI on the NCRI Advocacy Forum and HRA/NIHR Shared Commitment Steering Group. Margaret is a facilitator for R&D’s Building Research Partnerships workshop. She co-chaired a sub- group of the new, 10 year, NI Cancer Strategy and following on from that is a member of the Cancer Research Strategy Project Board. Margaret also, co-chairs the Involvement and Priority sub-group of the NI Clinical Research Recovery, Resilience and Growth Oversight Group.
As a member of ICPV, Margaret attended the first VOICE course, in 2013 and would encourage all patient advocates to take the opportunity to experience this unique course.
Margaret was awarded the MBE for services to cancer research in the Queen’s Birthday 2018 Honours List.
David lives on the South Coast in West Sussex, and before retirement was a Print Consultant specialising in Labels for the Food, Pharmaceutical and Beauty packaging.
David was diagnosed with Oesophageal cancer and treatment was an Oesophagectomy in 2006, he set up a support group with the help of the Hospital Upper GI team in December 2006 which is still running today and supports patient and carers across the UK with virtual and face to face meetings.
David’s interest in research came from the new patients at the support group asking about the trial they had been invited to join, so he joined the local Cancer Partnership Research Group to ensure he help patients make an informed decision about their treatment.
David Chaired the OPA (Oesophageal Patients Association) from 2017 t0 2020, and currently is the Vice Chair of the Board for DiCE (Digestive Cancers Europe) and Chair of the DiCE Patient Committee.
David has a number of other roles which include: Lead Governor for the Royal Surrey Cancer Centre, PPIE Representative to the NIHR Kent, Surrey and Sussex CRN Partnership Board, Patient Advocate for the NIHR Academy, Lay Member of the NHS England Leadership Academy, Chair of the EORTC Patient Panel, PPI Interview Panel member for the NIHR Personal / Fellowship Awards.
Also as a Patient Advocate, David is co-applicant and co-author on a number of research trials including one of the Cancer Grand Challenges with Team eDyNAmiC.
David has been a member of ICPV since 2014 and attended the VOICE course in the same year.