Professor Annmarie Nelson

Marie Curie Professor of Supportive and Palliative Care; Scientific Director, Marie Curie Palliative Care Research Centre; Academic Lead for Public Involvement and Engagement, School of Medicine.

School of Medicine

: nelsona9@cardiff.ac.uk
: +44 (0)29 2068 7473
: 8th floor, Neuadd Meirionnydd, University Hospital of Wales, Heath Park, Cardiff, CF14 4YS

Experience

I joined Cardiff University via the Wales Cancer Trials Unit where I worked from 2007-2010. Initially my role was a secondment from the Marie Curie Hospice in Penarth, where I had been working for the previous 17 years. In 2010, my clinical colleagues and I were awarded funding to develop a new research centre, the Marie Curie Palliative Care Research Centre.

The centre has three specified research themes each led by an experienced academic or clinical researcher: Patient and carer experience, Rehabilitation, and VTE and thrombosis with additional projects in all areas of palliative and supportive care, cancer and non- cancer.

My predominant and crosscutting research interest is patient and carer experience of services, interventions, and research. I have worked extensively in palliative care, clinical trials, and with cancer research teams at all stages, from pre-clinical, early diagnosis, supportive and palliative care to the late effects of treatment, following cure, and in different settings, and using multiple methodologies.I have broad research experience and methodological expertise across palliative care and the cancer clinical research spectrum. My research portfolio includes phase 2/3 clinical trials in oncology and supportive care, as well as large-scale surveys, clinical assessment tool development, implementation research, and multi-centre, multi-country qualitative research. I have particular interests in patient experience, interventions, overtreatment, and decision-making, trials methodologies, and the implementation and impact measurement of research outputs into clinical practice.

Current positions:

Marie Curie Professor of Palliative and Supportive Care
Scientific Director Marie Curie Research Centre (MCPCRC), Division of Population Medicine, School of Medicine, Cardiff University
MCPCRC Theme Lead: Patient and carer experience
Honorary Professor Swansea Clinical Trials Unit. School of Medicine, Swansea University.
Palliative and Supportive Care Work Package Lead, Wales Cancer Research Centre (WCRC)
Public and Patient Involvement (PPI) Academic Lead, Wales Cancer Research Centre
Associate Director, Wales Cancer Trials Unit (WCTU).

Marie Curie Professor of Palliative and Supportive Care
Scientific Director Marie Curie Research Centre (MCPCRC), Division of Population Medicine, School of Medicine, Cardiff University
MCPCRC Theme Lead: Patient and carer experience
Palliative and Supportive Care Work Package Lead, Wales Cancer Research Centre (WCRC)
Public and Patient Involvement (PPI) Academic Lead, Wales Cancer Research Centre
Associate Director. Wales Cancer Trials Unit (WCTU).

Qualifications

PhD: Palliative Care as Progressive Journey: The Interplay of Self, Hope and Death in Nurse-Patient Encounters across Three Care Settings. Department of English, Communication and Philosophy. Health Communication Research Centre. Cardiff University.
Post Graduate Diploma in Language and Communication Research (Distinction). Department of English, Communication and Philosophy. Cardiff University.
BA (Hons) English Language and Literature (First Class). Open University.
Diploma in English Language Studies (Distinction). Open University.

Honours and awards

Outstanding Contribution Award for PPI runner up, School of Medicine, Cardiff University. 2016

Prize winner Joanne Muggeridge Research Poster Award. Marie Curie Annual Conference, London

Marie Curie Annual Research Conference, London. 2015

Innovation and Engagement, School of Medicine in December 2012 and 2013.

Academic positions

2008-2010. Marie Curie Senior Research Fellow, Wales Cancer Trials Unit responsible for developing the palliative care clinical trials portfolio, embedded patient experience as secondary outcome measures in clinical trials, and PPI.

Speaking engagements

Invited speaker European Society of Medical Oncology. Madrid September 2017
European Society of Medical Oncology. 201

Committees and reviewing

Member NCRI CSG Palliative and Supportive Care
Honorary Professor Swansea University Clinical Trials Unit
Wales Cancer Research Centre: Member of Senior Operational Group,
Wales Cancer Research Centre: PPI Academic Lead
Wales Cancer Research Centre: Work Package Lead for Palliative and Supportive Care
Wales Cancer Trials Unit: Executive Board, Trial Review Group, Qualitative Lead and Patient and Public Involvement Lead,
Invited reviewer for the MRC Methodology programme, Irish Health Board, Diabetes UK, the NIHR Research for Patient Benefit programme, and for the NIHR Programme Grant for Applied Research.
Cardiff Cancer Collaborative (CCC): Executive board member
Trial Forge: Member of national group working on clinical trials methodology www.trialforge.org
Past Member: NISCHR Registered Research Group: Cancer
Past member: Chair PROMS and patient experience, NCRI group, Psycho oncology
Past Member: NISCHR Registered Research Group: Cancer

I have been involved with the MSc in Palliative Medicine since 2005. This is an international distance learning course with residential modules twice per year. Each year, I deliver around 4-5 lectures on various topics. I have supervised more than 40 students with a 100% pass rate, and a high number of merits and distinctions.

Ongoing or completed MSc projects 2015/2016

MSc: Ms Siobhan Harkin. Mobilising patients with known long bone metastases at risk of pathological fracture. Identifying the key considerations for clinical practice.
MSc: Dr Michelle Hills. Advance care planning for preferred place of death for children and young people with life-limiting and life-threatening conditions: A qualitative study exploring healthcare professionals attitudes and discussions with children, young people and their families
MSc: Mrs Ceri Davies. Attitudes to Sexuality in Specialist Palliative Care Nurses. Awarded Merit.
Awarded RSM prize and MSc merit: Dr Megumi Baba. Comparing knowledge and attitudes to palliative care of paediatric oncologists in the UK and Japan.
MSc: Elaine McGleish. Nurse independent prescribing in palliative care. Awarded distinction

Projects

My portfolio includes research into cancer interventions, management, and decision-making, focusing on colorectal, upper GI, lung, prostate, bladder and brain, and non-cancer disease including respiratory conditions, MND, and dementia support.

I have an interest in trials and study methodologies and the ethics of research in different areas (e.g. mining data from social media, interviewing very ill patients at home, trials equipoise). Another major work stream is the modelling and implementation of Public and Patient Involvement across diverse research groups and organisations.

Grant capture (circa £12million as CI, Co-CI or Co-app)

2015-2018 Cariad: CARer-ADministration of as-needed sub-cutaneous medication for breakthrough symptoms in home-based dying patients: a UK study (CARiAD) NIHR HTA

2016-2017 Survey of palliative care provision to care homes 2. Overall national dataset report
Public Health England.

2017-2018. Attitudes to death and dying survey Velindre End of Life Board.

2017-2022 Marie Curie Palliative Care Research Centre Infrastructure Funding
Marie Curie

Empower Project
2017-2018 Tenovus.

2016-2018 (Co-app) Dr Emily Harrop, Dr Anthony Byrne, Dr Despina Anagnostou, Dr Annmarie Nelson. Development of a core outcome set for bereavement interventions. Marie Curie Cancer Care

2015-2020 (Co-app) Joint lead applicants: Dr Maria Hawkins (Gray Institute for Radiation Oncology and Biology), Dr Somnath Mukherjee (University of Oxford) SCOPE2 - A randomised Phase II/III trial to study radiotherapy dose escalation in patients with oesophageal cancer treated with definitive chemo-radiation with an embedded Phase II trial for patients with a poor early response using positron emission tomography (PET) . CTAAC CRUK

2015-2016 (Co-app) Dr Simon Noble, Dr Annmarie Nelson. The Challenge Pathway Study: An evaluation of an innovative service model for the end of life care of people with dementia. Aneurin Bevan

2015-2018 (Co-app) Dr Anthony Byrne (co-app WCRC £4.5m) Dr Annmarie Nelson, Dr Simon Noble. Wales Cancer Research Centre: Work Package 9 Health and Social Research Wales

2015-2018 (Co-app) Dr Simon Noble, Annmarie Nelson. HIDDEN; DVT Hospice Prevalence observational study. Doppler scans of hospice inpatients to establish prevalence of asymptomatic DVT. HTA

2013-2017 (Co-app) Dr Anthony Byrne, Dr Annmarie Nelson (grant holder), Mr Gareth Griffiths, Baroness Professor Ilora Finlay, , Dr Simon Noble. Infrastructure funding for Marie Curie Palliative Care Research Centre, Wales. Marie Curie Cancer Care

2014-2017. (co Chief Investigator) Dr John Staffurth, Dr Annmarie Nelson et al. EAGLE: ‘Improving the wellbeing of men by evaluating and addressing the gastrointestinal late effects of radical treatment for prostate cancer’. Prostate cancer UK via Movember

2013-2016 (CI) Dr Annmarie Nelson et al. PACT development of an intervention to support lung cancer Patients and their clinicians when considering systemic Anti-Cancer Therapy. Stepping Stones, Velindre NHS Trust Charitable Funds.

2013-2016 (co Chief Investigator) Dr Annmarie Nelson and Dr Simon Noble. PhD studentship: The development and validation of a patient reported outcome measure tool for assessing skin toxicities associated with tyrosine kinase inhibitor administration. Stepping Stones, Velindre NHS Trust Charitable Funds. PhD studentship.

2013-2014 (CI) Dr Annmarie Nelson et al After: Refinement of IWGC questionnaire Tenovus.

2013-2014 (Co-app) Dr John Green, Dr Annmarie Nelson et al. DESIGNER: Development of GI RT symptom assessment tool. Tenovus

2012-2015 (Co-app) Dr Simon Noble, Dr Annmarie Nelson et al. PELICAN: Patient Experience of Living with CANcer associated thrombosis. Leo Pharma.

2012-2014 (Co-app) Dr Simon Noble, Dr Annmarie Nelson et al. TROPHY: Thrombosis Registry of Palliative and Hospice Units. Pfizer

2012-2015 (Co-app) Dr A Byrne, Dr Annmarie Nelson et al. CaNoPy: A study of the Care Needs of Idiopathic Pulmonary Fibrosis (IPF) patients and their carers. Marie Curie Cancer Care.

2012-2015 (Co-app) Dr S Noble, Dr Annmarie Nelson et al. ALICAT: A feasibility study to inform the design of a randomised controlled trial to identify the most clinically and cost effect length of Anticoagulation with Low molecular weight heparin In the treatment of Cancer Associated Thrombosis. NIHR HTA

2012-2018 HTA. (Co-app) Dr Douglas Adamson/Dr Anthony Byrne (CIs) Dr Annmarie Nelson et al. ROCS: Radiotherapy and stent in oesophageal cancer. NIHR HTA

2011-2013 (co Chief Investigator) Dr Simon Noble/Dr Annmarie Nelson et al. Qualfrag. Velindre Charitable Funds Stepping Stones Charity

2011-2012 (Co-app) Dr Anthony Byrne, Dr Annmarie Nelson et al. RECC: Baseline exercise and cachexia study. Tenovus

2010-2013 (Co-app) Dr Anthony Byrne, Dr Annmarie Nelson, Mr Gareth Griffiths, Baroness Professor Ilora Finlay, Prof Tim Maughan, Dr Simon Noble, Dr Andy Fowell. Marie Curie Cancer Care. Infrastructure funding for Marie Curie Palliative Care Research Centre, Wales. Marie Curie Cancer Care

2011-2014 (Co-app) Dr Richard Neal, Dr A Nelson et al. El-CID: Improved lung cancer identification by targeted chest x-ray. NIHR NAEDI

2009-2011 (Co-app) Dr Andrew Wilcock, Dr Annmarie Nelson et al. NMES: Is neuromuscular electrical stimulation an acceptable and feasibly supportive therapy for patients with non-small cell lung cancer receiving palliative chemotherapy? SuPaC

2009-2011 (Co-app) Prof John Kelly, Dr Annmarie Nelson et al. BOLERO: Open versus Laparoscopic or Robotic cystectomy. A study to determine the feasibility of randomisation to open versus minimal access cystectomy in patients with muscle invasive bladder cancer. CRUK

2008-2010. (Co-app) Prof Tim Maughan, Dr Annmarie Nelson et al. FOCUS III: A study to determine the feasibility of molecular selection of therapy in patients with metastatic colorectal cancer Medical Research Council. London

2008-2009 (Co-app) Dr Anthony Byrne, Dr Annmarie Nelson et al. BRITECOG: Validating breathlessness measures for use in patients with lung cancer: a cognitive interview study. Velindre Trust Small Grant Award Committee

2008-2010. (CI) Dr Annmarie Nelson et al. QUALZICE: A QUALitative exploration of the experiences of ZICE clinical trial participants with metastatic breast cancer receiving intravenous or oral bisphosphonates at clinic or home. Velindre Charitable Trusts Scheme.

Palliative and Supportive Care

Treatment decision support for lifr limiting conditions

Late effects of cancer treatment

Patient and Public Involvement

Patient and carer experience

Past projects

Current PhD supervision

Pamela Smith. Smoking cessation in deprived communities. 2017-2020.

MPhil supervision. 2013-2016: Dr Gareth Watts. The development and validation of a patient reported outcome measure tool for assessing skin toxicities associated with tyrosine kinase inhibitor administration. Co-supervisor. Pass.

Undergraduate Medicine Intercalated degree 2017: Rhianna Church. Decisions around dying in palliative and end of life care.Supervisor. Awarded 2.1

Recent completed MSc projects 2014-2016

MSc: Dr Michelle Hills. Advance care planning for preferred place of death for children and young people with life-limiting and life-threatening conditions: A qualitative study exploring healthcare professionals’ attitudes and discussions with children, young people and their families.
Supervisor. Awarded distinction.

MSc: Mrs Ceri Davies. Attitudes to Sexuality in Specialist Palliative Care Nurses.Supervisor
Awarded Merit

MSc: Dr Megumi Baba. Comparing knowledge and attitudes to palliative care of paediatric oncologists in the UK and Japan.Supervisor. Awarded Royal Society of Medicine national prize and MSc merit

MSc: Elaine McGleish. Nurse independent prescribing in palliative care. Supervisor
Awarded distinction