The MORECare Applicants: roles and biographies

Professor Irene Higginson, King’s College London

Professor Higginson is the MORECare principle investigator who leads the programme and the final evidence synthesis. Professor Higginson qualified in medicine from Nottingham University and has worked in wide ranging medical and university positions, including radiotherapy and oncology, in-patient and home hospice care, the Department of Health (England), and various universities. She has been at King's as Professor and Head of Department since October 1996. In 2002 she was appointed Scientific Director of Cicely Saunders International, a new charity seeking to develop a centre of research in palliative care to improve care for patients and families. She has research interests and publications in the following areas:

• quality of life and outcome measurements
• evaluation of palliative care services and interventions
• epidemiology
• clinical audit and effectiveness
• psychosocial factors and care
• symptom assessment
• cachexia/anorexia
• elderly care

 

Professor Chris Todd, University of Manchester

Professor Todd leads the MORECare consultation with stakeholders and is a major contributor to the final evidence synthesis. Professor Todd read Psychology at the University of Durham obtaining BA, MA and PhD. As a post-doc he worked at the University of Ulster before moving to the Department of Public Health and Primary Care, at the Institute of Public Health, University of Cambridge. Here he became Director of the Health Services Research Group and Fellow of Wolfson College.  In 2001, he was appointed to his Chair at The University of Manchester and is currently Director of Research for the School recognised as the top research school in nursing in the UK RAE2008 government review. He has two parallel research interests: (i) supportive and palliative care; and (ii) fall prevention in old age. He has held grants from UK Department of Health, National Institute of Health Research, NHS, NCRI, MRC, European Commission and research charities including CRUK, BCC and Dimbleby Cancer Care. He is Director of the Prevention of Falls Network Europe (ProFaNE) and leads the Cancer Experiences Collaborative (CECo) Methodology Theme and is a member of the CECo executive. He is a member of the Research Advisory Board of Dimbleby Cancer Care.

 

Professor Matthew Hotopf, King’s College London

Professor Hotopf provides expertise in mental capacity, the development of trial methods and the measurement of mental health outcomes. Professor Hotopf trained in psychiatry at the Maudsley Hospital, and in epidemiology at the London School of Hygiene and Tropical Medicine. Research interests are in the grey area between medicine and psychiatry, including medically unexplained symptoms; mechanisms of fatigue; depression and anxiety in the context of physical disease; military health; and the assessment of mental capacity. He has an interest in research methodology and evidence based medicine. He is an NIHR Senior Investigator. He works clinically within King’s College Hospital and is visiting psychiatrist to St Christopher’s Hospice.

 

Dr Paul McCrone, King’s College London

Dr McCrone's expertise is in health economic methods, in particular ways to collect data on formal (health, social and voluntary sector) and informal health care utilization and costs, and analysis of health outcomes for cost-effectiveness and cost-utility. Dr McCrone is a Reader in Health Economics at the Institute of Psychiatry (King’s College London), where he has worked for 13 years moving from the University of Kent. He has worked on a large number of health economic studies in mental health (mainly for psychoses and depression) and in other areas (particularly neurology and palliative care). Key interests are the use of the net benefit approach in economic evaluations and the use of decision tree modelling (for example in evaluations of early intervention services and anti-stigma campaigns). He has successfully obtained funding for research activities and has published widely in peer-reviewed journals. He also teaches health economics at Masters level and supervises PhD students.

 

Professor Myfanwy Morgan, King’s College London

Professor Morgan's role is advising on the use of qualitative research methods to understand interventions and integration / mixed method approaches and cultural aspects of measurement. Professor Morgan studied Sociology at London University (Bedford College) and at the University of Massachusetts. On returning to the UK, she worked at the Department of Health and then joined the Health Services Research Unit at the University of Kent where she combined research and teaching, developing one of the first BSc level courses in Medical Sociology and a textbook: Sociological Approaches to Health and Medicine. Subsequently she joined St Thomas' Hospital as a lecturer and is currently a Reader in Sociology of Health. Her research focuses on patients' perspectives and the management of chronic illness with particular emphasis on: issues of adherence with prescribed medicines, particularly among ethnic minorities; and patients' experiences of health care and the delivery of services.

 

Dr. Richard Harding, King’s College London

Dr Harding brings expertise on patient related outcome measurement, with a particular focus on the evaluation of interventions for caregivers and intervention development. Dr Harding originally read social anthropology and conducted fieldwork in the Netherlands, followed by a Masters in Social Policy & Social Work Studies at the LSE. His PhD addressed informal carers in palliative care. His clinical experience includes HIV and palliative care management, acute adult health hospital social work and community care management. His academic interests in palliative care are informal carers, HIV, palliative care provision in Africa, and evaluation of complex interventions. His broader interests are in behavioural interventions and HIV prevention. His current work is focused on palliative care in Sub-Saharan Africa.

 

Dr Gunn Grande, University of Manchester

Dr Grande's particular areas are advising on pragmatic RCT design, mixed methods, caregiver research, psychological variables and measurement, and evaluation of EoL care in the home. Dr Grande has worked in cancer and palliative care research since 1992. She initially worked with the Cambridgeshire Family Health Services Authority on a study into domiciliary palliative care before moving on to the Health Services Research Group at the Department of Public Health and Primary Care, University of Cambridge. There she worked on a large scale evaluation of Hospital at Home for Palliative Care, which included a randomised controlled trial. Since 2002, she has been based at the School of Nursing, Midwifery & Social Work at the University of Manchester. Her background is in psychology and she worked at the MRC Applied Psychology Unit in Cambridge before moving into palliative care research. She has in later years expanded and updated her psychology theory base through an MSc in Health Psychology at UCL/King's College London, courtesy of a Post Doctoral Research Fellowship. This has enabled her to better incorporate current evidence from health psychology into her work in cancer and palliative care.

 

Professor Scott Murray, University of Edinburgh

Professor Murray has extensive expertise on user involvement, evaluation of EoL care services in primary care settings and qualitative research. Professor Murray leads the Primary Palliative Care Research Group which is a multi-disciplinary team based in General Practice at the University of Edinburgh. This group seeks to understand the experiences of patients with life limiting illnesses and their carers, and to develop and test best models of holistic care throughout the last year of life.

 

Professor Penney Lewis, King’s College London

Professor Lewis provides expertise on legal and ethical aspects, and identifies and links to relevant ethical and legal bodies and expertise. Professor Lewis teaches Medical Law and Law at the End of Life in the Centre of Medical Law and Ethics and the School of Law.  In the area of medical law, her research focuses on end of life issues including advance decision-making and refusal of treatment. She is the author of a number of articles on assisted dying and her monograph Assisted Dying and Legal Change was published in 2007 by Oxford University Press. Her work has examined assisted dying law and practice and the process of legal change in the Netherlands, Belgium, France, and England and Wales. In 2005, she testified before the House of Lords Select Committee on the Assisted Dying for the Terminally Ill Bill, and in 2010 she briefed and will also testify before the End of Life Assistance (Scotland) Bill Committee of the Scottish Parliament. She has also published articles and chapters dealing with a wide range of medical law topics, including wrongful life, medical treatment of children and medical procedures which are against the interests of incompetent adults, such as non-therapeutic research. She is a member of the UK Donation Ethics Committee, Vice-Chair of the King’s College London Research Ethics Committee and a member of the Clinical Ethics Committee of St Christopher’s Hospice

 

Professor Peter Fayers, University of Aberdeen

Professor Fayers brings expertise in outcome and quality of life measurement, trial and longitudinal data analysis and response shift, and assists in identifying other statistical expertise and approaches. Professor Fayers is Professor of Medical Statistics and a visiting professor at Trondheim University (NTNU), and KCL (Department of Palliative Care, Policy and Rehabilitation). His main research interest is patient reported outcomes and subjective indicators, particularly in quality of life research. He has worked on health related quality of life (HRQL) assessment in diverse clinical areas: oncology, palliative care, children with asthma, Alzheimer's patients, home parenteral nutrition, Paget's disease, and orthopaedics. Methodological interests include:  comparison of different approaches for developing new HRQL instruments; statistical methods for analysing repeated measurements when there are missing data; cross-cultural analyses of HRQL data; the assessment of pain (and cognitive functioning) in palliative care; use of item-response theory (IRT) for shortening existing questionnaires, and for computer-adaptive instruments; genetic association studies on patients receiving palliative care, with end points involving pain and opioid use, nausea and vomiting, cachexia and appetite, and constipation; response shift and other adaptive processes that affect the assessment of patient reported outcomes; treatment trials in multiple myeloma; and assessment of HRQL in patients receiving home parenteral nutrition.

The MORECare Research Fellows and Associate

Dr Catherine Evans, Senior Research Fellow King’s College London

Dr Evans is the MORECare senior research fellow undertaking the literature scoping, literature reviews, workshops and day-to-day organisation of the project. Dr Evans qualified as a registered nurse in London, practicing in oncology and haematology, and then moved into primary health care completing a BSc Community nursing (1994), and practiced as a health visitor and district nurse. She undertook an MSc Gerontology (2001) and PhD Nursing (2007) at King’s College London. Her PhD examined experiences and representations of older people’s health living in a care home to enlighten district nursing practice. Her research interests focus on methods of evaluating complex interventions in health care, promoting the health of the very old, end of life care for non-cancer groups, and the development of primary health care nursing practice. 

Dr Nancy Preston, Senior Research Fellow University of Manchester

Nancy Preston is a Senior Research Fellow in the School of Nursing and Midwifery working on the MORECare Project with Professor Chris Todd and Dr Gunn Grande. She is primarily undertaking the stakeholder consultations and helping with the expert think-tanks. She works on the project two days a weeks. Nancy also works for the Cancer Experiences Collaborative (CECo) where she co-leads the methodology theme with Professor Chris Todd. She is based in the International Observatory on End of Life, Lancaster University.  Her work includes a systematic review on recruitment via healthcare professionals to research studies and the development of Patient Reported Outcome Measures in Gynaecological cancers. She is also developing work related to the use of blood transfusions in end of life care with Professor Mike Bennett at Lancaster. Nancy originally trained as a nurse and worked in London for a number of years. She specialised in cancer care and worked as a research nurse on clinical trials in ovarian cancer, developing a research interest in the management of malignant ascites. Her PhD from the Institute of Cancer Research, University of London, involved a number of studies developing a novel intervention for the management of malignant ascites and evaluating the impact of ascites on women's well-being. Prior to this, Nancy worked as a systematic review fellow at the Royal College of Nursing Institute, Oxford in conjunction with the Cochrane Collaboration, working on reviews relevant to supportive and palliative care.

Dr. Marjolein Gysels, Senior Research Fellow King’s College London

Dr. Gysels is a MORECare research fellow, systematically reviewing the literature on attitudes to participation in research on palliative and EoL care. Dr Gysels studied African linguistics at the University of Ghent (Belgium), and received a PhD in 1996 in cultural anthropology from the University of Amsterdam. She conducted ethnographic research in D.R. Congo on Swahili and oral literature and worked on HIV/AIDS related projects in Tanzania focusing on female infertility, commercial sex workers and truck drivers. Since 2001, she has undertake research on palliative care, KCL, including the research evidence manual for the NICE Guidance on Supportive and Palliative Care, a scoping exercise on generalist services for adults at the end of life, funded by the UK NHS Service Delivery and Organisation (SDO), and managed a programme on breathlessness. In 2006, she joined CRESIB at the University of Barcelona, managing a programme across five African countries investigating the acceptability of intermittent preventive treatment in infants (IPTi), and later led a component of the EU FP7 PRISMA project (KCL) aimed at developing an understanding of cultural issues in end of life care.  

 

Ms. Despina Anagnostou, PhD Student, King’s College London

Ms Anagnostou is a MORECare research associate systematically reviewing the literature on recruitment of patients and carers in palliative and EoL care research studies. Ms. Anagnostou is visiting the Cicely Saunders Institute at KCL to work on her PhD.  She completed her first degree in nursing in Athens, and an MSc in advanced nursing in cancer and palliative care from the University of Edinburgh. Her PhD examines cancer patients' experience of their illness and care at the end of life in Greece.  She is supported by the Red Cross Hospital of Athens and a scholarship from the Foundation of Greece.

 

Members of the MORECare Project Advisory Group

The MORECare Project Advisory Group advises and guides the study. The group comprises representatives with expertise in research methods and/or developing services in palliative and EoL care from voluntary and statutory organisations in health and social care, academics, practitioners and lay participants.

• Dr. Massimo Costantini, Consultant in Clinical Epidemiology and Director of the Regional Palliative Care Network, National Cancer Institute, Genoa
• Dr. Steve Dewar, Director of Research and Innovation,  Marie Curie Cancer Care
• Professor John Ellershaw, Professor of Palliative Medicine, Director of the Marie Curie Palliative Care Institute,  University of Liverpool
• Ms. Claire Henry, Programme Director National End of life care,  NHS EoLC Programme
• Dr. Will Hollingworth, Reader in Health Economics, University of Bristol
• Mr. Philip Hurst, National Development Manager for Health, Age UK
• Ms. Tessa Inge, Head of End of Life Care, Department of Health
• Dr. Karl Lorenz,  Director of Palliative Care, VA Centre for the Study of Healthcare Provider Behaviour, VA Greater Los Angeles Healthcare System
• Dr Jane Maher, Chief Medical Officer Macmillan Cancer Support
• Dr Elizabeth Murray, Reader in Primary Care, Director of the e-Health Unit, University College London
• Professor Ann Netten, Professor of Social Welfare, Director PSSRU, University of Kent
• Professor Alicia O'Cathain, Professor of Health Services Research,  University of Sheffield
• Professor Sheila Payne, Help the Hospices Chair in Hospice Studies, Director of the International Observatory on End of Life Care, Co-director of the Cancer Experiences Collaborative,  Lancaster University
• Dr. Wendy Prentice, Consultant in Palliative Care, King’s College Hospital/King’s College London
• Professor Roland Petchey Professor of Health Services Research and Policy and Director of the Centre for Allied Health Professions Research, City University
• Professor Rajan Madhok, Medical Director, NHS Manchester
• Dr. Celia A Taylor, Senior Lecturer in Medical Education,  University of Birmingham