Investigators

Principal Investigator

Dr Penny Wright

Dr Penny Wright
Dr Penny Wright

Penny’s first degree was in psychology prior to undertaking social work training. Her interest was in hospital social work and the impact illness has on the everyday lives of patients and their families. During this time Penny completed a part-time Master’s degree in Psychosocial Palliative Care after which she moved in to research. Penny was one of the founder members of the Psychosocial Oncology Research Group established in 1996. She undertook a part-time PhD which she completed in 2002.

Penny’s research initially focussed on use of electronic systems to exchange information between patients and clinical teams. In parallel with her interest in data exchange she developed an interest in use of Patient Reported Outcome Measures. This resulted in the development of the Social Difficulties Inventory (SDI-21), which is now used in clinical practice and in research. More recently Penny has been involved in a number of projects linking Patient Reported Outcome data with routinely collected clinical data from cancer registries and electronic patient records.

Following some work with Carers Leeds, a local third sector organisation, Penny became interested in carer assessment. Last year she was awarded a grant from the Medical Research Council to develop a questionnaire to assess the quality of life of people who are caring for someone with dementia.

Co-Investigators

Dr Hareth Al-Janabi

Hareth Al-Janabi
Dr Hareth Al-Janabi

Hareth is a senior lecturer in health economics and NIHR career development fellow.  His current research programme focuses on extending economic evaluation methods to better capture the full range of costs and benefits of healthcare interventions. To date he has focused on informal carers, family members, and the development of measures of capability (notably the ICECAP-A). Hareth is experienced in using qualitative techniques (such as in-depth interviews, meta-ethnography, and cognitive interviews) and quantitative techniques (such as preference elicitation and econometrics). Hare is also involved in projects on the impact of welfare reform on families and social values in relation to public health interventions.

Professor Jan Oyebode

Professor Jan Oyebode
Professor Jan Oyebode

Jan’s role in this study is overseeing the initial phases of developing the questionnaire, in which we interview people who care for a relative with dementia to find out more about its impact on their lives.  Our aim is to develop items for the questionnaire that are grounded in people’s real life experiences as told to us in these interviews.  Jan is Professor Dementia Care in the School of Dementia Studies at the University of Bradford.  She has researched widely on topics connected with dementia and old age psychology, supervising over 50 ClinPsyD trainees to successful completion of their doctorate research.  She moved to Bradford to take up her current post in January 2013 and before that combined a career as a clinical psychologist with older people in the NHS with academic roles, working in Merseyside, Newcastle and Birmingham.  Her current research interests focus on relationships in dementia, including cultural influences and also young onset and front-temporal dementias.  More information can be found at : http://www.bradford.ac.uk/health/our-staff/dementia-studies/jan-oyebode.php.

Professor Paul Kind

Paul 1 photo cropped
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 direction following an MSc at Warwick University, England 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 with Rachel Rosser, a UK pioneer in the field of health status measurement. Their collaboration yielded a generic health status index which served as the de facto means of making the quality-adjustment of life years in UK QALY computations for the following decade.

Paul moved to the newly-formed Centre for Health Economics at the University of York in 1981, working alongside Alan Williams 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 with some 200 language versions. Paul has served as past-President of the Group and remains an active participant, being an elected member of its Scientific Executive and is currently the convenor of a Working Group on Large-Scale Health Applications developing methodologies for exploiting routinely collected PROMS data.

Linda Clare, PhD ScD CPsychol FBPsS FAcSS

Linda Clare
Linda Clare

Linda Clare is Professor of Clinical Psychology of Ageing and Dementia at the University of Exeter, where she directs the Centre for Research in Ageing and Cognitive Health (REACH). REACH aims to improve the lives of older people and people with dementia through research that focuses on promoting well-being, preventing or reducing age-related disability, and improving rehabilitation and care. Linda is particularly known for pioneering the application of cognitive rehabilitation approaches for people with early-stage Alzheimer’s disease. Current studies include the IDEAL cohort study investigating factors that influence the ability to live well with dementia and the GREAT trial which examines the efficacy of cognitive rehabilitation for people with early-stage dementia. Other current and recent initiatives investigate the potential for reducing risk of developing dementia through changes in lifestyle and behaviour.

Linda is a clinical psychologist and clinical neuropsychologist, and in 2004 she received the May Davidson award from the British Psychological Society for her contribution to the development of clinical psychology in the UK. She has published over 150 peer-reviewed journal articles and book chapters, and is an Editor for the Cochrane Collaboration’s dementia group and for the journal Neuropsychological Rehabilitation. She is a Fellow of the British Psychological Society, the Gerontological Society of America, and the Academy of Social Sciences. She chairs the British Psychological Society Advisory Group on Dementia and is vice-chair of the Global Council on Brain Health.

Professor Carol Brayne

Carol Brayne
Professor Carol Brayne

Carol Brayne is a Professor of Public Health Medicine in the Department of Public Health and Primary Care in the University of Cambridge. She is a medically qualified epidemiologist and public health academic. She graduated in medicine from the Royal Free Hospital School of Medicine, University of London and went on to train in general medicine. After gaining membership she moved on to training in epidemiology with a Training Fellowship with the Medical Research Council. The research area for this Fellowship was ageing and dementia. Since the mid eighties her main research area has been longitudinal studies of older people following changes over time in cognition, dementia natural history and associated features with a public health perspective. She is lead principal investigator in the group of MRC CFA Studies which have informed and will continue to inform national policy and scientific understanding of dementia in whole populations. She is Director of the Cambridge Institute of Public Health at the University of Cambridge and has played a lead role in teaching and training in epidemiology and public health at Cambridge University.   She is a Fellow of the British Academy of Medical Sciences and a NIHR Senior Investigator.

Dr Zoe Hoare

Dr Zoe Hoare is Principal Statistician at NWORTH (North Wales Organisation for Randomised Trials in Health), a UKCRC registered clinical trials unit based at Bangor University in North Wales.  NWORTH are providing data management facilities for this study.  She has worked on over 20 funded research projects, as part of the trials unit in a statistics and methodology role, in a variety of disease areas.  She has published over 25 peer-reviewed papers in the last 5 years and is currently involved in grants that total approximately £14m.  Her research interests include ransomisation methodology, efficiency of pragmatic trials and composite outcome measures.

Professor Alan Tennant

Professor Alan Tennant

Alan Tennant is a permanent visiting professor for Faculty of Humanities and Social Sciences based in Switzerland.  Following a first degree in the social sciences, he pursued a career in social policy research, and then in epidemiology and health services research. He undertook his PhD at Leeds in the area of community re-integration following Traumatic Brain Injury.  In Leeds in 1998 he established the Psychometric Laboratory for Health Sciences, and secured national and European funding for the standardisation and development of outcome measures as applied to medical outcomes. He was appointed to the Chair of Rehabilitation Studies at The University in 2000, and retired with Emeritus status in June 2014. Subsequently he took up an appointment as Senior Advisor with Swiss Paraplegic Research, Switzerland, alongside an existing appointment as Adjunct Professor in the Department of Education at the University of Western Australia.

Author of over 200 peer reviewed papers he remains involved with an extensive teaching and methodological programme for Rasch analysis, and established the ‘Psylab’ group which is now found in several countries.  His continuing research interests centre upon the impact of chronic disease in general, and musculoskeletal and neurological disorders in particular. The research focuses upon implementation of the bio-psychosocial (ICF) model, and the understanding of moderating and mediating effects upon chronic disease outcomes.  Supporting this is his continuing work on standardisation of outcomes to facilitate comparability. He is advisor to several longitudinal studies looking at various aspects of outcome, including the impact of psycho-social mediators, and impact upon job retention.