International Society for Quality of Life Research
International Society for Quality of Life Research

Plenary Speaker Bios

Plenary 1: Digital self-tracking to support patient self-management

Bruce Hellman, uMotif, London, United Kingdom

Bruce Hellman is CEO and Co-Founder of uMotif, the leading platform to capture patient-generated data through tools patients love to use. Bruce has been recognized as one of Computer Weekly's UKtech50 Rising Stars, won the Cisco BIG and AXA PPP Healthtech & You awards, and was nominated by Real Business magazine as one of the '30 to watch in mobile'. Bruce began his career in the Civil Service Fast Stream, working in the Department for Culture, Media before further public-service delivery experience at Serco. Following an Executive MBA from Imperial College Business School, Bruce founded uMotif. Bruce is a three-time Ironman finisher.

           

Elizabeth Murray, FRCGP FRCP (Edin) PhD, University College London, London, United Kingdom

Elizabeth Murray is a GP, Professor of eHealth and Primary Care, and Head of the Research Department of Primary Care and Population Health at University College London, UK.  Following a US Harkness Fellowship in Health Care Policy 2001 – 02 she was awarded a Career Scientist Award from the UK Department of Health. Her research has three foci: developing and evaluating digital health interventions; implementation of digital health into routine care; and the impact of digital health on healthcare professional – patient interactions. Elizabeth’s grant income for the past 5 years is around £16 million and she has over 150 publications.

 

Emma Rich,  PhD, University of Bath, Bath, United Kingdom

Dr Emma Rich is a Reader/Associate Professor in Department for Health, University of Bath. Her research examines sport, physical activity and health education from a critical socio-cultural perspective. She is leading a research project funded by the Welcome Trust ‘The Digital Health Generation: The impact of ‘healthy lifestyle’ technologies on young people’s learning, identities and health’. She has published 3 books: Education, Disordered eating and Obesity Discourse: Fat Fabrications (Routledge) The Medicalization of Cyberspace (Routledge) and Debating Obesity: Critical Perspectives. Palgrave Macmillan. Her latest book with Lee Monaghan and Andrea Bombak, ‘Rethinking Obesity: Critical perspectives on research, policy and practice’.

Plenary 2: Cutting Edge Research

The Cutting Edge Research plenary session features some of the highest-ranked, innovative research from ISOQOL abstract submissions. In particular, these abstracts reflect research that truly “pushes the ISOQOL envelope” in providing new and different ways to look at quality of life.

Yuelin Li , PhD, Memorial Sloan Kettering Cancer Center, New York, NY, United States

Dr. Li is a behavioral statistician with a joint appointment in the Department of Psychiatry & Behavioral Sciences and the Department of Epidemiology and Biostatistics.  His current research focuses on analyzing PRO data using Machine Learning analytics, including Latent Dirichlet Allocation (LDA) and Bayesian Nonparametric (BNP) methods.  These methods offer new possibilities in PRO data analysis.  For example, LDA can quantify how cancer patients' goals and priorities change over time using free-text transcripts of what patients say matter the most to them personally.  Patients' goals can now be incorporated to enhance conventional data from fixed-length QOL measures.  Dr. Li also works on making these revolutionary ideas accessible to behavioral scientists, in his tutorials on Bayesian psychometric methods (PMID: 29424559, 22362655, 27193366) and BNP mixture modeling (forthcoming).

 

Kyle Kemp , MSc, PhD Candidate, University of Calgary, Calgary, Alberta, Canada

Kyle Kemp is a PhD candidate in the Department of Community Health Sciences at the University of Calgary. His research explores the relationships between the experiences of patients in Canadian hospitals, quality of life, and outcomes. Kyle has extensive experience using large administrative data sets, and has a keen interest in the use of dynamic data visualizations for reporting and quality improvement purposes. To date, he has authored 25 peer-reviewed manuscripts, and has received awards from the Canadian Institutes of Health Research, the Canadian Association for Health Services and Policy Research, Alberta Innovates, and the Nova Scotia Health Research Foundation.

 

I-Chan Huang, PhD, St. Jude Children's Research Hospital, Memphis, TN, United States

Dr. I-Chan Huang received his PhD from Johns Hopkins University School of Public Health. His training is in health services and outcomes research with an emphasis on PRO measurement in pediatric populations. Currently. Dr. Huang is an Associate Member/Associate Professor in the Department of Epidemiology and Cancer Control at St. Jude Children’s Research Hospital, Tennessee. His research focuses on measuring symptom profiles for pediatric cancer patients and survivors, exploring bio-psycho-social mechanisms of symptom burden, and translating symptom data sciences into clinical interventions. His research has been funded by U.S. National Institutes of Health and National Cancer Institute.

 

Adrian Levitsky , PhD, Karolinska Institutet, Stockholm, Sweden

Adrian Levitsky holds a competitive Postdoctoral Researcher position at the Division for Innovative Care Research at Karolinska Institutet, at both the Department of Learning, Informatics, Management and Ethics, and the Research Group for Cancer Proteomics Mass Spectrometry, Science for Life Laboratory. In his PhD, he focused on implementing personalized medicine and integrative interventions in rheumatoid arthritis. He is currently investigating complex interactions among biological, social, and behavioral factors through bio-behavioral research: linking patients’ first experiences of symptoms with biological data to facilitate earlier diagnosis of lung cancer and add to understanding of how symptoms and bodily sensations are perceived.

 

Plenary 3: Big data to support research and health care

Michael Schull, MD, MS, FRCPC, Institute for Clinical Evaluative Sciences, Toronto, ON, Canada

Michael Schull is President, CEO and Senior Scientist at the Institute for Clinical Evaluative Sciences, and Professor in the Department of Medicine at the University of Toronto. His research focuses on health service utilization, quality of care, health system integration and patient outcomes, and the evaluation of health policy. His studies use administrative health datasets and linkages with clinical data, and he works closely with health system decision and policy makers. Dr. Schull practices as an Emergency Medicine specialist at Sunnybrook Health Sciences Centre in Toronto.

 

David Stillwell, PhD, University of Cambridge, Cambridge, United Kingdom

Dr. David Stillwell is Lecturer in Big Data Analytics and Quantitative Social Science at Judge Business School in the University of Cambridge. He is also Deputy Director of the Psychometrics Centre. David studies the links between online behaviour and psychology; his research with six million Facebook users found that the computer can predict a user’s personality as accurately as their spouse can.

 

 

Emma Uprichard, University of Warwick, Warwick, United Kingdom

Emma Uprichard is Reader at the Centre for Interdisciplinary Methodologies, University of Warwick. She has longstanding interests in the methodological challenge of studying complex social systems across time and space for policy planning purposes. She is currently a Fellow of the Alan Turing Institute, a member of The National Statistician's Data Ethics Advisory Committee (NSDEC) and co-editor of the International Journal of Social Research Methodology. She is also co-investigator on CECAN, the 'Centre for the Evaluation of Complexity Across the Nexus’, a national research centre funded tasked with developing methods for complex evaluation.

Plenary 4: Generalizability of validity data across diseases and treatment settings: when is enough, enough?

Stefan Cano, PhD, CPsychol, AFBPsS, Modus Outcomes, Letchworth Garden City, United Kingdom

Stefan Cano is Co-Founder and Chief Scientific Officer at Modus Outcomes and co-developer of Q-Portfolio instruments for cosmetic, plastic, reconstructive, and cancer surgery called BREAST-Q, FACE-Q, BODY-Q, and CLEFT-Q. He is an Associate Fellow of the British Psychological Society and has 24 years of experience in patient centered outcomes (PCO) research. Stefan is interested in applying and improving mixed methods psychometric research in clinical studies, with a focus on maximizing the interpretability of PCO instruments. He has published 150+ articles in peer review journals. Stefan previously sat on the ISOQOL Board of Directors and served as co-chair of the 17th Annual Conference in 2010.

 

Leah McClimans, PhD, University of South Carolina, Columbia, SC, United States

Leah McClimans is an associate professor in the philosophy department at the University of South Carolina. She is also currently a Marie Curie ASSITID Fellow at University College Cork's School of Nursing. Her research intersects philosophy of measurement with medical ethics. She has authored numerous articles on measurement in quality of life research, clinical ethics and the entanglement of ethics and evidence in medicine. Before coming to South Carolina, Leah was a post-doctoral fellow at the University of Toronto (2006-2007), and also held an Ethox Research Fellowship at the University of Warwick Medical School (2009-2010).

 

Laura Lee Johnson, PhD, U.S. Food and Drug Administration, Silver Spring, MD, United States

Laura Lee Johnson, PhD is an acting division director and the Patient Focused Drug Development liaison for the Office of Biostatistics at the U.S. Food and Drug Administration (FDA) Center for Drug Evaluation and Research (CDER). She specializes in design, logistics, implementation, and analysis of research studies ranging from clinical outcome assessment (COA) qualification to trials of all sizes. She works across FDA on patient focused drug development initiatives. Prior to working at the FDA she spent over a decade at the U.S. National Institutes of Health working on and overseeing clinical research and research support programs.

 

David Cella, PhD, Northwestern University, Evanston, IL, United States

Dr. Cella is currently Professor and Chair of the Department of Medical Social Sciences at Northwestern University Feinberg School of Medicine. He also directs the Center for Patient Centered Outcomes Research at Northwestern’s Institute for Public Health and Medicine. His research interests and accomplishments are focused in the areas of basic measurement research, descriptive studies of quality of life in chronic illness, psychosocial and behavioral health intervention, and the analysis and interpretation of patient-reported outcomes data in clinical trials. Prior to his work on PROMIS, Dr. Cella developed and validated a wide array of questionnaires, known collectively as the Functional Assessment of Chronic Illness Therapy Measurement System (FACIT), that are in wide use internationally.

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