This international collaborative of researchers aims to:
We understand that self-management is an important element of cancer care but we cannot take it for granted that it is always easy or that everyone is able (and willing) to manage all aspects of their health care.
Dr Ray Chan (RN, PhD) holds a joint appointment as Professor of Cancer Nursing, Princess Alexandra Hospital and Queensland University of Technology, Brisbane Australia. Ray holds international leadership roles as a Board Director (Knowledge Dissemination and Translation) of the International Society of Nurses in Cancer Care (ISNCC), as well as Chair for the MASCC Survivorship Study Group.
Dr Chan conducted his PhD in the area of self-management associated with fatigue in cancer survivors with metastatic disease, and is interested in developing and implementing models of care that can best facilitate quality self-management support, and in turn improving outcomes for patients and the health system.
JeffordMBBS, MPH, MHlthServMt Monash, PhD, GCertUniTeach Melb, GAICD, FRACP
Professor Jefford is a Consultant Medical Oncologist and is Director of the Australian Cancer Survivorship Centre, A Richard Pratt legacy, at Peter MacCallum Cancer Centre. He is also a Professorial Fellow with the University of Melbourne. His clinical practice focuses on the management of people with gastrointestinal cancers. His research largely focusses on better understanding issues affecting survivors, studying interventions to improve outcomes, and developing sustainable models of survivorship care.
He has been awarded over $13.5m in grant funding, has published over 150 peer-reviewed manuscripts and book chapters, and has presented work at numerous national and international meetings covering cancer control, clinical oncology and supportive care.
Dr. Lawrence Kasherman is a Medical Oncologist currently based at St George Hospital, Sydney, Australia. After graduating medical school from the University of Newcastle, Australia in 2012, he completed a Masters in Medicine (Clinical Epidemiology) in 2016 and subsequently obtained Fellowship of the Royal Australasian College of Physicians in 2020. Most recently, he has completed a clinical research fellowship with the Gynaecology and Drug Development group at the Princess Margaret Cancer Centre, Toronto, Canada. His research interests include the care of patients of culturally and linguistically diverse backgrounds, with a particular focus on medical interpreter use, as well as novel clinical trial designs and their role in facilitating rapid biomarker and therapeutic development.
Professor Bogda Koczwara is a senior staff specialist in medical oncology and the National Breast Cancer Foundation Fellow. She graduated from Flinders University in 1990 and completed her oncology training at the Roswell Park Cancer Institute in Buffalo, New York. She returned to Flinders in 1997 where she has led the development of the Department of Medical Oncology including establishing one of the first cancer survivorship care programs in Australia.
She is the past President of the Clinical Oncology Society of Australia, the past president of the Medical Oncology Group of Australia, and the initiator and the immediate past Chair the Australia Asia Pacific Clinical Oncology Research Development, a collaborative of international cancer organisations aimed at improving cancer research capacity across Australia and Asia.
Professor Koczwara has been recognized as a Member of the Order of Australia in January 2015 for her services to oncology. In 2018 she was nominated for a prestigious Women who Conquer Cancer Mentorship Award sponsored by the American Society of Clinical Oncology Foundation.
Elke Rammant has a Bachelor of Science in Nutrition and Dietetics and a Master of science in Health Promotion. She is a third year PhD Researcher at the department of Human Structure and Repair at Ghent University in Belgium.
Her current research focuses on improving bladder cancer survivorship. On the one hand she aims to do this by measuring and addressing the unmet supportive care needs of patients with bladder cancer and several other patient-rep orted outcomes (e.g. health-related quality of life (HRQoL), psychological distress).
On the other hand, she aims to improve HRQol by developing and implementing a digital behaviour change intervention to increase physical activity in bladder cancer patients: the POPEYE trial (Pre- and postoperative Physical activity integrated in the Electronic health sYstEm of patients with bladder cancer). The Intervention Mapping approach was used to guide systematic development of the intervention.
Furthermore, Elke is an active member and contributes in several international organisations such as the EORTC QOL group, ISOQOL, and MASCC. In these organisations, she aims to further her experience in methods to measure patient-reported outcomes (e.g. mixed-methods research, validation of questionnaires) and in topics related to exercise-oncology and cancer survivorship (e.g. optimizing referrals to exercise programs).
Doris Howell RN, PhD, FAAN is a health services research as a graduate of the Institute of Health Policy, Management and Evaluation-Outcomes and Evaluation stream, University of Toronto. Currently, she is the RBC Chair, Oncology Nursing Research and Education, University Health Network and Professor, Lawrence S. Bloomberg Faculty of Nursing with a cross-appointment in the Institute of Health Policy, Management and Evaluation (IHPME).
As a Senior Scientist, Department of Psychosocial and Supportive Care, Ontario Cancer Institute and as an Affiliate Scientist with the ELLICSR Health, Wellness & Cancer Survivorship Centre, University Health Network she conducts health intervention research testing the effects of personalized symptom and self-management support interventions in early survivorship on symptom burden, cancer morbidity and health recovery.
She was the Co-Director of the Ontario Patient Reported Outcomes-Symptoms and Toxicity Research Unit (On-PROST) testing the implementation of Patient Reported Outcome Measures (PROMs) in routine clinical practice on health outcomes. Current research includes testing the effects of health service interventions and digital technology innovations such as mobile health remote symptom monitoring and management systems and testing using implementation science the effectiveness of integration of self-management support programs and cancer health coaching as a proactive intervention in the acute phase of cancer.
She also leads PROMs research to examine the psychosocial impact of breast cancer in young women as a member of the pan Canadian RUBY longitudinal cohort study; and on symptom outcomes as member of a population-based symptom research team of the Institute for Clinical Evaluative Sciences (ICES), University of Toronto, Toronto, ON, Canada.
Christoffer Johansen is professor in Cancer Late Effect Research. He has established and developed a research field in two dimensions of cancer survivorship research: what is the risk pattern for physiological and psychosocial late effects of cancer treatment in adult cancer survivors and is it possible to prevent, early detect and establish new treatments of these effects.
Between 2001 and 2018, CJ established the Unit of Survivorship Research at the Danish Cancer Society Research Center. January 2018, CJ moved to a clinical position as Professor in late effects at the Oncology clinic, Rigshospitalet.
This effort (CASTLE) is a dedicated research activity in cancer late effects. In previous academic career he worked in both psychosocial and environmental epidemiology and has discovered that the mind does not cause cancer and that electromagnetic fields in both low and higher frequencies does not seem to play a role in cancer causation in children, adolescence and adults
Professor Richard Fielding is a clinical and health psychologist and was until June 2017 Professor of Medical Psychology in Public Health at the University of Hong Kong (HKU) School of Public Health. He received his Doctorate from the University of Sheffield for research on improving rehabilitation of cardiac patients.
Prior to joining HKU in 1982 he worked for seven years in the National Health Service as a Senior Clinical Psychologist. He was Lecturer, Senior Lecturer and Professor in the Department of Community Medicine, where he was Head of the Behavioural Sciences Unit until its absorption into the newly established HKU School of Public Health in 2013.
He was early contributor to the development of clinical health psychology, an area in which he has continued to innovate. His work on health psychology has a particular focus on psychological and behavioural adaptation in a wide range of physical health problems, including heart diseases, cancer, respiratory epidemic behaviour, health-risk behaviour and chronic pain, and lifestyle and behavioural approaches to rehabilitation and health maintenance.
Dr Wendy Lam joined School of Public Health in September, 2007. She completed her Ph.D. specialized in Psycho-oncology in 2002. She’s the foundation recipient of The Hong Kong Cancer Fund Scholarship in Psycho-oncology for 2001-2002. She is also the recipient of Hiroomi Kawano New Investigator Award, International Psycho-oncology Society (IPOS), for 2007.
Her research interests areas are two-fold: psycho-oncology and research methodology. Her second research interest is in psycho-oncology, particularly focusing on psychosocial adaptation patterns and service optimization in cancer survivorship, as well as symptom control.
Currently, she is exploring how personal factors (such as personality and information processing) and consultation factors (such as adoption of shared decision making model, the use of patient decision aid, and optimizing consultation behavours) influence psychosocial adaption to cancer (and hence related health care demand).
She has made significant novel contributions to the literature resulting from applying her methodological interests to questions in psycho-oncology. Furthermore, she leads the HKU Jockey Club Institute of Cancer Care which aims to develop evidence-based strategies to integrate psychosocial care as a routine cancer care
Gabriella Pravettoni is Full Professor of Psychology of Decision Making at the University of Milan, she is Director of the Psychoncology Division at the European Institue of Oncology in Milan, Director of the Department of Oncology and Hemato-oncology (DIPO) at the University of Milan, Coordinator of Doctorate Folsatec (Foundations of the life sciences and their ethical consequences) at SEMM (European School of Molecular Medicine), Milan, Visiting Professor at King's College, London and Member of the ecancer Scientific Board, UK.
She is member of various prestigious academic associations.
Her main research activities are mainly conducted at the European Institute of Oncology, both at a national and international level. They focus on medical humanities as the main concern is patient empowerment and wellbeing, cognitive processes, decisions in medicine and errors prevention.
Valentina Biagioli RN, MSN, PhD is a Research Fellow at Bambino Gesù Children's Hospital in Rome, Italy, and works in the Health Professional Development, Continuing Education and Research Service. She is a lecturer at ‘Sapienza University of Rome’.
She achieved her PhD in nursing in 2017 at the University of Rome ‘Tor Vergata’ with a thesis addressing the experience of loneliness in patients with haematological malignancies hospitalized in protective isolation. She is author of more than 40 scientific articles.
Her research is focussed on adults and paediatric patients with cancer, patient education and self-care, development of self-report questionnaires to measure self-care based on Riegel's theory, development of apps for tracking symptoms at home in children with haematologic and solid tumours, family caregivers’ contribution to self-care, quality of life and loneliness of patients in isolation, and care dependency.
Enrique Soto Perez de Celis is a medical oncologist working at the National Institute of Medical Science and Nutrition in Mexico City, where he leads the Cancer Care in the Elderly Clinic, the first multidisciplinary Geriatric Oncology clinic in Mexico.
He is a former recipient of a Young Investigator Award and a Long Term International Fellowship from the Conquer Cancer Foundation of the American Society of Clinical Oncology (ASCO). He trained in Geriatric Oncology research under the mentorship of Dr. Arti Hurria in the Cancer and Aging Research Program at City of Hope National Medical Center in the United States.
His research focuses on the use of mobile technology to monitor older adults with cancer receiving chemotherapy and on global disparities in cancer care. He is the national representative of Mexico in SIOG, a member of the Cancer and Aging Research Group (CARG) and a member of the Professional Development Committee of ASCO. His goal is to improve the quality of care provided to older adults with cancer in low and middle income countries.
Dr Chavarri completed a clinical oncology fellowship at the National Institute of Medical Sciences and Nutrition (INCMNSZ) in Mexico City, followed by a fellowship in Breast Cancer Research at Massachusetts General Hospital (MGH) in 2012 and a postdoctoral fellowship in Cancer Genetics at City of Hope in 2017. She obtained a Master’s Degree in Medical Sciences from the National Autonomous University of Mexico.
Currently, she is a member of the faculty at INCMNSZ, dedicated to the treatment of breast cancer patients. She is a Co-Investigator in the international study “Molecular Genetics Studies of Cancer Patients and Their Relatives¨ from City of Hope, and the Principal Investigator in several investigator-initiated basic and epidemiological studies.
Her research focuses on disparities in access to healthcare in cancer, particularly regarding breast cancer. She has investigated issues hampering cancer control in low and middle-income countries, particularly regarding barriers in access to treatment. More recently, she has been interested in studying patient navigation as a strategy to improve access to cancer care.
Irma Verdonck-de Leeuw (1963) graduated as psychologist, speech pathologist, and linguist. She holds the chair Psychosocial Oncology at the Department of Otolaryngology – Head & Neck Surgery of Amsterdam University Medical Centers (location VUmc), and the Section of Clinical Psychology of the Faculty of Behavioural and Movement Sciences, Vrije Universiteit Amsterdam, the Netherlands.
The main aim of her research is to generate knowledge on psycho-oncology and quality of life in cancer patients and their relatives and to assess (cost)effectiveness of supportive cancer care. A special focus is on self-management and eHealth. Irma Verdonck-de Leeuw currently supervises 16 PhD students and is (co-)author of more than 200 publications.
She was program leader of the research program “Quality of life” of Research Institute Cancer Center Amsterdam (CCA) (2011-2018). She was member (Secretary) of the Executive Committee of the EORTC Quality of Life Group (2013-2016), chair of the Study Group Rehabilitation and Cancer Survivorship of the Multinational Association of Supportive Care in Cancer (MASCC) (2012-2016), and board member of the International Association of Logopedics and Phoniatrics (IALP) (2004-2010).
Claire Foster is Professor of Psychosocial Oncology and Director of the Macmillan Survivorship Research Group in the School of Health Sciences, Faculty of Environmental and Life Sciences, University of Southampton, UK.
Her research programme focuses on advancing understanding of the health outcomes and experiences of people diagnosed with cancer, treated with curative intent and self-management support. This includes large prospective UK wide cohort studies including collection of clinical and patient reported questionnaires to understand the consequences of cancer from diagnosis and over time, how this can impact on people’s daily lives, and identifying areas for intervention [e.g. CREW and HORIZONS cohorts].
Claire’s research team has developed and tested web-based resources to support self-management of fatigue following cancer treatment [e.g. RESTORE] and decision aids to support younger women with breast cancer facing decisions about surgery and genetic testing [e.g. Breast Cancer Choices].
New projects are underway to develop web-based resources to support people making complex decisions when living with Motor Neurone Disease (DiAMoND, PI Wheelwright) and increased risk of cancer due to genetic susceptibility (CRUK Catalyst Award, CI Turnbull).
The research team is leading the evaluation of NHS England and Health Education England practice based transformation projects to improve access to nursing and self-management support from the point of cancer diagnosis and following treatment.
Research funding has been awarded from a range of sources including Macmillan Cancer Support, Movember Foundation, National Institute for Health Research, Breast Cancer Now, Prostate Cancer UK, Cancer Research UK, Health Foundation, Roy Castle Lung Cancer Foundation, Marie Curie and MND Association, Dimbleby Cancer Care, Research UK. Claire is a member of Bowel Cancer UK’s Scientific Advisory Board and a member of British Psychosocial Oncology Society Executive.
United States of America
Catherine Alfano, PhD, is an international leader in cancer survivorship and cancer rehabilitation. At Northwell Health, she leads both clinical care design and research across the health system.
Operationally, she develops and oversees the implementation and integration of a high-quality cancer survivorship program for the health system with a goal of reducing unnecessary costs as a result of more timely and effective care while simultaneously improving long-term patient outcomes. She also oversees the growth of new research development and training programs and research projects.
Before joining Northwell, she served as the Vice President of Survivorship at the American Cancer Society where she provided vision and leadership to ACS research, programming, and policy efforts nationwide to improve the lives of cancer survivors. She previously served as the Deputy Director of the National Cancer Institute’s Office of Cancer Survivorship where she created funding opportunity announcements to fill gaps in cancer survivorship and transdisciplinary research and administered a grant portfolio of cancer rehabilitation, symptom management, and behavior change trials.
Dr. Alfano’s research aims to speed the effective translation of research into practice and inform supporting policy to optimize patient outcomes and clinic efficiency, address provider shortages, and decrease healthcare costs. This research focuses on: 1) Domestic and global efforts to improve interventions and models of care delivery for oncology, cancer rehabilitation, and survivorship; 2) Integrating multi-source Big Data including Real World Evidence to generate insights for predictive and prescriptive analytics and creating mobile health and other digital health tools leading to better-personalized care approaches; 3) Incorporating rehabilitation, healthy behavior change, and self-management into oncology and cancer follow-up care; and 4) The integration of biological and behavioral pathways governing health, accelerated aging, function, and cancer prognosis.
In addition to her roles at Northwell, she has led work with the American Society of Clinical Oncology to help American healthcare systems develop risk & need-stratified survivorship care that focuses on helping patients self-manage their health and delivers care outside of clinic walls.
She has held leadership positions as the Chair of the Cancer Special Interest Group of the Society of Behavioral Medicine, and Co-Chair of the American Society of Clinical Oncology Clinical Practice Guideline Panel: Diet, Physical Activity and Weight Management During Cancer Treatment. She has served on the American Society of Clinical Oncology’s Survivorship Committee and Energy Balance Sub-committee, and on the Research Task Force of the American Congress of Rehabilitation Medicine’s Cancer Networking Group.
Catherine Benedict is a clinical psychologist and Clinical Assistant Professor at Stanford University School of Medicine within the Department of Psychiatry and Behavioral Sciences and member of the Stanford Comprehensive Cancer Institute.
She received her doctorate from the University of Miami and completed her fellowship at Memorial Sloan Kettering Cancer Center, with specialized training in psycho-oncology and behavioral science.
Broadly, her research aims to understand how patients make decisions about health and healthcare under conditions of uncertainty and emotional distress and to apply that understanding to intervention development to support self-management related to adherence, fertility and family-building follow-up care, and financial toxicity barriers to care. She is currently the Principal Investigator of two studies funded by the National Cancer Institute, focusing on decision-making and self-management in young adult cancer survivorship related to fertility and family-building post-treatment.
Shawna V. Hudson, PhD is a medical sociologist and her research examines long-term follow-up care for cancer survivors and their transitions from specialist to primary care. She uses qualitative and quantitative research approaches to explore the intersections of community health, primary care and oncology care.
Dr. Hudson received her PhD, MA and BA from Rutgers University. She is Professor and Research Division Chief in the Department of Family Medicine and Community Health and founding director of the Center Advancing Research and Evaluation for Patient-Centered Care (CARE-PC) at the Rutgers Robert Wood Johnson Medical School. She is a full research member of the Rutgers Cancer Institute of New Jersey in the Cancer Prevention and Control Program. She has a secondary faculty appointment in the Rutgers School of Public Health in the Department of Health Behavior, Society & Policy.
Dr. Hudson has authored and co-authored numerous research papers and book chapters. Her work has been featured in Lancet Oncology, JAMA Internal Medicine, Journal of Cancer Survivorship, Annals of Family Medicine, Medical Care, and the Journal of the American Board of Family Medicine.
She has led and participated in various large research studies funded by the National Cancer Institute, the National Institute on Minority Health and Health Disparities, the Centers for Medicare and Medicaid Services and the Robert Wood Johnson Foundation. She is Principal Investigator for the Extended Cancer Education for Longer-term Survivors (EXCELS) in Primary Care (R01CA176838) which uses mixed methods to develop and test a mHealth and health coaching intervention for cancer survivors and Adoption, diffusion and implementation of Tobacco 21 policies to address health disparities (R01CA231139) a mixed methods case study of the implementation and impact of policies that raise minimum legal access to tobacco age to 21 across 15 states in the US. Dr. Hudson has also served on numerous editorial boards, review panels and advisory committees.
She is the Health Disparities Associate Editor for the Journal of Cancer Survivorship which shapes the field by publishing basic research, clinical investigations and policy-related research serving as a home for international research on the increasing worldwide trend in cancer survivorship. She is a member of the ASCO Survivorship Committee. She is a gubernatorial appointed member of the New Jersey Commission on Cancer Research.
She has participated as a scientific advisor for various cancer prevention and control initiatives, studies and expert panels sponsored by the National Cancer Institute, American Cancer Society and Centers for Disease Control. She is a standing member of the NIH Dissemination and Implementation Research in Health (DIRH) Study Section.
Vicki Loerzel is an Assistant Professor at the University of Central Florida College of Nursing. Her research interest are older adults, cancer, quality of life, symptom management, self-management. She has recently concluded an R15 study that developed and tested a technology based intervention to help older adults under treatment for cancer learn how to self-manage CINV, better at home.
Deborah K. Mayer, PhD, RN, AOCN, FAAN is an advanced practice oncology nurse (ANP-BC) who has consulted with organizations on issues to improve cancer care and has over 40 years of cancer nursing practice, education, research, and management experience. Dr. Mayer earned a PhD from the University of Utah, her MSN from Yale University, her BSN from Excelsior College, her Nurse Practitioner Certificate from the University of Maryland, and her diploma from Pennsylvania Hospital School of Nursing.
Dr. Mayer is past president of the Oncology Nursing Society (ONS), was a member of the National Cancer Institute’s National Cancer Advisory Board (a Presidential appointment) and Board of Scientific Advisors. Dr. Mayer was elected as a fellow of the American Academy of Nursing. She is active in ONS and the American Society of Clinical Oncology (ASCO). She served as the Editor for the ONS’ Clinical Journal of Oncology Nursing (CJON) from 2007-2015 and has published over 150 articles, book chapters and editorials on cancer related issues.
She was awarded the ONS Lifetime Achievement Award in 2015 and, in 2016, was appointed as the only nurse to Vice President Biden’s Cancer Moonshot Blue Ribbon Panel. In 2018, she began her role as Interim Director of the Office of Cancer Survivorship with the National Cancer Institute’s Division of Cancer Control and Population Sciences.
Dr. Mayer is on faculty at the School of Nursing at UNC and is the UNC Lineberger Director of Cancer Survivorship. Her program of research focuses on the issues facing cancer survivors and improving cancer care. She has a clinical practice working with breast cancer survivors. As a nurse who works “frontline” with cancer survivors, and as a cancer survivor herself, she brings a unique perspective to her clinical, research and health policy collaborations with cancer survivors and advocates, primary care providers, cancer specialists and researchers.
Lidia Schapira is an Associate Professor of Medicine at Stanford University School of Medicine and Director of Cancer Survivorship at the Stanford Comprehensive Cancer Institute. She is also a member of the Breast Oncology Program at Stanford.
She graduated from Dartmouth Medical School, trained in Internal Medicine at Beth Israel Hospital, and completed a Hematology and Oncology Fellowship at the Brigham and Women's Hospital in Boston, Massachusetts, followed by a Research Fellowship in Aging at Harvard Medical School.
Lidia’s clinical focus is the treatment of breast cancer. She is a Co-Principal Investigator of a longitudinal study of young women with breast cancer based at Dana Farber/Harvard Cancer Institute.
She has also pioneered research and training in communication skills for cancer clinicians and initiatives designed to improve awareness of cancer research and clinical trials in underserved communities. She holds leadership roles in national and international societies.
She serves as Editor-in-Chief of ASCO’s website for the public, Cancer.Net, and is Consultant Editor for Art of Oncology for the Journal of Clinical Oncology.
Dr. Kevin Stein is an Associate Professor in the Behavioral Sciences and Health Education Department of the Rollins School of Public Health at Emory University.
The goals of Dr. Stein’s research are to gain a better understanding of factors related to the physical and psychosocial functioning of persons affected by cancer and to develop, test, and disseminate evidence-based interventions to address these issues. He is the author of over 80 peer reviewed publications.
His work has been published in scientific journals and presented at national and international conferences. Dr. Stein’s research has been funded by agencies such as the National Institutes of Health (NIH), Agency for Healthcare Research and Quality (AHRQ), the Centers for Disease Control and Prevention, (CDC), and the Patient Centered Outcomes Research Institute (PCORI).
Dr. Stein is an active member of the International Psychosocial Oncology Society, American Psychosocial Oncology Society, the International Society of Quality of Life Research, and the Society of Behavioral Medicine. He is a Fellow of the American Psychosocial Oncology Society (FAPOS), a licensed psychologist in the state of Georgia, and a member of the Georgia Psychological Association.
Initially trained as a nurse, Manuela Eicher is an Associate Professor at the Institute of Higher Education and Research in Health Care at University of Lausanne, Switzerland. This includes an appointment as nurse research consultant at the Department of Oncology at University Hospital Lausanne (CHUV).
Her research and teaching focuses on supportive care in cancer including the monitoring and self-management of symptoms, self-management support and the development and implementation of new models of care including specialized nursing and advanced practice nursing. Over the last years, she contributed to teaching and practice standards for cancer nurses at Swiss and European level as well as to establishing academic-practice-partnerships in Switzerland.
Management of Cancer and Health After the Clinic Visit: A Call to Action for Self-Management in Cancer Care | JNCI: Journal of the National Cancer Institute | Oxford Academic (oup.com)
Building Capacity in Cancer Nurses to Deliver Self-management Support: A Call for Action Paper: Cancer Nursing (lww.com)
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