1. The AGE-WELL Experience: Ethical Issues Arising from Research on Technology and Aging
Jeffery Jutai, Professor and Vice-Dean Research, Faculty of Health, University of Ottawa, Age-Well NCE
AGE-WELL NCE (Aging Gracefully across Environments using Technology to Support Wellness, Engagement and Long Life NCE Inc.) is Canada’s technology and aging network. AGE-WELL is dedicated to the creation of technologies and services that benefit older adults and caregivers. Our aim is to help older Canadians maintain their independence, health and quality of life through technologies and services that increase their safety and security, support their independent living, and enhance their social participation.This workshop will present ethical issues that have arisen from AGE-WELL projects and invite discussion about them. As a result of this workshop, participants should be able to describe unique challenges of doing research with persons who are aging and discuss their implications for: (1) the training of researchers; (2) the participation of older adults and their caregivers in the research process; (3) obtaining informed consent; (4) the translation of research into ethically responsible policies and commercial products and services.
2. The Ethics of Research with Infants and Young Children: Challenges and Best Practices
Cristina Atance, Professor, School of Psychology, University of Ottawa
Christopher Fennel, Associate Professor, School of Psychology, University of Ottawa
Tania Zamuner, Department of Linguistics, University of Ottawa
As the conference attendees can appreciate, the ethics surrounding research with especially young participants is more complex than those implicated in standard adult-focussed research studies. There is a deservedly increased burden of protecting the research participants, issues of consent and assent (especially for preverbal participants), and a need to clearly communicate the implications of research findings to a population who is eminently invested in the topic area (i.e., parents care deeply about child development). In this presentation, three researchers who specialize in research with infants and children will discuss and propose best practices for the ethical issues and challenges of working with young children. The researchers also have extensive experience with the ethics process, from departmental-level Ethics committees to serving on university-level REBs. Finally, the presenters will highlight the additional challenges when conducting research with children and parents outside the typical university lab setting (e.g., community-based labs, daycares, etc.).
3. Who owns our data? Trained patients conduct peer-to-peer qualitative research
Svetlana Shklarov, Patient and Community Engagement Research Program (PaCER), Cumming School of Medicine, University of Calgary
Marlyn Gill, PaCER lead researcher, Cumming School of Medicine, University of Calgary
In the world of evidence-based health research, most of research design and implementation is driven by the values and standards of academic institutions, health system researchers, and funding agencies. Ethical oversight of this work is regulated by solid scholarly and professional principles. What if patients and caregivers themselves were designing and conducting health research studies? What if patients were not only providing, but also collecting, managing and interpreting their own data as a basis for formal research studies? This workshop invites participants to explore the journey from research design to data collection and analysis with patients specifically trained to do this kind of work. In such projects patients collaborate with health care providers and researchers, working together in teams on exploring patient experience to bring change to the culture and quality of health care. This model was pioneered at the Patient and Community Engagement Research (PaCER) Program at the University of Calgary, Cumming School of Medicine, supported by Alberta Health Services since 2012. A year-long internship trains patients to design and conduct studies based on adapted methods of collecting and analyzing qualitative data: observation, questionnaires, focus groups and interviews. The workshop will allow the attendees to:
- Explore the experiences of ethical research design and conduct in qualitative research led by patients (based on vignettes and sharing of experiences);
- Identify and analyze specific ethical aspects of data collection and management as part of patient-led research: anonymity, transparency, data ownership, essential patients’ input in data analysis and interpretation, team work and commitment to peer-to-peer ethics; and
- Justify the confidence in safe, ethical research conduct in well-planned patient-led studies.
4. Engaging in End of Life Research
Dianne Godkin, Senior Ethicist; Member on the Joint Centre for Bioethics, University of Toronto and Trillium Health Partners
When a Research Ethics Board (REB) is asked to review a protocol that involves persons who are nearing the end of life, their care providers, their families or others, a number of ethical quandaries (dilemmas), quagmires (complexities) and questions (uncertainty) may arise.In this workshop, an overview of the current literature related to end of life research and research ethics issues and concerns will be provided. With the lifting of the prohibition on assisted death in Canada in 2016, a new area of end of life research has emerged. To date there has been limited discourse around the ethical issues related to conducting research with this particular subset of persons who are nearing the end of life. One issue that might emerge is how to manage a situation where REB members who conscientiously object to the concept of assisted death decline to review protocols with that subject matter. Another is related to what protections might be necessary to build into research operations and research protocols to safeguard individuals (e.g., researchers, participants, REB members) against being targeted or stigmatized because of their involvement in the review or conduct of studies where the focus is assisted death. Additionally, when engaging in research with individuals who have requested an assisted death, what measures can be put in place to ensure that an individual’s participation in the research does not in any way influence their decision about assisted death and their ability to change their mind at any time.Participants will have an opportunity to review several case scenarios, including one related to assisted death, that illustrate various end of life research ethics issues. Strategies that REBs can use to approach these research ethics issues will be identified.
Dr. Atance is a Full Professor and also Director of the Graduate Program in Experimental Psychology at the University of Ottawa, School of Psychology. Her current research examines the development of children’s planning, saving, and future-oriented behaviours, more broadly. She is also interested in how these behaviours are related to children’s mental state reasoning (or “theory of mind”), executive function abilities, and memory capacities. Her research has been funded by the Natural Sciences and Engineering Research Council of Canada, the Social Sciences and Humanities Research Council of Canada, and the Government of Ontario, in the form of an Early Researcher Award. She is Director of the University of Ottawa's Childhood Cognition and Learning Lab and is Co-Director, along with Drs. Fennell and Zamuner, of the brand new Living Lab at the Canada Museum of Science and Technology.
Christopher T. Fennell, Ph.D., currently holds the positions of Associate Professor (Psychology, Linguistics) and Research Chair in Language Learning and Acquisition (The Official Languages and Bilingualism Institute) at the University of Ottawa. His work on language acquisition in infants, particularly those learning two languages, has resulted in publications in top journals and has been well funded by research organizations (NSERC, SSHRC, etc.). Dr. Fennell has extensive experience with university and scientific administration, including as: Assistant Director of the School of Psychology, Director of the Experimental Psychology Graduate program, and a member of the Ethics Board. These experiences have given him direct experience with important issues across diverse research areas. Dr. Fennell also has served on provincial (e.g., Ontario Graduate Scholarship Program) and national (e.g., Social Sciences and Humanities Research Council of Canada) review committees. Via his research speciality of infant language acquisition, Dr. Fennell has also had exposure to clinical/health research and its applications (e.g., work with audiologists and other clinicians).
Marlyn Gill, MSW [email protected] Research Lead, Patient and Community Engagement Research Program (PaCER), Cumming School of Medicine, University of Calgary A member of the original patient engagement research group with the PaCER program, Marlyn has been with PaCER from the beginning of the programme and has completed or is working on a variety of projects with patients, including the areas of Palliative – End of Life Care, Critical Care, Surgery, Bone and Joint Health, and Cancer with Strategic Clinical Networks (SCNs). As well, she is active in research studies for the Libin Institute, Choosing Wisely Canada, and the Ward of the 21st Century (W21C) at the Cumming School of Medicine. Working as a patient engagement researcher has more than compensated for her loss of a high level of physical activity.
Dianne Godkin is Senior Ethicist, Trillium Health Partners (THP) and Co-Chair of the Assistance in Dying Oversight Committee at THP. She has worked as a healthcare ethicist since 2003; prior to this she worked in a variety of clinical, education, and research roles as a nurse. She also has 15 years of experience serving in a variety of positions on a number of Research Ethics Boards and is currently Alternate Vice Chair of THP’s Research Ethics Board. Her prior education includes a Post Graduate Clinical Ethics Fellowship from University of Toronto (2003), PhD (2002) and MN (1992) degrees in nursing from University of Alberta and a BScN (1985) from University of Western Ontario. Her research interests include the use of qualitative methods to explore end-of-life decision-making and advance care planning. She has published on a number of ethics-related issues including a book based on her doctoral research with the title “Living Will, Living Well: Reflections on Preparing an Advance Directive.”
Jeffrey W. Jutai is Full Professor and Vice-Dean Research in the Faculty of Health Sciences at the University of Ottawa. He is past editor-in-chief of the journal Assistive Technology, and co-leader of the research program, "Ethical, Cultural and Social Aspects of Technology" of the AGE-WELL NCE http://agewell-nce.ca/. He is recipient of awards including Excellence in Research (University of Ottawa, Faculty of Health Sciences) and Distinguished Service (RESNA, Multidisciplinary Association for the Advancement of Assistive Technology). Dr. Jutai’s research is focused on studying the factors that affect the outcomes from using assistive technology devices, including how devices are prescribed and how users are educated on how to use them. He directs a program of research on measuring the impact of assistive technologies for persons who are aging with or into disability and for person who provide care to these individuals. Dr. Jutai is co-author of the Psychosocial Impact of Assistive Devices Scale (PIADS) which is available in many international cultural and linguistic translations.
Svetlana Shklarov practiced as a pediatrician in Russia and Israel, and thereafter earned her PhD from the University of Calgary in 2009. She coordinated a ten-year series of Canada-Russia collaboration projects with the Community Rehabilitation and Disability Studies Program at the University of Calgary. These projects focused on mental health service system change, engaged service users, and developed training courses for large, mixed groups of mental health professionals and consumers in nearly twenty-five cities throughout Russia. Svetlana teaches for the Community Rehabilitation and Disability Studies, and for the PaCER program. Her teaching topics include recovery-oriented community mental health, ethical research design and research ethics, and qualitative research methods, mainly grounded theory and narrative method. During the last five years with PaCER, Svetlana oversaw 15 collaborative team projects, including academic research studies, quality improvement and evaluation components. This work was conducted by teams of newly-trained patient researchers and interns, thus requiring extensive teaching and supervision. Svetlana has become the PaCER team’s go-to person for ethical co-design questions, as well as for advice on specific applications of best ethical practices. She is passionate about engaging people labeled as patients, survivors, or service users in health research, QI and evaluation.