OCAP Training Feedback
This past Spring, CDTRP was pleased to offer limited number of spaces in The First Nations Principles of Ownership, Control, Access, and Possession (OCAP) course for CDTRP Trainees and Patient, Family, Donor (PFD) Partners.
The First Nations principles of OCAP establish how First Nations’ data and information will be collected, protected, used, or shared. Standing for ownership, control, access and possession, OCAP is a tool to support strong information governance on the path to First Nations data sovereignty. Given the diversity within and across Nations, the principles will be expressed and asserted in line with a Nation’s respective world view, traditional knowledge, and protocols.
In total, 8 trainees, PFD partners, and most of the Management Team took the course and were very happy to learn about the fundamentals of OCAP. You can read some of their impressions below.
“I had a cursory understanding of the First Nations Principles of OCAP prior to this course. I have had some exposure to First Nations/Indigenous learnings through medical school, and additional extra-curricular activities. I think what surprised me the most was the nuances of around control and access to data. The OCAP concepts are seemingly simple at a glance but the implementation and ensuring these principles are met are much more complex. The key takeaway for me was understanding and how to develop governance and data management, which I could then use in all the different research areas I was involved in. My learnings from the OCAP Principles will be integrated into my research going forward, as it’s an excellent framework to use. I’d strongly recommend this course to others.”
– Rohit Singla, CDTRP Trainee
“I really enjoyed the OCAP training and felt it was a valuable learning experience. The course was well organized and the modules were easy to follow. There is content specifically outlining the unethical inclusion of indigenous peoples (without their consent) in medical research – I think this is an important lesson for trainees that are just beginning a career in research. The course also covers the use of indigenous data in research; overall the course is very relevant for research trainees.”
– Lauren Westhaver, CDTRP Trainee
“I found the course useful and informative. Additionally, taking the course is essentially a requirement for anyone who wants to engage with Indigenous communities in any research project. Therefore I would encourage CDTRP to continue to offer this opportunity to trainees and PFDs in the future.”
– Nicholas Murphy, CDTRP Trainee
“The OCAP training was definitely a great opportunity to learn more about the first nations principles. The training provided valuable information on the history of first nation people (and how we got to the situation we have today), most common inequities, including in healthcare services and best practice. It really helped me to reflect more on those aspects and make sure I am considering them while conducting research and even providing healthcare services.”
– Amina Silva, CDTRP Trainee
“The OCAP training was very useful for me and I will definitely be able to apply the principles in my work. The training is very well constructed; it is a self-study course with seven modules designed to introduce the fundamental concepts of OCAP, information governance and First Nations data sovereignty.
In the spirit of reconciliation, openness and learning, I believe that all professionals, students and researchers who want to involve First Nations data should definitely take this course. The theory is always accompanied by historical and contemporary examples to discover why OCAP principles are essential and can be applied to everyday life. It definitely opens our eyes to some of the biases that still exist and gives us the tools to become aware of them and avoid them.”
– Stéphanie Larivière, CDTRP Communications & Data Manager
“The “Fundamentals of OCAP” course provided me an effective and concise introduction to the topic of First Nations’ information governance and data sovereignty. Presenting the subject matter with historical context and with a future looking lens, one is shown why the OCAP concepts are important and, also, why there are complexities in implementation of these principles.
I am grateful of the opportunity to have enrolled in the course and thank CDTRP for the invitation to do so. As an individual involved with various patient engagement, patient support and patient-oriented research initiatives, I see the value of this newly-acquired knowledge specifically as applied in the domain of data collection in healthcare research locally, regionally and nationally. More generally, I also understand how the concepts presented in the OCAP course are themselves derived from and tied to First Nations’ peoples right to self-determination and preservation of their cultures.
I look forward to learning more and staying abreast of this subject matter. I will be sure to check online with First Nations Information Governance Centre (FNIGC) as one regular source of further information.”
– Peter Malone, CDTRP Patient Partner
June is National Indigenous History Month
The CDTRP seeks to increase equity, diversity and inclusion in all of its activities, including research, education and career development, patient, family and donor partnerships, and network management. During this month, take time to recognize the rich history, heritage, resilience and diversity of First Nations, Inuit and Métis Peoples across Canada.
The CDTRP is hosted by the University of Alberta, which respectfully acknowledges that it is located on Treaty 6 territory, a traditional gathering place for diverse Indigenous peoples including the Cree, Blackfoot, Métis, Nakota Sioux, Iroquois, Dene, Ojibway/Saulteaux/Anishinaabe, Inuit, and many others whose histories, languages, and cultures continue to influence our vibrant community.
ity of Alberta and has received training in patient-oriented research through the University of Calgary’s PACER (Patient and Community Engagement Research) Program. He is the Patient, Family, and Donor Partnerships & Education Manager with the Canadian Donation and Transplantation Research Program. In this role, Manuel builds relationships patient partners with investigators and strengthens capacity among CDTRP patient partners.
Anders Billström 
Gareth Wiltshire
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Sherrie Logan 
born and raised in Edmonton, AB. With a degree in Music Performance (saxophone performance) and Education, Lindsey has taught for over a decade in the Edmonton Public School system. When she is not teaching, she is very involved in the music community, performing in the Edmonton Winds, conducting her own community ensemble (The Beer League Band) and on numerous musical boards across the province. For the past 5 years, Lindsey has had to take a break from teaching after having her amazing son, George. Maternity leave did not goes as expected as George was diagnosed with Dilated Cardiomyopathy at 5 months old and required 2 heart transplants before the age of 4. During this time, Lindsey has also began to dedicate her time building and expanding her charity: Big Gifts for Little Lives, where they raise money to fund Pediatric Heart Transplant research at the Stollery.
Dr. Caigan Du is a scientist at the Vancouver Coastal Health Research Institute and an assistant professor in the Department of Urologic Sciences at the University of British Columbia. He received a Ph.D. degree in Biochemistry in UK and postdoctoral training in Immunology in USA. He is interested in the pathogenesis of kidney ischemia-reperfusion injury and transplant rejection, and molecular control of urinary malignancies. He has been studying the impact of kidney donor-derived factors on renal allograft rejection, and the molecular pathways of kidney injury and regeneration in experimental models. He is also interested in developing medical solution including drugs made from natural compounds for all kinds of health problems, including immune disorders, organ preservation, kidney failure and urinary cancer. He is the PI of many grant supports from the Kidney Foundation of Canada and the Canadian Institutes of Health Research.
Heather Badenoch is a non-directed living liver donor and communications strategist. As the president of Village PR, she provides strategic communications direction and training to not-for-profit clients in community and health. An active transplant volunteer, Heather helps transplant candidates find living donors by running their public appeals, small and large, pro-bono. She also mentors potential living donors on the path to living donation. Heather is a volunteer with the UHN Centre for Living Organ Donation and the Canadian Donation and Transplant Research Program. She and her spouse adopt rescue dogs and volunteer together with Community Veterinary Outreach, a group providing free veterinary care to the pets of people who are homeless.
Sean Dicks is a clinical psychologist who has 20 years’ experience supporting both families of organ donors and transplant recipients. While it is rare for him to have contact with a donor family and recipient linked to the same organ donation-transplantation event, his contact with families who have lived experience with organ donation on the one hand, and patients who have received transplants on the other hand has provided opportunities to explore how their journeys become linked when they attempt to make sense of and find meaning in their respective crises.
Terri Hansen-Gardiner is a Cree speaking Metis woman from Northern Saskatchewan as well as a 10 year Breast Cancer Survivor. Her tireless spirit and dedication to her community is undeniable. Terri is a cancer survivor who travels around the province to provide assistance, information, and support to Indigenous patients who are trying to access and navigate the cancer care system.
Dr. Golnaz Karoubi is Assistant Scientist at the Toronto General HospitalResearch Institute and principal investigator in the Latner Thoracic Research Labs. She currently holds an Assistant Professor appointment in the department of Laboratory Medicine and Pathobiology and a cross-appointment in the department of Mechanical and Industrial Engineering at the University of Toronto. Dr. Karoubi received her PhD in Applied Science and Engineering at the University of Toronto and joined the Lung Regenerative Medicine Program in the Department of Clinical Research in Berne University, Switzerland for a post-doctoral research fellowship. She stayed on as a Group Leader in 2008 to direct the basic and transitional science as related to Cancer Stem Cell and Lung Regenerative Medicine in the Department of Biomedical Research at the University of Berne until 2012. In early 2012, she joined the team of Dr. Tom Waddell at the Toronto General Hospital Research Institute as a Senior Scientific Associate and was appointed to Assistant Scientist at the Toronto General Hospital Research Institute (University Health Network) in November 2019 and to Assistant Professor in the Department of Laboratory Medicine and Pathobiology in July 2020.
Dr. Haykal graduated from the University of Ottawa Faculty of Medicine in2007 as class valedictorian and silver medalist, and subsequently completed her residency training in Plastic and Reconstructive Surgery at the University of Toronto in 2016. During her residency, she completed a four-year Doctorate of Philosophy (PhD) in tissue engineering, regenerative medicine and immunology with a focus on tracheal reconstruction. She obtained numerous grants and awards including a CIHR Vanier Scholarship. Dr. Haykal then pursued fellowship training in microsurgical reconstruction at the Albany Medical Centre in New York. Dr. Haykal joined the University Health Network and the Toronto General Hospital in 2018. Her clinical focus is on complex oncological reconstruction and microsurgical reconstruction of the breast, head and neck and extremity. She started a lymphedema program in 2019 where she offers microsurgical techniques for the treatment of lymphedema.
Dr. Ahmed is a Professor in the Cumming School of Medicine at the University of Calgary. The recipient of the 2022 Hypertension Canada Senior Investigator Award, she is a nephrologist and clinician-scientist with a focus on sex and gender differences in human cardiovascular/kidney physiology and clinical outcomes. Dr. Ahmed is the Vice Chair (Research) for the Department of Medicine, Lead of the Libin Institute Women’s Cardiovascular Health Research Initiative at the University of Calgary and Lead of the Alberta Strategy for Patient Oriented Research Capacity Development Platform. Dr. Ahmed is an Advisory Board member for the Canadian Institutes of Health Research Institute of Gender and Health, a member of the Canadian Medical Association Journal Governing Council and the President-Elect for the Organization for the Study of Sex Differences.
r. Christopher Nguan is an Associate Professor at the University of British Columbia in the Department of Urological Sciences, Surgical Head of Kidney Transplantation at Vancouver General Hospital and the Director of the Surgical Technologies Experimental Laboratory & Advanced Robotics (STELLAR) facility at Vancouver General Hospital.
r Caroline Lamarche is a clinician scientist and transplant nephrologist at Maisonneuve-Rosemont Hospital. She is an assistant clinical professor at the Université de Montréal. After her nephrology training at the Université de Montréal (2015), she completed a Master degree on the use of adoptive immunotherapy to treat/prevent BK nephropathy in kidney transplant recipients. She then pursued a post-doctoral fellowship with Dr. Megan Levings at the University of British Columbia on the use of chimeric antigen receptor (CAR) regulatory T cells (Tregs) to induce transplant tolerance. Her lab is working on the development of adoptive immunotherapy in nephrology and understanding Treg dysfunction.
Dr. Tandon is an Associate Professor of Medicine, Co-Director of the Cirrhosis Care Clinic, Transplant Hepatologist and lead of the Cirrhosis Care Alberta quality improvement program. She obtained her training at the University of Alberta, the Hospital Clinic in Barcelona and Yale University. Her clinical practice and research are focused on cirrhosis with research interests including cirrhosis related complications, malnutrition, frailty, exercise therapy, palliative care, integrative health approaches such as meditation and knowledge translation. It is her career goal to provide wholistic, interdisciplinary, evidence based, patient-centered care through education, empowerment, engagement and team-work.
Emily is a PhD student at the University of Alberta, where she completed her Master of Science (MSc) degree in medicine. With a passion for patient-oriented research and a commitment to improving health outcomes, Emily’s doctoral project focuses on EMPOWER, a 12-week online mind-body wellness program designed for adults living with chronic health conditions.
Dr Basil S. Nasir, M.B.B.Ch
Dr. Victor Ferreira is an Assistant Scientist in the Ajmera Transplant Centre at the University Health Network (UHN) and the Toronto General Hospital Research Institute (TGHRI). He is also an Assistant Professor at the University of Toronto in the Department of Laboratory Medicine and Pathobiology (LMP). He completed his PhD in Medical Sciences – Infection and Immunity Specialization at McMaster University in 2014 and post-doctoral training at UHN. His research program is focused on three pillars: I) using systems vaccinology to reveal insights into vaccine responses in immunocompromised individuals like transplant recipients; II) characterizing the impact of chronic viral infection on host immune responses; and III) developing novel methods for eliminating latent viruses in human organs. His work has been cited >2,500 times and is published in journals including the New England Journal of Medicine, Nature Immunology, the Lancet Infectious Diseases, Clinical Infectious Diseases, the American Journal of Transplantation and Journal of Infectious Diseases.