2023 Northwest SPOR Collaborative Forum

Join us for the 2023 Northwest SPOR Collaborative Forum on Patient-Oriented Research, hosted by the Alberta SPOR SUPPORT Unit. This year’s theme is "Your Stories: Creating Impact Through Patient-Oriented Research." This 2-day hybrid (in-person and online) event will include plenary panel sessions, workshop presentations, networking activities, a poster session, highlighted oral abstract presentations, and much more!


Day 1: Tuesday, October 3, 2023 | In-person at the Matrix Hotel in Edmonton, Alberta*

Day 2: Wednesday, October 4, 2023 | FREE Virtual Event


*Please note that there will be no livestreaming available this year for the in-person event. We will record sessions and host them on Vimeo for viewing afterwards.

SUBSIDIZED RATES: If you are a patient or student that is interested in attending at a reduced rate, please fill out a subsidy form, and we'll be in contact with you soon.

Registration has closed for this event. Please contact the event planner for more information.

Oct 3: Matrix Hotel, Downtown Edmonton | Oct 4: Virtual Only

Matrix Hotel, 100 Avenue Northwest, Edmonton, AB, Canada

Agenda


*PRE-CONFERENCE* Digital Micro-keynote by Shaneel Pathak: Enabling the Citizen-Scientist in Everyone

In this microkeynote session, Shaneel Pathak looks at the question "How do we make patient partners into citizen scientists to help their own health?" View it below now!




Digital Reflection Wall

Do you have thoughts on POR and where you'd like to see it going? We'd love to hear from you and reflect on these comments during our conference's closing remarks on Wednesday; click on the link below and share your ideas. An in-person physical reflection wall will also be available on Tuesday in Edmonton in the poster area - be sure to grab a marker and share your views there, too!

Digital reflection wall

KEYNOTE - Dr. Bukola Salami: Creating Impact Through Community Based Participatory Research with Immigrant, Black and Racialized Communities

In this keynote presentation, Dr. Bukola Salami will shed light on her experience using community-based participatory research methodology with immigrant, Black, and racialized communities. Dr. Salami will cover some of the issues and challenges encountered in community-based research within these communities and will discuss successes and impact on practices and policies. Discussions will focus around key ingredients to achieving success in community based participatory research as well as key equity considerations.

Artificial intelligence Strengthening Healthcare and Patient-Doctors Visits

This presentation highlights the collaboration between Alberta Health Services (AHS), the University of Alberta's College of Health Sciences, and the Alberta Machine Intelligence Institute (Amii) in utilizing artificial intelligence (AI) technologies for precision health. AHS is the largest integrated health system in Canada, and has developed a comprehensive data warehouse to collect and protect health data, enabling the construction of large population-level datasets. However, a significant portion of digital health data is stored in unstructured medical text and images, requiring extraction for research and improvement purposes. Traditionally, this process has been manual and time-consuming. However, recent advancements in natural language processing have led to the development of large language models (LLMs) like ChatGPT, which can unlock valuable information from unstructured data, providing access to actionable health data. The integration of AI technologies, particularly LLMs, shows great potential for enhancing healthcare outcomes and efficiency. The collaboration between AHS, the University of Alberta, and Amii aims to leverage these advancements to improve precision health and expand access to valuable health data.

From Ideas to Impact: Learning from the Reshape T1D Study in Amplifying Patients and Clinicians as Partners in Research Co-Design and Integrated Knowledge Translation

The Reshape T1D study has transformed the role of clinicians and patients from active participants to proactive partners in the research process. The purpose of the study is to gain a thick description of type 1 diabetes lived experiences in Alberta and how those experiences can be mobilized into clinic practice to reshape diabetes care. The goal of this panel will be to describe the research experiences from the perspective of academics, clinicians, and patients. The intricacies of the research will be shared with full transparency to include conceptualization negotiation of the research itself, logistical aspects of incorporating patients and clinicians as researchers, personal experiences of fulfilling various roles, and learning takeaways from each panelist about considerations for undertaking this type of research.


What's the Value? Integrating Multiple Sources of Data to Provide Quality Care to Patients

Health data are routinely collected for multiple purposes, from multiple sources. Utilization data at the systems level documents billable health care provider visits, procedures, hospitalizations, and associated diagnoses. Electronic medical record (EMR) data at the patient and clinician level records clinical indicators such as blood pressure, lab values, health conditions, and referrals. From the patient’s perspective, patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) are collected to better understand and measure health-related quality of life, health status, and experiences with healthcare. These three pillars of health data are important and offer a comprehensive view of health and health service use from different perspectives; however, they are rarely integrated, if at all.

The challenges to this type of data integration are numerous and include privacy and custodianship/data ownership considerations, as well as limitations of cohesive technology. In this panel, we will hear from a variety of perspectives, with the aim of identifying successes and potential solutions to these challenges. We will discuss the inclusion of patients in health data integration processes to improve health data usage and support innovation towards data integration at multiple levels. There are currently several pan-Canadian initiatives underway to better integrate these data sources and report more comprehensive health outcomes. The panel participants are experts and able to share stories about these initiatives.

This session will foster rich discussion among the panelists, and reach out to the audience members for questions, comments, and ideas. Everyone will be invited to contribute.

Bridging the Translational Gap: Connecting Fundamental Scientists to Patient-Partners

Scientists working with animal models of disease rarely have patient-partners or others with lived experience as part of their research team. This is not by design, but often due to how basic research is carried out. Thus, integration of the lived experience in basic/fundamental and translational research has faced multiple challenges. While funding agencies are working to reverse this trend, the strategies used may not lead to improvements. Instead, new ways need to be identified to connect researchers and people with lived experience to advance patient-oriented research in the laboratory. Here, we present a model employed by the CIHR-SPOR Chronic Pain Network that linked a basic scientist (Nader Ghasemlou, Queen’s University) with a patient-partner (Lesley Singer, Chronic Pain Network and McGill University). This partnership resulted in a dramatic shift in research the Ghasemlou Lab research program and led to the integration of additional patient-partners to the team (Jennifer Daly-Cyr, Chronic Pain Network). These interactions have been key to developing new research ideas, identifying strategies to reach new populations, and the identifying areas where future studies are necessary.

The Art of Visual Storytelling

The workshop will provide an overview of the audience, structure, design, tools and review in crafting meaningful and intentional messages and visuals to tell stories, foster deeper connections and disseminate information. It is literally the art, creativity and human-centered dimension of knowledge mobilization.

Can-Solve: CKD - Weaving Indigenous Knowledges into Research Practices; Co-building Culturally Safe Partnerships

This session will strive to have participants understand and apply practices for involving Knowledge Keepers in research from the WBS Learning Pathway, will share a culturally relevant approach for collaboration on patient-oriented research in Alberta, and look at ways to bridge the gap between research evidence and health care policy.

Collaboratively Applying Implementation Science Principles in Real-World Practice

This workshop will show participants how to apply implementation science principles in implementation practice. The first part of the workshop will be led by Dr. Gabrielle Zimmermann, a specialist in implementation science with the Alberta SPOR SUPPORT Unit Learning Health System Team. Dr. Zimmerman will describe a project she has undertaken to synthesize implementation guidance from the field of implementation science into a practical, functional guide for provincial teams leading implementation initiatives in the Alberta healthcare system. Topics covered will include key elements of successful implementation and user-friendly tools and resources. Dr. Rhyann McKay will then introduce her work as a Canadian Institute for Health Research (CIHR) Health System Impact Post-Doctoral Fellow working with Alberta Health Services’ Acute Care Bundle Improvement initiative. Dr. McKay will describe how to make high-level implementation guidance, including recommended tools and resources, workable in the real-world. Topics covered will include the language of implementation and using co-design approaches to design implementation activities that integrate theory and practice to local contexts. Short activities will be scattered throughout Dr. Zimmermann’s and Dr. McKay’s presentations. The final portion of the workshop will center on an activity that will have workshop participants apply concepts shared in the workshop by partnering with others to co-design implementation planning and activities.

Ełet’anıts’eɂah: Introduction to UNDRIP

This workshop will focus on introducing the United Nations Declaration on the Rights of Indigenous Peoples (UNDRIP), and showcase how UNDRIP can be applied in practice. The workshop will open with a brief introduction about Hotıì ts’eeda and their work. Following, the presenters will introduce UNDRIP, including a brief history of the declaration. We will then focus on applying UNDRIP in practice. Concrete examples of UNDRIP application will be shared, using the Hotıì ts’eeda (NWT SPOR Support Unit) as a case study. To conclude, participants will be guided through questions to consider applying their knowledge of UNDRIP to their own workplaces or contexts. Key takeaways and next steps will be shared to facilitate participants applying UNDRIP moving forward. Workshop activities will focus on translating articles to plain language, identifying applicable articles to your workplace, and reviewing a case study example.

Patient and Community Engagement Research (PaCER) Program: Insights and reflections

The Patient and Community Engagement Research (PaCER) program is a 12-month online experiential-based learning program delivered through the University of Calgary Continuing Education in collaboration with the Alberta SPOR SUPPORT Unit, Patient Engagement Team. Teams of sponsored learners gain understanding of participatory health research approaches and methods and develop skills in participatory health research. They then apply these to design, develop and carry out a complete qualitative research project about a health issue or healthcare practice that matters to them.

PaCER teams are comprised of individuals from diverse backgrounds, perspectives, and lived experiences. PaCER projects follow an innovative PaCER process and centre on patient experience and perspective of diverse health and health care related issues. Our presentation will share about the PaCER program course content and delivery. As well, learners from previous and current PaCER teams will describe their unique projects and share reflections on their PaCER experience and additional health research work their PaCER training has supported them to pursue. We will also offer time for Q&A.

Hotel


Matrix Hotel

Matrix Hotel, 100 Avenue Northwest, Edmonton, AB, Canada

With a stay at Matrix Hotel, you'll be centrally located in Edmonton, within a 5-minute drive of Rogers Place and University of Alberta. This 4-star hotel is 6.1 mi (9.8 km) from West Edmonton Mall and 2.4 mi (3.8 km) from Commonwealth Stadium.


Make yourself at home in one of the 184 guestrooms featuring refrigerators and LED televisions. Your pillowtop bed comes with premium bedding. Cable programming and iPod docking stations are provided for your entertainment, while complimentary wireless Internet access keeps you connected. Private bathrooms with shower/tub combinations feature designer toiletries and hair dryers.

Good to Know: Matrix Hotel


With a stay at Matrix Hotel, you'll be centrally located in Edmonton, within a 5-minute drive of Rogers Place and University of Alberta. This 4-star hotel is 6.1 mi (9.8 km) from West Edmonton Mall and 2.4 mi (3.8 km) from Commonwealth Stadium.


Make yourself at home in one of the 184 guestrooms featuring refrigerators and LED televisions. Your pillowtop bed comes with premium bedding. Cable programming and iPod docking stations are provided for your entertainment, while complimentary wireless Internet access keeps you connected. Private bathrooms with shower/tub combinations feature designer toiletries and hair dryers.


·        Matrix Hotel has 184 well-equipped rooms with air-conditioner, minibar, refrigerator, and free toiletries

·        Hotel Matrix offers modern facilities such as iPod docking and a 46-inch LED television

·        The Matrix Hotel can provide limo service

·        Hotel Matrix Inn is just a few minutes away to the Alberta Legislature Building and the Edmonton City Centre Mall

·        Guests at Matrix Inn can enjoy cocktails at MZ Lounge and fine dining at the Wildflower Grill

·        Matrix Inn Edmonton offers complimentary bike rentals to its guests

Speakers


Keynote Speaker: Dr. Bukola Salami

University of Calgary

Professor, Faculty of Nursing

Professor Bukola Salami received her Bachelor of Science in Nursing from the University of Windsor, Master of Nursing from the University of Toronto, and PhD in Nursing from the University of Toronto. In July 2023, she will become a Professor in the Cumming School of Medicine, University of Calgary and a research chair in an area relevant to Black and racialized people’s health. Previously, she held the rank of Full Professor in the Faculty of Nursing, University of Alberta. She is the former Director of the Intersections of Gender Signature Area in the Office of the Vice President Research at the University of Alberta (September 2021 to March 2023).

Professor Salami’s research program focuses on policies and practices shaping migrant health as well as Black people’s health. She has been involved in over 85 funded studies totalling over $230 million. She has led research projects on topics including African immigrant child health, immigrant mental health, access to healthcare for Black women, access to healthcare for immigrant children, Black youth mental health, the health of internally displaced children, the well-being of temporary foreign workers, COVID vaccine hesitancy among Black Canadians, an environmental scan of equity seeking organizations in Alberta, culturally appropriate practices for research with Black Canadians, international nurse migration, Philippine educated nurses, and parenting practices of African immigrants. She is one of the most published Black health researchers in Canada with over 110 papers in peer-reviewed journals.

She founded and leads the African Child and Youth Migration Network, a network of 42 scholars from four continents. In 2020, she founded the Black Youth Mentorship and Leadership Program at the University of Alberta. The program, the first university-based fully interdisciplinary mentorship program for Black youths in Canada, seeks to socially and economically empower Black high school youths to meaningfully contribute to Canadian society. Her work on Black youth mental health informed the creation of the first mental health clinic for Black Canadians in Western Canada (which was founded by Africa Centre and the Alberta Black Therapist Network). She has presented her work to policy makers (including twice to the Prime Minister of Canada and once to the House of Commons Standing Committee on Health). Her work has contributed to policy change, including that related to Black people’s well-being. In 2015/2016, she was a collaborating researcher at the United Nations Research Institute for Social Development. She has trained over 100 undergraduate and graduate students, including many (~10) who are now Assistant or Associate Professors.

She is involved in several community volunteer initiatives, including the Public Health Agency of Canada Working Group on the Mental Health of Black Canadians and the Bell Let’s Talk Funding Advisory Committee. She is a Board member of the Black Opportunities Fund, Canadian Nurses Association, Black Physicians of Alberta (Vice President), and Black Health Alliance. She is a former Board member of Africa Center (the largest Black organization in Western Canada), Alberta College of Social Workers, Edmonton Local Immigrant Partnership, National Association of Nigerian Nurses of North America, International Nursing Interest Group of the Registered Nurses Association of Ontario, and Project Esperance (a housing unit for women in Toronto). In addition to being an Editor for the Canadian Journal of Nursing Research, she is an Associate Editor of the Canadian Medical Association Journal (CMAJ) and on the Editorial Board of Nursing Inquiry and Qualitative Health Research. She is an advisory board member of the CIHR Institute for Human Development, Child and Youth Health. She has reviewed grant applications for several organizations, including the Public Health Agency of Canada, Bell Let’s Talk, Shastri Indo-Canadian Institute, Edmonton Community Foundation, United Kingdom Medical Research Council, Canadian Institutes for Health Research, Social Sciences and Humanities Research Council of Canada, Alberta Health Services Strategic Clinical Network, Women and Children’s Health Research Institute, Saskatchewan Health Research Foundation, and Alberta Innovates Health Solutions.

Dr. Salami has received several awards for research excellence and community engagement: 100 Accomplished Black Women in Canada; Sigma Theta Tau International Honor Society of Nursing Emerging Nurse Researcher of the Year Award; College and Association of Registered Nurses of Alberta (CARNA) Award for Nursing Excellence; Rosalind Smith Professional Award from the National Black Coalition of Canada – Edmonton Chapter; and Alberta Avenue Edmonton Top 40 under 40. In 2020, she became a recipient of the Sigma Theta Tau International Honor Society International Nurse Researcher Hall of Fame, the highest research award in nursing. In 2021, she became a Fellow of the Canadian Academy of Nursing. That same year, she received the Killam Accelerator Award (a $225,000 value for research) given to the best early career researcher at the University of Alberta. In 2022, she was named among the Top 25 Canadian Immigrants and, in 2023, she was a Queen Elizabeth II Platinum Jubilee Medal recipient.

Yar Anyieth

University of Alberta

Youth Advocate and Researcher

Yar Anyieth is a recent BA graduate, youth advocate, and researcher. Having grown up facing the margins of race and class, and seeing firsthand the discrimination that plagues these social identities, she became inspired to work with and empower young people like herself to aim beyond those barriers. 

She believes being young should be characterized by joy, self-expression, personal growth and understanding; however, many youths who are pushed to the margins are not afforded this possibility, which contributes negatively to their mental health. With this understanding, she joined Dr. Bukola Salami's research project exploring the mental health of black youth to better understand ways youth can be supported and empowered.

Yawa Idi

University of Alberta

Women and Gender Equity and Counselling Clinic Coordinator

Yawa Idi is a dedicated community advocate and researcher hailing from the University of Alberta. With a steadfast commitment to promoting mental health awareness and initiatives within the Black community, she currently holds the role of Women and Gender Equity and Counselling Clinic Coordinator at the Africa Centre, where she plays a pivotal role in supporting individuals and advancing gender equity.

Yawa's journey into advocacy and research began during her undergraduate years at the University of Alberta, where she collaborated with Dr. Bukola Salami and other youth research assistants to investigate the mental health challenges faced by youth of African, Black, and Caribbean descent. Continuing her academic pursuits, Yawa is currently on the path to achieving her Masters in Counselling Psychology. 

Keynote Speaker: Dr. Kyle Wilby

Dalhousie University

Associate Professor at the College of Pharmacy in the Faculty of Health

Kyle John Wilby is an Associate Professor at the College of Pharmacy in the Faculty of Health. He has a Bachelor of Science in Pharmacy from the University of Saskatchewan, a post-graduate Doctor of Pharmacy from the University of British Columbia, and a PhD in Health Professions Education from Maastricht University in the Netherlands. He has been at Dalhousie University for two years and spent the previous ten years in academic and administrative roles in Qatar and New Zealand. His research interests include 2SLGBTAQI+ health and education, sexual health, and workforce development. He has published over 150 peer reviewed papers and is the Associate Editor for the American Journal of Pharmaceutical Education. He is the founder and past-chair of the global think tank RxSHARE (Pharmacists for Sexual and Gender Health Advocacy, Reform, and Equity). 

Rheya White

Health Equity Advocate/Pharmacist

Rheya White (they/her) is a health equity advocate and a pharmacist. Identifying as a queer and trans-feminine person, she has had the opportunity to reflect on patient-centered care from a gender-diverse perspective both as a healthcare provider and as a patient. Equipped with this experience, Rheya hopes to work with other healthcare professionals and members of the community to identify and remove barriers preventing health equity. 


Jamie Boisvenue

University of Alberta

PhD Candidate | Public Health

Jamie is a PhD Candidate in the School of Public Health at the University of Alberta. Originally trained as an epidemiologist, Jamie has worked in the area of chronic disease including metabolic syndrome and heart disease for more than 10 years. Jamie uses a holistic approach to health services research by involving people living with type 1 diabetes as partners in the entire research process. His research specifically focuses on understanding the type 1 diabetes lived experience in how Albertan’s interact with health systems. 

Heather Hinz

University of Alberta

Patient Partner

Heather has been living with T1D for over 30 years. She holds a master's degree in kinesiology, sport, and recreation. Her graduate work focused on people with T1D and how exercise may affect their blood glucose. Heather has been involved with Diabetes Canada’s D-Camps off and on for several years as well as being part of Diabetes Action Canada. 


Kim Young

Provincial Practice Lead for Nutrition Services

Kim's passion for empowering people living with diabetes started in her youth, observing the challenges her two siblings faced living with type 1 diabetes. Since becoming a dietitian in 2000, she has met many people living with type 1 diabetes, with their own unique obstacles and successes. The resilience and tenacity of people living with type 1 diabetes, and a desire to support them to be the best version of themselves, is what inspired Kim to become a part of the Reshape T1D study. Kim’s other passions include running or hiking on mountain trails with friends or family, and supporting her two children in their athletic pursuits.


Kathleen Gibson

Indigenous Services Canada

Registered Dietitian

Kathleen has lived with T1D for more than 28 years. She is passionate about everyone being able to live well no matter the challenges. As a Registered Dietitian, Kathleen works with Indigenous Services Canada to provide diabetes and nutrition support to First Nation’s communities in Alberta. As a diabetes veteran both personally and professionally, she believes the voice of people living with chronic conditions is often overlooked and is working to shift healthcare to have a greater focus on person-first care.

Rose Yeung

University of Alberta

Associate Professor, Division of Endocrinology & Metabolism

Dr. Rose Yeung is an Associate Professor in the Division of Endocrinology & Metabolism at the University of Alberta. Her research interests include diabetes, quality improvement in healthcare, and implementation science. She is working on co-creating improved care in endocrine and diabetes care with patients and other healthcare providers as a Medical Director for the Office of Lifelong Learning and Physician Learning Program at the University of Alberta. 

Dr. Ross Mitchell

Alberta Health Services, Chair in Artificial Intelligence in Health

CIFAR Canada AI Chair

Dr. Mitchell is a CIFAR Canada AI Chair and the inaugural Alberta Health Services (AHS) Chair in AI in Health. He is a Professor in the Department of Medicine, and an Adjunct Professor in the Department of Computer Science at the University of Alberta. He is also a Fellow with the Alberta Machine Intelligence Institute and the Senior Program Director of AI Adoption with AHS. Dr. Mitchell was the inaugural AI Officer at the Moffitt Cancer Center in Tampa, Florida from 2019 to 2021. He was also a Professor of Radiology at Mayo Clinic in Arizona from 2011 to 2019 and Professor of Biomedical Engineering, Radiology, and Clinical Neurosciences at the University of Calgary from 2000 to 2011. He received his PhD at the University of Western Ontario and has been working in the fields of biomedical imaging, artificial intelligence, and machine learning in healthcare for 30 years.

Allison Soprovich

Alberta PROMs and EQ-5D Research and Support Unit (APERSU), University of Alberta

End-User Lead

Allison has a background in community nursing and primary care. She completed an MPH degree in Global Health from the University of Alberta in 2011. Allison's main role for APERSU is end-user support and knowledge translation with patient-reported outcome measures (PROMs). She also provides research and KT support for several other initiatives for the School of Public Health. She is a current a member of the Canadian Primary Care Research Network, Primary Care Information System Committee as well.

Dr. Kerry McBrien

Clinical Lead for the Canadian Primary Care Research Network; and Southern Alberta Primary Care Research Network CPCSSN Director

Associate Professor in the Departments of Family Medicine and Community Health Sciences

Dr. Kerry McBrien is an Associate Professor in the Departments of Family Medicine andCommunity Health Sciences at the University of Calgary. She is a clinician scientist with an active practice in family medicine and a program of research that focuses on chronic disease management in primary care. Dr. McBrien is also co-Director of the Southern Alberta Primary Care Research Network, which extracts de-identified data.

Dr. Ewan Affleck

College of Physicians and Surgeons of Alberta

Senior Medical Advisor - Health Informatics

Ewan Affleck has worked and lived in northern Canada since 1992. He is currently serving as the Senior Medical Advisor - Health Informatics, College of Physicians & Surgeons of Alberta, Strategic Advisor - Clinical and Informatics at the Canadian Institute for Health Information, and Chair of the Alberta Virtual Care Working Group. He is the past Chief Medical Information Officer of the Northwest Territories, was co-chair of the national Virtual Care Task Force, served on the Expert Working Group of the pan-Canadian Health Data Strategy, and is the Executive Producer and co-writer of The Unforgotten (2021), an award-winning film about inequities in health service for Indigenous people living in Canada. In 2013, he was appointed to the Order of Canada for his contribution to northern health care.

Shaneel Pathak

Zamplo Inc.

Co-founder & Chief Executive Officer, Patient Partner

Shaneel’s passion for health empowerment was born from his experience as a caregiver. Shaneel didn’t accept the information-chaos, patient’s experience and found the power of democratizing health data and a global community. From his journey, Shaneel started Zamplo, a digital health social enterprise.

Nader Ghasemlou

Departments of Anesthesiology and Biomedical & Molecular Sciences, Queen's University

Associate Professor

Dr. Nader Ghasemlou obtained his PhD in Neuroscience at McGill University, and completed his postdoctoral fellowship in pain physiology with Dr. Clifford Woolf at Harvard Medical School. He is an Associate Professor in the Departments of Anesthesiology and Biomedical & Molecular Sciences at Queen’s University, where he leads the Pain Chronobiology & Neuroimmunology Lab (ghasemloulab.ca), the Interdisciplinary Pain Neuroimmunology group, and the Faculty of Health Sciences Research Excellence Cluster in Tissue Inflammation & Regeneration. His research team uses a translational approach to study the intersection of neuroimmunology, pain physiology, and circadian biology. Research in the lab uses various animal models of tissue injury and disease, including multiple sclerosis, spinal cord injury, postoperative wounds, and neuropathic nerve injury to better understand the molecular, cellular, and systems responses underlying human disease. The group is particularly focused on dissecting the molecular and cellular mechanisms underlying the generation and maintenance of inflammation in the central and peripheral nervous system. All projects in the lab include bioinformatics, to identify genes/pathways regulating cell function, and patient cohort studies, providing a translational component to all projects.

Leslie Singer

Physiotherapist and Patient Partner

Lesley is a born and raised Montrealer. She wears several hats with respect to pain management. She is a registered physiotherapist, coordinator, and educator in the online certificate in Chronic pain Management at McGill and she is a patient partner, having lived with chronic neuropathic pain for over20 years. She has been involved with the Chronic Pain Network since its inception as a co-chair of the KT committee and is now on the Knowledge mobilization committee and is also involved with the Quebec Pain Research Network (QPRN). She has also partnered in many research projects over the years. Lesley is an advocate of improved interdisciplinary pain management.

Jennifer Daly-Cyr

CircaPain Research Study, the Chronic Pain Network and Pain Ontario.

Experience/Patient Partner/Advisor

Jennifer’s professional background is in Marketing and Strategic Planning in higher education. Since a sudden onset of severe abdominal pain, she has been on a journey of learning to live with persistent acute episodes of pain and adapting to the dramatic changes this has brought to her daily life.

She leverages her skills and experience to advocate, collaborate and share her perspective as a person with lived experience/patient partner/advisor with national and provincial pain research initiatives and projects, including with the CircaPain Research Study, the Chronic Pain Network and Pain Ontario. 

She advocates for the incorporation of the lived experience perspective into research, broadened awareness of chronic pain, improving understanding about the value of patient engagement in research and for improved access to health care and support for people living with pain.

Candace Ramjohn

AbSPORU: Learning Health System Team

Knowledge Translation Project Coordinator

Candace Ramjohn is a Caribbean-born artist, designer, visual practitioner, and Knowledge Translation Project Coordinator for the Alberta SPOR SUPPORT Unit Learning Health System Team. She has a BA in Art & Design, Business Analysis Certification, Knowledge Translation, and Knowledge Mobilization Professional Certification, and is a certified graphic recorder. She provides KT-related products and support, graphic design, and facilitation, to promote engagement, build community, and contribute to the visual knowledge translation work of AbSPORU.

Claire Hiscock, HBSc, MPH

Hotıì ts’eeda

Research and Policy Advisor

Claire was born in Toronto and raised in Houston, Texas. She is of Irish settler ancestry. She returned to Toronto, where she earned an HBSc and an MPH specializing in Indigenous health from the University of Toronto. She is a Ph.D. student at the Rehabilitation Sciences Institute at the University of Toronto. Her doctoral work looks at ticks and tick-borne diseases and their impact in First Nation communities in Southern Ontario, emphasizing how communities can use Traditional Knowledge to adapt to the changing presence of ticks. She has a passion for community-driven research that has a meaningful impact for the community, and she is keen to work with this model as a research and policy advisor with Hotıì ts'eeda.

Catherine Turner

Can-SOLVE CKD Network

Indigenous Liaison Manager


Kyra Hanninen, BSN

Hotıì ts’eeda

Research and Communications Specialist

Kyra was born and raised in Yellowknife. She holds a Bachelor of Science in Nursing from University of Victoria at Aurora College, and is a Registered Nurse. Kyra discovered her interest in research through her education and clinical experiences, where she worked with northerners accessing healthcare. She believes that research can address community needs to improve health and wellbeing.

Kyra is thrilled to support northern health and research within her role at Hotıì ts’eeda.

Maoliosa (Mo) Donald

Cumming School of Medicine, University of Calgary

Adjunct Assistant Professor

Dr. Maoliosa (Mo) Donald, PhD is an Adjunct Assistant Professor at theCumming School of Medicine, University of Calgary. She is trained as a health services researcher, implementation scientist, and physical therapist. Her research focuses on using pragmatic approaches to identify strategies to improve person centered care for individuals with chronic kidney disease.

Maoliosa has extensive experience in stakeholder engagement in the implementation of health innovations locally, provincially, and nationally. She is interested in applying theories, methods, and frameworks to determine factors that promote or impede implementation, adaptation, and sustainability in ways that are effective and practical for various contexts.

Violet March

Knowledge Keeper

Violet March is Denesuline, a proud member of Cold Lake First Nation in northern Alberta Treaty 6 area. The majority of her career has been in the oil and gas industry in Calgary, where she currently resides. After obtaining a Life Skills Certification, she has been working with several First Nation communities in Alberta, BC and Saskatchewan. She was employed with Tribal Chiefs Employment & Training which allowed her to work in many First Nation communities. Currently, she is employed with different organizations as a Knowledge Keeper. Violet’s open nature and kind heart have led her to a life giving to others where she inspires them to reach for greater heights and to find opportunities for revelation and change. As a residential school survivor, Violet vividly brings the past to life in schools, corporate and private organizations sessions. With her personal stories, she shares her experiences growing up in a traditional environment in the far north. Violet knows that in order to move forward as a country we must first acknowledge our past and to this end she generously shares her memories of residential school life. She will tell us how her early years in the system have affected her and her family to this day. Violet demonstrates that your past need not define you. She teaches us that anybody can move forward with strength, courage and love.



Meghan Elliott

University of Calgary

Nephrology Doctor and Assistant Professor

Meghan Elliott is a kidney doctor and Assistant Professor at the University of Calgary. She completed her internal medicine and nephrology training at the University of Calgary and a Master’s in Clinical Epidemiology with a focus in knowledge translation and patient-oriented research at the University of Toronto. She has been supported through the national Kidney Research Scientist Core Education and National Training (KRESCENT) program during her graduate studies and as a new investigator. Her program of research uses qualitative and mixed methodologies to understand patient care experiences and develop strategies to engage patients and providers in person-centered kidney care.

Gabrielle Zimmermann

Alberta Strategy for Patient Oriented Research (SPOR) SUPPORT Unit Learning Health System

Program Coordinator - Knowledge Translation & Implementation Science

A curious and open mindset are the basis of Gabrielle’s desire to continually learn, explore and create. She has experience with different kinds of research (from basic science to health services research), but is very interested in ensuring that any research evidence that is created makes it into the hands of those that can actually use it. Not only that, but making sure that those who need to use research evidence in their daily practice or for decision making (in healthcare) have a say in what gets studied in the first place. Gabrielle is able to apply what she has learned in her PhD (in Immunology) and various jobs along the way to support this kind of knowledge mobilization among health researchers, practitioners and decision makers in Alberta. Her current job is with the Alberta Strategy for Patient Oriented Research (SPOR) SUPPORT Unit Learning Health System Team as the Program Coordinator - Knowledge Translation & Implementation Science. She is also an Adjunct Assistant Professor with the Department of Community Health Sciences at the University of Calgary.

Dr. Rhyann McKay

SPOR SUPPORT Unit Learning Health System

Research Associate

Rhyann McKay is a Research Associate in behaviour change and implementation science with the Alberta SPOR SUPPORT Unit Learning Health System Team. Rhyann conducts pragmatic research that focusses on the practical application of behaviour change and implementation science theory to understand and improve complex real-world practice. She largely conducts this research in partnership with research users to enhance the relevance and usefulness of the findings. Her research experience has been situated in community and health system settings, ranging from co-designing and testing community-based theory-based behaviour change interventions to examining the implementation of provincially scaled healthcare innovations.

Ingrid Nielssen

AbSPORU Patient Engagement Team

Patient Engagement Coordinator

Ingrid is the Patient Engagement Coordinator for the AbSPORU Patient Engagement Team and the Instructor for the Patient and Community Engagement in Research (PaCER) program.

She holds a graduate degree in Gender and Social Justice and is passionate about democratizing health research, making sure everyone is able to contribute in meaningful ways to the health research evidence that impacts them.

Iqmat Iyiola

PaCER Student

Iqmat Iyiola is an undergraduate student at the University of Alberta and a current Patient and Community Engagement Research (PaCER) student at the University of Calgary.

Iqmat's interest in maternal and child health research largely stems from her caregiver experience for her younger sister with several intellectual and physical handicaps. She's proud to be part of the 2023 PaCER project investigating parental perspectives regarding universal newborn cytomegalovirus (CMV) screening.

Her research interests include child and maternal health, oncology, and patient and community-based participatory research that utilizes qualitative methods. Iqmat enjoys examining the family/caregiver experience from the patient perspective and using the PaCER approach as a lens for improving health equity and outcomes.

Hanna Sutherland

PaCER program

Indigenous Student Researcher

Hanna Sutherland is a citizen of the Metis Nation of Alberta. She is a graduate from the University of Lethbridge where she double majored in political science and Indigenous studies. Hanna is currently an Indigenous student researcher in the PaCER program offered through the University of Calgary’s Continuing Education. Her education, employment, and firsthand experience as a citizen of the Metis Nation of Alberta, continues to influence her decision to pursue initiatives that work towards creating opportunities and dismantling barriers for and with Indigenous peoples. This includes placing Indigenous knowledge, worldviews, and lived experience at the forefront of her research.

Gary Semeniuk

Patient Advisor and Research Partner

Gary completed the PaCER program in 2022. His interest in health care started after a heart attack in 2014. He quickly became aware of the enormous number of Albertans that are afflicted with cardiovascular disease (CVD) every year and were fortunate to have lived through the same experience he did. 

To repay the gift of time (and what a gift!) he wanted to give back to the CVD patient community, so he became a volunteer patent advisor on the Cardiovascular Health and Stroke Strategic Clinical Network. (CvHS SCN) in 2019. To enhance his contributions and broaden his opportunities, he enrolled in the PaCER program. Since then, he has participated on numerous grant application selection committees; assisted in developing AHS’s vascular risk reduction (VRR) program; been featured in educational videos; and has been recruited as a patient advisor providing input into potential new CVD products.

Today, he is enjoying a renewed and active life full of family, friends, travel, and the freedom to fully embrace retirement. He was grateful to see he & his wife’s children get married and is looking forward to welcoming the next generation into the family.

Stella Severin

PaCER Student

Stella completed her Bachelor of Arts (Honours) and the course component of a Master of Arts at the University of Alberta. In lieu of her Master’s thesis, she got married and relished staying home and raising her four children. It was when her daughter was diagnosed with Crohn’s Disease that Stella dove headlong into IBD research, and her passion for learning and research was reignited. PaCER synergistically presented an opportunity to bring her voice and passion to patient-informed health research evidence impacting healthcare planning, practice and policy.

Stella is proud to be part of a 2023 PaCER project investigating what mental health supports and resources are important to IBD patients receiving an IBD diagnosis. She currently also sits on two Patient Advisory Committees and has contributed in numerous studies in the hopes of improving patients’ quality of life. 

Jeff Bakal

AbSPORU

Co-Lead, Data & Research Services

Dr. Jeff Bakal, PhD, is the Program Director for Provincial Research Data Services at Alberta Health Services which operates the Alberta Strategy for Patient Oriented Research (SPOR) data platform and Health Services Statistical & Analytics Methods teams. He is a biostatistician with over 15 years of experience working with Health Services data and Randomized Clinical Trials. His specialties include Biostatistics, Survival analysis, Cost-Utility modeling, Exploratory analysis, Experimental Design, Clinical Trials, Population Health Research, Analytics

Bing Li

AbSPORU

Co-Associate Director, 
Data & Research Services

Bing Li, MSc, is a team lead with the Alberta Health Services Analytics. He holds a master’s degree in Economics from the University of Calgary.

Dr. Mike Lang

Mike Lang Stories

Digital storytelling specialist

Dr. Mike Lang is a health researcher, filmmaker, and Level 3 Common Language Digital Storytelling Facilitator. He has directed and produced five feature-length documentaries and three webseries about the human health experience in and facilitating the creation of over 850 short films (“digital stories”) with patients, family caregivers, and healthcare professionals. Mike’s professional and research focus is on using digital storytelling and documentary filmmaking in education, advocacy, research, and a therapeutic capacity within health and wellness contexts both locally and globally. 

Dr. Lisa Hartling

University of Alberta

Pediatric health researcher

Dr. Lisa Hartling is a health researcher who uses storytelling to communicate evidence-based messages to populations who need it most. Dr. Hartling works with storytelling in various formats and has developed a storytelling framework for knowledge translation interventions that seek to promote changes in health-related behaviours.


Sandra Zelinsky

University of Calgary, AbSPORU Patient Engagement Team

Lead Patient Research Partner

Sandra is a graduate of the Patient and Community Engagement Research (PaCER) program from the University of Calgary, and she is a trained Digital Storytelling facilitator from The Story Center, USA. She believes in the importance of bringing lived experience partners as experts to health research teams and

has seen the direct impact on the conduct and outputs of research. She helps to support research teams in working together in patient engagement and patient-oriented research for the AbSPORU Patient Engagement Team. She also conducts qualitative patient-led research with an interest in arts-based approaches, specifically Digital Storytelling. It is her lived experiences as a person living with chronic disease and a cancer survivor that motivates her to work collaboratively in health research.

Sadia Ahmed

AbSPORU Patient Engagement Team

Research Associate

Sadia Ahmed is a Research Associate with the AbSPORU Patient Engagement Team. As part of her role, she carries out patient-oriented research projects, oversees and supports student projects, and supports researchers and patient-partners to work together in health research teams. She has experience with qualitative research methods, evaluation of patient engagement, patient-reported experience and outcomes measures (PREMs, PROMs) research, and co-facilitating digital storytelling workshops.

Dawn Richards

Five02 Labs Inc.

Patient Advocate and Volunteer

Dawn Richards, PhD, is the founder of Five02 Labs Inc. Her firm provides traditional services including project management and preparation of grants, manuscripts, corporate and lay language materials; along with those to incorporate the patient perspective and through the development of relationships with patients and patient organizations. Clients are from all sectors. With a PhD (Analytical Chemistry) from the University of Alberta, Dawn has worked in a variety of roles during the past 20 years, however her diagnosis with rheumatoid arthritis almost 15 years ago instigated a journey to intertwine her passion for science with making the most of her diagnosis.

As a patient advocate and volunteer, Dawn is Vice President of the Canadian Arthritis Patient Alliance and a member of The BMJ's Patient Panel. She served as an IMHA Research Ambassador from 2014 - 2019 and was the first Patient Advisor of the Canadian Medical Association's Wait Time Alliance. Dawn advocates for arthritis awareness, access to treatment, the importance of research and the inclusion of patients both in decision-making and as research collaborators.

Maria Ren

University of Alberta

Student

Maria is an undergraduate student at the University of Alberta studying Nutrition and Food Science with a specialization in Dietetics. She is currently working on a patient-oriented research project with survivors of endometrial cancer. Her experience as a caregiver has inspired her to work in research involving cancer survivorship. 

Veronika Kiryanova

Patient Advisor

Veronika, a neuroscientist, experienced a significant neurological event in 2017, impacting her communication, mobility, and cognition. This personal experience ignited her passion for patient engagement, advocacy, and raising awareness. 

She actively collaborates in various research projects, contributing her lived experience and knowledge to shape research design, data collection, analysis, the development of educational materials and knowledge translation and dissemination.  

Veronika also works closely with brain injury societies and universities, offering her insights and support to their initiatives. Through public speaking engagements, she shares her recovery journey, while promoting the importance of improved healthcare experiences for all."

Deb Baranac

Patient Advisor

Patient Advisor Deb Baranec is a retired auditor who has had knee osteoarthritis (OA) for 35 plus years, resulting in several surgeries and wearing 5 different braces before having total left knee replacement in 2010 and total right knee replacement in 2015. Getting her mobility back she turned to bettering her overall health by losing almost 190 pounds.

Deb has become an advocate for bone and joint health by becoming more involved in the Alberta Bone and Joint Health Strategic Clinical Network, which included participating and presenting at a workshop for Obesity and Osteoarthritis. Deb has also participated in the early development of a study on the impact of obesity on gaits after total knee arthroplasty, and has provided input as a consumer representative investigating the effects of prebiotics supplements on chronic inflammation for obese patients with knee OA. Deb has presented and shared her story and journey to wellness with third year medical students and provides motivational talks to Weight Watchers.

Currently Deb is providing input as a consumer for a project called Adapting Rehabilitation Delivery for Maximum Impact at Home and as a Knowledge User for a project called Preoperative e-Health to Prepare for Elective Total Joint Replacement Surgery Randomize Feasibility Trial with the University of Alberta Departments of Physical Therapy and Surgery. Deb recently participated as a Patient Advisor for the Clinical Evaluation of Levitation Knee Brace in Patients with Knee OA. Deb was also the subject for an article in the Spring 2019 publication of Research in Motion - McCaig Institute for Bone and Joint Health.


Matthew Luzentales-Simpson

Alberta Strategy for Patient-Oriented Research, Patient Engagement Team

Research Operations Assistant

Matthew, MSc, was born and raised in Calgary, AB, and attended both the University of Alberta (BSc, Immunology and Infection), and the University of British Columbia (MSc, Experimental Medicine). Outside of work Matthew is interested in yoga, cooking, and taking care of his two cats.


Dr. Stacey Page

Cumming School of Medicine, University of Calgary

Associate Professor in the Department of Community Health Sciences

Stacey Page, PhD is an Associate Professor in the Department of Community Health Sciences, Cumming School of Medicine, University of Calgary and an Adjunct Professor, School of Visual Art, Alberta University of the Arts. She has close to 20 years of varied REB experience as a student, administrator, member, researcher and vice chair. She is the current Chair of the Conjoint Health Research Ethics Board at the University of Calgary, a member of the Human Research Ethics Board, Mount Royal University as well as a member of the Research Ethics Board, Alberta University of the Arts. Dr. Page is a past member of the Canadian Bioethics Society Executive and the Board of Directors of the Canadian Association of Research Ethics Boards. She has been involved with provincial research ethics harmonization work within Alberta as well as with national initiatives including the Cell Line Advisory Subcommittee (Secretariat on Responsible Conduct of Research).  

Karen MacDonald

University of Calgary

Lead Patient Research Partner - Research Manager and Research Scientist

Karen MacDonald is a Research Manager and Research Scientist at the University of Calgary in the field of health services and health economics research. Karen’s research focuses on stated preference methods and patient health preferences. She is a member of the International Academy of Health Preference Research and has over 10 years experience in the development, design and analysis of stated preference studies in diverse patient and caregiver populations and a range of health care topics. A list of Karen’s scientific publications can be found here: https://orcid.org/0000-0001-7739-4296.

Maria Castrellon Pardo

University of Calgary

Research Assistant

Maria Castrellon is an international graduate psychologist, PaCER graduate, and patient partner researcher currently working at the University of Calgary and at the University of Alberta. She thinks that research is a way to empower and gather diverse voices to make transformations that respond to the real needs of the community.

Cst Michelle Jansen

Calgary Police Department, Crime Prevention

Constable

Cst Michelle Jansen.. I have been a police officer for 19 years between Calgary police and Military police. I have worked the front line for the majority of my career. I have worked in specialty units, major investigations and teaching new recruits. I recently moved into Crime Prevention which has allowed me to reach out to the public an do presentations on fraud, situational awareness and human trafficking.

Karis Barker

University of Calgary

Research Associate


Stacey Lovo BScPT, MSc, PhD

School of Rehabilitation, Science Associate Member, Department of Surgery, College of Medicine

Assistant Professor

Dr. Stacey Lovo BScPT, MSc, PhD is an Assistant Professor in the School of Rehabilitation Science at the University of Saskatchewan. She is also a co-PI in the nātawihowin and mamawiikikayaahk Research, Training and Mentorship Network (Saskatchewan CIHR Network Environment in Indigenous Health Research or Sk-NEIHR). Stacey’s research interests include enhancing access to rehabilitation and primary team-based care in rural, remote and

Indigenous communities using teams and virtual technologies (robotics, telehealth, virtual reality). She also works closely with Indigenous communities and stakeholders to enhance culturally responsive and anti-racist healthcare.

Rosalie Dostie

Université de Sherbrooke and the University of Saskatchewan

Doctoral Student

Rosalie is a physiotherapist and a second-year PhD student at the University of Sherbrooke and the University of Saskatchewan. She is interested in improving pediatric rehabilitation practices and more particularly for clients encountering major access barriers. As part of her doctoral project, she wants to explore how current rehabilitation services are offered to Indigenous communities and how organizational factors influence service provisions in Quebec and Saskatchewan. Moreover, she aims to explore Indigenous families’ needs regarding such services and their perceptions towards telerehabilitation. The final aim of her PhD is to co-develop a training program aimed at sharing the best practices of culturally safe telerehabilitation.

Murdoch Leeies

University of Manitoba

Director of Research for the Department of Emergency Medicine

Dr. Leeies is an organ donation, critical care medicine and emergency medicine specialist physician. Trained as a clinician investigator, he serves as the Director of Research for the Department of Emergency Medicine at the University of Manitoba. 

Dr. Leeies leads a collaborative program of research with a focus on promoting health equity in organ and tissue donation and transplantation. To ensure this work is informed by the population it aims to serve, Dr. Leeies has led the formation of a 2SLGBTQIA+ Patient & Public Advisory Team which partners in the development of patient-centered research that explores the inequities that 2SLGBTQIA+ persons face in the organ and tissue donation and transplantation system. Through this work Dr. Leeies hopes to generate knowledge that can inform the reformation of structural and systemic elements of the health system that uphold these inequities.  

This intersectional research program pairs with his clinical work as an organ donation specialist physician with the Transplant Manitoba Gift of Life program. Dr. Leeies extends his commitment to the principles of equity, diversity, decolonization, and inclusion (EDDI) through academic and clinical service as the Director of EDDI for the Canadian Critical Care Society.

Stephanie Brooks

AbSPORU Learning Health System Team

Program Coordinator

Stephanie Brooks is a PhD candidate in General Public Health (School of Public Health, University of Alberta) and also works for the Alberta Strategy for Patient-Oriented Research, Learning Health System Team. In her employment, she is responsible for enabling implementation research partnerships that support spread, scale, and sustainment of health innovations across the province. She studies her team’s approach to create evidence-based guidance for implementation research partnership building and knowledge application in learning health system contexts.

Dr. Yinfei Duan

Translating Research in Elder Care (TREC) program

Postdoctoral fellow

Dr. Yinfei Duan is a postdoctoral fellow under Dr. Carole Estabrooks in the Translating Research in Elder Care (TREC) program at the University of Alberta's Faculty of Nursing. Trained as a nurse, she earned her PhD in nursing from the University of Minnesota in 2020. Her current research focuses on how various contextual levels—macro, meso, and micro—affect implementation of innovations, and eventually affect quality of care, quality of life for residents, and quality of work life for staff in long-term care homes. She specializes in quantitative methods, including advanced statistical modeling. Additionally, she use mixed-methods that blend quantitative, qualitative, and configurational methods to tackle intricate questions in health services and implementation research within the long-term care sector.


Reza Yousefi-Nooarie

University of Rochester

Assistant Professor at the Department of Public Health Sciences

Reza is an Assistant Professor at the Department of Public Health Sciences, University of Rochester. He investigates the social complexities of dissemination and implementation of innovations in health care settings and communities. He is the co-Director of Equity-focused Dissemination & Implementation (EQ-DI) Function at University of Rochester Clinical and Translational Science Institute (UR CTSI), in which he leads capacity-building and training activities to facilitate the bridge between research and practice at University. He is an expert in studying social networks, the dynamics of relations among individuals and organizations, and designing network-building interventions. He is a mixed methods researcher, and the Associate Director of the Qualitative and Mixed-methods Research Center (QMMRC) at University of Rochester Medical Center.

Alicia Bunger

Ohio State University

Professor in the College of Social Work

Alicia Bunger, MSW, PhD is a Professor in the College of Social Work at the Ohio State University. She is trained as a behavioral health services researcher with an emphasis on implementation in community-based organizations and systems. In partnership with community organizations and leaders, her work examines strategies that facilitate strong collaborative relationships and implementation of cross-system interventions that link health, behavioral health, child welfare, and other services. Bunger’s work has been funded by the National Institutes of Health, the Robert Wood Johnson Foundation, the US Children’s Bureau, and other state and local agencies.

Sobia Khan

Center for Implementation

Director of Implementation

Sobia Khan is the Director of Implementation at The Center for Implementation, located in Ontario, Canada. She is an award-winning expert on how to practically implement complex interventions in complex systems. Globally, she has supported and advised both researchers and practitioners on over 100 change initiatives across 5 continents, integrating multiple fields such as implementation science, systems thinking, and social network theory to achieve meaningful and large-scale change. She emphasizes pragmatic and equity-driven approaches, with a particular focus on the need for relationship building, advocacy, and collective action to create change at all levels of the system.  

James Thesen

Patient Advisor and Research Partner

James is 45 years old, married, and has one son whom he adores! He is a former health professional and currently struggling with health issues, and he tries his best to positively contribute to society by working with doctors and researchers to find solutions. He loves helping other people to live their best life!

Mindy Tindall

Patient Partner Researcher, Co-Investigator, and Co-Chair

Melinda (Mindy) Tindall is a passionately curious architecture and MBA student with a background in nursing and healthcare. She has participated in AbSPORU initiatives since 2017 as a Patient Partner Researcher, Co-Investigator, and Co-Chair. She is grateful for the opportunity to share some of her healthcare experiences through digital storytelling!


Dr. Lorraine Thirsk

Faculty of Health Disciplines of Athabasca University.

Associate Professor

Dr Lorraine Thirsk is an Associate Professor at the Faculty of Health Disciplines of Athabasca University. Her research aims to reduce suffering and improve quality of life for families living with health challenges by improving nurses’ relational practices and competencies in therapeutic conversations. This work currently focuses on how cognitive and implicit biases impact nurse-patient relationships, therapeutic communication, and clinical judgment.

Angela Aitchison

Patient Advisor and Research Partner

Angela is a single mother with 3 grown daughters. She raised her family on her own from the time she was 2 weeks pregnant with her youngest daughter. She is an early childhood educator. In her spare time, she enjoys volunteering at a ranch and spending time with their horses. She also loves doing things with her grandchildren and spoiling them. 


Linda Nguyen, PhD

McGill University | School of Physical and Occupational Therapy

Postdoctoral Fellow

Linda Nguyen is a Postdoctoral Fellow in the School of Physical and Occupational Therapy at McGill University. She completed her PhD in Rehabilitation Science at McMaster University. During her PhD studies, she established and continues to partner with a Sibling Youth Advisory Council comprised of young adult siblings of individuals with a disability and/or chronic health condition. Her PhD studies focused on understanding the experiences of siblings of youth with a disability during the transition to adulthood. Her research focuses on the engagement of interest parties in patient-oriented research and policy to support children and youth with disabilities and their families.

Carrie Costello

The Center for Implementation

Implementation Support Coordinator

Carrie Costello is the Implementation Support Coordinator for The Center for Implementation. She is a graduate of the University of Victoria BFA program and came into research after her middle child was diagnosed early in life with a profound intellectual disability. She has been a parent partner in research on over 15 projects and is the primary co-investigator on two of these research studies. She is passionate about patient engagement and finding ways to put the research into action. She specializes in facilitating conversations with parents, children and youth.  

Before joining The Center for Implementation, Carrie worked in patient engagement at the Children's Hospital Research Institute of Manitoba and the CHILD-BRIGHT research network (which she is still involved with). She won the Frank Gavin Patient Engagement Leadership Award and the Made With Patients Rising Star award for her work. Carrie is also an award-winning playwright for young audiences and an avid puppeteer.

Logan Wong BSW, MSW RSW (He/Him)

Social Worker

Logan identifies as a trans, bi-racial, Autistic wheelchair user. As an Equity, Diversity, and Inclusion Consultant, who has been on CHILD-BRIGHT’s National Youth Advisory Panel (NYAP) since its conception in 2018. Currently Logan is the chairperson of the National Youth Advisory Panel at the CHILD-BRIGHT Network. Logan has dedicated his career as a social worker to work within the equity space conducting training, writing equity-focused policies/proposals, and supporting the creation, implementation, and sustainability of diverse, equitable and inclusive workplace cultures.

As a graduate of the BSW and MSW programs at Toronto Metropolitan University, I have a deep understanding of Inclusion, Diversity, Equity and Accessibility (IDEA) frameworks, principles, advocacy, and policy that will support in providing leadership and guidance to ensure compliance with Human Rights and Accessibility legislation and best practices in various environments. I have comprehensive knowledge of the Ontario Human Rights Code, the Accessibility for Ontarians with Disabilities Act (AODA) and in- depth understanding of policy issues related to human rights and equity, specifically for people with disabilities.

Dr. Dan Goldowitz

University of British Columbia

Professor Emeritus in the Department of Medical Genetics

Dr. Dan Goldowitz received his PhD in Psychobiology at the University of California at Irvine and did postdoctoral training in Boston, Stockholm and Salt Lake City, where the focus was on brain development. Currently, he is a Professor Emeritus in the Department of Medical Genetics at UBC and member of the Centre for Molecular Medicine and Therapeutics and a former Tier 1 Canada Research Chair in Developmental Neurogenetics. He led a successful application and a renewal for a Canadian Network of Centres of Excellence in brain development in late 2009 and 2014, called NeuroDevNet, now called Kids Brain Health Network. He then co-led a successful national competition held by CIHR in chronic disease Strategies for Patient Oriented Research (SPOR) in childhood brain-based disorders, CHILD-BRIGHT and its renewal in 2022. Most recently, he co-led a successful application for an CIHR SPOR National Training Entity in 2021. In the lab, Dan continues using mouse models to study how genes drive the development of a region of the brain called the cerebellum.


D'arcy Duquette

Patient Advisor and Research Partner

D’Arcy Duquette has been married for 40 years with two adult children. After 39 years D’Arcy retired from Canadian Pacific Railway as Senior Director, Network Strategy.

D’Arcy is a member of the Surgery and Critical Care SCN’s along with the co-chair of the Citizen Advisory Team, South Health Campus. He is past Chair for the Patient and Family Advisory Committee with the Health Quality Council of Alberta and Senior Patient Partner with Choosing Wisely Canada. D’Arcy is also a committee member of Imagine Citizens Network, the Quality Assurance Committee and Alberta Surgical Initiative Advisory Network. D’Arcy also volunteers as a patient advisor for the Cancer Screening Virtual Education along with Continuing Care, Home Care and Long-Term Care. D’Arcy is a graduate from the 2022 PaCER (Patient and Community Engagement Research) Sponsored by Strategic Clinical Network and AbSPORU (Alberta Strategy for Patient Oriented Research Support Unit).

D’Arcy also sits on the Board of Directors for his Community Residents Association and remains actively involved in Community development. He has been a cancer patient in Alberta’s healthcare system for colon, lung, and bladder cancers, and has had both negative and positive experiences. D’Arcy is committed to providing a safe and quality healthcare system for all Canadians.

On January 26 th, 2023 D’Arcy was awarded the Queen Elizabeth II Platinum Jubilee Medal for Community and Healthcare advocacy.

Aida Fernandes

IMAGINE Network

Executive Director

Aida Fernandes is the current Executive Director of the IMAGINE Network – a patient-

oriented research initiative in gastrointestinal diseases. Aida has over 15 years of

experience in research administration and strategic partnerships in the health charitable

sector. Aida was the Vice-President of Research & Patient Programs at Crohn’s and

Colitis Canada (CCC) where she oversaw the organization’s research, patient education

and advocacy programs for the Canadian IBD community. Prior to her time at CCC, Aida

worked at Cystic Fibrosis Canada in several different capacities, including Manager,

Chapter Relations; Director, Volunteer & Personnel Resources; and Director,

Medical/Scientific and Community Programs.

Aida also has served on a number of governing bodies in the voluntary health sector

including: Public Health Agency of Canada’s Respiratory Diseases Surveillance Advisory

Committee, HealthPartners Board of Directors, Health Charities’ Coalition of Canada

Research Committee, Canadian Genetics Coalition, CIHR’s Institute of Infection and

Immunity Institute Advisory Board, and the Canadian Blood Services’ National Liaison

Committee.

Aida holds a bachelor’s degree in Human Biology from the University of Toronto and a

Master of Business Administration in Non-Profit Management & Leadership from York

University’s Schulich School of Business.

We would like to invite you to become a sponsor of the NorthWest SPOR Collaborative Forum!

We would like to invite you to become a sponsor of the NorthWest SPOR Collaborative Forum, to be held in-person in Edmonton and Calgary on Tuesday, October 3, 2023, and online on Wednesday, October 4, 2023. This year’s theme is: Your Stories: Creating Impact Through Patient-Oriented Research

 

The Collaborative Forum is an excellent opportunity for your organization to increase recognition and visibility in the province, as it will bring together patients and caregivers, health practitioners, health researchers, health science students, policy makers, provincial/territorial health authorities, academic institutions and members of the public. 

 

The Alberta SPOR SUPPORT Unit is part of a national network called “Strategies for Patient-Oriented Research (SPOR),” which aims to ensure the right patients receive the right care at the right time. Patient-oriented research refers to a continuum of research that engages patients as partners, focuses on patient-identified priorities and improves patient outcomes.

 

A wide range of sponsorship opportunities that could strengthen your brand image and highlight your community engagement are available at gold, silver, and bronze levels. Customized sponsorship benefit packages can also be developed to meet your organization’s unique requirements.

 

Sponsorship opportunities are accommodated upon a first come-first served and the deadline is September 15, 2023. For more information regarding the Collaborative Forum, please contact us at [email protected] for more details.

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