Over the last decade there has been an increasing trend of involving patients as partners in the design, implementation, mobilization of health research. Health Research Networks, such as CREST.BD, have been at the forefront of these efforts, yet little is known about how such networks engage with patients or how organizational factors influence engagement-capacity. Davina Banner, Audrey L’Espérance, Marc Bains, and Sylvain Bédard and team are collaborating on a project to change that.

Organizational Factors that Foster Engagement-Capable Environments: A Study of Health Research Networks is a new three-year project funded by the Canadian Institutes of Health Research (CIHR). The project builds off a previous CIHR-funded Planning Grant and subsequent pilot study (2018) focused on understanding project- and network-level supports for patient engagement within four pan-Canadian cardiovascular and respiratory research networks. In this current study, a synergistic mixed-methods approach will be used to systematically review the literature and conduct multiple case studies and consensus building activities with several Heath Research Networks in both Canada and the United Kingdom. Networks will be studied both separately and comparatively to generate new and integrated understandings of engagement-capacity. Heath Research Networks are complex research ecosystems and studying them is advantageous given their strategic focus on patient engagement and the expectations that they will leverage this engagement to generate more actionable and impactful research.

The team behind the project is diverse, and is comprised of researchers, patients, knowledge users, and network leaders. Together, they’ll be asking: what are the organizational factors that contribute to engagement-capacity in health research networks? They will also develop a series of indicators of engagement-capacity. And, you guessed, it, one of the Health Research Network’s they’ll be focusing on in the study is CREST.BD 😊

Davina Banner-Lukaris PhD RN (NPI) is an Associate Professor in the School of Nursing at the University of Northern British Columbia (UNBC) and Visiting Scientist at the Ottawa Hospital Research Institute. Banner-Lukaris leads an interdisciplinary program of research with a focus on chronic disease, cardiovascular health, rural health, and POR. Banner-Lukaris’ clinical work is now focused in hospice nursing, however, she has previously held roles involving wound care leadership and wound audits. Drawing on her experience of leading collaborative research teams and expertise in qualitative and mixed-methods research, patient engagement and IKT, Banner-Lukaris will provide overall leadership and contribute to all aspects of the research.

Audrey L’Espérance is research associate and strategic advisor at the Centre of Excellence on Partnership with Patients and the Public (CEPPP), an organization based both at the University of Montreal and the CHUM Research Centre. She completed a PhD in political studies at the University of Ottawa and a two-year postdoctoral fellowship at the University of Toronto. Audrey was also visiting scholar at BIOS – Centre for the Study of Bioscience, Biomedicine, Biotechnology and Society at the London School of Economics and Political Science in the UK. Her work has focused on public policies and practices related to assisted reproduction and health, patients’ experiential knowledge, medical expertise and policy-making processes in the health sector. Over the years, she has developed an expertise in program evaluation, public policy analysis and project management in various academic and public-health settings.

Marc Bains is a heart transplant recipient diagnosed with heart failure at the age of 23. He is the Vice President of HeartLife Foundation, holds a BBA in Entrepreneurial Leadership from Kwantlen Polytechnic University, is an independent financial advisor and marketing consultant for startups, and is extraordinarily passionate about promoting a coordinated approach to heart failure in Canada.

Sylvain Bédard, first heard the word transplantation in 1980 when he was diagnosed with HCM ( hypertrophic cardiomyopathy ), a heart disease that had just killed his 18-year-old sister. Sylvain received a heart transplant in 2000 and then climbed up Mont-Blanc (4800m) in 2003. In December 2004, he became the first heart transplant recipient in history to climb over 6000m in Bolivia, Sajama Mountain at 6500m. Sylvain is now patient partner at the CEPPP (Center of excellence for the public and patient partnership) associated at the Centre de Recherche de l’Universite du Montreal, patient co-ordinator at the CANet (Canadian Arrhythmia Network) and also patient coordinator and co-lead in the Core4 CNTRP research project. He is currently managing projects with patient partners in transplant and donation research, arrhythmia, sudden death syndrome and AFB, as well as Artificial Intelligence.

To learn more about this project, you can contact Dr. Davina Banner at Davina.Banner-Lukaris@unbc.ca