"Without data, you're just another person with an opinion." ~ W. Edward Deming
Knowing and understanding our patients and this population is critical to understanding how to evolve practice to meet their needs and work toward eliminating hepatitis C. Throughout New Brunswick and Prince Edward Island, hepatitis C positive patients seen by RECAP clinicians, infectious disease specialists, gastroenterologists and hepatologists are presented with the opportunity to be enrolled in a comprehensive database. At RECAP, in order to understand the factors which prevent or promote new hepatitis C cases, patients who are hepatitis C negative or with unknown status who continue to engage in high risk behaviours are also approached for enrollment. The HEAR database aims to better understand individuals living with or at risk for hepatitis C from a demographic, medical and social perspective. Following informed consent from patients, data are collected at regular intervals from the patients, the clinicians and their medical records. Patients also consent to having their data linked to other administrative databases (i.e. social development) in the future. The database and any projects which involve the use of this data are approved by the appropriate Research Ethics Board.
As of November 2018, there are nearly 900 patients enrolled in the HEAR database contributing to building the knowledge surrounding marginalized populations affected by hepatitis C. Over 300 of these are patients who have been seen at the RECAP Clinic.
CanHepC is a collaborative research network funded by the Canadian Institutes of Health Research (CIHR) and the Public Health Agency of Canada (PHAC) dedicated to translational research linking over 100 researchers, trainees, knowledge-users (community members, community-based organizations, policy and decision makers) in the field of Hepatitis C (HCV) from across Canada as well as international partners.
Our overarching goal is to conduct innovative and interdisciplinary research, build research capacity, and translate evidence for uptake into practice and policy, to improve HCV prevention and health outcomes of Canadians and contribute to the global effort to reduce HCV burden worldwide
Change is achieved through knowledge and the more people who are brought together with shared and varied expertise in marginalised population care the greater and more robust the knowledge will be. RECAP participates in two large national research networks in Canada, ensuring that the New Brunswick population and perspective is present at the national level.
"Knowledge is of no value unless you put it into practice." ~ Anton Chekhov
At the foundation of RECAP is the concept of operating as a living lab. The living lab takes research out of isolation and brings it into real world settings alongside the clinical care and education we are providing. The focus is on knowledge sharing and collaboration driven by the community - in RECAP's case, the marginalized populations at-risk for or positive for hepatitis C.
Research is integrated into everything we do at RECAP with the goal of furthering the knowledge on key topics related to this population, continuously improving the clinical care we provide, and targeting the education we deliver to the learners who join us to achieve the best possible educational experience with lasting knowledge of what high quality care means in this setting.
The need for research targeted specifically at better understanding the needs of this high risk, marginalized population like those we see at the RECAP clinic is broad. Research projects are both developed internally or we may be approached to take part in larger national or international clinic or observational trials. Some of the topics currently being researched by RECAP team members or medical students working with us include:
....and the list goes on!
The Quebec-Maritimes Node plans to contribute to the CRISM consortium with projects that accelerate the transfer of scientific knowledge towards the development of new treatments, including pharmaceutical approaches and psychological interventions for drug users.
The Node's Researchers and collaborators have developed different areas of expertise that will inform multi-site observational studies and randomized controlled clinical trials (RCT) on the various care options for people with a substance misuse problem, as well as on the development and evaluation of new evidenced-based preventive methods, through grants funded by CIHR and other provincial and international financing bodies.