Patient-oriented research: An essential driver of learning health system capacity development.

Canada's health system faces a lag in implementing high-quality evidence and research-driven innovation into service delivery, while demonstrating accountability and benefit to the public. To address these challenges, Patient-Oriented Research (POR) builds teams that engage researchers, healthcare providers, decision-makers, and most importantly, patients (people with lived and living experience) in the process of generating and applying evidence to inform health services and decision-making. A Learning Health System (LHS) systematically integrates external evidence with internal data and experience and puts that knowledge into practice in a continuous cycle. Using a POR/LHS example from a BC health authority, we describe nine enablers required to support LHS capacity development. The LHS case study, Walk With Me, addresses a health system high-priority topic: the toxic drug crisis. Understanding the value of learning health systems, along with the enablers required to support and implement them, will empower health leaders to champion and orchestrate positive change.

Applicability of a national strategy for patient-oriented research to people who use(d) substances: a Canadian experience.

BACKGROUND: Europe and North America are in the grips of a devastating overdose crisis. People who use substances often feel unsafe to access healthcare due to fears of stigma, blame, judgement, poor treatment, or other repercussions. As a result, they often avoid, delay, or leave care, resulting in premature death and missed opportunities for care. Internationally, there have been concerted efforts to move towards patient-engaged research to enhance the quality of health care systems and services. In Canada, the Canadian Institutes of Health Research (CIHR) Strategy for Patient-Oriented Research (SPOR) initiative promotes engagement of patients as active partners in health care research. As part of a community based patient oriented research project, we critically analyze the SPOR framework to provide insights into what constitutes safer research with people who use(d) substances. METHODS: We undertook a two-stage process that began with a review of community based research principles and the SPOR framework. At the second stage, we undertook a qualitative descriptive study employing focus groups to generate description of the adequacy and appropriateness of the SPOR framework for guiding research with people who use(d) substances on four key dimensions (patient engagement, guiding principles, core areas of engagement and benefits). The data were analyzed using qualitative content analysis to identify key issues and insights. RESULTS: While the SPOR framework includes a range of patient roles, principles and areas for engagement, there are issues and gaps related to essential elements of safe patient-oriented research for people who use substances. These include an individualized focus on patients as partners, lack of recognition of community benefits, power imbalances and distrust due to systemic stigma, engagement as one way capacity building and learning, and lack of accountability for taking action on research findings. CONCLUSIONS: Given the extent of stigma in health care and the ongoing illicit drug policy crisis, strategies for enhancing equitable Patient-Oriented Research (POR) include shifting language from patient partners to community researchers, recognizing power inequities and adding trust and equity as core POR principles including pay equity. Employing community based participatory research as a POR methodology allows the lead researchers to fully engage community throughout the research process, enhances community benefits and accountability for action.

Lessons learned from a health authority research capacity-building initiative.

Health systems worldwide are under pressure to deliver better care to more people with increasingly complex needs within constrained budgets. Research capacity building has been shown to help alleviate these challenges and is underway at hospitals and health authorities across the country; however, approaches vary widely and little exists in the Canadian literature to share experience and best practices. This article describes how a health authority in British Columbia, Canada, implemented and evaluated a 5-year research capacity-building program in partnership with a provincial health research funder. We offer lessons learned for those leading similar innovation-focused change management initiatives, including vision and buy in, complexity thinking, infrastructure, leadership, and coalition development. We suggest that collective learning and building a more robust research capacity-building literature can help health organizations and their partners take significant steps toward integrating research and care for a more effective, efficient, and patient-centred health system.