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

Abstract

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.

Introduction

Canada’s Strategy for Patient-Oriented Research (SPOR) was launched in 2011 on a premise that holds true in 2024. Canada has a strong foundation in health research but faces continuous challenges in integrating research findings into high-quality, timely, appropriate, cost-effective patient care.¹ Gaps in the research-to-practice continuum not only negatively impact the sustainability of our healthcare system but also restrict our ability to efficiently enhance the health and well-being of the country.² Although there is a long-recognized need for a systems approach to support consistent and timely uptake of research evidence into healthcare decision-making, the mechanisms to do this in a complex, dynamic system are poorly understood and challenging to implement.³ Evidence generation cannot be an end in itself, and it must be accompanied by deliberate and intentional efforts to apply it to improve health outcomes.

SPOR was established by the Canadian Institutes of Health Research to champion the participation of patients—that is, people with lived and living experience, their friends and families, and communities—in health research.² For patients,¹ Patient-Oriented Research (POR) means having a say in the questions that are asked, the health topics that are researched, how the data is interpreted, and how success is measured. For researchers, POR means benefiting from the perspectives and experiences of patients. For the healthcare system, POR means having access to the research evidence that decision-makers and healthcare providers need to improve care.⁴ The guiding principles of POR include the following: (a) patients are involved in all aspects of research to ensure questions and results are relevant; (b) decision-makers and clinicians are involved to ensure research evidence is integrated into policy and practice; (c) use of a multidisciplinary approach; and (d) use of an outcome-driven, performance-measurement, and evaluation approach.⁵

Delays in uptake of evidence and innovations can also widen inequities experienced by equity-deserving groups—those who have and continue to face inequities due to factors like race, gender, ability, and socio-economic status. POR promotes the inclusion and advancement of groups historically excluded or underserved in health research by centring the voices of patients to actively collaborate to build a sustainable, accessible, and equitable healthcare system.

POR is tightly aligned with Canada’s Health Standards Organization (HSO) standards for clinical governance.⁶ Clinical governance is a systematic approach used by organizations to oversee, shape, manage, and continuously improve their clinical (health and social) services to ensure safety and quality care.⁷ The inclusion of POR principles into clinical governance decision-making is essential to ensuring the voices of patients and those less often heard from are foundationally embedded at a strategic level.⁸

Recognizing the complexities inherent in the health system, this commentary advocates that a Learning Health System (LHS) informed by the guiding principles of POR is a strong equity-focused approach to bridging the gap between research evidence and high-quality, timely, appropriate, cost-effective patient care. We describe the value of a LHS and identify nine enablers to support successful LHSs using a local case study.

What is a learning health system and the connection to patient-oriented research?

Over the last decade, the concept of a LHS has been gaining traction in the healthcare sphere. There are many definitions of the term, but in essence, a learning health system systematically integrates external evidence with internal data and experience and puts that knowledge into practice in a continuous cycle.⁹ The LHS is an alignment of people, process, policy, and data to enable continuous evaluation of outcomes associated with the uptake of innovation and new knowledge from research and quality improvement. LHSs create a mechanism for bringing existing and context-specific evidence into the health system in a timely way, and ensuring ongoing improvement and course corrections are built into care delivery. Additionally, they continuously assess outcomes and refinea processes to create a feedback cycle of learning and improvement.

As illustrated in Figure 1, a LHS includes cycles of data-to-knowledge-to-practice where research evidence and innovation is also being integrated in real time to improve decision-making and guide care. Menear and colleagues developed a more detailed framework for the Canadian context, expanding on the simple LHS cycles to capture the complexity of the healthcare system and include core values as well as LHS pillars: scientific, social, technological, policy, legal, and ethical.¹⁰ In 2023, another group of Canadian researchers, Reid et al. created the LHS Action Framework that includes five learning gears and “the fuel, accelerants, moderators, and brakes that allows the LHS to have continuous, interconnected impact on health systems.”^11(p1)

Figure 1.

Learning health system (adapted from references 9,12).

In a LHS that is grounded in POR, the multidisciplinary team at the centre of Figure 1 includes patients and community as core members, along with researchers, clinicians, decision-makers, and other interest-holders required for the success of continuous LHS cycles¹³. This co-production of knowledge and meaningful engagement of patients are key principles of POR and if embedded in a LHS promote the inclusion of voices that are often under-represented.

A LHS works to achieve the Quintuple Aim in the pursuit of improved: (1) health equity; (2) population health outcomes; (3) patient experience; (4) care provider well-being; and (5) lower costs.^14,15 Health system improvements that advance health equity purposefully focus on individuals and communities who need improvement and innovation the most. With patients and community meaningfully embedded in LHSs, equity, diversity, inclusion, and cultural safety are integrated into policy and practice. When equity-informed evidence is systematically applied to healthcare decision-making, population health outcomes and patient experiences should improve—irrespective of social position or other socially determined circumstances.^16,17 Moreover, when healthcare providers are involved in a LHS, they are empowered by being a part of continuous improvement. This positively impacts the human resource experience and may help to address the national health human resources crisis through better recruitment and retention. Finally, one of the key aims of a learning health system is to contribute to value-based healthcare to ensure that evidence-based decision-making also addresses cost-effectiveness.¹⁰

There is a growing number of theoretical papers on LHSs,^9-13,18-24 including several highlighting the importance of patient engagement in a LHS.^{11,12,18-20,23,24} However, few papers provide concrete examples of how a LHS has been implemented or supported in a Canadian health system context. To address this gap, we use a case study to illustrate an emerging LHS within Island Health, one of five regional health authorities in British Columbia, Canada.

A LHS example: Walk With Me

In the face of an ongoing public health emergency related to the toxic drug crisis, a group of researchers, outreach workers, Indigenous Elders/Traditional Knowledge Keepers, artists, and People With Lived and Living Experience (PWLLE)² have come together in a spirit of solidarity to re-examine the crisis and imagine new ways forward. This team, Walk With Me (WWM), brings together multiple and diverse sets of knowledge and experience to co-produce research evidence, sharing insights and recommendations across normally rigid community and organizational lines (see Ref. 25 for a full description of this engagement process and how it aligns with POR guiding principles). WWM conducts various forms of POR, including hosting “Story Walks,” where groups of participants, largely but not limited to health authority leaders and clinicians, are guided on curated outdoor audio walks as they listen to stories of the drug poisoning crisis gifted to the project from PWLLE, family members, and direct care providers. Participants in these initiatives deepen their understanding of the personal and systemic impact of the crisis and are supported to imagine pathways forward through talking circles following the Story Walk. These pathways forward have been documented in the form of research reports, policy briefs and strategy documents, and specific recommendations have been identified as part of the research process.

For the last four years, WWM has been working across communities and within Island Health acute care facilities to better understand the ways in which the toxic drug poisoning crisis is impacting people and systems. To further this work, in June 2023, Dr. Sharon Karsten, WWM Project Director, received a Michael Smith Health Research BC Scholar award titled Co-Developing a Learning Health System with People with Lived/Living Experience of Substance Use: A response to the toxic drug crisis. This five-year award allows Dr. Karsten to continue to work with Island Health to develop recommendations aimed at improving the way healthcare systems support those at the heart of the crisis. To determine areas for improvement and pathways forward (e.g., reducing stigma and closing service gaps), the WWM team which includes an Elder/Knowledge Keeper (Elder Barbara Whyte) and a PWLLE (Christopher Hauschildt), documents conversations and insights from both Island Health staff and PWLLE (data-to-knowledge). These recommendations inform policy and practice changes (knowledge-to-practice) and further data is continually being collected to iteratively assess ongoing system improvement efforts (practice-to-data). Ultimately, the goal of this LHS is to foreground the voices of PWLLE, promote equity in decision-making, create new ways forward, and reduce mortality while improving quality of life.

Enablers to creating learning health systems within healthcare organizations

Given the complexities inherent in the health system and the context-specific considerations of each LHS, there is no one-size-fits-all approach.³ Considering this complexity alongside many theoretical frameworks on learning health systems,^3,9-13,18-24 and based on our experience of supporting several emerging LHSs, we have identified nine enablers that support successful LHSs (see Figure 2).

Figure 2.

Enablers of learning health system capacity development.

Leaders are key to these enablers as they must integrate the LHS into strategic and operational plans; provide the resources and infrastructure; build and sustain effective teams; and be accountable to optimize the ability of those receiving services to shape the evidence and processes to inform them. Below we explain the nine enablers in more detail and, using WWM as a case study, we illustrate how they are operationalized within Island Health (see Table 1).

Table 1.

LHS enablers and WWM case study examples.

LHS Enabler	WWM Case study
Multi-level leadership support
Grounded in the LEADS leadership competencies of developing coalitions and engaging others,²⁶ support from all levels of leadership (executive, director, and local “champions”) results in LHS effectiveness	The WWM team has developed a network of relationships with Island Health leadership. In creating organizational projects, the team has received support from the executive leadership team, as well as executive directors, directors, and managers across various departments and programs. WWM has hosted multiple strategic sessions with Island Health leaders, including sessions rooted in explorations surrounding equity in decision-making, and in the importance of engaging PWLLE in leadership. WWM is engaged in an ongoing collaboration with Island Health’s Department of Innovation, and with its Research Department, and through these avenues continues to explore systems change potentials
Shared goals and priorities
The goals of the LHS must align with health system priorities	Mitigating the harms and impacts of the toxic drug crisis is a priority at the provincial and health authority level; a goal shared by all parties that enables buy-in
Co-production of knowledge
Knowledge co-production must be integrated into organizational structures and strategies, and all relevant interest-holders engaged as members of the LHS team	WWM is working with key leaders (executive and director level) and partners within Island Health, including harm reduction managers, hospital site leads, and research/innovation leads. Through these connections, WWM works to co-develop its research to achieve maximum relevance to Island Health. Additionally, PWLLE are embedded as key team members acknowledged and valued for the expertise they bring
Mechanisms for informing policies and practices
LHS cycles must include mechanisms to inform policies and practices (i.e., standing meetings like huddles) to review data dashboards, and implementation meetings to discuss what/how changes have been (or will be) put into practice and policies	WWM has produced reports with context-specific recommendations that name the change agents responsible (see: https://www.walkwithme.ca/publications); presented to and participated in regular meetings with multi-level leadership; and advocated for PWLLE to be embedded in positions where they can inform decision-making, as well as be in paid positions within the health authority (with institutional supports in place)
Embedded research and patient engagement supports
Within the health system, research, knowledge translation (KT), and patient engagement (PE) supports must be in place to ensure that LHS work has the expertise and resources in place to succeed²⁷	Island Health has both internal operationally-funded positions that support research, KT and PE (i.e., research navigation coordinator; KT coordinator, research facilitator; patient and public research engagement manager; LHS facilitator; and research education and grant facilitator), as well as externally funded positions through the BC SUPPORT Unit (i.e., knowledge broker; patient and public research engagement lead). Many of them work closely with WWM to support their LHS work. WWM’s research framework also includes their own research and KT supports, some of which include ongoing connection with and involvement of PWLLE leaders, Elders/Knowledge Keepers, outreach workers, professional counsellors. These support positions provide a nuanced and multi-layered safety-net
Adequate resourcing
Funding is required for LHS to be implemented, including staffing and other infrastructure supports	Several multi-year research grants support this work: a 5-year salary award for the project director (Michael Smith Health Research BC Scholar award); funding from Island Health (2 successful RFPs for experiential learnings and research and 2 grants); funding from the Canada Council for the Arts (Grow Grant), and from the National Sciences and Engineering Research Council (College and Community Social Innovation Fund). These grants fund staff and infrastructure required for the LHS
Accountability
Accountability structures (e.g., clear roles and responsibilities) need to be in place to ensure LHS work is prioritized and findings and recommendations are implemented	WWM has a multifaceted accountability framework in relation to its research funding and responsibilities, including accountability to Island Health, grants and funders, community partners, research ethics boards. This framework fosters both research independence, and ongoing relevance of this work within Island Health and the patient communities it serves
Strategic communication and knowledge mobilization
Communication and knowledge mobilization strategies increase uptake of knowledge translation and ensure that findings from the LHS cycles are implemented	WWM activates a multi-platform knowledge mobilization strategy that includes Story Walks, policy research reports, and strategic visioning sessions and reports, among others. The project team strives to make research findings accessible to diverse audiences including health and policy actors and health researchers, direct care workers, PWLLE and the general public. WWM has successfully produced unconventional audio-based outputs designed to communicate its research and findings in plain language
Data access and supports
Internal infrastructure and external supports must enable data to be accessed, collected, aggregated, analyzed and acted upon; this includes ethical use of data and privacy considerations¹⁰ as well as Indigenous developed frameworks²⁸	WWM has gained ethics approval for its work from the Island Health Research Ethics Board, as well as from a series of University/College Research Ethics Boards (Vancouver Island University, North Island College, Thompson Rivers University). The ethics protocols it uses to conduct its work provide multiple consent options (including non-consent). These approvals allow the data collected through the research to be accessed, collected, aggregated, and analyzed, after which the WWM team produces recommendations designed to spur action. Participant safety and consent are a key part of WWM’s work as the team strives to go above-and-beyond standard ethics processes, recognizing relationship and ongoing consent as key within this work. The team continues to work in-relationship with many of the PWLLE who have given stories and insights to this project

Conclusions

POR adds value to the health system by bridging research-to-practice gaps and ensuring that patient priorities inform health service delivery. WWM as a LHS case study illustrates the potential of POR to create the conditions for meaningful, patient-led systems change. An important aspect of a LHS lies in its potential to facilitate a continuous cycle of learning so that research, innovation, and the co-production of knowledge is embedded into clinical governance in the health system. The co-production of knowledge and meaningful engagement of patients within a LHS supports the ongoing inclusion of voices that are often under-represented and therefore has the strong potential to promote equity.²⁹ Further, a learning health system approach fosters innovation and creates a culture of continuous learning and improvement; the systematic integration of high-quality knowledge encourages agility in the health system and enables policy and practice to respond in a timely manner to the needs of the communities it serves. A LHS grounded in POR requires effort and commitment to implement, but the potential value is significant across all aspects of the Quintuple Aim.¹⁵

Footnotes

Acknowledgements

Island Health and Walk With Me acknowledge with respect and humility the Coast Salish, Nuu-chah-nulth and Kwakwaka’wakw People on whose unceded traditional territories we offer our services and programs. We would like to thank Annie Moore for her exceptional editing skills.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Dr. Sharon Karsten is a Michael Smith Health Research BC 2023 Scholar Award recipient (host University is the Vancouver Island University) which provides five years of salary funding. Heather Strosher and Taylor Hainstock are funded through the BC SUPPORT Unit which is funded through the Canadian Institutes for Health Research (Strategy for Patient-Oriented Research).

Ethical approval

Institutional Review Board approval was not required.

ORCID iD

Heather Strosher

Notes

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