Learning together for better health using an evidence-based Learning Health System framework: a case study in stroke.

BACKGROUND: In the context of expanding digital health tools, the health system is ready for Learning Health System (LHS) models. These models, with proper governance and stakeholder engagement, enable the integration of digital infrastructure to provide feedback to all relevant parties including clinicians and consumers on performance against best practice standards, as well as fostering innovation and aligning healthcare with patient needs. The LHS literature primarily includes opinion or consensus-based frameworks and lacks validation or evidence of benefit. Our aim was to outline a rigorously codesigned, evidence-based LHS framework and present a national case study of an LHS-aligned national stroke program that has delivered clinical benefit. MAIN TEXT: Current core components of a LHS involve capturing evidence from communities and stakeholders (quadrant 1), integrating evidence from research findings (quadrant 2), leveraging evidence from data and practice (quadrant 3), and generating evidence from implementation (quadrant 4) for iterative system-level improvement. The Australian Stroke program was selected as the case study as it provides an exemplar of how an iterative LHS works in practice at a national level encompassing and integrating evidence from all four LHS quadrants. Using this case study, we demonstrate how to apply evidence-based processes to healthcare improvement and embed real-world research for optimising healthcare improvement. We emphasize the transition from research as an endpoint, to research as an enabler and a solution for impact in healthcare improvement. CONCLUSIONS: The Australian Stroke program has nationally improved stroke care since 2007, showcasing the value of integrated LHS-aligned approaches for tangible impact on outcomes. This LHS case study is a practical example for other health conditions and settings to follow suit.

Enabling Connected Care with a Person-Centred Data Foundation.

Having the right information at the right time and at the fingertips of the right individuals is not just a necessity for a well-functioning healthcare system but it is also the difference between life and death for Canadians. It is particularly critical to enable improved access to and quality of care for equity-deserving individuals because these data eliminate blind spots for clinicians, policy makers and system planners. The COVID-19 pandemic put a spotlight on the health data challenges that exist across Canada and the tangible impact those have on the healthcare system's ability to meet the needs of underserved populations. It sparked unified urgency at the federal and provincial/territorial levels to build a learning health system powered by connected health data for clinical care, patient access, care organization operations, health system use and population/public health. Person-centric data content standards will lie at the foundation of Canada's learning health system, enabling the creation and exchange of data.

Using implementation science to operate as a learning health system to improve outcomes in early psychosis.

AIM: Early interventions are well understood to improve psychosis outcomes, but their successful implementation remains limited. This article introduces a three-step roadmap for advancing the implementation of evidence-based practices to operate as a learning health system, which can be applied to early interventions for psychosis and is intended for an audience that is relatively new to systematic approaches to implementation. METHODS: The roadmap is grounded in implementation science, which specializes in methods to promote routine use of evidence-based innovations. The roadmap draws on learning health system principles that call for commitment of leadership, application of evidence, examination of care experiences, and study of health outcomes. Examples are discussed for each roadmap step, emphasizing both data- and stakeholder-related considerations applicable throughout the roadmap. CONCLUSIONS: Early psychosis care is a promising topic through which to discuss the critical need to move evidence into practice. Despite remarkable advances in early psychosis interventions, population-level impact of those interventions is yet to be realized. By providing an introduction to how implementation science principles can be operationalized in a learning health system and sharing examples from early psychosis care, this article prompts inclusion of a wider audience in essential discourse on the role that implementation science can play for moving evidence into practice for other realms of psychiatric care as well. To this end, the proposed roadmap can serve as a conceptual guiding template and framework through which various psychiatric services can methodically pursue timely implementation of evidence-based interventions for higher quality care and improved outcomes.

Progress with the Learning Health System 2.0: a rapid review of Learning Health Systems' responses to pandemics and climate change.

BACKGROUND: Pandemics and climate change each challenge health systems through increasing numbers and new types of patients. To adapt to these challenges, leading health systems have embraced a Learning Health System (LHS) approach, aiming to increase the efficiency with which data is translated into actionable knowledge. This rapid review sought to determine how these health systems have used LHS frameworks to both address the challenges posed by the COVID-19 pandemic and climate change, and to prepare for future disturbances, and thus transition towards the LHS2.0. METHODS: Three databases (Embase, Scopus, and PubMed) were searched for peer-reviewed literature published in English in the five years to March 2023. Publications were included if they described a real-world LHS's response to one or more of the following: the COVID-19 pandemic, future pandemics, current climate events, future climate change events. Data were extracted and thematically analyzed using the five dimensions of the Institute of Medicine/Zurynski-Braithwaite's LHS framework: Science and Informatics, Patient-Clinician Partnerships, Continuous Learning Culture, Incentives, and Structure and Governance. RESULTS: The search yielded 182 unique publications, four of which reported on LHSs and climate change. Backward citation tracking yielded 13 additional pandemic-related publications. None of the climate change-related papers met the inclusion criteria. Thirty-two publications were included after full-text review. Most were case studies (n = 12, 38%), narrative descriptions (n = 9, 28%) or empirical studies (n = 9, 28%). Science and Informatics (n = 31, 97%), Continuous Learning Culture (n = 26, 81%), Structure and Governance (n = 23, 72%) were the most frequently discussed LHS dimensions. Incentives (n = 21, 66%) and Patient-Clinician Partnerships (n = 18, 56%) received less attention. Twenty-nine papers (91%) discussed benefits or opportunities created by pandemics to furthering the development of an LHS, compared to 22 papers (69%) that discussed challenges. CONCLUSIONS: An LHS 2.0 approach appears well-suited to responding to the rapidly changing and uncertain conditions of a pandemic, and, by extension, to preparing health systems for the effects of climate change. LHSs that embrace a continuous learning culture can inform patient care, public policy, and public messaging, and those that wisely use IT systems for decision-making can more readily enact surveillance systems for future pandemics and climate change-related events. TRIAL REGISTRATION: PROSPERO pre-registration: CRD42023408896.

Learning Health Systems: A Paradigm Shift in What We Can Do about Digital Health Inequities.

Learning health systems (LHSs) embed social accountability into everyday workflows and can inform how governments build bridges across the digital health divide. They shape partnerships using rapid cycles of data-driven learning to respond to patients' calls to action for equity from digital health. Adopting the LHS approach involves re-distributing power, which is likely to be met with resistance. We use the LHS example of British Columbia's 811 services to highlight how infrastructure was created to provide care and answer questions about access to digital health, outcomes from it and the financial impact passed on to patients. In the concluding section, we offer an accountability framework that facilitates partnerships in making digital health more equitable.

Shifting gears: Creating equity informed leaders for effective learning health systems.

Leadership is vital to a well-functioning and effective health system. This importance was underscored during the COVID-19 pandemic. As disparities in infection and mortality rates became pronounced, greater calls for equity-informed healthcare emerged. These calls led some leaders to use the Learning Health System (LHS) approach to quickly transform research into healthcare practice to mitigate inequities causing these rates. The LHS is a relatively new framework informed by many within and outside health systems, supported by decision-makers and financial arrangements and encouraged by a culture that fosters quick learning and improvements. Although studies indicate the LHS can enhance patients' health outcomes, scarce literature exists on health leaders' use and incorporation of equity into the LHS. This article begins addressing this gap by examining how equity can be incorporated into LHS activities and discussing ways leaders can ensure equity is considered and achieved in rapid learning cycles.

Exploration of the Voice of the Patient in Learning Health Systems: A Socio-Technical Perspective.

Despite learning health systems' focus on including the patients in improving healthcare services, research shows they are still considered participants, not partners. This article aims to provide practical guidance for recognizing and including the Voice of the Patient (VoP) as data in a continuous LHS by describing how the VoP can present itself, how it can be incorporated into the LHS and the barriers and enablers for doing so. Five key domains were identified to consider when including the patient perspective. The use of technology could be a facilitator for patients to provide their perspectives. However, there is a risk of increased health inequity by reducing the VoP of patients with low health or digital literacy.

Interdisciplinary Learning Health System Response to Public Vaccine Concerns.

In Victoria, Australia, jurisdictional vaccine safety service is conducted by SAEFVIC (Surveillance of Adverse Events Following Vaccination in the Community). SAEFVIC developed a public Vaccine Safety Report (saefvic.online/vaccinesafety) to present key surveillance information. This study applies an interdisciplinary learning health system approach to evaluate the report, taking into consideration public expressions of concern on social media.

Designing an Interprofessional Online Course to Foster Learning Health Systems.

The Learning Health Systems (LHS) framework demonstrates the potential for iterative interrogation of health data in real time and implementation of insights into practice. Yet, the lack of appropriately skilled workforce results in an inability to leverage existing data to design innovative solutions. We developed a tailored professional development program to foster a skilled workforce. The short course is wholly online, for interdisciplinary professionals working in the digital health arena. To transform healthcare systems, the workforce needs an understanding of LHS principles, data driven approaches, and the need for diversly skilled learning communities that can tackle these complex problems together.

Building a vertically integrated genomic learning health system: The biobank at the Colorado Center for Personalized Medicine.

Precision medicine initiatives across the globe have led to a revolution of repositories linking large-scale genomic data with electronic health records, enabling genomic analyses across the entire phenome. Many of these initiatives focus solely on research insights, leading to limited direct benefit to patients. We describe the biobank at the Colorado Center for Personalized Medicine (CCPM Biobank) that was jointly developed by the University of Colorado Anschutz Medical Campus and UCHealth to serve as a unique, dual-purpose research and clinical resource accelerating personalized medicine. This living resource currently has more than 200,000 participants with ongoing recruitment. We highlight the clinical, laboratory, regulatory, and HIPAA-compliant informatics infrastructure along with our stakeholder engagement, consent, recontact, and participant engagement strategies. We characterize aspects of genetic and geographic diversity unique to the Rocky Mountain region, the primary catchment area for CCPM Biobank participants. We leverage linked health and demographic information of the CCPM Biobank participant population to demonstrate the utility of the CCPM Biobank to replicate complex trait associations in the first 33,674 genotyped individuals across multiple disease domains. Finally, we describe our current efforts toward return of clinical genetic test results, including high-impact pathogenic variants and pharmacogenetic information, and our broader goals as the CCPM Biobank continues to grow. Bringing clinical and research interests together fosters unique clinical and translational questions that can be addressed from the large EHR-linked CCPM Biobank resource within a HIPAA- and CLIA-certified environment.

Learning health systems and evidence ecosystems: a perspective on the future of evidence-based medicine and evidence-based guideline development.

Despite forming the cornerstone of modern clinical practice for decades, implementation of evidence-based medicine at scale remains a crucial challenge for health systems. As a result, there has been a growing need for conceptual models to better contextualise and pragmatize the use of evidence-based medicine, particularly in tandem with patient-centred care. In this commentary, we highlight the emergence of the learning health system as one such model and analyse its potential role in pragmatizing both evidence-based medicine and patient-centred care. We apply the learning health system lens to contextualise the key activity of evidence-based guideline development and implementation, and highlight how current inefficiencies and bottlenecks in the evidence synthesis phase of evidence-based guideline development threaten downstream adherence. Lastly, we introduce the evidence ecosystem as a complementary model to learning health systems, and propose how innovative developments from the evidence ecosystem may be integrated with learning health systems to better enable health impact at speed and scale.

Promoting Learning Health System Cycles by Optimizing EHR Data Clinical Concept Encoding Processes.

Electronic health records (EHRs) and other real-world data (RWD) are critical to accelerating and scaling care improvement and transformation. To efficiently leverage it for secondary uses, EHR/RWD should be optimally managed and mapped to industry standard concepts (ISCs). Inherent challenges in concept encoding usually result in inefficient and costly workflows and resultant metadata representation structures outside the EHR. Using three related projects to map data to ISCs, we describe the development of standard, repeatable processes for precisely and unambiguously representing EHR data using appropriate ISCs within the EHR platform lifecycle and mappings specific to SNOMED-CT for Demographics, Specialty and Services. Mappings in these 3 areas resulted in ISC mappings of 779 data elements requiring 90 new concept requests to SNOMED-CT and 738 new ISCs mapped into the workflow within an accessible, enterprise-wide EHR resource with supporting processes.

Planning for Actionable Precision Medicine.

Genome-guided precision medicine applies consensus recommendations to the care of patients with particular genetic variants. As electronic health records begin to include patients' genomic data, recommendations will be formulated at an increasing rate. This study examined recommendations related to the current list of 73 actionable genes compiled by the American College of Medical Genetics and Genomics and found that conditions fall generally into five classes (cardiovascular, medication interactions, metabolic, neoplastic, and structural), with recommendations falling into seven categories (actions or circumstances to avoid, evaluation of relatives at risk, pregnancy management, prevention of primary manifestations, prevention of secondary complications, surveillance, and treatment of manifestations). This study represents a first step in facilitating automated, scalable clinical decision support and provides direction on formal representation of the contexts and actions for clinical recommendations derived from genome-informed learning health systems.

Defining the Learning Health Care System: An International Health System Leadership Perspective.

PURPOSE: Over the past 2 decades, many academic health centers (AHCs) have implemented learning health systems (LHSs). However, the LHS has been defined with limited input from AHC leaders. This has implications because these individuals play a critical role in LHS implementation and sustainability. This study aims to demonstrate how an international group of AHC leaders defines the LHS, and to identify key considerations they would pose to their leadership teams to implement and sustain the LHS. METHOD: A semistructured survey was developed and administered in 2022 to members of the Association of Academic Health Centers President's Council on the Learning Health System to explore how AHC leaders define the LHS in relation to their leadership roles. The authors then conducted a focus group, informed by the survey, with these leaders. The focus group was structured using the nominal group technique to facilitate consensus on an LHS definition and key considerations. The authors mapped the findings to an existing LHS framework, which includes 7 components: organizational, performance, ethics and security, scientific, information technology, data, and patient outcomes. RESULTS: Thirteen AHC leaders (100%) completed the survey and 10 participated in the focus group. The AHC leaders developed the following LHS definition: "A learning health system is a health care system in which clinical and care-related data are systematically integrated to catalyze discovery and implementation of new knowledge that benefits patients, the community, and the organization through improved outcomes." The key considerations mapped to all LHS framework components, but participants also described as important the ability to communicate the LHS concept and be able to rapidly adjust to unforeseen circumstances. CONCLUSIONS: The LHS definition and considerations developed in this study provide a shared foundation and road map for future discussions among leaders of AHCs interested in implementing and sustaining an LHS.

Qualitative Interviews to Add Patient Perspectives in Colorectal Cancer Screening: Improvements in a Learning Health System.

Health systems are interested in increasing colorectal cancer (CRC) screening rates as CRC is a leading cause of preventable cancer death. Learning health systems are ones that use data to continually improve care. Data can and should include qualitative local perspectives to improve patient and provider education and care. This study sought to understand local perspectives on CRC screening to inform future strategies to increase screening rates across our integrated health system. Health insurance plan members who were eligible for CRC screening were invited to participate in semi-structured phone interviews. Qualitative content analysis was conducted using an inductive approach. Forty member interviews were completed and analyzed. Identified barriers included ambivalence about screening options (e.g., "If it had the same performance, I'd rather do home fecal sample test. But I'm just too skeptical [so I do the colonoscopy]."), negative prior CRC screening experiences, and competing priorities. Identified facilitators included a positive general attitude towards health (e.g., "I'm a rule follower. There are certain things I'll bend rules. But certain medical things, you just got to do."), social support, a perceived risk of developing CRC, and positive prior CRC screening experiences. Study findings were used by the health system leaders to inform the selection of CRC screening outreach and education strategies to be tested in a future simulation model. For example, the identified barrier related to ambivalence about screening options led to a proposed revision of outreach materials that describe screening types more clearly.

Assessing Alternative Approaches for Wound Closure in a National Pediatric Learning Health System.

INTRODUCTION: Our objective was to perform a feasibility study using real-world data from a learning health system (LHS) to describe current practice patterns of wound closure and explore differences in outcomes associated with the use of tissue adhesives and other methods of wound closure in the pediatric surgical population to inform a potentially large study. METHODS: A multi-institutional cross-sectional study was performed of a random sample of patients <18 y-old who underwent laparoscopic appendectomy, open or laparoscopic inguinal hernia repair, umbilical hernia repair, or repair of traumatic laceration from January 1, 2019, to December 31, 2019. Sociodemographic and operative characteristics were obtained from 6 PEDSnet (a national pediatric LHS) children's hospitals and OneFlorida Clinical Research Consortium (a PCORnet collaboration across 14 academic health systems). Additional clinical data elements were collected via chart review. RESULTS: Of the 692 patients included, 182 (26.3%) had appendectomies, 155 (22.4%) inguinal hernia repairs, 163 (23.6%) umbilical hernia repairs, and 192 (27.8%) traumatic lacerations. Of the 500 surgical incisions, sutures with tissue adhesives were the most frequently used (n = 211, 42.2%), followed by sutures with adhesive strips (n = 176, 35.2%), and sutures only (n = 72, 14.4%). Most traumatic lacerations were repaired with sutures only (n = 127, 64.5%). The overall wound-related complication rate was 3.0% and resumption of normal activities was recommended at a median of 14 d (interquartile ranges 14-14). CONCLUSIONS: The LHS represents an efficient tool to identify cohorts of pediatric surgical patients to perform comparative effectiveness research using real-world data to support medical and surgical products/devices in children.

21st century (clinical) decision support in nursing and allied healthcare. Developing a learning health system: a reasoned design of a theoretical framework.

In this paper, we present a framework for developing a Learning Health System (LHS) to provide means to a computerized clinical decision support system for allied healthcare and/or nursing professionals. LHSs are well suited to transform healthcare systems in a mission-oriented approach, and is being adopted by an increasing number of countries. Our theoretical framework provides a blueprint for organizing such a transformation with help of evidence based state of the art methodologies and techniques to eventually optimize personalized health and healthcare. Learning via health information technologies using LHS enables users to learn both individually and collectively, and independent of their location. These developments demand healthcare innovations beyond a disease focused orientation since clinical decision making in allied healthcare and nursing is mainly based on aspects of individuals' functioning, wellbeing and (dis)abilities. Developing LHSs depends heavily on intertwined social and technological innovation, and research and development. Crucial factors may be the transformation of the Internet of Things into the Internet of FAIR data & services. However, Electronic Health Record (EHR) data is in up to 80% unstructured including free text narratives and stored in various inaccessible data warehouses. Enabling the use of data as a driver for learning is challenged by interoperability and reusability.To address technical needs, key enabling technologies are suitable to convert relevant health data into machine actionable data and to develop algorithms for computerized decision support. To enable data conversions, existing classification and terminology systems serve as definition providers for natural language processing through (un)supervised learning.To facilitate clinical reasoning and personalized healthcare using LHSs, the development of personomics and functionomics are useful in allied healthcare and nursing. Developing these omics will be determined via text and data mining. This will focus on the relationships between social, psychological, cultural, behavioral and economic determinants, and human functioning.Furthermore, multiparty collaboration is crucial to develop LHSs, and man-machine interaction studies are required to develop a functional design and prototype. During development, validation and maintenance of the LHS continuous attention for challenges like data-drift, ethical, technical and practical implementation difficulties is required.