Kayla R. Mehl, Stephanie R. Morain, Jeremy Sugarman
{"title":"Empirical research related to the ethics of pragmatic clinical trials: A scoping review","authors":"Kayla R. Mehl, Stephanie R. Morain, Jeremy Sugarman","doi":"10.1002/lrh2.70041","DOIUrl":"https://doi.org/10.1002/lrh2.70041","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Pragmatic clinical trials (PCTs) offer insights into real-world intervention effectiveness, but they may involve challenging ethical issues. Empirical ethics research may inform deliberations about them.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>We conducted a scoping review of empirical ethics research related to PCTs. This involved searching in PubMed and Embase, charting findings, and analyzing themes to identify trends and gaps.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Eighty-two publications were included, which examined a vast number of issues encompassing 22 themes. The five most prominent were: consent/disclosure; risk assessment; trust and transparency; burdens, barriers, and costs; and engagement. Written consent is often impractical, prompting interest in opt-out or general notification approaches. Challenges in risk assessment include variability in defining minimal risk, thereby complicating regulatory determinations for the appropriateness of particular participant protections and communicating research risks. Trust-building practices, such as result-sharing and data-use disclosure, can foster confidence. Stakeholder engagement can address logistical barriers, improve recruitment, and align research with participant needs. Time, financial, and regulatory burdens are significant obstacles to implementing PCTs.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>There has been progress in understanding many ethical issues encountered in PCTs, including appropriately navigating alternatives to obtaining written informed consent, trust-building, and the operational role of stakeholder engagement. However, critical gaps remain, with research concentrated in Western contexts and reliant on surveys and hypothetical scenarios, limiting generalizability and real-world insights. Addressing these gaps with geographically inclusive studies, innovative methods, and nested empirical work will be important for more comprehensively understanding the ethical issues in PCTs and developing appropriate approaches to mitigating them.</p>\u0000 </section>\u0000 </div>","PeriodicalId":43916,"journal":{"name":"Learning Health Systems","volume":"10 1","pages":""},"PeriodicalIF":2.6,"publicationDate":"2025-10-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/lrh2.70041","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146002077","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Meghan McMahon, Rhonda Boateng, Richard H. Glazier, Stephen Bornstein, Shanthi Johnson, Carl-Ardy Dubois, Matthew Menear, Tara Sampalli, Tracy Wasylak, Deborah Marshall, Denis Roy, Deepa Singal, Adalsteinn Brown
{"title":"Enriched core competencies for health services and policy research—An update","authors":"Meghan McMahon, Rhonda Boateng, Richard H. Glazier, Stephen Bornstein, Shanthi Johnson, Carl-Ardy Dubois, Matthew Menear, Tara Sampalli, Tracy Wasylak, Deborah Marshall, Denis Roy, Deepa Singal, Adalsteinn Brown","doi":"10.1002/lrh2.70032","DOIUrl":"https://doi.org/10.1002/lrh2.70032","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Objective</h3>\u0000 \u0000 <p>Doctoral and postdoctoral training in health services and policy research (HSPR) needs to evolve to address changing career trajectories, emerging health system challenges, and the advancement of learning health systems. This changing landscape necessitates examination of the core competencies that underpin training. This study presents a refreshed set of core competencies for HSPR to guide the modernization of training and considerations for implementation.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Qualitative methods and an iterative development process with extensive community engagement throughout were used. Data were obtained from multiple sources, including literature reviews, surveys, key informant interviews, focus groups, Task Force meetings, a consensus workshop, and a validation process (Fall 2022 to May 2024). The study setting is Canada.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The refreshed core competencies include nine essential domains that maintain an emphasis on rigorous scholarly preparation and prioritize leadership and other professional skills deemed essential to contribute to evidence-informed system improvement and learning health systems. Additionally, the framework features two new transversal domains: Equity, Diversity, Inclusion, Accessibility, and Anti-Oppression; and Indigenous Cultural Safety and Humility. These domains are considered fundamental principles to be embedded into all aspects of HSPR competencies and training, fostering more inclusive and equitable leaders and health systems.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>As health systems continuously evolve, so too should the questions researchers address, the methods they use, and the skills needed to maximize contributions to evidence-informed health system improvement and learning health systems. The refreshed core competencies for HSPR maintain important continuity with the inaugural competency framework while also including several important additions. The framework allows for flexibility in its implementation and us; it can be used to guide the enhancement of existing training programs, the development of new ones, and the growth and development of a HSPR workforce with the skills to lead and contribute within learning health systems.</p>\u0000 </section>\u0000 </div>","PeriodicalId":43916,"journal":{"name":"Learning Health Systems","volume":"10 1","pages":""},"PeriodicalIF":2.6,"publicationDate":"2025-09-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/lrh2.70032","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146002474","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Navigating and reframing tensions within equity-centered learning health systems","authors":"Ibukun-Oluwa Omolade Abejirinde, Brianne Wood","doi":"10.1002/lrh2.70040","DOIUrl":"10.1002/lrh2.70040","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>Canada recently joined a growing list of countries that are establishing national collaboratives to exchange knowledge on and scale learning health systems (LHSs) across geographies and sectors. The first symposium of the pan-Canadian Learning Health Hub was held in June 2024 and included a keynote presentation and breakout discussions on how to operationalize equity in LHSs.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>In preparing for the keynote presentation, we examined the literature, reflected on our experiences building LHSs that have an equity focus, and on discussions we have had with other LHS practitioners on where and how equity manifests within a LHS.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Through our preparation, we identified three tensions that are inherent to and result from centering equity in LHSs: (i) Divergent definitions and languages of health equity (the tension of language); (ii) rapid learning versus slow engagement (the tension of pace); and (iii) equity as a driver and an outcome (the tension of dual roles). In this analysis, we present how these tensions manifest in the practice of equity and LHSs alongside strategies for navigating and reframing these tensions to catalyze dynamic learning.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>For individuals and organizations interested in advancing equity-oriented LHSs, in Canada and other jurisdictions, this paper highlights how and why the goal should not be to avoid these tensions, but rather to navigate the push-pull inherent in our contexts with intention and a commitment to transformative action.</p>\u0000 </section>\u0000 </div>","PeriodicalId":43916,"journal":{"name":"Learning Health Systems","volume":"10 2","pages":""},"PeriodicalIF":2.6,"publicationDate":"2025-09-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12900621/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146203245","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Brittany Garcia, Michael Hogarth, Yu Wang, Xi Zhu, Shin-Ping Tu
{"title":"Multi-site research using electronic health record data: Lessons learned from a case study","authors":"Brittany Garcia, Michael Hogarth, Yu Wang, Xi Zhu, Shin-Ping Tu","doi":"10.1002/lrh2.70039","DOIUrl":"https://doi.org/10.1002/lrh2.70039","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>Multi-site research collaboration is necessary to increase generalizability, diversity, and innovation; however, there are complexities and challenges surrounding research processes, including regulatory oversight, data management, and data sharing activities. This report highlights the specific challenges of collaborative research identified in the conduct of a federally funded multi-site study and presents lessons learned to inform ways to overcome these challenges. The purpose of our current research project is to determine how interprofessional teamwork affects quality outcomes and develop tools to improve teamwork in cancer care.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Our research team is comprised of 23 members across five academic institutions. Our study cohort includes approximately 20 000 adult patients with breast, colorectal, and non-small cell lung cancers diagnosed at the respective sites between January 1, 2016, and December 31, 2021. Electronic health record (EHR) access log data was extracted 12 months pre- and 24 months post-diagnosis for each patient, and outcome data of potentially preventable emergency department visits and unplanned hospitalizations was extracted from the California state All-Payer Claims database.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Major challenges experienced related to single institutional review board processes, establishment of contract agreements, and data management, analysis, acquisition, and transfer. Lessons learned included: (1) start research planning as early as possible, including engaging with information technology and compliance teams to identify processes and develop and share data dictionaries; (2) work closely with the institution contracting team to identify the most optimal timing and ordering for multiple data use agreement (DUA) contracts; and (3) ensure that research team members are abreast of current Health Insurance Portability and Accountability Act and institutional guidelines as they pertain to research and data practices.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Multi-site research involving big data from the EHR requires ample planning and execution time. Adopting a single standardized DUA and developing data dictionaries that can be shared for research will improve the data acquisition phase of multi-site research studies.</p>\u0000 </section>\u0000 </div>","PeriodicalId":43916,"journal":{"name":"Learning Health Systems","volume":"9 4","pages":""},"PeriodicalIF":2.6,"publicationDate":"2025-09-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/lrh2.70039","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145375260","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Shelley Vanderhout, Maureen Smith, Nakia Lee-Foon, Amanda Doherty-Kirby, Rona Fleming, Don Grant, Annie-Danielle Grenier, John Grogan, Roger Farley, Margaret King, Chris Johnston, Virgil Luca, Lisa Ridgway, Donna Rubenstein, Candace Skrapek, Kerry Kuluski
{"title":"Co-creating an everyday language illustration of learning health systems alongside patient, caregiver, and community partners","authors":"Shelley Vanderhout, Maureen Smith, Nakia Lee-Foon, Amanda Doherty-Kirby, Rona Fleming, Don Grant, Annie-Danielle Grenier, John Grogan, Roger Farley, Margaret King, Chris Johnston, Virgil Luca, Lisa Ridgway, Donna Rubenstein, Candace Skrapek, Kerry Kuluski","doi":"10.1002/lrh2.70033","DOIUrl":"https://doi.org/10.1002/lrh2.70033","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>Patients, caregivers, and community partners (PCC) can have a variety of roles in learning health systems (LHS), such as contributing their data from healthcare encounters to embedded, continuous engagement where they identify health system priorities, guide operational, research, and quality improvement decisions, and facilitate knowledge sharing and implementation. Despite many LHS models placing emphasis on PCC, little has been done to help members of the public understand what a LHS is or initiate dialogue about how they can learn more and become engaged. We brought together a national network of PCC to co-create an everyday language, arts-based resource for the public to learn what a LHS is and how it relates to patient care journeys.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Thirteen PCC with LHS experience from across Canada attended two 2-h virtual workshops to generate ideas on how to better define LHS using everyday language, determine accessible ways to share this information, and co-design a comic strip that can be widely shared across diverse settings and communities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>We co-created a six-panel comic strip that depicts a relatable patient experience of waiting in an emergency department. The comic shows that in a LHS, patients are invited to contribute their perspectives about improving healthcare and support implementing and testing new ideas in clinical settings. Creating this comic was considered important for various reasons: to promote a common language around LHS, to build trust between health systems and the public, and to widen the community of PCC who are engaged in LHS activities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>This comic is intended to build capacity for LHS culture, where the public can understand how continuous learning and improvement fit within health care, and learn about opportunities for engagement in LHS.</p>\u0000 </section>\u0000 </div>","PeriodicalId":43916,"journal":{"name":"Learning Health Systems","volume":"9 4","pages":""},"PeriodicalIF":2.6,"publicationDate":"2025-09-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/lrh2.70033","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145375117","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Achieving an Intelligent HealthScience System: Aligning science, health, business, policy and technology for patients and society","authors":"SYNERGY Forum","doi":"10.1002/lrh2.70020","DOIUrl":"https://doi.org/10.1002/lrh2.70020","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>All societies benefit from a healthy population, and access to affordable, quality, evidence-based medical care can improve health, productivity, and prosperity for all. Two decades ago, experts and stakeholders met at the Institute of Medicine and called for a “new health system for the 21st century.” More recently, efforts have been made to achieve a Learning Health System (LHS). Still, reform efforts in the United States have only marginally succeeded in improving the situation despite innovation, technology, enormous economic resources, and one of the strongest medical research endeavors in the world.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Objectives</h3>\u0000 \u0000 <p>To bring together diverse stakeholders in healthcare, science, technology, business, government and patient advocacy, to envision what lies beyond the so-called Learning Health System approach.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>In December 2022, the SYNERGY Forum was hosted by the National Academy of Medicine, convened in Washington, DC. This envisioning exercise, the first in a planned series of such events, was proposed and organized by the global non-profit Alliance for Clinical Research Excellence and Safety (ACRES). The two-day exercise combined didactic lectures on systems thinking, focused working-groups, and interactive discussion, to create a vision for an integrated Intelligent HealthScience System (IHSS).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The participants proposed creation of a platform and an engine of People, Processes, Policy, and Technology to design and realize this vision through an effective hard and soft systems approach.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>This report captures what the multi-stakeholder collaboration recommends toward achieving such a System and a proposal for continuation of a SYNERGY Forum to further advance needed change and a design process.</p>\u0000 </section>\u0000 </div>","PeriodicalId":43916,"journal":{"name":"Learning Health Systems","volume":"9 4","pages":""},"PeriodicalIF":2.6,"publicationDate":"2025-09-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/lrh2.70020","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145375118","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Jennie G. David, Hannah McKillop, Meghan Fisher, Ashley M. Kroon Van Diest
{"title":"Increasing physician-perceived comfort about ostomies in pediatric inflammatory bowel disease: An interprofessional quality improvement project","authors":"Jennie G. David, Hannah McKillop, Meghan Fisher, Ashley M. Kroon Van Diest","doi":"10.1002/lrh2.70034","DOIUrl":"https://doi.org/10.1002/lrh2.70034","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>Pediatric inflammatory bowel disease (IBD) is a chronic disease with various treatments, including ostomy surgery, which is associated with stigma. Physicians' known discomfort in discussing ostomies can impact medical decision-making and the timing of clinical conversation. This quality improvement (QI) work developed and tested interprofessional tools to increase physician-perceived comfort in ostomy-related discussions at pediatric-IBD focused Learning Health Network site.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>A multidisciplinary team of GI/IBD psychologists, ostomy nurses, and child life specialists developed tools designed to increase physician-perceived comfort in ostomy discussions at an institution that participates in ImproveCareNow, a pediatric-IBD Learning Health Network. Two Plan Do Study Act (PDSA) cycles were completed. PDSA Cycle 1 involved IBD attending physicians (<i>n</i> = 4) for 8 weeks and PDSA Cycle 2 involved GI medical fellows (<i>n</i> = 7) for 12 weeks. Each PDSA cycle involved (1) baseline information, (2) resource education, and (3) tracking of physician-perceived comfort.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>For IBD attendings, average physician-perceived comfort talking about ostomies increased from 68.8% to 83.3%. For GI medical fellows, average physician-perceived comfort increased from 41.4% to 62%.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Ostomy surgery in pediatric IBD is a complex medical decision with notable stigma, demonstrating a pressing need to facilitate non-stigmatizing and psychosocially mindful clinical discussions. This QI project demonstrated how interprofessional education and resources increased physician-perceived comfort in ostomy discussions among IBD attendings and GI medical fellows at an ImproveCareNow site.</p>\u0000 </section>\u0000 </div>","PeriodicalId":43916,"journal":{"name":"Learning Health Systems","volume":"9 4","pages":""},"PeriodicalIF":2.6,"publicationDate":"2025-09-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/lrh2.70034","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145375065","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Andreas Gremyr, Michael Seid, Peter A. Margolis, Rohit Ramaswamy
{"title":"Learning about learning health systems: Strengthening theory through continuous evaluation and improvement","authors":"Andreas Gremyr, Michael Seid, Peter A. Margolis, Rohit Ramaswamy","doi":"10.1002/lrh2.70038","DOIUrl":"https://doi.org/10.1002/lrh2.70038","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>Learning Health Systems (LHSs) offer potential for transforming healthcare through continuous learning and improvement. However, the current literature lacks a robust connection between theory and practice, limiting knowledge transferability across diverse healthcare environments. This article proposes a novel framework for integrating theorizing and continuous evaluation into LHSs, illustrated through the case of the Bipolar Action Network (The Network).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>We use a process of theorizing to structure how mid-range theory, program theory and LHS design, development and evaluation can support improved practices and theories. We use the Conceptual Framework for Value-Creating Learning Health Systems as our initial mid-range theory, and the Bipolar Action Network serves as an illustrative case.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The framework emphasizes continuous multi-level LHS theory refinement based on real-world data, ensuring that both the system and its theoretical underpinnings evolve in response to new insights and challenges by connecting four steps: (1) Selecting an initial mid-range theory, (2) Creating a program theory for a specific LHS, (3) Evaluating LHS performance using operational data, and (4) Using evaluation findings to refine both the LHS program and mid-range theory.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>This article contributes to the field by offering a practical methodology for bridging the gap between LHS theory and practice. By promoting ongoing theorizing and evaluation, our framework aims to both enhance the effectiveness and adaptability of LHSs, as well as inform theory development. Challenges remain, including resource intensity for data infrastructure and potential limitations in data quality or accessibility, which must be addressed to realize the full potential of LHSs as adaptive, theory-driven systems.</p>\u0000 </section>\u0000 </div>","PeriodicalId":43916,"journal":{"name":"Learning Health Systems","volume":"9 4","pages":""},"PeriodicalIF":2.6,"publicationDate":"2025-09-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/lrh2.70038","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145375061","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Autumn R. Boyer, Charles P. Friedman, Cynthia H. Chuang, Megan E. Hamm, April Wyncott, James Gregory Merritt, Michael J. Becich, Soledad A. Fernandez, Daniel E. Ford, Henry Lester Kirchner, Anuradha Paranjape, David A. Williams, Kathleen M. McTigue
{"title":"The PaTH from discovery to implementation: Using a PCORnet® Clinical Research Network's own research to prioritize topics for collaborative health improvement activities","authors":"Autumn R. Boyer, Charles P. Friedman, Cynthia H. Chuang, Megan E. Hamm, April Wyncott, James Gregory Merritt, Michael J. Becich, Soledad A. Fernandez, Daniel E. Ford, Henry Lester Kirchner, Anuradha Paranjape, David A. Williams, Kathleen M. McTigue","doi":"10.1002/lrh2.70037","DOIUrl":"https://doi.org/10.1002/lrh2.70037","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>Applying research findings to health care practice has typically been a prolonged process, resulting in frustration to patients, providers, and other health system constituents. The PaTH Clinical Research Network developed the Discovery to Implementation (D2I) Initiative, rooted in Learning Health Systems principles, to engage constituents across seven academic sites/affiliated health systems in a process of identifying and prioritizing topics for future health improvement activities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Aims</h3>\u0000 \u0000 <p>To develop a consensus process to prioritize topics derived from the network's own research for future implementation efforts conducted by network-based Learning Communities. To apply this process to identify priority topics based on the network's recently published research.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>We developed a multi-institutional process for engaging a broad variety of perspectives to systematically review and evaluate PaTH-affiliated, patient-focused health research published between 2020 and 2022. Each site invited local constituents including patients, caregivers, clinicians, researchers, funders, health plan representatives, and health system leaders to help prioritize research topics and identify potential Learning Community areas of focus. D2I activities included brief surveys, review of data from the PCORnet® Common Data Model, and a multi-step deliberative process during two virtual events.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The D2I Initiative included the participation of nearly 90 constituents in its iterative process to prioritize research topics. From 21 publications of patient-focused PaTH-affiliated research, three topics emerged as the highest priority for potential quality improvement work: back pain, hypertension, and frailty. Furthermore, the D2I Initiative mobilized interest in three potential Learning Communities to work toward implementing health care innovations.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The D2I format is an innovative, engaging, and scalable model for involving constituents throughout our health systems to prioritize topics for future improvement activities. The process aims, ultimately, to reduce the time from research discovery to health systems improvements while maintaining a focus on the needs and priorities of those involved at multiple system levels.</p>\u0000 </section>\u0000 </","PeriodicalId":43916,"journal":{"name":"Learning Health Systems","volume":"9 4","pages":""},"PeriodicalIF":2.6,"publicationDate":"2025-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/lrh2.70037","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145375107","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Rob G. Stirling, Susannah Ahern, Jeremy Millar, Sue Evans, Paul Dawkins, John Zalcberg
{"title":"Clinical quality registries: Establishing the socio-technical infrastructure for learning health systems","authors":"Rob G. Stirling, Susannah Ahern, Jeremy Millar, Sue Evans, Paul Dawkins, John Zalcberg","doi":"10.1002/lrh2.70036","DOIUrl":"https://doi.org/10.1002/lrh2.70036","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Clinical quality registries (CQR) systematically monitor and provide feedback on the appropriateness and effectiveness of health care within specific clinical domains, collecting data about medical care processes and outcomes, and providing benchmarked performance reports to health care providers for the purpose of driving improvements in safety and quality.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Aims</h3>\u0000 \u0000 <p>The successful development of a learning infrastructure requires the alignment of people, technologies, policies, and processes, brought together by shared needs and a culture of continuous quality improvement. The creation and description of such infrastructure is likely to successfully support the delivery of services critical to continuous quality improvement initiatives.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Materials and Methods</h3>\u0000 \u0000 <p>We aimed to describe the construction and impacts of healthcare improvement infrastructure within CQRs.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Socio-technical infrastructure comprises participants that contribute to the design, evaluation, reporting and dissemination of quality improvement activities: employing effective and timely data acquisition, describing healthcare processes and outcomes; supported by directed policy process and supportive organisations. Review of CQR function identifies positive impacts on healthcare utilisation, improved clinical outcomes and significant improvement in survival supported by cost effective investment.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Discussion</h3>\u0000 \u0000 <p>Quality improvement frameworks and strategies have been developed to drive CQRs towards international best practice in learning health system structure for data collection and reporting; delivering efficiency and interoperability in data collection and exchange; promoting standardised approaches to CQR design.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Clinical quality registries have demonstrated significant national impacts in quality improvement in high burden disease domains. These registries rely on the construction and resourcing of socio-technical infrastructures that support quality improvement.</p>\u0000 </section>\u0000 </div>","PeriodicalId":43916,"journal":{"name":"Learning Health Systems","volume":"9 4","pages":""},"PeriodicalIF":2.6,"publicationDate":"2025-08-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/lrh2.70036","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145375025","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}