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1.
BMC Med ; 22(1): 131, 2024 Mar 22.
Artigo em Inglês | MEDLINE | ID: mdl-38519952

RESUMO

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.


Assuntos
COVID-19 , Sistema de Aprendizagem em Saúde , Estados Unidos , Humanos , Pandemias , Mudança Climática , COVID-19/epidemiologia , Assistência ao Paciente
2.
Milbank Q ; 102(1): 233-269, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38090879

RESUMO

Policy Points Patients' creative ideas may inform learning and innovation that improve patient-centered care. Routinely collected patient experience surveys provide an opportunity to invite patients to share their creative ideas for improvement. We develop and assess a methodological strategy that validates question wording designed to elicit creative ideas from patients. Health care organizations should consider how to report and use these data in health care delivery and quality improvement, and policymakers should consider promoting the use of narrative feedback to better understand and respond to patients' experiences. CONTEXT: Learning health systems (LHSs) have been promoted for a decade to achieve high-quality, patient-centered health care. Innovation driven by knowledge generated through day-to-day health care delivery, including patient insights, is critical to LHSs. However, the pace of translating patient insights into innovation is slow and effectiveness inadequate. This study aims to evaluate a method for systematically eliciting patients' creative ideas, examine the value of such ideas as a source of insight, and examine patients' creative ideas regarding how their experiences could be improved within the context of their own health systems. METHODS: The first stage of the study developed a survey and tested strategies for elicitation of patients' creative ideas with 600 patients from New York State. The second stage deployed the survey with the most generative open-ended question sequence within a health care system and involved analysis of 1,892 patients' responses, including 2,948 creative ideas. FINDINGS: Actionable, creative feedback was fostered by incorporating a request for transformative feedback into a sequence of narrative elicitation questions. Patients generate more actionable and creative ideas when explicitly invited to share such ideas, especially patients with negative health care experiences, those from minority racial/ethnic backgrounds, and those with chronic illness. The most frequently elicited creative ideas focused on solving challenges, proposing interventions, amplifying exceptional practices, and conveying hopes for the future. CONCLUSIONS: A valid and reliable method for eliciting creative ideas from patients can be deployed as part of routine patient experience surveys that include closed-ended survey items and open-ended narrative items in which patients share their experiences in their own words. The elicited creative ideas are promising for patient engagement and innovation efforts. This study highlights the benefits of engaging patients for quality improvement, offers a rigorously tested method for cultivating innovation using patient-generated knowledge, and outlines how creative ideas can enable organizational learning and innovation.


Assuntos
Cuidados Paliativos , Assistência Centrada no Paciente , Humanos , Assistência Centrada no Paciente/métodos , Pacientes , Participação do Paciente , Inquéritos e Questionários
3.
J Surg Res ; 295: 783-790, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38157730

RESUMO

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.


Assuntos
Hérnia Inguinal , Hérnia Umbilical , Lacerações , Laparoscopia , Sistema de Aprendizagem em Saúde , Adesivos Teciduais , Humanos , Criança , Adesivos Teciduais/uso terapêutico , Lacerações/epidemiologia , Lacerações/cirurgia , Hérnia Inguinal/cirurgia , Estudos Transversais , Hérnia Umbilical/cirurgia , Suturas , Resultado do Tratamento , Laparoscopia/efeitos adversos , Laparoscopia/métodos , Herniorrafia/efeitos adversos , Herniorrafia/métodos
4.
Artigo em Inglês | MEDLINE | ID: mdl-39218243

RESUMO

OBJECTIVE: To identify risk factors related to falls within the scope of speech-language pathology (SLP) using assessments from the Inpatient Rehabilitation Facility-Patient Assessment Instrument over a 4-month period in 4 inpatient rehabilitation facilities (IRFs). DESIGN: Observational retrospective cohort study. SETTING: Four IRFs as part of a larger learning health system. PARTICIPANTS: Adults aged ≥18 years admitted to the IRFs from October 1, 2022 to February 28, 2023 were included. INTERVENTION: N/A. MAIN OUTCOME MEASURES: Occurrence of falls. RESULTS: Analyses of 631 patient records revealed that the odds of falling were almost 3 times greater in people with limited English proficiency than in English speakers (odds ratio [OR], 2.92; 95% confidence interval [CI], 1.09-6.85). People with limited English proficiency who reported poorer health literacy had 4 times higher odds of falling (OR, 3.90; 95% CI, 1.13-13.44) than English speakers who reported adequate health literacy. People with limited English proficiency who reported adequate health literacy had the same risk of falling as English speakers (OR, 0.98; 95% CI, 0.16-6.12), suggesting the protective role of health literacy for people with limited English proficiency. CONCLUSIONS: Language barriers have a significant effect on falls among patients in IRFs. SLPs improving health literacy and providing language support may play a crucial role in mitigating fall risk, thereby enhancing patient safety and outcomes.

5.
BMC Health Serv Res ; 24(1): 829, 2024 Jul 22.
Artigo em Inglês | MEDLINE | ID: mdl-39039551

RESUMO

BACKGROUND: An essential component of future-proofing health systems against future pandemics and climate change is strengthening the front lines of care: principally, emergency departments and primary care settings. To achieve this, these settings can adopt learning health system (LHS) principles, integrating data, evidence, and experience to continuously improve care delivery. This rapid review aimed to understand the ways in which LHS principles have been applied to primary care and emergency departments, the extent to which LHS approaches have been adopted in these key settings, and the factors that affect their adoption. METHODS: Three academic databases (Embase, Scopus, and PubMed) were searched for full text articles reporting on LHSs in primary care and/or emergency departments published in the last five years. Articles were included if they had a primary focus on LHSs in primary care settings (general practice, allied health, multidisciplinary primary care, and community-based care) and/or emergency care settings. Data from included articles were catalogued and synthesised according to the modified Institute of Medicine's five-component framework for LHSs (science and informatics, patient-clinician partnerships, incentives, continuous learning culture, and structure and governance). RESULTS: Thirty-seven articles were included, 32 of which reported LHSs in primary care settings and seven of which reported LHSs in emergency departments. Science and informatics was the most commonly reported LHS component, followed closely by continuous learning culture and structure and governance. Most articles (n = 30) reported on LHSs that had been adopted, and many of the included articles (n = 17) were descriptive reports of LHS approaches. CONCLUSIONS: Developing LHSs at the front lines of care is essential for future-proofing against current and new threats to health system sustainability, such as pandemic- and climate change-induced events. Limited research has examined the application of LHS concepts to emergency care settings. Implementation science should be utilised to better understand the factors influencing adoption of LHS approaches on the front lines of care, so that all five LHS components can be progressed in these settings.


Assuntos
Mudança Climática , Sistema de Aprendizagem em Saúde , Pandemias , Atenção Primária à Saúde , Humanos , Atenção Primária à Saúde/organização & administração , Sistema de Aprendizagem em Saúde/organização & administração , Serviço Hospitalar de Emergência/organização & administração , COVID-19/epidemiologia
6.
J Med Internet Res ; 26: e55472, 2024 Oct 07.
Artigo em Inglês | MEDLINE | ID: mdl-39374069

RESUMO

With the widespread implementation of electronic health records (EHRs), there has been significant progress in developing learning health systems (LHSs) aimed at improving health and health care delivery through rapid and continuous knowledge generation and translation. To support LHSs in achieving these goals, implementation science (IS) and its frameworks are increasingly being leveraged to ensure that LHSs are feasible, rapid, iterative, reliable, reproducible, equitable, and sustainable. However, 6 key challenges limit the application of IS to EHR-driven LHSs: barriers to team science, limited IS experience, data and technology limitations, time and resource constraints, the appropriateness of certain IS approaches, and equity considerations. Using 3 case studies from diverse health settings and 1 IS framework, we illustrate these challenges faced by LHSs and offer solutions to overcome the bottlenecks in applying IS and utilizing EHRs, which often stymie LHS progress. We discuss the lessons learned and provide recommendations for future research and practice, including the need for more guidance on the practical application of IS methods and a renewed emphasis on generating and accessing inclusive data.


Assuntos
Registros Eletrônicos de Saúde , Ciência da Implementação , Sistema de Aprendizagem em Saúde , Sistema de Aprendizagem em Saúde/métodos , Humanos
7.
Health Res Policy Syst ; 22(1): 95, 2024 Aug 06.
Artigo em Inglês | MEDLINE | ID: mdl-39107779

RESUMO

INTRODUCTION: Despite increased interest in learning health systems (LHS), a paucity of guidance and tools for evaluating LHS implementation exists. To address this, we aim to undertake a scoping review on existing tools and evaluation of exemplars of LHS implementation. METHODS: We conducted a scoping review of peer-reviewed studies within Scopus, EMBASE, MEDLINE, and MEDLINE in-process that described (1) the evaluation of the implementation of an operating LHS or (2) the development of a framework or tool to facilitate this evaluation. Anima, basic research, abstracts, non-English language articles, and publications before 2018 were excluded. All study designs were considered. FINDINGS: From 1300 studies initially identified, 4 were eligible, revealing three tools with nine implementation evaluation examples. The identified tools shared constructs which were evaluated, including: Stakeholders, Data, Research Evidence, Implementation, and Sociotechnical Infrastructure. However, there was divergence in evaluation methodology. Tools ranged from a five-point numerical rating system for process maturity with a radar chart called the Network Maturity Grid (NMG); the Kaiser Permanente Washington (KPWA) LHS Logic Model, which provides a broad list of constructs and sample measures relevant to LHS operations; and finally LADDERS, a simple tool or form-based template designed for consistent evaluation over time. The NMG tool was the most mature in terms of adaptation and adoption. Notably, two (NMG and the KPWA LHS Logic Model) out of three tools conceptualized the LHS as a suite of processes and devised tools were processes that linked these constructs. IMPLICATIONS FOR TOOLKIT DEVELOPMENT: The evaluation of LHS implementation remains an under explored area of investigation, as this scoping review found only three tools for LHS implementation evaluation. Our findings indicate a need for further empirical research in this area and suggest early consensus in constructs that need to be considered during evaluation.


Assuntos
Sistema de Aprendizagem em Saúde , Humanos , Avaliação de Programas e Projetos de Saúde , Atenção à Saúde
8.
Health Res Policy Syst ; 22(1): 4, 2024 Jan 04.
Artigo em Inglês | MEDLINE | ID: mdl-38178086

RESUMO

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.


Assuntos
Medicina Baseada em Evidências , Sistema de Aprendizagem em Saúde , Humanos , Ecossistema
9.
Health Res Policy Syst ; 22(1): 87, 2024 Jul 17.
Artigo em Inglês | MEDLINE | ID: mdl-39020412

RESUMO

Measuring and optimizing a health system is challenging when patient care is split between many independent organizations. For example, patients receive care from their primary care provider, outpatient specialist clinics, hospitals, private providers and, in some instances, family members. These silos are maintained through different funding sources (or lack of funding) which incentivize siloed service delivery. A shift towards prioritizing patient outcomes and keeping the patient at the centre of care is emerging. However, competing philosophies on patient needs, how health is defined and how health is produced and funded is creating and engraining silos in the delivery of health services. Healthcare and health outcomes are produced through a series of activities conducted by diverse teams of health professionals working in concert. Health professionals are continually learning from each patient interaction; however, silos are barriers to information exchange, collaborative evidence generation and health system improvement. This paper presents a systems view of healthcare and provides a systems lens to approach current challenges in health systems. The first part of the paper provides a background on the current state and challenges to healthcare in Canada. The second part presents potential reasons for continued health system underperformance. The paper concludes with a system perspective for addressing these challenges.


Assuntos
Atenção à Saúde , Humanos , Canadá , Qualidade da Assistência à Saúde , Pessoal de Saúde , Atenção Primária à Saúde/organização & administração
10.
Int J Health Plann Manage ; 39(5): 1277-1297, 2024 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-38527109

RESUMO

INTRODUCTION: Health systems are constantly evolving in response to existing and emerging health challenges and are increasingly adopting the Quintuple Aim to guide transformation and improvement efforts. Addressing health challenges and achieving the Quintuple Aim (enhancing patient experience, improving healthcare provider experience, promoting population health, optimising the value of healthcare services, and advancing health equity) may be enhanced with the use of a Learning Health Systems approach that fosters the real-time use of data and evidence to inform improvement efforts and harnesses embedded researchers to co-produce timely, relevant evidence to address priorities. Training programs have emerged to build embedded research capacity within health system organisations and have focused predominantly on the postdoctoral career stage, with little attention paid to the early career researcher (ECR) stage. The objective of this study was to understand ECR training and mentorship needs in the embedded research context to inform the creation new or adaptation of existing programs to build embedded ECR capacity. METHODS: This study used a qualitative approach to garner insight from embedded and applied scholars and health systems leaders in Canada from various professional backgrounds and at various career stages using a combination of focus group discussions, key informant interviews, and an online survey. Thematic content analysis was used to examine the responses of study participants within the interview themes. RESULTS: Twenty-six (26) participants were included in the study. Results were organised according to four key themes: (1) key competencies and skills needed by embedded ECRs; (2) additional training and capacity development needs; (3) training delivery approaches; and (4) enablers and challenges faced by embedded ECRs. Results highlight the importance of supporting ECRs to develop their leadership and organisational management capabilities; their knowledge of and ability to use research approaches that are well-suited to real-world, complex, evolving environments; and their opportunities to learn with and from each other and mentors. Results underscore the perceived importance of context, including being embedded in a supportive environment that values research and evidence and of academic incentives that recognise and value real-world research impact. The challenges of responding to shifting organisational and system priorities were identified. Additional insights from health systems leaders were also highlighted. CONCLUSION: This study identified the multifaceted needs of embedded ECRs and the challenges they face within healthcare systems. Designing new programs or tailoring existing ones to address these needs would build their capacity, foster career progression, and ensure their impact as leaders of evidence-informed health system improvement which is crucial for achieving the Quintuple Aim.


Assuntos
Grupos Focais , Mentores , Pesquisadores , Humanos , Pesquisadores/educação , Canadá , Feminino , Masculino , Pesquisa Qualitativa , Desenvolvimento de Pessoal , Entrevistas como Assunto , Adulto , Pessoa de Meia-Idade
11.
J Cancer Educ ; 39(1): 78-85, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-37919624

RESUMO

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.


Assuntos
Neoplasias Colorretais , Sistema de Aprendizagem em Saúde , Humanos , Detecção Precoce de Câncer , Neoplasias Colorretais/diagnóstico , Neoplasias Colorretais/prevenção & controle , Colonoscopia , Sangue Oculto , Programas de Rastreamento
12.
J Biomed Inform ; 137: 104273, 2023 01.
Artigo em Inglês | MEDLINE | ID: mdl-36535604

RESUMO

Whilst the Randomised Controlled Trial remains the gold standard for deriving robust causal estimates of treatment efficacy, too often a traditional design proves prohibitively expensive or cumbersome when it comes to assessing questions regarding the comparative effectiveness of routinely used treatments. As a result, patients experience variation in practice as clinicians lack the evidence needed to personalise treatments effectively. This variation may be classified as unwarranted, where existing evidence is ignored, or legitimate where in the absence of evidence, clinicians rely on experience, expert opinion, and inferred principles from basic science to make decisions. We argue that within the right ethical and technological framework, legitimate variation can be transformed into a mechanism for evidence generation and learning. Learning Health Systems which harness existing variation in practice, represent a novel approach for generating evidence from everyday clinical practice. The development of these systems has gained traction due to the increased availability of modern Electronic Health Record Systems. However, despite their promise, overcoming hurdles to successfully integrating clinical trials within Learning Health Systems has proven challenging. This article describes the origins of integrated clinical trials and explores two main barriers to their further implementation - how best to obtain informed consent from patients to participate in routine comparative effectiveness research, and how to automate and integrate randomisation into a clinical workflow. Having described these barriers, we present a potential solution in the form of a research pipeline using a novel form of flexible point-of-care randomisation to allow clinicians and patients to participate in studies where there is clinical equipoise.


Assuntos
Registros Eletrônicos de Saúde , Sistemas Automatizados de Assistência Junto ao Leito , Humanos , Projetos de Pesquisa , Aprendizagem , Consentimento Livre e Esclarecido
13.
Pediatr Nephrol ; 38(1): 35-46, 2023 01.
Artigo em Inglês | MEDLINE | ID: mdl-35445971

RESUMO

Learning health systems (LHS) align science, informatics, incentives, and culture for continuous improvement and innovation. In this organizational system, best practices are seamlessly embedded in the delivery process, and new knowledge is captured as an integral byproduct of the care delivery experience aimed to transform clinical practice and improve patient outcomes. The objective of this review is to describe how building better health systems that integrate clinical care, improvement, and research as part of an LHS can improve care within pediatric nephrology. This review will provide real-world examples of how this system can be established in a single center and across multiple centers as learning health networks.


Assuntos
Sistema de Aprendizagem em Saúde , Nefrologia , Criança , Humanos , Atenção à Saúde
14.
BMC Public Health ; 23(1): 1579, 2023 08 18.
Artigo em Inglês | MEDLINE | ID: mdl-37596539

RESUMO

BACKGROUND: Universal recommendation for antiretroviral drugs and their effectiveness has put forward the challenge of assuring a chronic and continued care approach to PLHIV (People Living with HIV), pressured by aging and multimorbidity. Integrated approaches are emerging which are more responsive to that reality. Studying those approaches, and their relation to the what of delivery arrangements and the how of implementation processes, may support future strategies to attain more effective organizational responses. METHODS: We reviewed empirical studies on either HIV, multimorbidity, or both. The studies were published between 2011 and 2020, describing integrated approaches, their design, implementation, and evaluation strategy. Quantitative, qualitative, or mixed methods were included. Electronic databases reviewed cover PubMed, SCOPUS, and Web of Science. A narrative analysis was conducted on each study, and data extraction was accomplished according to the Effective Practice and Organisation of Care taxonomy of health systems interventions. RESULTS: A total of 30 studies, reporting 22 different interventions, were analysed. In general, interventions were grounded and guided by models and frameworks, and focused on specific subpopulations, or priority groups at increased risk of poorer outcomes. Interventions mixed multiple integrated components. Delivery arrangements targeted more frequently clinical integration (n = 13), and care in proximity, community or online-telephone based (n = 15). Interventions reported investments in the role of users, through self-management support (n = 16), and in coordination, through multidisciplinary teams (n = 9) and continuity of care (n = 8). Implementation strategies targeted educational and training activities (n = 12), and less often, mechanisms of iterative improvement (n = 3). At the level of organizational design and governance, interventions mobilised users and communities through representation, at boards and committees, and through consultancy, along different phases of the design process (n = 11). CONCLUSION: The data advance important lessons and considerations to take steps forward from disease-focused care to integrated care at two critical levels: design and implementation. Multidisciplinary work, continuity of care, and meaningful engagement of users seem crucial to attain care that is comprehensive and more proximal, within or cross organizations, or sectors. Promising practices are advanced at the level of design, implementation, and evaluation, that set integration as a continued process of improvement and value professionals and users' knowledge as assets along those phases. TRIAL REGISTRATION: PROSPERO number CRD42020194117.


Assuntos
Prestação Integrada de Cuidados de Saúde , Infecções por HIV , Humanos , Multimorbidade , Envelhecimento , Antirretrovirais , Infecções por HIV/tratamento farmacológico
15.
J Med Internet Res ; 25: e45002, 2023 04 13.
Artigo em Inglês | MEDLINE | ID: mdl-37052967

RESUMO

BACKGROUND: Secondary use of health data has reached unequaled potential to improve health systems governance, knowledge, and clinical care. Transparency regarding this secondary use is frequently cited as necessary to address deficits in trust and conditional support and to increase patient awareness. OBJECTIVE: We aimed to review the current published literature to identify different stakeholders' perspectives and recommendations on what information patients and members of the public want to learn about the secondary use of health data for research purposes and how and in which situations. METHODS: Using PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) guidelines, we conducted a scoping review using Medline, CINAHL, PsycINFO, Scopus, Cochrane Library, and PubMed databases to locate a broad range of studies published in English or French until November 2022. We included articles reporting a stakeholder's perspective or recommendations of what information patients and members of the public want to learn about the secondary use of health data for research purposes and how or in which situations. Data were collected and analyzed with an iterative thematic approach using NVivo. RESULTS: Overall, 178 articles were included in this scoping review. The type of information can be divided into generic and specific content. Generic content includes information on governance and regulatory frameworks, technical aspects, and scientific aims. Specific content includes updates on the use of one's data, return of results from individual tests, information on global results, information on data sharing, and how to access one's data. Recommendations on how to communicate the information focused on frequency, use of various supports, formats, and wording. Methods for communication generally favored broad approaches such as nationwide publicity campaigns, mainstream and social media for generic content, and mixed approaches for specific content including websites, patient portals, and face-to-face encounters. Content should be tailored to the individual as much as possible with regard to length, avoidance of technical terms, cultural competence, and level of detail. Finally, the review outlined 4 major situations where communication was deemed necessary: before a new use of data, when new test results became available, when global research results were released, and in the advent of a breach in confidentiality. CONCLUSIONS: This review highlights how different types of information and approaches to communication efforts may serve as the basis for achieving greater transparency. Governing bodies could use the results: to elaborate or evaluate strategies to educate on the potential benefits; to provide some knowledge and control over data use as a form of reciprocity; and as a condition to engage citizens and build and maintain trust. Future work is needed to assess which strategies achieve the greatest outreach while striking a balance between meeting information needs and use of resources.


Assuntos
Registros de Saúde Pessoal , Participação do Paciente , Humanos , Comunicação , Previsões , Aprendizagem , Pacientes , Confiança
16.
J Gen Intern Med ; 37(15): 3965-3972, 2022 11.
Artigo em Inglês | MEDLINE | ID: mdl-35650467

RESUMO

OBJECTIVE: To identify challenges and pragmatic strategies for improving diagnostic safety at an organizational level using concepts from learning health systems METHODS: We interviewed 32 safety leaders across the USA on how their organizations approach diagnostic safety. Participants were recruited through email and represented geographically diverse academic and non-academic settings. The interview included questions on culture of reporting and learning from diagnostic errors; data gathering and analysis activities; diagnostic training and educational activities; and engagement of clinical leadership, staff, patients, and families in diagnostic safety activities. We conducted an inductive content analysis of interview transcripts and two reviewers coded all data. RESULTS: Of 32 participants, 12 reported having a specific program to address diagnostic errors. Multiple barriers to implement diagnostic safety activities emerged: serious concerns about psychological safety associated with diagnostic error; lack of infrastructure for measurement, monitoring, and improvement activities related to diagnosis; lack of leadership investment, which was often diverted to competing priorities related to publicly reported measures or other incentives; and lack of dedicated teams to work on diagnostic safety. Participants provided several strategies to overcome barriers including adapting trigger tools to identify safety events, engaging patients in diagnostic safety, and appointing dedicated diagnostic safety champions. CONCLUSIONS: Several foundational building blocks related to learning health systems could inform organizational efforts to reduce diagnostic error. Promoting an organizational culture specific to diagnostic safety, using science and informatics to improve measurement and analysis, leadership incentives to build institutional capacity to address diagnostic errors, and patient engagement in diagnostic safety activities can enable progress.


Assuntos
Sistema de Aprendizagem em Saúde , Humanos , Cultura Organizacional , Liderança , Erros de Diagnóstico , Participação do Paciente , Segurança do Paciente
17.
BMC Health Serv Res ; 22(1): 1599, 2022 Dec 30.
Artigo em Inglês | MEDLINE | ID: mdl-36585696

RESUMO

BACKGROUND: Individuals with psychotic disorders experience widespread treatment failures and risk early death. Sweden's largest department specializing in psychotic disorders sought to improve patients' health by developing a point-of-care dashboard to support joint planning and co-production of care. The dashboard was tested for 18 months and included more than 400 patients at two outpatient clinics. METHODS: This study evaluates the dashboard by addressing two questions: 1) Can differences in health-related outcome measures be attributed to the use of the dashboard? 2) How did the case managers experience the accessibility, use, and usefulness of the dashboard for co-producing care with individuals with psychotic disorders? This mixed-method case study used both Patient-Reported Outcome Measures (PROM) and data from a focus group interview with case managers. Data collection and analysis were framed by the Clinical Adoption Meta Model (CAMM) phases: i) accessibility, ii) system use, iii) behavior, and iv) clinical outcomes. The PROM used was the 12-item World Health Organization Disability Assessment Schedule (WHODAS 2.0), which assesses functional impairment and disability. Patients at clinics using the dashboard were matched with patients at clinics not using the dashboard. PROM data were compared using non-parametric statistics due to skewness in distribution. The focus group included five case managers who had experience using the dashboard with patients. RESULTS: Compared to patients from clinics that did not use the dashboard, patients from clinics that did use the dashboard improved significantly overall (p = 0.045) and in the domain self-care (p = 0.041). Focus group participants reported that the dashboard supported data feedback-informed care and a proactive stance related to changes in patients' health. The dashboard helped users identify critical changes and enabled joint planning and evaluation. CONCLUSION: Dashboard use was related to better patient health (WHODAS scores) when compared with matched patients from clinics that did not use the dashboard. In addition, case managers had a positive experience using the dashboard. Dashboard use might have lowered the risk for missing critical changes in patients' health while increasing the ability to proactively address needs. Future studies should investigate how to enhance patient co-production through use of supportive technologies.


Assuntos
Sistemas Automatizados de Assistência Junto ao Leito , Transtornos Psicóticos , Humanos , Transtornos Psicóticos/terapia , Retroalimentação , Instituições de Assistência Ambulatorial , Atenção à Saúde
18.
Health Res Policy Syst ; 20(1): 65, 2022 Jun 16.
Artigo em Inglês | MEDLINE | ID: mdl-35710495

RESUMO

BACKGROUND: It is well documented that Canadian healthcare does not fully meet the health needs of First Nations, Inuit or Métis peoples. In 1996, the Royal Commission on Aboriginal Peoples concluded that Indigenous peoples' healthcare needs had to be met by strategies and systems that emerged from Indigenous worldviews and cultures. In 2015, the Truth and Reconciliation Commission also called on health organizations to learn from Indigenous "knowledges" and integrate Indigenous worldviews alongside biomedicine and other western ways of knowing. These calls have not yet been met. Meanwhile, the dynamic of organizational learning from knowledges and evidence within communities is poorly understood-particularly when learning is from communities whose ways of knowing differ from those of the organization. Through an exploration of organizational and health system learning, this study will explore how organizations learn from the Indigenous communities they serve and contribute to (re-)conceptualizing the learning organization and learning health system in a way that privileges Indigenous knowledges and ways of knowing. METHODS: This study will employ a two-eyed seeing literature review and embedded multiple case study. The review, based on Indigenous and western approaches to reviewing and synthesizing knowledges, will inform understanding of health system learning from different ways of knowing. The multiple case study will examine learning by three distinct government organizations in Northwest Territories, a jurisdiction in northern Canada, that have roles to support community health and wellness: TlįchÇ« Government, Gwich'in Tribal Council, and Government of Northwest Territories. Case study data will be collected via interviews, talking circles, and document analysis. A steering group, comprising TlįchÇ« and Gwich'in Elders and representatives from each of the three partner organizations, will guide all aspects of the project. DISCUSSION: Examining systems that create health disparities is an imperative for Canadian healthcare. In response, this study will help to identify and understand ways for organizations to learn from and respectfully apply knowledges and evidence held within Indigenous communities so that their health and wellness are supported. In this way, this study will help to guide health organizations in the listening and learning that is required to contribute to reconciliation in healthcare.


Assuntos
Serviços de Saúde do Indígena , Grupos Populacionais , Idoso , Canadá , Atenção à Saúde/métodos , Programas Governamentais , Humanos , Saúde Pública
19.
Curr Atheroscler Rep ; 23(5): 19, 2021 03 10.
Artigo em Inglês | MEDLINE | ID: mdl-33693992

RESUMO

PURPOSE OF REVIEW: The past few decades have seen significant technologic innovation for the treatment and diagnosis of cardiovascular diseases. The subsequent growing complexity of modern medicine, however, is causing fundamental challenges in our healthcare system primarily in the spheres of patient involvement, data generation, and timely clinical implementation. The Institute of Medicine advocated for a learning health system (LHS) in which knowledge generation and patient care are inherently symbiotic. The purpose of this paper is to review how the advances in technology and big data have been used to further patient care and data generation and what future steps will need to occur to develop a LHS in cardiovascular disease. RECENT FINDINGS: Patient-centered care has progressed from technologic advances yielding resources like decision aids. LHS can also incorporate patient preferences by increasing and standardizing patient-reported information collection. Additionally, data generation can be optimized using big data analytics by developing large interoperable datasets from multiple sources to allow for real-time data feedback. Developing a LHS will require innovative technologic solutions with a patient-centered lens to facilitate symbiosis in data generation and clinical practice.


Assuntos
Doenças Cardiovasculares , Sistema de Aprendizagem em Saúde , Big Data , Doenças Cardiovasculares/epidemiologia , Doenças Cardiovasculares/prevenção & controle , Atenção à Saúde , Humanos
20.
BMC Health Serv Res ; 21(1): 200, 2021 Mar 05.
Artigo em Inglês | MEDLINE | ID: mdl-33663508

RESUMO

BACKGROUND: The transition to electronic health records offers the potential for big data to drive the next frontier in healthcare improvement. Yet there are multiple barriers to harnessing the power of data. The Learning Health System (LHS) has emerged as a model to overcome these barriers, yet there remains limited evidence of impact on delivery or outcomes of healthcare. OBJECTIVE: To gather evidence on the effects of LHS data hubs or aligned models that use data to deliver healthcare improvement and impact. Any reported impact on the process, delivery or outcomes of healthcare was captured. METHODS: Systematic review from CINAHL, EMBASE, MEDLINE, Medline in-process and Web of Science PubMed databases, using learning health system, data hub, data-driven, ehealth, informatics, collaborations, partnerships, and translation terms. English-language, peer-reviewed literature published between January 2014 and Sept 2019 was captured, supplemented by a grey literature search. Eligibility criteria included studies of LHS data hubs that reported research translation leading to health impact. RESULTS: Overall, 1076 titles were identified, with 43 eligible studies, across 23 LHS environments. Most LHS environments were in the United States (n = 18) with others in Canada, UK, Sweden and Australia/NZ. Five (21.7%) produced medium-high level of evidence, which were peer-reviewed publications. CONCLUSIONS: LHS environments are producing impact across multiple continents and settings.


Assuntos
Sistema de Aprendizagem em Saúde , Austrália/epidemiologia , Canadá , Atenção à Saúde , Humanos , Suécia , Estados Unidos
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