Policy, system and service design influence on healthcare inequities for people with end-of-life chronic obstructive airways disease, their support people and health professionals.

BACKGROUND: People with end-of-life chronic obstructive pulmonary disease (COPD) experience debilitating physical limitations, with a high mortality rate. Our research has shown health system design and delivery leads to inequitable outcomes. Enabling people with end-of-life COPD, their support people, and health professionals to partner in setting the agenda for resource allocation may inform health service improvement. DESIGN: Qualitative methodology utilising focus groups including patients, family, friends, informal support people, health care workers and professionals. METHODS: The analysis, utilising critical theory and Actor-Network theory, positioned people with severe COPD, their support people and health professionals as experts in end-of-life care. Analyses triangulated these perspectives, and were reviewed by the research investigators and an expert reference group. RESULTS: Participants (n=74) in seven focus groups reported their experiences of inequity within the healthcare system. Equity was an overarching phenomenon identified by participants, with three specific themes being described: policy design, system design, and service design. CONCLUSION: Experiences of patients, their support people and health professionals as experts in end-of-life COPD care can inform health systems and health service design to address current inequities in funding and delivery of care for end-of-life COPD.

'People that suffer or have been through it know the answers': stakeholders' perspectives on improving healthcare systems for end-of-life care in chronic obstructive pulmonary disease.

BACKGROUND: Chronic obstructive pulmonary disease (COPD) is a progressive and disabling lung condition with a high mortality. Our research has shown that health care for end-of-life COPD is poorly integrated. The aim of this study was to involve people with end-of-life COPD, their support people and health professionals in the design of healthcare services to help improve the delivery of care for advanced COPD, including informing system-level quality improvement. DESIGN: We conducted a focus group study involving stakeholders of healthcare services: people with end-of life COPD, support people, bereaved support people, and community- and hospital-based health care professionals. METHODS: We conducted qualitative analysis using deductive structural coding, and then inductive descriptive and pattern coding. Analyses were triangulated by investigators. The research positioned people with end-of-life COPD, their support people and health professionals as experts in healthcare services. Critical theory and Actor-Network theory informed the analysis. RESULTS: Seven focus groups involving 74 participants reported their experiences of end-of-life care for COPD. Five themes related to healthcare systems responses to improving care quality were identified: governance, system integration, resource design and development, standardisation of processes, and communication. CONCLUSION: Stakeholders provided multiple healthcare system-level responses to end-of-life care in COPD that could inform healthcare service design and clinical quality improvement.

A resilient, robust transformation of healthcare systems to cope with COVID-19 through alternative resources.

The COVID-19 pandemic - as a massive disruption - has significantly increased the need for medical services putting an unprecedented strain on health systems. This study presents a robust location-allocation model under uncertainty to increase the resiliency of health systems by applying alternative resources, such as backup and field hospitals and student nurses. A multi-objective optimization model is developed to minimize the system's costs and maximize the satisfaction rate among medical staff and COVID-19 patients. A robust approach is provided to face the data uncertainty, and a new mathematical model is extended to linearize a nonlinear constraint. The ICU beds, ward beds, ventilators, and nurses are considered the four main capacity limitations of hospitals for admitting different types of COVID-19 patients. The sensitivity analysis is performed on a real-world case study to investigate the applicability of the proposed model. The results demonstrate the contribution of student nurses and backup and field hospitals in treating COVID-19 patients and provide more flexible decisions with lower risks in the system by managing the fluctuations in both the number of patients and available nurses. The results showed that a reduction in the number of available nurses incurs higher costs for the system and lower satisfaction among patients and nurses. Moreover, the backup and field hospitals and the medical staff elevated the system's resiliency. By allocating backup hospitals to COVID-19 patients, only 37% of severe patients were lost, and this rate fell to less than 5% after establishing field hospitals. Moreover, medical students and field hospitals curbed the costs and increased the satisfaction rate of nurses by 75%. Finally, the system was protected from failure by increasing the conservatism level. With a 2% growth in the price of robustness, the system saved 13%.

Leveraging multi-tier healthcare facility network simulations for capacity planning in a pandemic.

The COVID-19 pandemic has placed severe demands on healthcare facilities across the world, and in several countries, makeshift COVID-19 centres have been operationalised to handle patient overflow. In developing countries such as India, the public healthcare system (PHS) is organised as a hierarchical network with patient flows from lower-tier primary health centres (PHC) to mid-tier community health centres (CHC) and downstream to district hospitals (DH). In this study, we demonstrate how a network-based modelling and simulation approach utilising generic modelling principles can (a) quantify the extent to which the existing facilities in the PHS can effectively cope with the forecasted COVID-19 caseload; and (b) inform decisions on capacity at makeshift COVID-19 Care Centres (CCC) to handle patient overflows. We apply the approach to an empirical study of a local PHS comprising ten PHCs, three CHCs, one DH and one makeshift CCC. Our work demonstrates how the generic modelling approach finds extensive use in the development of simulations of multi-tier facility networks that may contain multiple instances of generic simulation models of facilities at each network tier. Further, our work demonstrates how multi-tier healthcare facility network simulations can be leveraged for capacity planning in health crises.

Changes in knowledge and use of clinical coordination mechanisms between care levels in healthcare networks of Colombia.

Clinical coordination mechanisms (CCMs) have become key tools in healthcare networks for improving coordination between primary care (PC) and secondary care (SC) and are particularly relevant in health systems with highly fragmented healthcare provision. However, their implementation has been little studied to date in Latin America and particularly in Colombia. This study analyses the level of knowledge and use of CCMs between care levels and their changes between 2015 and 2017 in two public healthcare networks in Bogotá, Colombia. Comparison of two cross-sectional studies based on surveys among PC and SC doctors working in their networks (174 doctors per network/year). The COORDENA questionnaire was used for measuring knowledge concerning CCMs and the frequency of use and difficulties involved in using referral/reply letters (R/RLs) and hospital discharge reports (HDRs). Descriptive bivariate analysis and Poisson regression models with robust variance were used for analysing differences between networks and years. The results for both networks and years revealed greater knowledge and use of information coordination mechanisms than those regarding clinical management coordination (though their knowledge increased in 2017). Although widely known and used, significant problems regarding infrequent and late receipt of RLs and HDRs in PC as well as the poor quality of their contents limits their effective use, which may affect the quality of care. Strategies are required to improve CCMs use.

Well-being in chronic pediatric inflammatory rheumatic diseases: the experience of a French healthcare network.

OBJECTIVE: Current management of patients with pediatric rheumatic diseases (PRD) should aim at achieving the best possible well-being. To identify sociodemographic/clinical characteristics, needed paramedical services and school accommodations associated with well-being in patients at inclusion in a French health network Réseau pour les Rhumatismes Inflammatoires Pédiatriques (RESRIP) that supports coordination of the patient's health pathway. To evaluate the evolution of well-being over time in this patients benefiting from such support. METHODS: Patients > 3 years old enrolled in RESRIP (2013-2020) were included. At enrollment, data were collected on sociodemographic/clinical characteristics, ongoing medications, and paramedical and educational actions to be implemented by RESRIP. Well-being during the last 6 months was reported with a standardized questionnaire at enrollment and every 6 months. A well-being score was calculated with scores ranging from 0 to 18, 18 corresponding to absolute well-being. Patients were followed up from inclusion until June 2020. RESULTS: In total, 406 patients were included and followed up for 36 months on average: 205 juvenile idiopathic arthritis, 68 connective tissue diseases, 81 auto-inflammatory diseases and 52 other diseases. The well-being score did not differ between the groups and improved significantly, by 0.04 score units, every 6 months (95% confidence interval [0.03; 0.06]). At inclusion, use of homeopathy, need for implementation of hypnosis or psychological support, occupational therapy or for adjustment of school tests were associated with worse well-being score. CONCLUSION: Well-being seems associated more with the impact of chronic illness than the type of PRD underlining the importance of a comprehensive patient care.

Stakeholders' Perspectives on the Quality of End-of-Life Health Care Services for Chronic Obstructive Airways Disease: A Focus Group Study.

Introduction: Delivery of end-of-life care for severe chronic obstructive pulmonary disease (COPD) has been hampered by an unpredictable disease trajectory and poor integration of health care and social services. Objective: To critically explore the perspectives, values, and experiences of stakeholders in COPD end-of-life healthcare services in a large district in Aotearoa New Zealand. Design: Focus groups analysed utilising critical theory and Actor-Network Theory. Methods: Stakeholders in end-of-life COPD healthcare services were purposively sampled from a large healthcare network in Canterbury, Aotearoa New Zealand to participate in seven focus groups (bereaved carers, community-based health professionals, non-Maori, non-Pacific patients, and support people (two groups), Maori patients, supporters and health professionals, Pacific patients, support people and health professionals, and hospital-based health professionals). Participants discussed end-of-life care services for people with COPD. Transcripts were coded utilising descriptive and structural coding to develop themes related to provision of quality care. Participants were positioned as experts. We considered how the themes arising supported and disrupted the healthcare network for end-of-life COPD. Results: Five themes related to quality of care for end-of-life COPD were identified: compassion, competence, community, commitment, and collaboration. The absence of any of these five themes required for quality care led to power imbalances within healthcare systems. Power inequities created disconnection among stakeholders which then disrupted commitment, community, and collaboration. A dysfunctional healthcare network impeded compassion between stakeholders and did not support their competence, leading to lower quality care. All five themes were identified as essential to delivery of high-quality end-of-life care in COPD. Conclusion: Stakeholders' perspectives of end-of-life care for COPD identified of core features of a health system network that enabled or impeded the actions of stakeholders and allocation of resources to provide quality care.

Integration of Chronic Care in a Fragmented Healthcare System Comment on "Integration or Fragmentation of Health Care? Examining Policies and Politics in a Belgian Case Study".

The authors of "Integration or Fragmentation of Health Care? Examining Policies and Politics in a Belgian Case Study" present a fresh perspective on the inertia of integrated care (IC) implementation. They conclude that the decisive power in Belgium is fragmented and undermines efforts towards IC. As researchers in integrated heart failure (HF) care and active primary healthcare professionals, we comment on the three policy initiatives evaluated by Martens et al from a bottom-up perspective. A Learning Healthcare Network (LHCN) was established September 2019 to overcome fragmentation, the lack of evaluation and capacity loss each time a pilot project ends. This commentary wishes to illustrate that a LHCN can be a powerful meso-level mechanism to engage in alignment work and to overcome macro-level barriers that are often difficult to change and not supportive of IC.

Organizational ethics in urgent transfers of severely disabled people to intensive care units - a qualitative study.

PURPOSE: Urgent transfers of severely impaired patients with chronic neurological disability (PwND) from a neurological physical and rehabilitation medicine (nPRM) to an intensive care unit (ICU) or an emergency room (ER) served as the basis for this study. We hypothesized that human and structural factors interfered with but were not directly related to the acute context. METHODS: We decided to use a qualitative methodology, based on in-depth interviews with 16 ICU/ER physicians. We used mixed bottom-up and top-down methods. We interpreted our data using a thematic approach based on the key principles of grounded theory, which were modified with consideration of the literature. RESULTS: Three main domains emerged. The impact of the clinical setting notably implied the patient's clinical typology between the acute event and the chronic background, but also bed availability. Key elements of the telephone negotiation were confidence and perceived usefulness of the transfer. Finally, the otherness of some categories of patients, transferred with more difficulty, involved those with cognitive impairment. CONCLUSIONS: The existence of healthcare pathways for many years has created an organizational culture between departments of nPRM and ICUs. But urgent transfers also imply organizational ethics, as a balance should be struck between utility and equity. IMPLICATIONS FOR REHABILITATIONStructural and human factors interfere in urgent transfers, involving the settings within health pathways, the key elements of negotiation to get confidence and a perceived utility of transfer, and certain categories of people, especially those with cognitive impairment.Transfers that imply negotiation between practitioners from physical and rehabilitation medicine and intensive care unit departments, lead to a need of organizational ethics, as a balance should be struck between the principles of utility and equity.The development of facilitating tools such as a commitment charter is of paramount importance as it can support ethical decision-making.

Dimensions of Proximity: An Actionable Framework to Better Understand Integrated Practices in Cancer Networks.

Introduction: This study empirically explores how dimensions of proximity that support integrated care emerge from deliberate actions within a cancer network in Quebec (Canada). Methods: We conduct a supplementary analysis of qualitative data from a primary multi-case study focused on collaborative governance and cancer care integration. Data from semi-structured interviews, documents and observation are analysed to find out how relationships take shape through actions that create different dimensions of proximity, and how these contribute to integrated practices. Results: Deliberate actions at different levels within the network create dimensions of proximity. The creation of committees and communities of practice at national and local level establish geographic proximity. Relational proximity among actors emerges to different degrees in these venues. Cognitive proximity is generated by consistent promotion of the national cancer plan and person-centred care. The priority of cancer care at policy level and prescription of common standards enhance organizational proximity. Synergy between dimensions of proximity appears essential to the emergence of integrated practices. Insufficient efforts to create technological and institutional proximity contribute to inconsistent clinical and professional integration. Conclusion: The concept of proximity appears a promising complement to existing models of integration, especially in complex contexts such as cancer networks. Highlights: Deliberate actions at different levels within the cancer network create a number of dimensions of proximityGeographic proximity, be it objective or subjective, facilitates relational, cognitive and institutional proximityA national cancer plan sustained by shared leadership enhances organizational proximity, facilitating integrated practicesActivation of different dimensions of proximity among network actors likely underpins and sustains functional, normative and organizational integrationInsufficient efforts to create technological and institutional proximity contribute to inconsistent clinical and professional integrationThe multiple dimensions of proximity appear a promising complement to existing models of integration, especially in complex contexts such as cancer networks.

A sustainable-resilience healthcare network for handling COVID-19 pandemic.

In this paper, a new production, allocation, location, inventory holding, distribution, and flow problems for a new sustainable-resilient health care network related to the COVID-19 pandemic under uncertainty is developed that also integrated sustainability aspects and resiliency concepts. Then, a multi-period, multi-product, multi-objective, and multi-echelon mixed-integer linear programming model for the current network is formulated and designed. Formulating a new MILP model to design a sustainable-resilience healthcare network during the COVID-19 pandemic and developing three hybrid meta-heuristic algorithms are among the most important contributions of this research. In order to estimate the values of the required demand for medicines, the simulation approach is employed. To cope with uncertain parameters, stochastic chance-constraint programming is proposed. This paper also proposed three meta-heuristic methods including Multi-Objective Teaching-learning-based optimization (TLBO), Particle Swarm Optimization (PSO), and Genetic Algorithm (GA) to find Pareto solutions. Since heuristic approaches are sensitive to input parameters, the Taguchi approach is suggested to control and tune the parameters. A comparison is performed by using eight assessment metrics to validate the quality of the obtained Pareto frontier by the heuristic methods on the experiment problems. To validate the current model, a set of sensitivity analysis on important parameters and a real case study in the United States are provided. Based on the empirical experimental results, computational time and eight assessment metrics proposed methodology seems to work well for the considered problems. The results show that by raising the transportation costs, the total cost and the environmental impacts of sustainability increased steadily and the trend of the social responsibility of staff rose gradually between - 20 and 0%, but, dropped suddenly from 0 to + 20%. Also in terms of the on-resiliency of the proposed network, the trends climbed slightly and steadily. Applications of this paper can be useful for hospitals, pharmacies, distributors, medicine manufacturers and the Ministry of Health. Supplementary Information: The online version contains supplementary material available at 10.1007/s10479-021-04238-2.

Financial conflicts of interest of OncoAlert: An informal oncology professional network.

IMPORTANCE: Social media platforms have allowed the formation of informal professional healthcare networks. Transparency in funding, membership requirements, financial conflicts of interest (FCOI), and messaging are necessary to ensure best practices for similar networks in the future. OBJECTIVE: To analyze the FCOIs of US-based physician members of the OncoAlert Network and appraise the content of their public Twitter account. DESIGN, SETTING, PARTICIPANTS: This cross-sectional study assessed the FCOIs among US-based physician members of the OncoAlert Network between 2015 and 2020. FCOI data were obtained through the Open Payments Database. Additionally, tweets were examined for content analysis. MAIN OUTCOMES AND MEASURES: The number of US-based physician members with FCOIs with the pharmaceutical industry; the amount of general, research, and associated research payments; and the perceived attitude of tweet content from the OncoAlert Network Twitter account. RESULTS: Of 34 US physician members of the OncoAlert Network, 31 (91.2%) received general payments from pharmaceutical companies according to the Open Payments Database. Between 2015 and 2020, US physician members of the OncoAlert Network received a median of $83,600 in general payments (interquartile range [IRQ], $7,200-$221,500). Fourteen members (41.1%) received more than $100,000 in general payments. Additionally, 480 (15.7 %) of 3064 tweets retrieved from the OncoAlert Twitter account mentioned a drug or clinical trial. Of these, 31.6 % (n = 152) had a positive disposition and 3.3 % (n = 16) were negative or critical. CONCLUSIONS AND RELEVANCE: Over 90% of US physician members of the OncoAlert Network had FCOIs between 2015 and 2020. Despite the network's non-profit status, FCOIs amongst its members may influence content produced on the network's social media platforms, such as Twitter, where content discussing drugs and clinical trials are often positive and seldom negative or critical. For future informal professional networks, further research is required to establish best practices for issues such as membership requirements, funding, and FCOI disclosure.

RSDM-AHSnet: Designing a robust stochastic dynamic model to allocating health service network under disturbance situations with limited capacity using algorithms NSGA-II and PSO.

In the present study, health services networks were classified into low-level hospitals (provision of public health services) and high-level hospitals (providing specialized health services), which are at risk of being disrupted. They refer the patients to high-level hospitals for inpatient visits or emergencies by ambulance. In the present case, patients are divided into two categories: high priority (the category in which immediate service delivery is needed) and low priority. A stochastic robust dynamic mathematical model for location and allocation of health network regarding limited capacity and disturbance is developed to reduce the total costs and include the basic features of a real problem such as limited capacity. Regarding limited capacity for hospitals, the health network needs redefinition of different layers in the disturbance situation. In this study, we reduce the total costs by reducing hospital costs and costs such as transportation and service to patients. Two metaheuristic algorithms consisting of Non-dominated Sorting Genetic Algorithm II (NSGA-II) and Particle Swarm Optimization (PSO) have been applied to solve the model. Taguchi method design minimizes the cost of parameter tuning, including the level of factors related to the proposed. The results showed the method's applicability for large-scale problems that could evaluate different tools for decision-makers to select effective management strategies in constructing a dependable and robust healthcare network. For example, the total cost is minimized in conditions considered in the genetic algorithm, the population parameter at the highest level, 150, the intersection parameters, and the probability of mutation at the lowest level, 0.7 and 0.1.

Impact of inter-hospital transfers on the prevalence of resistant pathogens in a hospital-community system.

The spread of resistant bacteria in hospitals is an increasing problem worldwide. Transfers of patients, who may be colonized with resistant bacteria, are considered to be an important driver of promoting resistance. Even though transmission rates within a hospital are often low, readmissions of patients who were colonized during an earlier hospital stay lead to repeated introductions of resistant bacteria into hospitals. We developed a mathematical model that combines a deterministic model for within-hospital spread of pathogens, discharge to the community and readmission, with a hospital-community network simulation of patient transfers between hospitals. Model parameters used to create the hospital-community network are obtained from two health insurance datasets from Germany. For parameter values representing transmission of resistant Enterobacteriaceae, we compute estimates for the single admission reproduction numbers RA and the basic reproduction numbers R0 per hospital-community pair. We simulate the spread of colonization through the network of hospitals, and investigate how increasing connectedness of hospitals through the network influences the prevalence in the hospital-community pairs. We find that the prevalence in hospitals is determined by their RA and R0 values. Increasing transfer rates between network nodes tend to lower the overall prevalence in the network by diluting the high prevalence of hospitals with high R0 to hospitals where persistent spread is not possible. We conclude that hospitals with high reproduction numbers represent a continuous source of risk for importing resistant pathogens for hospitals with otherwise low levels of transmission. Moreover, high risk hospital-community nodes act as reservoirs of pathogens in a densely connected network.

Interdependent Networks: A Data Science Perspective.

Traditionally, networks have been studied in an independent fashion. With the emergence of novel smart city technologies, coupling among networks has been strengthened. To capture the ever-increasing coupling, we explain the notion of interdependent networks, i.e., multi-layered networks with shared decision-making entities, and shared sensing infrastructures with interdisciplinary applications. The main challenge is how to develop data analytics solutions that are capable of enabling interdependent decision making. One of the emerging solutions is agent-based distributed decision making among heterogeneous agents and entities when their decisions are affected by multiple networks. We first provide a big picture of real-world interdependent networks in the context of smart city infrastructures. We then provide an outline of potential challenges and solutions from a data science perspective. We discuss potential hindrances to ensure reliable communication among intelligent agents from different networks. We explore future research directions at the intersection of network science and data science.

Why Not? Persuading Clinicians to Reduce Overuse.

OBJECTIVE: To explore how best to deimplement nonrecommended medical services, which can result in excess costs and patient harm. METHODS: We conducted telephone interviews with 15 providers at 3 health systems from June 19 to November 21, 2017. Using the case of nonrecommended imaging in patients with cancer, participants assessed the potential for 7 rationales or "arguments," each characterizing overuse in terms of a single problem type (cost or quality) and affected stakeholder group (clinicians, institutions, society, or patients), to convince colleagues to change their practices. We tested rationales for all problem-stakeholder combinations appearing in prior deimplementation studies. RESULTS: Participants' views varied widely. Relatively few found cost arguments powerful, except for patients' out-of-pocket costs. Participants were divided on institution-quality and clinician-quality rationales. Patient-quality rationales resonated strongly with nearly all participants. However, a "yes, but" phenomenon emerged: after initially expressing strong support for a rationale, participants often undercut it with denials or rationalizations. CONCLUSION: Deimplementation efforts should combine multiple rationales appealing to clinicians' diverse perspectives and priorities. In addition, efforts must consider the complex cognitive dynamics that can undercut data and reasoned argumentation.

Creation of a Geospatially Explicit, Agent-based Model of a Regional Healthcare Network with Application to Clostridioides difficile Infection.

Agent-based models (ABMs) describe and simulate complex systems comprising unique agents, or individuals, while accounting for geospatial and temporal variability among dynamic processes. ABMs are increasingly used to study healthcare-associated infections (ie, infections acquired during admission to a healthcare facility), including Clostridioides difficile infection, currently the most common healthcare-associated infection in the United States. The overall burden and transmission dynamics of healthcare-associated infections, including C difficile infection, may be influenced by community sources and movement of people among healthcare facilities and communities. These complex dynamics warrant geospatially explicit ABMs that extend beyond single healthcare facilities to include entire systems (eg, hospitals, nursing homes and extended care facilities, the community). The agents in ABMs can be built on a synthetic population, a model-generated representation of the actual population with associated spatial (eg, home residence), temporal (eg, change in location over time), and nonspatial (eg, sociodemographic features) attributes. We describe our methods to create a geospatially explicit ABM of a major regional healthcare network using a synthetic population as microdata input. We illustrate agent movement in the healthcare network and the community, informed by patient-level medical records, aggregate hospital discharge data, healthcare facility licensing data, and published literature. We apply the ABM output to visualize agent movement in the healthcare network and the community served by the network. We provide an application example of the ABM to C difficile infection using a natural history submodel. We discuss the ABM's potential to detect network areas where disease risk is high; simulate and evaluate interventions to protect public health; adapt to other geographic locations and healthcare-associated infections, including emerging pathogens; and meaningfully translate results to public health practitioners, healthcare providers, and policymakers.

The role of the Primary Healthcare Network in Iran in hepatitis C virus elimination by 2030.

The World Health Organization (WHO) has estimated that about 71 million people in the world have chronic hepatitis C virus (HCV) and 399,000 die every year due to cirrhosis and cancer caused by HCV. Despite efforts to prevent and control hepatitis, there are still many barriers. In September 2000, during a summit in New York organised by the United Nations, world leaders agreed on a set of achievable targets within a limited timeframe, with the goal of combating poverty, hunger, disease, illiteracy, destruction of the environment and of improving the status of women by 2015; these were known as the Millennium Development Goals. The Primary Health Care Network (PHCN) in Iran has played a very important role in health promotion but its achievements could be enhanced further by improving performance and implementing further changes. The WHO strives to achieve goals of sustainable development by 2030 in many countries, thereby raising awareness, encouraging greater community participation, mobilising resources, using evidence-based policies, and increasing screening services, care and treatment. The concept of the PHCN has been very successful in health promotion in Iran, and has provided a basis for accessible and high-quality services for all. Achieving HCV elimination by 2030 could be achieved with the support of the PHCN, and changes in management with regard to screening, prevention and treatment practices.

Desafios para a implementação da Rede de Cuidados à Pessoa com Deficiência em uma região de saúde: um olhar a partir das dimensões política, organização e estrutura / Challenges for the implementation of the Care Network for Persons with Disabilities in a health region: a look from the dimensions policy, organization, and structure

Resumo Pessoas com deficiência (PCD) vivenciam profundas desigualdades sociais e no acesso à saúde. A Rede de Cuidados à Pessoa com Deficiência (RCPD) foi instituída em 2012, com o objetivo de melhorar esse acesso de forma equânime e igualitária. O objetivo deste artigo é analisar a implementação e os condicionantes da RCPD na região de saúde de São José do Rio Preto. Este é um estudo de caso exploratório, de abordagem qualitativa e quantitativa, ancorado no instrumental de análise de políticas públicas. As dimensões política, organização e estrutura nortearam a análise dos resultados. Foram realizadas entrevistas com 37 atores-chave da gestão, prestadores e da sociedade. O Ministério da Saúde é considerado protagonista pela definição da política e repasse de recursos financeiros. O ente estadual é prestador de serviços e conciliador de demandas municipais através do grupo condutor da RCPD. A inexistência de um sistema de regulação assistencial é um entrave para a organização da rede. Serviços contratualizados decidem quem terá acesso a seu atendimento, não respeitando fluxos pactuados. A estrutura dos serviços de reabilitação, com exceção do Centro Especializado em Reabilitação, não foi orientada pelas necessidades de saúde, mas pela existência dos serviços no território. Evidenciam-se barreiras para a garantia do direito à saúde que perpetuam desigualdades vividas pelas PCD.

Abstract People with Disabilities (PWD) experience profound inequalities both social and in the access to health. The Care Network for Persons with Disabilities (Rede de Cuidados à Pessoa com Deficiência, RCPD) was established in 2012, with the goal of improving this access in an equitable and equal manner. This article aims to analyze the implementation and constraints of the implementation and the conditionings of the RCPD in the health region of São José do Rio Preto. This is an exploratory case study, of qualitative and quantitative approach, anchored in the instrumental of public policy analysis. The dimensions of policy, organization, and structure guided the analysis of results. Interviews were conducted with 37 key players from management, providers, and society. The Ministry of Health is considered the protagonist in defining policy and transferring financial resources. The state agency is the service provider and conciliator of municipal demands by the RCPD leading group. The lack of an assistance regulation system is an obstacle to the network organization. Contracted services decide who will have access to care, not respecting agreed flows. The structure of rehabilitation services, with the exception of the Specialized Rehabilitation Center, was not guided by health needs but by the existence of services in the territory. Barriers to guaranteeing the right to health are evident, perpetuating the inequalities experienced by the PWD.

Accreditation for centers of sarcoma surgery.

Soft-tissue sarcomas (STS) are a heterogeneous group of neoplasms which may be subclassified into over 70 specific histologies and may be distributed throughout the body. Approximately one-half arises in the extremities and one-third arises in the abdomen, pelvis, and retroperitoneum. The diversity and rarity of sarcomas combined with the quite large number of affected patients are factors which underline of the importance of networking in diagnosis, therapy, and research dealing with rare cancers. The expertise of the treating center is one of the most significant factors affecting survival in STS. The optimal treatment of locally recurrent disease is to prevent it; aggressive multidisciplinary treatment of the primary disease is thus required, as adjuvant therapies cannot compensate for inadequate surgery. Treatment within specialized multidisciplinary teams (MDTs) is crucial; a body of expertise in all the areas of diagnosis and treatment is required to manage STS appropriately. Conformity to approved treatment guidelines is improved when patients are treated by an MDT in a reference centre. Traditionally, peer-reviewed literature has discussed the surgical management of STS based on the site of origin. While the site of origin remains an important consideration, it has become increasingly clear that surgery must also be tailored to specific sarcoma histology to more accurately reflect tumor biology and pattern of recurrence. All sarcoma operations, included retroperitoneal surgery, should be performed in specialized centres to ensure optimal outcomes.