HIV prevention research and global inequality: steps towards improved standards of care

Intensification of poverty and degradation of health infrastructure over recent decades in countries most affected by HIV/AIDS present formidable challenges to clinical research. This paper addresses the overall standard of health care (SOC) that should be provided to research participants in developing countries, rather than the narrow definition of SOC that has characterised the international debate on standards of health care. It argues that contributing to sustainable improvements in health by progressively ratcheting the standard of care upwards for research participants and their communities is an ethical obligation of those in resource-rich countries who sponsor and implement research in poorer ones.     

Salicylate poisoning in children: report of three cases

To raise clinicians' awareness of chronic (therapeutic) salicylate poisoning as a common cause of admission in paediatric patients presenting to hospital with respiratory distress (a clinical manifestation of metabolic acidosis) and a history of 'over the counter' treatment with salicylate (Aspirin). We present two complex cases and provide a review of the literature on pathogenesis, clinical presentation and management of salicylate poisoning. A complete history of the illness, including questions on drug use, is vital in assessing the cause of metabolic acidosis in children. Due to the limited options available in managing such patients in many developing countries, emphasis should be placed on prevention of poisoning by educating the community and health care providers.     

An expert consultation system for frontline health workers in primary eye care

In developing countries, blindness is a major health problem whose control depends on the application of simple measures by frontline workers because, in many of these countries, specialist medical care is not readily available. To assist primary health workers in the management of common and potentially blinding eye disorders, we have developed a prototype computer program for a hand-held computer that incorporates a set of guidelines for diagnosis and treatment. This eye treatment program will help evaluate the potential of such devices for improving health care delivery in developing countries. This approach is now feasible because of recent advances in expert system and portable computer technology.     

Archiving the Phenome: Clinical Records Deserve Long-term Preservation

Retention policies for clinical records are set primarily by the states, although the federal government mandates minimum maintenance periods for certain classes of patients and selected types of information. State policies vary considerably, but most jurisdictions permit many types of data to be destroyed after some period usually shorter than 10 years. Many health care organizations hold records longer than mandated, but over time much clinical data are discarded or become difficult to access. For improved care of patients and for support of research, the nation should recognize that clinical information, both paper and electronic, constitutes a valuable asset, the national phenome, that deserves long-term storage in archives that preserve both the records and access to the information. The technical and social problems of establishing archiving are formidable but offer an opportunity to exploit the potential of clinical information for public good.     

Challenges of Childhood TB/HIV Management in Malawi

The diagnosis and management of childhood tuberculosis (TB) are major challenges in countries such as Malawi with high incidence of TB and human immunodeficiency virus (HIV) infection. Diagnosis of TB in children often relies only on clinical features but clinical overlap with the presentation of HIV and other HIV-related lung disease is common. The tuberculin skin test (TST), the standard marker of M. tuberculosis infection in immune competent children, has poor sensitivity in HIV-infected children and is not usually available in Malawi. HIV test should be routine in children with suspected TB as it improves clinical management. HIV-infected children are at increased risk of developing active disease following TB exposure which justifies the use of isoniazid preventive therapy (IPT) once active disease has been excluded but this is difficult to implement and appropriate duration of IPT is unknown. HIV-infected children with active TB experience higher mortality and relapse rates on standard TB treatment compared to HIV-uninfected children, highlighting the need for further research to define optimal treatment regimens. HIV-infected children should also receive appropriate supportive care including cotrimoxazole prophylaxis and anti-retroviral treatment (ART) if indicated. There are concerns about concurrent use of some anti-TB drugs such as rifampicin with some ARTs.     

HIV-positive status and preservation of privacy: a recent decision from the Italian Data Protection Authority on the procedure of gathering personal patient data in the dental office

The processing of sensitive information in the health field is subject to rigorous standards that guarantee the protection of information confidentiality. Recently, the Italian Data Protection Authority (Garante per la Protezione dei Dati Personali) stated their formal opinion on a standard procedure in dental offices involving the submission of a questionnaire that includes the patient's health status. HIV infection status is included on the form. The Authority has stated that all health data collection must be in accordance with the current Italian normative framework for personal data protection and respect the patient's freedom. This freedom allows the patient to decide, in a conscious and responsible way, whether to share health information with health personnel without experiencing any prejudice in the provision of healthcare requested. Moreover, data collection must be relevant and cannot exceed the principles of treatment goals with reference to the specific care of the concerned person. However, the need for recording information regarding HIV infection at the first appointment, regardless of the clinical intervention or therapeutic plan that needs to be conducted, should not alter the standard protection measures of the healthcare staff. In fact, these measures are adopted for every patient.     

面向骨质疏松社区干预的远程管理系统及数据仓库系统设计

目的面向骨质疏松社区干预,研究远程管理系统及进行数据仓库系统设计。方法将数据仓库的基本原理和方法与骨质疏松社区干预相结合,面向社区内骨质疏松高危人群,采用PHP作为开发工具,构建MySQL 4.5关系型数据库,实现基于WEB的B/S模式远程管理系统。结果系统适用于社区卫生服务中心、各级医院骨质疏松专科门诊和卫生行政部门,提供了数据管理、数据查询、在线分析等功能。结论实现了分别为卫生行政管理者提供决策依据和支持,为社区卫生服务中心提供居民健康信息和干预建议,为综合医院的骨质疏松专科医师提供患者随访资料、大量原始科研数据和初步的卫生统计结果等功能。     

A Case for Manual Entry of Structured,Coded Laboratory Data from Multiple Sources into an Ambulatory Electronic Health Record

Laboratory results provide necessary information for the management of ambulatory patients. To realize the benefits of an electronic health record (EHR) and coded laboratory data (e.g., decision support and improved data access and display), results from laboratories that are external to the health care enterprise need to be integrated with internal results. We describe the development and clinical impact of integrating external results into the EHR at Intermountain Health Care (IHC). During 2004, over 14,000 external laboratory results for 128 liver transplant patients were added to the EHR. The results were used to generate computerized alerts that assisted clinicians with managing laboratory tests in the ambulatory setting. The external results were sent from 85 different facilities and can now be viewed in the EHR integrated with IHC results. We encountered regulatory, logistic, economic, and data quality issues that should be of interest to others developing similar applications.     

Health care workers infected with the human immunodeficiency virus. The next steps.

The tragedy of five patients who contracted human immunodeficiency virus (HIV) infection from a seropositive dentist has alarmed the public. The Centers for Disease Control (CDC) recently revised its recommendations for preventing the transmission of HIV infection to patients during invasive procedures. The CDC abandoned a previous plan to list exposure-prone invasive procedures that HIV-infected health care workers should not perform. The CDC said "expert review panels" should decide on a case-by-case basis whether seropositive health care workers may perform invasive procedures. As of February 1992, the revised recommendations were under review by the US Department of Health and Human Services. Many issues remain to be clarified, such as how these panels will operate and whether decisions will be consistent in similar cases. Disregarding the CDC guidelines or infection-control precautions may further erode public trust and lead to draconian restrictions on HIV-infected health care workers. Physicians and dentists should respond more effectively to public fears about HIV transmission. The challenge is to protect patients while respecting the privacy and livelihood of health care workers.     

社区骨质疏松双向转诊实施现状分析与优化建议

背景　在推进单病种社区防治进程中，双向转诊是不可或缺的环节，但目前仍缺乏可指导一线实践的双向转诊实施方案。以骨质疏松为例，在整个诊疗路径中，骨科及相关科室专家的参与不可或缺，但全-专之间如何开展双向转诊仍有待探索。目的　分析国内、外社区骨质疏松双向转诊实施现状，整理经验和不足，梳理有效做法和阻碍因素，为下一步落实社区骨质疏松双向转诊提供参考。方法　于2019年6月，计算机检索中国知网、万方数据知识服务平台、Web of Science、Science Direct数据库中与社区开展骨质疏松双向转诊相关的文献，发表时间设定为1999-01-01至2019-06-15。分别从双向转诊的预期目标、双向转诊类型、双向转诊模式构建方法、双向转诊实施效果及当前面临的困境等方面，对国内、外社区骨质疏松双向转诊情况进行汇总分析，并提出优化建议。结果　最终纳入中文文献14篇、英文文献5篇。国内、外骨质疏松双向转诊具有不同管理模式及转诊标准。在执行过程中，国内居民对骨质疏松重视度较低、治疗依从性较差，社区无正式专科、缺乏完善的检查设备及与二、三级医院间的信息沟通机制。国外的模式类型则局限于针对骨质疏松性骨折后患者的管理。结论　要有效落实社区骨质疏松双向转诊，进而做好骨质疏松防控，应划定可长效防控骨质疏松的防治范围、加强社区全科医生骨质疏松诊疗知识储备、完善社区卫生机构防治环节所需物资配备、开发包含双向转诊分工细节与转诊指标的转诊流程四要素。     

Challenges in the provision of ICU services to HIV infected children in resource poor settings: a South African case study

The HIV/AIDS epidemic has placed increasing demands on limited paediatric intensive care services in developing countries. The decision to admit HIV infected children with Pneumocystis carinii pneumonia (PCP) into the paediatric intensive care unit (PICU) has to be made on the best available evidence of outcome and the ethical principles guiding appropriate use of scarce resources. The difficulty in confirming the diagnosis of HIV infection and PCP in infancy, issues around HIV counselling, and the variance in the outcome of HIV infected children with PCP admitted to the PICU in African studies compound this process. Pragmatic decision making will require evaluation of at least three ethical questions: are there clinical and moral reasons for admitting HIV positive children with PCP to the PICU, should more resources be committed to caring for HIV children who require the PICU, and how can we morally choose candidates for the PICU? Those working in the PICU in HIV endemic regions need to make difficult personal decisions on effective triage of admissions of HIV infected children with PCP based on individual case presentation, availability of resources, and applicable ethical principles.     

Unified-Planning, Graded-Administration, and Centralized-Controlling: A Management Modality for Treating Acquired Immune Deficiency Syndrome with Chinese Medicine in Henan Province of China

Henan Province in China has a major epidemic of human immunodeficiency virus/acquired immune deficiency syndrome(HIV/AIDS).Chinese medicine(CM) has been used throughout the last decade,and a management modality was developed,which can be described by unified-planning,gradedadministration,and centralized-controlling(UGC).The UGC modality has one primary concept(patient-centered medicine from CM theory),four basic foundations(classifying administrative region,characteristics of CM on disease treatment,health resource conditions,and distribution of patients living with HIV),six important relationships(the "three uniformities and three combinations," and the six relationships therein guide the treatment of AIDS with CM),and four key sections(management,operation,records,and evaluation).In this article,the authors introduce the UGC modality,which could be beneficial to developing countries or resource-limited areas for the management of chronic infectious disease.     

AIDS prevention: what are we talking about?

A psychiatrist from Calcutta objects to the colonial culture which still dominates India. Specifically the call for prevention of AIDS and the spread of HIV made by developed countries, yet socioeconomic conditions in India hinder any prevention efforts. India faces other more common and preventable fatal diseases. The basic needs (food, shelter, health, and education) of most people cannot even be met. Thus an AIDS prevention program is an expensive luxury and probably would not reach those whose needs are already not met. 65% of AIDS cases are in Africa especially central Africa and almost 90% of AIDS cases in developing countries are in the most productive age group (20-49 years). The HIV/AIDS epidemic is indeed dealing countries an economic blow. For example, in 1988, AIDS related medical costs in the US stood at US$8.5 billion; lost wages US$55.6 billion; and research, education, and blood screening US$2.3 billion. Developing countries cannot absorb such an economic impact. The AIDS epidemic can strain a developing country's health system such as Zaire. For example, the cost of providing proper care for only 10 AIDS patients is higher than the entire budget of the largest hospital. Yet this hospital's physicians diagnose as many as 15 new cases daily. Economic loss/year due to AIDS deaths in Zaire will equal 8% of the gross national product by 1995. The poor often do not have access to health services. illiteracy (88%) in Brazil impedes AIDS prevention messages from reaching remote rural populations. Brazil already faces a high infant mortality rate and 33% of the population has malaria. Health and social problems in developing countries are so common that AIDS is just 1 more disease. Another obstacle to AIDS prevention in developing countries is that the poor cannot afford to buy condoms. The root cause of AIDS in developing countries is poverty.     

Implementation of an innovative, integrated electronic medical record (EMR) and public health information exchange for HIV/AIDS

Louisiana is severely affected by HIV/AIDS, ranking fifth in AIDS rates in the USA. The Louisiana Public Health Information Exchange (LaPHIE) is a novel, secure bi-directional public health information exchange, linking statewide public health surveillance data with electronic medical record data. LaPHIE alerts medical providers when individuals with HIV/AIDS who have not received HIV care for >12 months are seen at any ambulatory or inpatient facility in an integrated delivery network. Between 2/1/2009 and 1/31/2011, 488 alerts identified 345 HIV positive patients. Of those identified, 82% had at least one CD4 or HIV viral load test over the study follow-up period. LaPHIE is an innovative use of health information exchange based on surveillance data and real time clinical messaging, facilitating rapid provider notification of those in need of treatment. LaPHIE successfully reduces critical missed opportunities to intervene with individuals not in care, leveraging information historically collected solely for public health purposes, not health care delivery, to improve public health.     

Enhancing performance measurement: NCQA's road map for a health information framework. National Committee for Quality Assurance.

Measuring the quality of health care delivery is one of the most critical challenges facing US health care. Performance measurement can be used to track the quality of care that health plans and medical groups deliver, but effective performance measurement requires timely access to detailed and accurate data. In 1996, the National Committee for Quality Assurance (NCQA) commissioned a report to learn what actions would improve health plans' capacity to electronically report performance data for the Health Plan Employer Data and Information Set (HEDIS). Tracking clinical performance will require not just clinical data stored in information systems, but an integrated health information framework. Seven features are essential to this framework: (1) it specifies data elements; (2) it establishes linkage capability among data elements and records; (3) it standardizes the element definitions; (4) it is automated to the greatest possible extent; (5) it specifies procedures for continually assessing data quality; (6) it maintains strict controls for protecting security and confidentiality of the data; and (7) it specifies protocols for sharing data across institutions under appropriate and well-defined circumstances. Health plans should anticipate the use of computerized patient records and prepare their data management for an information framework by (1) expanding and improving the capture and use of currently available data; (2) creating an environment that rewards the automation of data; (3) improving the quality of currently automated data; (4) implementing national standards; (5) improving clinical data management practices; (6) establishing a clear commitment to protecting the confidentiality of enrollee information; and (7) careful capital planning. Health care purchasers can provide the impetus for implementing the information framework if they demand detailed, accurate data on the quality of care.     

Editor's Choice: A methodology for a minimum data set for rare diseases to support national centers of excellence for healthcare and research

Background Although rare disease patients make up approximately 6–8% of all patients in Europe, it is often difficult to find the necessary expertise for diagnosis and care and the patient numbers needed for rare disease research. The second French National Plan for Rare Diseases highlighted the necessity for better care coordination and epidemiology for rare diseases. A clinical data standard for normalization and exchange of rare disease patient data was proposed. The original methodology used to build the French national minimum data set (F-MDS-RD) common to the 131 expert rare disease centers is presented.Methods To encourage consensus at a national level for homogeneous data collection at the point of care for rare disease patients, we first identified four national expert groups. We reviewed the scientific literature for rare disease common data elements (CDEs) in order to build the first version of the F-MDS-RD. The French rare disease expert centers validated the data elements (DEs). The resulting F-MDS-RD was reviewed and approved by the National Plan Strategic Committee. It was then represented in an HL7 electronic format to maximize interoperability with electronic health records.Results The F-MDS-RD is composed of 58 DEs in six categories: patient, family history, encounter, condition, medication, and questionnaire. It is HL7 compatible and can use various ontologies for diagnosis or sign encoding. The F-MDS-RD was aligned with other CDE initiatives for rare diseases, thus facilitating potential interconnections between rare disease registries.Conclusions The French F-MDS-RD was defined through national consensus. It can foster better care coordination and facilitate determining rare disease patients’ eligibility for research studies, trials, or cohorts. Since other countries will need to develop their own standards for rare disease data collection, they might benefit from the methods presented here.     

深圳市宝安区社区老年保健工作现状分析

用问卷调查的方法,调查深圳市宝安区开展老年保健工作的110个社区健康服务中心及相关领导人员、管理人员和工作人员对老年保健工作的评价。结果表明,虽然建立健康档案工作做得最好,但是档案管理较差;特殊老人的专案管理做得相对薄弱;营养保健咨询和心理咨询需要加强。     

菏泽市艾滋病病毒感染者生存现状的研究

目的 了解HIV感染者及AIDS病人的生存环境和生活质量，以建立适合我市实际的家庭和社会关怀和支持体系。方法 采取典型调查的方式调查已确认的HIV／AIDS患者，在知情、保密的情况下进行个人访谈；另外采用现况调查的方法，选择存在HIV感染者和AIDS病人的村庄或附近村庄的居民，调查社区内存在的相关歧视及原因。结果 HIV／AIDS患者存在着健康状况恶化、就医困难、经济窘迫、遭受歧视等的生存危机。结论 应有计划、有步骤地扩大全民健康教育，宣传歧视和不尊重HIV／AIDS病人权利的危害性，真正消除对艾滋病恐惧；建立对感染者和病人的保护机制；提供关怀、护理、社会和情感支持等的预防控制措施。