The Alzheimer’s Dementia Patients’ Observed Illness Course and Experience in Ghana and Care Lessons to Be Learnt: A Mental Health Professional’s Perspective

Alzheimer’s disease (AD) and associated dementia patient numbers continue to increase globally with associated economic costs to healthcare systems. Of note is the increase in numbers in lower and middle-income countries (LMICs) including Sub-Saharan African (SSA) countries, which already face challenges with their health budgets from communicable and non-communicable diseases. Ghana, an SSA country, faces the problem of healthcare budgetary difficulties and the additional impact of AD as a consequence of increasing population strata of old aged persons (OAPs) due to the demographic transition effect. This article uses examples of known patients’ illness courses to give a perspective on the lived experience of patients with dementia (PWD) in Ghana, living amongst a populace with a culture of stigmatization of PWD, and a relatively fragile public mental health system (PMHS) for those with mental illness, including AD. The lived experience of AD patients is characterised by stigmatisation, discrimination, non-inclusiveness, diminished dignity and human rights abuses in the face of their mental disability, and eventually death. This article is an advocacy article giving voice to the voiceless and all persons suffering from AD and other dementias in Ghana, whilst pleading for a call to action from healthcare professionals and responsible state agencies.

Federation Boosting Tree for Originator Rights Protection

The problem of data island hinders the application of big data in artificial intelligence model training,so researchers propose a federated learning framework.It enables model training without having to centralize all data in a central storage point.In the current horizontal federated learning scheme,each participant gets the final jointly trained model.No solution is proposed for scenarios where participants only provide training data in exchange for benefits,but do not care about the final jointly trained model.Therefore,this paper proposes a newboosted tree algorithm,calledRPBT(the originator Rights Protected federated Boosted Tree algorithm).Compared with the current horizontal federal learning algorithm,each participant will obtain the final jointly trained model.RPBT can guarantee that the local data of the participants will not be leaked,while the final jointly trained model cannot be obtained.It is worth mentioning that,from the perspective of the participants,the scheme uses the batch idea to make the participants participate in the training in random batches.Therefore,this scheme is more suitable for scenarios where a large number of participants are jointly modeling.Furthermore,a small number of participants will not actually participate in the joint training process.Therefore,the proposed scheme is more secure.Theoretical analysis and experimental evaluations show that RPBT is secure,accurate and efficient.

基于AGREEⅡ和RIGHT对医患沟通指南的质量评价研究

目的对医患沟通的临床实践指南进行方法学和报告质量评价,以期确定高质量指南,提供临床参考。方法通过检索MEDLINE(PubMed)、Web of Science、中国知网(CNKI)、万方数据知识服务平台、维普(VIP),补充医脉通、用药助手、丁香园网站的相关临床实践指南(CPG),使用AGREEⅡ和RIGHT工具进行指南质量评价,采用组内相关系数(ICC)用于评估评审者对每个项目理解的一致性。结果共纳入2份临床实践指南,每个领域的评审人员的总体一致性是可以接受的。AGREEⅡ评价结果显示,2篇指南推荐级别均为B级,CPG所有7个领域的平均报告率为50.64%,其中领域1最高(88.89%),领域3最低(30.95%)。RIGHT评价结果显示,指南平均报告率为29.22%。结论医患沟通相关指南质量与数量仍有待提高,指南制订者应严格按照AGREEⅡ和RIGHT的要求规范撰写,以期提出高水平、高标准的循证指南,来指导医护人员的临床实践。

A Patient Bill of Rights for Psychotropic Prescription: A Call for a Higher Standard of Care

The pharmaceutical industry has made it very difficult to know what the clinical trial evidence actually is regarding psychotropics. Consequently, primary care physicians and other front-line practitioners are at a disadvantage when attempting to adhere to the ethical and scientific mandates of evidence based prescriptive practice. This article calls for a higher standard of prescriptive care derived from a risk/benefit analysis of clinical trial evidence. The authors assert that current prescribing practices are often empirically unsound and unduly influenced by pharmaceutical company interests, resulting in unnecessary risks to patients. In the spirit of evidenced based medicine’s inclusion of patient values as well as the movement toward health home and integrated care, we present a patient bill of rights for psychotropic prescription. We then offer guidelines to raise the bar of care equal to the available science for all prescribers of psychiatric medications.

Prognostic value of the echocardiographic right/left ventricular end-diastolic diameter ratio in patients with idiopathic pulmonary arterial hypertension

Background Previous studies have shown that an echocardiographic right/left ventricular end-diastolic diameter ratio(RV/LV ratio)≥0.9 is an independent predictor of poor prognosis in patients with acute pulmonary embolism. The prognostic value of the RV/LV ratio in patients with idiopathic pulmonary arterial hypertension(IPAH) is still unknown. Methods We retrospectively enrolled 95 consecutive patients with newly diagnosed IPAH and 16 of them were reevaluated by echocardiography at 3-12 months following targeted therapy.Follow-up data were obtained by telephone interviews and review of the patients’ records.Results The RV/LV ratio was in parallel with the severity of World Health Orgnization(WHO) functional class and mean right atrial pressure.The RV/LV ratio was positively correlated with total pulmonary resistance(P P P 2 saturation(P P = 0.001),weight and absence of targeted therapy were independent predictors of death.No significant changes in the RV/LV ratio before and after targeted therapy were observed. A baseline RV/LV ratio≥0.84 or a further increase in the RV/LV ratio during targeted therapy indicated a poor prognosis. Conclusions The RV/LV ratio helps to assess the severity of IPAH and serves as an independent predictor of prognosis in patients with IPAH.

HealthyBlockchain for Global Patients

An emerging healthcare delivery model is enabling a new era of clinical care based on well-informed decision-making processes.Current healthcare information systems(HISs)fall short of adopting this model due to a conflict between information security needed to implement the new model and those already enforced locally to support traditional care models.Meanwhile,in recent times,the healthcare sector has shown a substantial interest in the potential of using blockchain technology for providing quality care to patients.No blockchain solution proposed so far has fully addressed emerging cross-organization information-sharing needs in healthcare.In this paper,we aim to study the use of blockchain in equipping struggling HISs to cope with the demands of the new healthcare delivery model,by proposing HealthyBlockchain as a granular patient-centered ledger that digitally tracks a patient’s medical transactions all along the treatment pathway to support the care teams.The patient-centered ledger is a neutral tamper-proof trail timestamp block sequence that governs distributed patient information across the decentralized discrete HISs.HealthyBlockchain connects patients,clinicians,and healthcare providers to facilitate a transparent,trustworthy,and secure supporting platform.

The Improvement of China’s AIDS Notification System from the Perspective of Human Rights

China has established a two-level normative structure AIDS notification system with the AIDS Prevention and control Regulations as the core and local regulations as the supplement The problem is that the local legislations have different provisions with regard to the subject of notification and whether to adopt mandatory notification, which confronts the implementation of the AIDS notification system and the prevention of AIDS transmission with real difficulties The different attitudes of local legislations to the mandatory notification system for AIDS essentially reflects the dilemma of legislators in balancing the right to privacy of HIV-infected patients and the right to health of their sexual partners from the perspective of rights limitations, this paper aims to conducts interest balance analysis in the aspects of social urgency, public interest, substantive damage and the right to know of others and holds the view that when these two rights conflict with each other, priority should be given to the right to health of HIV-infected patients and their sexual partner as well as public health In terms of specific systems, the AIDS Prevention and control Regulations should establish a mandatory notification system and local legislation should take into consideration of local conditions to make specific provisions on issues of notification subject, notification procedures and confidentiality obligations after notification.

Voluntary and Compulsory "AIDS" Screening from the Perspective of Human Rights:A Study Based on HIV Exceptionalism

HIV screening can be used to detect,control and prevent the spread of HIV/AIDS.The attitude towards HIV screening relates to the general trend of human rights protection of AIDS sufferers and infectors.HIV exceptionalism has been adopted in traditional international practice.That means the specific notified,voluntary consent shall be obtained from examinees before they are screened.However,there is move to abandon HIV exceptionalism in order to detect more infectors and treat AIDS the same as another infectious disease.This has resulted in 'compulsory screening' and 'consent after notification'.In China, 'voluntary' screening, 'real-name detection' and 'compulsory screening' exist in different regions.Thus,it is crucial to identify the legal regulation principle of HIV screening from the perspective of human rights.

Human Rights Protection in Genome Editing

Introducing the human rights perspective into the multi-dimensional governance of human genome editing activities would help define boundaries for the behaviors of stakeholders such as the state, researchers, ethics committee members, and the public, and clarify specific practices of these subjects or entities to meet the requirements of human rights obligations. Based on the human dignity principle, humans must never be used as a means to an end in scientific research. The right to physical and mental health requires the implementation of the principles of informed consent, the primacy of life, and risk control in genome editing, as well as the proper treatment of embryos. The right to privacy corresponds to the confidentiality obligations and non-intervention obligations of relevant parties, and the protection of sensitive personal information points to the special compliance requirements regarding information processing. Differential treatment of genome-edited humans requires objective and reasonable justification, and should also meet the requirements of the proportionality principle.

健康医疗数据共享背景下中国患者隐私保护相关研究现状

目的梳理分析健康医疗数据共享背景下中国患者隐私保护相关研究现状,以期为未来相关领域的研究提供参考。方法检索2018—2023年中国知网、万方数据库中有关患者隐私保护的期刊文献,使用Cite Space 6.2.R5软件进行关键词聚类分析和关键词突现分析,结合文献具体内容梳理患者隐私保护研究现状。结果共纳入1590篇文献进行分析;发文量最多的核心期刊为《中国医学伦理学》(54篇,3.40%);中国患者隐私保护领域研究现状可概括为医疗护理活动相关隐私问题、医疗服务新技术引发的隐私问题以及特殊情境下的隐私问题;关键词突现分析显示“个人信息”“数据共享”是当前热点研究主题。结论健康医疗数据共享背景下,患者隐私保护仍是研究热点及重点。目前研究对患者隐私保护的定义较为局限,建议未来从多角度出发,深入挖掘多方对于隐私保护的认识,丰富患者隐私保护内涵。此外,还需加强医务人员患者隐私保护意识和行为实践培养,不断实践患者隐私保护技术的安全性及有效性,进一步完善特殊时期及健康数据共享背景下的个人隐私保护相关立法。

《民法典》背景下个人信息保护的司法考察与制度完善

大数据时代,为充分保障个人的信息安全,我国相继施行的《民法典》《个人信息保护法》对此作出了较为全面的规定。考察相关规则的司法适用,发现我国个人信息保护存在个人信息与隐私权界定不清、损害赔偿威慑作用不足、公益诉讼制度效用未充分发挥、“知情—同意”标准不一且流于形式等问题。为解决上述问题,可通过构建可识别的场景化模式界定个人信息,引入情境脉络完整性理论判定隐私,审慎引入惩罚性赔偿,明晰个人信息保护公益诉讼的适用条件,构建“国家—行业—平台”三层规则体系实现实质同意,全面保护个人信息。

数据要素流通与安全的研究范畴与未来发展趋势

针对数据从信息技术时代的受控共享向数据技术时代的数据要素泛在流通演化的趋势,分析了数据共享与数据要素流通的差异,阐述了什么样的数据才能成为数据要素,提出了数据成为数据要素所必须具有的6个属性,定义了数据要素流通模型及主要环节,明确了数据要素流通的研究范畴,梳理了数据要素流通研究范畴的相关概念,厘清了研究范畴所涵盖的关键核心技术,并对未来需要突破的关键技术进行了展望。

脑机接口技术背景下精神完整权的逻辑证成和制度构想

面对脑机接口技术对人的隐私、精神完整性和心理连续性造成的威胁,身体权虽能够提供一定保障,但是尚不足以表彰其特殊性,尤其是对于非侵入式的。隐私权虽然能够保障公民免予心智思想被探知,但是不能兼及改变。思想自由、认知自由和精神自决保障公民寻求主动干预以塑造一个人大脑状态的积极面向有些激进。脑机接口技术对于心智思想的干预,不但直接、严重,甚至可能永远,因此要确立一种精神完整权。不论何种用途、侵入程度、接口类型,该技术研究应用都必须经过告知同意,不得强制以物理力或以隐瞒的方式为之。与为了保障公民心理健康权,强调国家的实现义务不同,精神完整权关涉隐私、身份、自主,聚焦于一种对抗国家不得干预的权能。

截屏社交的“刺猬困境”——聊天记录再传播中隐私边界的游移与重塑

截屏社交指个体将聊天内容截屏并转发给他人,以期拉近社交距离的行为。截屏社交会打破聊天双方的隐私平衡,使原本私密的聊天记录面临隐私风险。对此,个体需保持边界敏感、重塑边界契约;平台需提供技术支持,加强用户信息自决权、强化审核把关、简化维权通道;法律应破除适用障碍,从法理层面与实践层面共同着手,保障截屏社交中的信息安全。

在泌尿外科住院医师临床教学中开展患者隐私保护教育的探索

目的探讨在泌尿外科住院医师规范化培训中增加患者隐私保护教育。方法对2022年7月至2023年6月期间轮转至上海交通大学医学院附属瑞金医院泌尿外科专业基地住院医师30人,采用现场带教和典型案例分析方法进行患者隐私保护教育,比较教学前后住院医师患者隐私保护行为测试评分。随机选取培训前一年度和培训当年度泌尿外科门诊和病房各100名患者,进行隐私保护满意度调查。结果经过患者隐私保护教育,住院医师的患者隐私保护行为测试培训后总分较培训前得分[(23.57±1.01)分比(18.77±1.81)分]有明显提高,差异有统计学意义(P<0.01)。开展患者隐私保护培训后,泌尿外科患者对门诊和病房的隐私保护满意度评分较开展培训前有提高,差异有统计学意义(P<0.01)。结论在泌尿外科临床教学中,对住院医师开展患者隐私保护教育,可以改善住院医师患者隐私保护行为,并提高患者对泌尿外科门诊和病房的隐私保护满意度。

公众知情权与个人隐私权:公共卫生治理中的价值两难与伦理抉择

公众知情权与个人隐私权是公共卫生治理中两种均应保护的重要权利。保障公众知情权与个人隐私权不仅有利于保障公民权利和维护公共健康,而且是维护人的尊严和价值、促进社会文明进步的题中之义。二者既有诸多共同的重要意义和伦理价值,也有不同的价值取向。价值取向的差异可能导致实践中两种权利之间的冲突。现实地看,公共卫生治理中公众知情权与个人隐私权的冲突主要表现为两种权利主体之间的利益冲突、以权利冲突为内容的法律冲突以及由义务主体的“一身二任”导致的义务冲突,从伦理层面看则是两种权利的不同价值取向导致的价值两难、以“尊重”原则为核心的伦理冲突以及以道德义务为核心的价值冲突和角色伦理困境。公共卫生治理中公众知情权与个人隐私权的冲突看似一种非此即彼的“悲剧性冲突”,但由于二者在尊重和保障公民权利和维护公众健康等方面具有价值统一性,两种权利仍然可以而且应该通过有限度的让渡方式予以平衡。平衡公众知情权与个人隐私权的价值两难,应基于公共利益优先和生命健康至上,坚持必要性、最小化和不伤害等伦理原则,使个人隐私权有限度地让渡于公众知情权。