Comparison of consumers’ views on electronic data sharing for healthcare and research

New models of healthcare delivery such as accountable care organizations and patient-centered medical homes seek to improve quality, access, and cost. They rely on a robust, secure technology infrastructure provided by health information exchanges (HIEs) and distributed research networks and the willingness of patients to share their data. There are few large, in-depth studies of US consumers’ views on privacy, security, and consent in electronic data sharing for healthcare and research together.Objective This paper addresses this gap, reporting on a survey which asks about California consumers’ views of data sharing for healthcare and research together.Materials and Methods The survey conducted was a representative, random-digit dial telephone survey of 800 Californians, performed in Spanish and English.Results There is a great deal of concern that HIEs will worsen privacy (40.3%) and security (42.5%). Consumers are in favor of electronic data sharing but elements of transparency are important: individual control, who has access, and the purpose for use of data. Respondents were more likely to agree to share deidentified information for research than to share identified information for healthcare (76.2% vs 57.3%, p < .001).Discussion While consumers show willingness to share health information electronically, they value individual control and privacy. Responsiveness to these needs, rather than mere reliance on Health Insurance Portability and Accountability Act (HIPAA), may improve support of data networks.Conclusion Responsiveness to the public’s concerns regarding their health information is a pre-requisite for patient-centeredness. This is one of the first in-depth studies of attitudes about electronic data sharing that compares attitudes of the same individual towards healthcare and research.     

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.     

The personal digital assistant, a new medical instrument for the exchange of clinical information at the point of care

Personal digital assistants can provide a portable, integrated platform for point-of-care clinical reference, patient management and data communication. Clinical reference programs allow the user to access information from the Internet and guidelines. Patient management programs allow doctors to access and store clinical information. Wireless technologies have potential for rapid exchange of clinical laboratory results and efficient "electronic patient handovers". Thus, these devices provide the potential for true continuity of care across the healthcare system.     

Rights theory in a specific healthcare context: "speaking ill of the dead"

Generally physicians have a legal and ethical obligation of keeping confidentiality regarding their communication with patients and it is clear that we all have rights. The application of rights theorem, which usually refers to the recognition of individual human rights, to the deceased offers possible answers to the problematic question of patient confidentiality after death. Philosophical considerations broadly support utilitarian ideals concerning the 'common good'. However, it may be possible to rank rights according to a hierarchy of need and thus preserve individual rights where they do not impinge upon the public's right to protection from harm and the physician's right to tell the truth. This has broad implications for confidentiality, anonymity and health care information in general for patients, their families and healthcare workers. We discuss these issues, with specific reference to an individual case.     

Disease control in the information era

As a result of advances in information technology, there is now a new capacity to manage, interpret and apply data for the benefit not only of individual patients but of the population as a whole. Population health information systems are currently inadequate to meet the needs of disease control. In a rapidly changing world, effective public health action requires timely and efficient data about what is happening in the whole population. As the national effort to harness information technology to the needs of individual patient care begins, it is desirable that the electronic patient record also becomes the building block for public health research and monitoring. Individual healthcare and population healthcare should be two sides of the one coin. Ownership, privacy and access to the contents of the electronic health record should now be addressed in the context that disease control in the whole population will increasingly depend upon an efficient "real time" information system.     

门诊“一卡通”在诊疗服务中的应用

目的探讨“一卡通”在门诊诊疗的应用效果。方法在门诊信息管理系统基础上实行“一卡通”门诊信息化诊疗模式．比较“一卡通”就诊模式与传统就诊模式患者的就诊时间、患者满意度和门诊投诉率。结果“一卡通”模式组的就诊时间显著短于传统模式组,患者满意度高于传统模式组,两组患者的就诊时间及患者满意度得分比较差异有高度统计学意义（均P〈0．01）。“一卡通”模式组投诉率显著低于传统模式组（P〈0．05）。结论“一卡通”就诊模式能有效缩短患者的就诊时间,提高患者满意度,降低门诊投诉率,值得推广应用。     

Challenges of a negative work load and implications on morale,productivity and quality of service delivered in NHS laboratories in England

The National Health Service (NHS) is a term used to describe the publicly funded healthcare delivery system providing quality healthcare services in the United Kingdom. There are several challenges militating against the effective laboratory service delivery in the NHS in England. Biomedical scientists work in healthcare to diagnose disease and evaluate the effectiveness of treatment through the analysis of body fluids and tissue samples from patients. They provide the “engine room” of modern medicine with 70% of diagnosis based on the laboratory results generated by them.This review involved the search of literature for information on working condition of biomedical scientist in the NHS in England.Laboratory service delivery in the NHS in England faces numerous daunting challenges; staffing levels in the last few years have become dangerously low, less remunerated, relatively less experienced and predominantly band 5's, multidisciplinary rather than specialty based, associated with working more unsocial hours without adequate recovery time, de-banding of staff, high staff turnaround, profit and cost driven rather than quality. These factors has resulted in burn out, low morale, high sickness absences, increased error rate, poor team spirit, diminished productivity and suboptimal laboratory service delivery.There is the urgent need to retract our steps on unpopular policies to ensure that patient care is not compromised by ensuring adequate staffing level and mix, ensuring adequate remuneration of laboratory staff, implementing evidenced-based specialty oriented service, determining the root cause/s for the high staff turnover and implementing corrective action, identifying other potential sources of waste in the system rather than pruning the already dangerously low staffing levels and promoting a quality delivery side by side cost effectiveness.     

A personally controlled electronic health record for Australia

Objective

On July 1, 2012 Australia launched a personally controlled electronic health record (PCEHR) designed around the needs of consumers. Using a distributed model and leveraging key component national eHealth infrastructure, the PCEHR is designed to enable sharing of any health information about a patient with them and any other health practitioner involved in their care to whom the patient allows access. This paper discusses the consumer-facing part of the program.

Method

Design of the system was through stakeholder consultation and the development of detailed requirements, followed by clinical design assurance.

Results

Patients are able to access any posted information through a web-accessible ‘consumer portal.’ Within the portal they are able to assert access controls on all or part of their record. The portal includes areas for consumers to record their own personal information.

Discussion

The PCEHR has the potential to transform the ability of patients to actively engage in their own healthcare, and to enable the emerging partnership model of health and healthcare in medicine. The ability to access health information traditionally kept within the closed walls of institutions also raises challenges for the profession, both in the language clinicians choose and the ethical issues raised by the changed roles and responsibilities.

Conclusions

The PCEHR is aimed at connecting all participants and their interventions, and is intended to become a system-wide activity.     

Effects of librarian-provided services in healthcare settings: a systematic review

Objective

To assess the effects of librarian-provided services in healthcare settings on patient, healthcare provider, and researcher outcomes.

Materials and methods

Medline, CINAHL, ERIC, LISA (Library and Information Science Abstracts), and the Cochrane Central Register of Controlled Trials were searched from inception to June 2013. Studies involving librarian-provided services for patients encountering the healthcare system, healthcare providers, or researchers were eligible for inclusion. All librarian-provided services in healthcare settings were considered as an intervention, including hospitals, primary care settings, or public health clinics.

Results

Twenty-five articles fulfilled our eligibility criteria, including 22 primary publications and three companion reports. The majority of studies (15/22 primary publications) examined librarians providing instruction in literature searching to healthcare trainees, and measured literature searching proficiency. Other studies analyzed librarian-provided literature searching services and instruction in question formulation as well as the impact of librarian-provided services on patient length of stay in hospital. No studies were found that investigated librarians providing direct services to researchers or patients in healthcare settings.

Conclusions

Librarian-provided services directed to participants in training programs (eg, students, residents) improve skills in searching the literature to facilitate the integration of research evidence into clinical decision-making. Services provided to clinicians were shown to be effective in saving time for health professionals and providing relevant information for decision-making. Two studies indicated patient length of stay was reduced when clinicians requested literature searches related to a patient''s case.     

A large-scale quantitative analysis of latent factors and sentiment in online doctor reviews

Online physician reviews are a massive and potentially rich source of information capturing patient sentiment regarding healthcare. We analyze a corpus comprising nearly 60 000 such reviews with a state-of-the-art probabilistic model of text. We describe a probabilistic generative model that captures latent sentiment across aspects of care (eg, interpersonal manner). We target specific aspects by leveraging a small set of manually annotated reviews. We perform regression analysis to assess whether model output improves correlation with state-level measures of healthcare. We report both qualitative and quantitative results. Model output correlates with state-level measures of quality healthcare, including patient likelihood of visiting their primary care physician within 14 days of discharge (p=0.03), and using the proposed model better predicts this outcome (p=0.10). We find similar results for healthcare expenditure. Generative models of text can recover important information from online physician reviews, facilitating large-scale analyses of such reviews.     

When patient care is shared, who is the most responsible physician?

Ottawa lawyer Karen Capen examines the case of five Ontario physicians who faced charges of professional misconduct after a patient they cared for died in 1988. The investigation, which focused on the concept of "most responsible physician," serves as a cautionary tale for all doctors who share the care of a patient with colleagues.     

Standardizing Nursing Information in Canada for Inclusion in Electronic Health Records: C-HOBIC

The Canadian Health Outcomes for Better Information and Care (C-HOBIC) project introduced systematic use of standardized clinical nursing terminology for patient assessments. Implemented so far in three Canadian provinces, C-HOBIC comprises an innovative model for large-scale capture of standardized nursing-sensitive clinical outcomes data within electronic health records (EHRs). To support this activity, nursing assessment and outcomes concepts were mapped to the International Classification for Nursing Practice (ICNP®). By comparing serial data on a patient across multiple time points, the C-HOBIC model can generate nursing-sensitive patient outcome reports. A principle benefit of the C-HOBIC model is that it provides nurses with information critical to planning for and evaluating patient care. Inclusion of nursing information in either provincial databases or EHRs in three Canadian provinces promotes continuity of patient care across sectors of the healthcare systems in those provinces and also facilitates aggregation and analysis by administrators and policy makers. The C-HOBIC model provides standardized, consistent, interoperable clinical information that reflects nursing practice throughout the Canadian healthcare System.     

Antimicrobial Treatmdent of "Complicated" Intra-Abdominal Infections and The New IDSA Guidelines - A Commentary and an Alternative European Approach According to Clinical Definitions

Recently, an update of the IDSA guidelines for the treatment of complicated intraabdominal infections has been published. No guideline can cater for all variations in ecology, antimicrobial resistance patterns, patient characteristics and presentation, health care and reimbursement systems in many different countries. In the short time the IDSA guidelines have been available, a number of practical clinical issues have been raised by physicians regarding interpretation of the guidelines. The main debatable issues of the new IDSA guidelines are described as follows: The authors of the IDSA guidelines present recommendations for the following subgroups of "complicated" IAI: community-acquired intra-abdominal infections of mild-to-moderate and high severity and health care-associated intra-abdominal infections (no general treatment recommendations, only information about antimicrobial therapy of specific resistant bacterial isolates). From a clinical point of view, "complicated" IAI are better differentiated into primary, secondary (community-acquired and postoperative) and tertiary peritonitis. Those are the clinical presentations of IAI as seen in the emergency room, the general ward and on ICU. Future antibiotic treatment studies of IAI would be more clinically relevant if they included patients in studies for the efficacy and safety of antibiotics for the treatment of the above mentioned forms of IAI, rather than conducting studies based on the vague term "complicated" intra-abdominal infections. - The new IDSA guidelines for the treatment of resistant bacteria fail to mention many of new available drugs, although clinical data for the treatment of "complicated IAI" with new substances exist. Furthermore, treatment recommendations for cIAI caused by VRE are not included. This group of diseases comprises enough patients (i.e. the entire group of postoperative and tertiary peritonitis, recurrent interventions in bile duct surgery or necrotizing pancreatitis) to provide specific recommendations for such antimicrobial treatment. - A panel of European colleagues from surgery, intensive care, clinical microbiology and infectious diseases has developed recommendations based on the above mentioned clinical entities with the aim of providing clear therapeutic recommendations for specific clinical diagnoses. An individual patient-centered approach for this very important group of diseases with a substantial morbidity and mortality is essential for optimal antimicrobial treatment.     

A systems approach to accepted standards of care: Shifting the blame

In healthcare, from a legal perspective, the standard of acceptable practice has been generally set by the courts and defined as healthcare professionals acting in a manner that is widely accepted by their peers as meeting an acceptable standard of care. This view, however, reflects the state of how practice “is” rather than what it “ought to be”. What is ought to be depends on whether you take a “person” or “system” oriented approach to practice.The increasing pressures of lack of money and resources, and an ever–increasing need for care are bringing pressure on the health services to move to a system approach and this is gaining acceptance both with clinicians and thus eventually the courts.A systems-type approach to healthcare will, by necessity, embrace clinical protocols and guidelines supported by clinical information systems. It will also see blame for errors shifting from clinicians to the organisations that employ them.This paper argues that a continued use of a person-based approach to healthcare, developed through an historical record of practice by individual clinicians, is no longer adequate defence in a case of supposed negligence.When the healthcare system has codified clinical guidelines and digital data gathered across thousands of clinicians and their patients, it is possible to compute adequate levels of care and expect clinicians and the healthcare system in general to meet these minimum standards.Future negligence decisions will rely on a systems-based best practice standard of care determined through evidence rather than opinion     

Culture and language differences as a barrier to provision of quality care by the health workforce in Saudi Arabia

Objectives:

To identify, synthesize, and summarize issues and challenges related to the culture and language differences of the health workforce in Saudi Arabia.

Methods:

A comprehensive systematic review was conducted in May 2014 to locate published articles. Two independent researchers in consultation with several experts used 4 electronic databases (ISI Web of Knowledge, Science Direct, PubMed, and Cochrane) to scrutinize articles published from January 2000 - March 2014. Each of the studies was given a quality assessment rating of weak, moderate, or strong, and was evaluated for methodological soundness using Russell and Gregory’s criteria.

Results:

The online literature search identified 12 studies that met the inclusion criteria. Lack of knowledge of non-Muslim nurses or culture in Saudi Arabia, difficulties in achieving cultural competence, and culture shock were documented as cultural difference factors. Issues in language difference include the clarity of language use by health care providers in giving information and providing adequate explanation regarding their activities.

Conclusion:

The available information provided by this review study shows that there is a communication barrier between patients and health care workers such as healthcare workers demonstrate low cultural competency. Despite the fact that the government provides programs for expatriate healthcare workers, there is a need to further improve educational and orientation programs regarding the culture and language in Saudi Arabia.Effective communication with patients and health care workers is a key process in safe and quality health care.1 Patient and clinician relationships rely on good communication, resulting in improved patient satisfaction, adherence to medical recommendations, and better healthcare outcomes.2 Effective patient and clinician interaction starts from the patient inquiry regarding symptoms of the disease, to discussing the treatment, and management plan of the clinician.2 According to Stewart,3 many healthcare professionals believe that communication is more effective when it is responsive to patient needs, values, and preferences. Factors that influence this communication include cultural differences, low health literacy, and language differences.1 Cultural misunderstanding between patients and predominantly expatriate health care providers is another factor contributing to patient dissatisfaction and poor quality of care. The cultural setting of Saudi Arabia is a unique blend of Arabic with an Islamic influence.4 The beliefs and attitudes of Saudi people are characterized by the Arabic tribal traditions and customs, and the Islamic worldview.4,5 The uniqueness of Saudi culture, coupled with the large number of expatriate health professionals who have a limited knowledge of Saudi culture, aggravate the problem of providing high quality of care and may cause potential cultural conflicts, which may lead to patient dissatisfaction. According to the Ministry of Health (MOH), most healthcare workers in Saudi Arabia such as nurses are expatriates from countries like India, the Philippines, Malaysia, Australia, America, the United Kingdom, South Africa, and other Middle Eastern countries with different cultural backgrounds.6-9 Not only do cultural backgrounds differ among these healthcare workers, language differences also serve as a barrier to effective communication. This language barrier is often not immediately an issue because of their proficiency in English. However, the Arabic language is the primary language in Saudi Arabia and not all patients understand or are proficient in the English language.10 With the increasing number of expatriates’ healthcare workers, effective communication may not occur and the quality of patients’ healthcare as well as their safety will be at risk. Therefore, we aim to perform a systematic review to identify, synthesize, and summarize the issues and challenges of effective communication between patients and health workers, and to provide recommendations for improvements.     

Healthcare Data Gateways: Found Healthcare Intelligence on Blockchain with Novel Privacy Risk Control

Healthcare data are a valuable source of healthcare intelligence. Sharing of healthcare data is one essential step to make healthcare system smarter and improve the quality of healthcare service. Healthcare data, one personal asset of patient, should be owned and controlled by patient, instead of being scattered in different healthcare systems, which prevents data sharing and puts patient privacy at risks. Blockchain is demonstrated in the financial field that trusted, auditable computing is possible using a decentralized network of peers accompanied by a public ledger. In this paper, we proposed an App (called Healthcare Data Gateway (HGD)) architecture based on blockchain to enable patient to own, control and share their own data easily and securely without violating privacy, which provides a new potential way to improve the intelligence of healthcare systems while keeping patient data private. Our proposed purpose-centric access model ensures patient own and control their healthcare data; simple unified Indicator-Centric Schema (ICS) makes it possible to organize all kinds of personal healthcare data practically and easily. We also point out that MPC (Secure Multi-Party Computing) is one promising solution to enable untrusted third-party to conduct computation over patient data without violating privacy.     

Benchmarking Electronic Medical Records Initiatives in the US: a Conceptual Model

This article provides a conceptual model for benchmarking the use of clinical information systems within healthcare organizations. Additionally, it addresses the benefits of clinical information systems which include the reduction of errors, improvement in clinical decision-making and real time access to patient information. The literature suggests that clinical information systems provide financial benefits due to cost-savings from improved efficiency and reduction of errors. As a result, healthcare organizations should adopt such clinical information systems to improve quality of care and stay competitive in the marketplace. Our research clearly documents the increased adoption of electronic medical records in U.S. hospitals from 2005 to 2007. This is important because the electronic medical record provides an opportunity for integration of patient information and improvements in efficiency and quality of care across a wide range of patient populations. This was supported by recent federal initiatives such as the establishment of the Office of the National Coordinator of Health Information Technology (ONCHIT) to create an interoperable health information infrastructure. Potential barriers to the implementation of health information technology include cost, a lack of financial incentives for providers, and a need for interoperable systems. As a result, future government involvement and leadership may serve to accelerate widespread adoption of interoperable clinical information systems.     

Patient complaints in Finland 2000-2004: a retrospective register study

Today, monitoring of patient complaints in healthcare services is being used as a tool for quality assurance systems and in the future development of services. This nationwide register study describes the number of all complaints processed, number of complaints between different state provinces, healthcare services and healthcare professionals, and outcomes of complaints in Finland during the period 2000-2004. All complaints processed at the State Provincial Offices and the National Authority for Medicolegal Affairs were analysed by statistical methods. Complaints about mental healthcare were explored in greater detail. The analysis showed that the number of patient complaints increased considerably during the study period. There were changes in the number of complaints between study years in different provinces. Out of different healthcare services, an especially marked increase was seen in private healthcare. Nearly all complaints were lodged against physicians, and over half of the complaints were made because of medical error. In mental health care, patients more often complained about unsatisfactory certificates and statements and the use of compulsory hospital care. An analysis of the outcomes revealed that in mental health care complaints more seldom led to consequences. The results need to be utilised when planning interventions for advanced supervision, prevention of adverse events and patient safety in healthcare, and especially in mental health care. From the patients' perspective, it is important to create a culture where most problem situations are handled where the treatment was provided, thus avoiding a complex complaints process.