A false promise of COVID-19 'big' health data? Health data integrity and the ethics and realities of Australia's health information management practice.

Context: Coronavirus disease (COVID-19) caused by severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) has precipitated an unprecedented volume of medical research. Articles reporting two studies were recently retracted from prestigious journals for reasons including the (thus far) unverifiable provenance of data. This commentary adopts a health information management lens to focus on aspects of data in one of the studies (investigating the use of hydroxychloroquine or chloroquine with or without a macrolide for treatment of COVID-19). The issues: Referencing the Australian context, the current article considers some of the study's reported hospital administrative and coded data categories within the context of Australian hospitals' health information management practices. It highlights potential risks associated with the collection and interpretation of 'big' health data. Implications: This article identifies pitfalls that confront researchers undertaking multi-country studies and the need to consider country-specific: (i) collected administrative data items; (ii) health information-related ethical, legal and management policy constraints on the use of confidential hospital records and derived data; and (iii) differences in health classification systems and versions used in the coding of diagnoses and related procedures, interventions and health behaviours. Conclusions: The article concludes that the inclusion of a qualified, senior Health Information Manager in research teams and on institutional Human Research Ethics Committees would help to prevent potential problems.

Periodismo y COVID-19

Health information is central to changes in healthcare: A clinician's view.

Changes in healthcare, such as integrated care, the use of big data, electronic health records (EHRs), telemedicine, decision support systems and consumer empowerment, are impacting on the management of health information. Integrated care requires linked data; activity-based funding requires valid coding; EHRs require standards for documentation, retrieval and analysis; and decision support systems require standardised nomenclatures. The ethical oversight of how health-related information is used, as opposed to governance of its content, storage and communication, remains ill-defined. More fundamentally, the conceptual foundations of health information in terms of "diagnostic" constructs are creating limitations: Why should a medical diagnosis be privileged as the key descriptor of care, over disability or other aspects of the human experience? Who gets to say what matters, and how and by whom is that translated into meaningful information? These are important questions on which the health information management profession is well placed to lead. In this changing environment, threats and opportunities for the profession are presented and discussed. Highlighted is the need for leadership from the profession on the ethical use of health information.

Considerations for Genomic Data Privacy and Security when Working in the Cloud.

Next-generation sequencing produces large amounts of data. The complexity and data management issues associated with next-generation sequencing have led many laboratories to turn to cloud services, especially when internal information technology infrastructure is inadequate to support data requirements. In addition, public cloud repositories of variants are being increasingly utilized, and their data sets are being populated through crowdsourcing submissions of human genetic variation identified within laboratories. The purpose of this review is to describe the challenges of managing genomic data in the cloud and to discuss potential strategies to surmount these challenges in a compliant manner. The definitions and advantages of cloud systems are outlined. Special regulatory considerations for laboratories are included, and strategies for compliance in the US regulatory environment for genetic information in clinical patient care as well as in research and public databases are also discussed.

Deploying unqualified personnel in health records practice: Role substitution or quackery? Implications for health services delivery in Nigeria.

Healthcare professionals are obliged to work collaboratively regardless of their professional differences in order to provide the highest possible standard of care to patients. However, this type of collaboration can also lead to role substitution and, in effect, engagement of unqualified personnel in all health professions, including the health information management profession. This is a particular problem in developing nations such as Nigeria, where this trend has the potential to undermine the delivery of health services, the quality and the confidentiality of health information and trust between patients and healthcare professionals. To clarify and protect the professional identity of qualified health information management professionals in Nigeria and to prevent other experts who also work in health facilities (e.g. IT specialists, librarians) from claiming membership of the profession, the nomenclature for the health information management profession has been changed to health records and information management profession.

Rethinking the ethical approach to health information management through narration: pertinence of Ricœur's 'little ethics'.

The increased complexity of health information management sows the seeds of inequalities between health care stakeholders involved in the production and use of health information. Patients may thus be more vulnerable to use of their data without their consent and breaches in confidentiality. Health care providers can also be the victims of a health information system that they do not fully master. Yet, despite its possible drawbacks, the management of health information is indispensable for advancing science, medical care and public health. Therefore, the central question addressed by this paper is how to manage health information ethically? This article argues that Paul Ricœur's "little ethics", based on his work on hermeneutics and narrative identity, provides a suitable ethical framework to this end. This ethical theory has the merit of helping to harmonise self-esteem and solicitude amongst patients and healthcare providers, and at the same time provides an ethics of justice in public health. A matrix, derived from Ricœur's ethics, has been developed as a solution to overcoming possible conflicts between privacy interests and the common good in the management of health information.

Managing disclosure of personal information: An opportunity to enhance supported employment.

OBJECTIVE: To first provide an overview of studies that explore mental health disclosure in the workplace; including factors that influence the decision to disclose, and differing approaches to disclosure (binary, multidimensional, and evolving and ongoing). Second, to provide a critical overview of existing tools designed to help clients manage their mental health disclosure decisions. METHOD: Electronic searches of PubMed, PsycINFO and ScienceDirect were undertaken, excluding all articles published prior to 1990. The following search terms were used: mental health disclosure, employment, severe and persistent mental illness, psychosis, schizophrenia, supported employment, individual placement and support (IPS). RESULTS: We found that mental health disclosure involves a complex decision-making process, and yet clients of IPS supported employment are currently provided with little structured guidance on how to manage their personal information in the workplace. CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: More extensive investigations are required of existing mental health disclosure tools before they can be developed into a standardized intervention for practitioners. However, preliminary evidence suggests that facilitating better disclosure decisions and management of personal information is a promising area of future research. This line of investigation is likely to find ways to enhance competitive employment outcomes in supported employment for people with severe and persistent mental illness.

Personal genomic information management and personalized medicine: challenges, current solutions, and roles of HIM professionals.

In recent years, the term personalized medicine has received more and more attention in the field of healthcare. The increasing use of this term is closely related to the astonishing advancement in DNA sequencing technologies and other high-throughput biotechnologies. A large amount of personal genomic data can be generated by these technologies in a short time. Consequently, the needs for managing, analyzing, and interpreting these personal genomic data to facilitate personalized care are escalated. In this article, we discuss the challenges for implementing genomics-based personalized medicine in healthcare, current solutions to these challenges, and the roles of health information management (HIM) professionals in genomics-based personalized medicine.

TMI! ethical challenges in managing and using large patient data sets.

The advent and expansion of electronic medical record systems and open-access databases are creating a "data tsunami." As this wave descends, we must anticipate and address several ethical and social risks: threats to patient privacy, threats to the reputations of various social groups, and threats to public trust in biomedical research.

Evolving approaches to the ethical management of genomic data.

The ethical landscape in the field of genomics is rapidly shifting. Plummeting sequencing costs, along with ongoing advances in bioinformatics, now make it possible to generate an enormous volume of genomic data about vast numbers of people. The informational richness, complexity, and frequently uncertain meaning of these data, coupled with evolving norms surrounding the sharing of data and samples and persistent privacy concerns, have generated a range of approaches to the ethical management of genomic information. As calls increase for the expanded use of broad or even open consent, and as controversy grows about how best to handle incidental genomic findings, these approaches, informed by normative analysis and empirical data, will continue to evolve alongside the science.

Code of ethics: principles for ethical leadership.

The code of ethics for a professional association incorporates values, principles, and professional standards. A review and comparative analysis of a 1934 pledge and codes of ethics from 1957, 1977, 1988, 1998, 2004, and 2011 for a health information management association was conducted. Highlights of some changes in the healthcare delivery system are identified as a general context for the codes of ethics. The codes of ethics are examined in terms of professional values and changes in the language used to express the principles of the various codes.

A conceptual framework and ethics analysis for prevention trials of Alzheimer Disease.

As our understanding of the neurobiology of Alzheimer Disease deepens, it has become evident that early intervention is critical to achieving successful therapeutic impact. The availability of diagnostic criteria for preclinical Alzheimer Disease adds momentum to research directed at this goal and even to prevention. The landscape of therapeutic research is thus poised to undergo a dramatic shift in the next 5-10 years, with clinical trials involving subjects at risk for Alzheimer Disease who have few or no symptoms. These trials will also likely rely heavily on genetics, biomarkers, and or risk factor stratification to identify individuals at risk for Alzheimer Disease. Here, we propose a conceptual framework to guide this next generation of pharmacological and non-pharmacological clinical pursuit, and discuss some of the foreseeable ethical considerations that may accompany them.

Trustworthy reuse of health data: a transnational perspective.

BACKGROUND: The widespread adoption of electronic health records (EHRs) is accelerating the collection of sensitive clinical data. The availability of these data raises privacy concerns, yet sharing the data is essential for public health, longitudinal patient care, and clinical research. METHOD: Following previous work in the United States [1,2], the International Medical Informatics Association convened the 2012 European Summit on Trustworthy Reuse of Health Data. Over 100 delegates representing national governments, academia, patient groups, industry, and the European Commission participated. In all, 21 countries were represented. The agenda was designed to solicit a wide range of perspectives on trustworthy reuse of health data from the participants. RESULTS AND CONCLUSIONS: Delegates agreed that the "government" should provide oversight, that the reuse should be "fully regulated," and that the patient should be "fully informed." One important reflection was that doing nothing will have negative implications across the European Union (EU). First, continued fragmented parallel non-standards-based developments in multiple sectors entail a substantial duplication of costs and human effort. Second, a failure to work jointly across the stakeholders on common policy frameworks will forego a crucial opportunity to boost key EU markets (pharmaceuticals, health technology and devices, and eHealth solutions) and counter global competition. Finally, and crucially, the lack of harmonized policy across EU nations for trustworthy reuse of health data risks patient safety. The productive dialog, initiated with multiple stakeholders from government, academia, and industry, will have to continue, in order to address the many remaining issues outlined in this white paper.