[Is COVID-19 a hype?] / Is covid-19 een hype?

The answer to the question whether COVID-19 is a hype or not depends on how we define a hype. The article loosely builds on philosophical discussions about hypes in knowledge work and information sciences. The central idea is to make clear that hypes always imply a certain overload of information and that the paradoxical outcome of this that it is not just information that is piling up but also disinformation. It is argued that it is in this sense (and only in this sense) that COVID-19 is a hype. How we respond to this hype depends very strongly on subjective sensitivities towards both information and desinformation.

Public Health and Epidemiology Informatics: Recent Research and Trends in the United States.

OBJECTIVES: To survey advances in public health and epidemiology informatics over the past three years. METHODS: We conducted a review of English-language research works conducted in the domain of public health informatics (PHI), and published in MEDLINE between January 2012 and December 2014, where information and communication technology (ICT) was a primary subject, or a main component of the study methodology. Selected articles were synthesized using a thematic analysis using the Essential Services of Public Health as a typology. RESULTS: Based on themes that emerged, we organized the advances into a model where applications that support the Essential Services are, in turn, supported by a socio-technical infrastructure that relies on government policies and ethical principles. That infrastructure, in turn, depends upon education and training of the public health workforce, development that creates novel or adapts existing infrastructure, and research that evaluates the success of the infrastructure. Finally, the persistence and growth of infrastructure depends on financial sustainability. CONCLUSIONS: Public health informatics is a field that is growing in breadth, depth, and complexity. Several Essential Services have benefited from informatics, notably, "Monitor Health," "Diagnose & Investigate," and "Evaluate." Yet many Essential Services still have not yet benefited from advances such as maturing electronic health record systems, interoperability amongst health information systems, analytics for population health management, use of social media among consumers, and educational certification in clinical informatics. There is much work to be done to further advance the science of PHI as well as its impact on public health practice.

Using personal health information: do we manage conflicting interests?

The discipline of health informatics is concerned with developing the information systems that facilitate collection, manipulation and dissemination of personal health information. It promotes the benefits of using personal health information for secondary purposes, including policy development, service planning and research. At the same time the health informatics community is a strong advocate of privacy and the need to protect individuals from negative consequences arising from unauthorised use of their personal health information. This creates a dilemma for health informatics professionals since there will be occasions when the rights and interests of individuals conflict with the rights and interests of the public, or particular sections of the public. In such instances, the community as a whole, and individual members, may be required to take a stance on whether to prioritise privacy over public needs and interests. Such instances are likely to increase in the future as demands for access to personal health information increase. This paper considers the way the health informatics community approaches the dilemma. It reports on a study which analysed various perspectives on the issue as expressed in HISA conference proceedings. The study identified six discourses, each of which focuses on different uses of personal health information. The study found that the discourses expressed strong support for expanded use of personal health information where the public interest was convincingly argued, although the interpretation of what constituted public interest varied between the discourses. The study also found that while higher level discussions highlight the potential for negative consequences arising from expanded uses of personal health information, this was not often discussed in the conference texts. It is argued that such concerns should be considered, particularly in the light of discussions around the Commonwealth government's Individual Health Identifier and Personally Controlled Electronic Health Records initiatives.

Ethnicity and the ethics of data linkage.

Linking health data with census data on ethnicity has potential benefits for the health of ethnic minority groups. Ethical objections to linking these data however include concerns about informed consent and the possibility of the findings being misused against the interests of ethnic minority groups. While consent concerns may be allayed by procedures to safeguard anonymity and respect privacy, robust procedures to demonstrate public approval of data linkage also need to be devised. The possibility of findings being misused against the interests of ethnic minority groups may be diminished by informed and open public discussion in mature democracies, but remain a concern in the international context.

Learning from experience: privacy and the secondary use of data in health research.

Health services research must continually address the question: Under what conditions may data not collected specifically for research, such as primary medical data, be re-used for research without compromising the privacy of the data-subjects? For secondary use of data in research there are basically three options. Option A: Use personal data with consent or other assent from the data-subjects. To make this both fairer and more practical, in many circumstances broader construals of consent, or permission or approval, need to be explored and instituted. Option B: Anonymise the data, then use them. For many studies, this is the most practical and desirable option. The craft of anonymisation, including reversible anonymisation, or key-coding, needs to be developed and more fully supported under law. Option C: Use personal data without explicit consent, under a public interest mandate. Whether and how the data should be anonymised will depend on the situation. Public health mandates and protections deserve to be clarified, strengthened and extended for a variety of surveillance, registration, clinical audit, health services research and other types of investigation. Safeguards are an integral part of the research promise to the public, offer crucial reassurance and should be emphasised. For health services research, databases are core resources, and their stewardship must be cultivated.

Privacy and the secondary use of data for health research: experience in Canada and suggested directions forward.

This paper has three parts. The first part describes developments in the use of personal information for health research in Canada, challenges in responding to new data protection legislation and the work of the Canadian Institutes of Health Research in assisting the research community to adapt to these developments. The second part critiques two aspects of the stakeholder analysis posited in William Lowrance's report: the lack of an analysis of researchers' interests as distinct from those of society at large, and the framing of privacy as an individual interest. I argue for recasting the privacy and research tension as a values conflict between two societal goods and not an individual versus a societal interest, and for explicitly acknowledging researchers' interests as data users. In so doing, there is no clear trump of privacy or research, and greater importance is placed upon the weighing of benefits and risks of individual studies to determine whether the waiving of consent for a particular study or programme of research is justified. The third part makes specific suggestions as to future ways in which data use practices may evolve. I argue the need to engage the public in deliberating the broad parameters under which personal information will be used, as the public collectively has a major stake in this issue and their input provides legitimacy for these uses of information. In addition, given the proliferation of prospectively-developed databases for research purposes, a 'systems' approach for obtaining consent for participation to replace the current study-by-study recruitment of individuals is appropriate.

Privacy and the secondary use of data in health research in Scotland.

In response to new data protection legislation for the UK and widespread concern about its implications, the Scottish Executive set up the Confidentiality and Security Advisory Group for Scotland (CSAGS) to place the use of personal health information in a modern setting. The group affirmed the principle of consent and, more broadly, the importance of involving patients and the public in decisions about their health information. It promoted methods of acceptable anonymisation of data, and the need for good stewardship and disclosure of data uses to the greatest extent possible, where explicit individual consent and anonymisation were not practicable. They did not recommend pursuit of legislation, preferring consensus, informed debate and widespread acceptance of the proposed arrangements. The Scottish Executive is now responding to the work of CSAGS to develop systems that command public and patient confidence, promote good practice for clinicians and researchers, and preserve important public health and research functions.

Ethical issues in public health informatics: implications for system design when sharing geographic information.

Public health programs today constitute a multi-professional inter-organizational environment, where both health service and other organizations are involved. Developing information systems, including the IT security measures needed to suit this complex context, is a challenge. To ensure that all involved organizations work together towards a common goal, i.e., promotion of health, an intuitive strategy would be to share information freely in these programs. However, in practice it is seldom possible to realize this ideal scenario. One reason may be that ethical issues are often ignored in the system development process. This investigation uses case study methods to explore ethical obstacles originating in the shared use of geographic health information in public health programs and how this affects the design of information systems. Concerns involving confidentiality caused by geographically referenced health information and influences of professional and organizational codes are discussed. The experience presented shows that disregard of ethical issues can result in a prolonged development process for public health information systems. Finally, a theoretical model of design issues based on the case study results is presented.