A consumer health information system must be able to comprehend both expert and non-expert medical vocabulary and to map between the two. We describe an ongoing project to create a new lexical database called Medical WordNet (MWN), consisting of medically relevant terms used by and intelligible to non-expert subjects and supplemented by a corpus of natural-language sentences that is designed to provide medically validated contexts for MWN terms. The corpus derives primarily from online health information (...) sources targeted to consumers, and involves two sub-corpora, called Medical FactNet (MFN) and Medical BeliefNet (MBN), respectively. The former consists of statements accredited as true on the basis of a rigorous process of validation, the latter of statements which non-experts believe to be true. We summarize the MWN / MFN / MBN project, and describe some of its applications. (shrink)

A subcategory of medical tourism, reproductive tourism has been the subject of much public and policy debate in recent years. Specific concerns include: the exploitation of individuals and communities, access to needed health care services, fair allocation of limited resources, and the quality and safety of services provided by private clinics. To date, the focus of attention has been on the thriving medical and reproductive tourism sectors in Asia and Eastern Europe; there has been much less consideration given to (...) more recent ‘players’ in Latin America, notably fertility clinics in Chile, Brazil, Mexico and Argentina. In this paper, we examine the context-specific ethical and policy implications of private Argentinean fertility clinics that market reproductive services via the internet. Whether or not one agrees that reproductive services should be made available as consumer goods, the fact is that they are provided as such by private clinics around the world. We argue that basic national regulatory mechanisms are required in countries such as Argentina that are marketing fertility services to local and international publics. Specifically, regular oversight of all fertility clinics is essential to ensure that consumer information is accurate and that marketed services are safe and effective. It is in the best interests of consumers, health professionals and policy makers that the reproductive tourism industry adopts safe and responsible medical practices. (shrink)

In discussions of health reform, the increased use of health information technology is a common element of nearly every serious proposal on the table. Health IT includes electronic health records kept by providers, personal health records offered by health insurance plans or owned by consumers, and electronic health information exchanges. Although health reform initiatives being discussed contain little detail regarding health IT, in general they promote health IT to (...) facilitate the electronic sharing of health information to improve individual and population health. During the 2008 presidential campaign, the health care proposals of both President Obama and Senator McCain discussed health IT. President Obama’s proposal invests $50 billion over the next five years to promote the adoption of health IT with privacy safeguards. Senator McCain’s plan also encouraged the adoption of health IT, with an emphasis on coordination. (shrink)

As health care costs continue to escalate, cost control measures will likely become unavoidable and painful. One approach is to engage external forces to allocate resources - for example, through managed care or outright rationing. Another approach is to engage consumers to make their own allocation decisions, through "self-rationing," wherein they are given greater awareness, control, and hence responsibility for their health care spending. Steadily gaining popularity in this context is the concept of "consumer directed health (...) care" (CDHC), which is envisioned to both control cost and enhance choice, by combining financial incentives with information to help consumers make more informed health care decisions and to appreciate the economic trade-offs of those decisions. While CDHC is gaining attention in the popular press, business publications, and academic journals, it is not without controversy about its relative merits and demerits. CDHC raises questions regarding the ethical limits of consumer responsibility for their choices. While the emphasis on consumer choice implies that autonomy is the ruling ethical principle in CDHC, it must be tempered by justice and beneficence. Justice must temper autonomy to protect disadvantaged populations from further widening disparities in health care access and outcomes that could arise from health care reform efforts. Beneficence must temper autonomy to protect consumers from unintended consequences of uninformed decisions. Thoughtful paternalism suggests that CDHC plans offer choices that are comprehensible to lay consumers, limited in their range of options, and carefully structured with default rules that minimize potential error costs. (shrink)

Millions of Americans access the Internet forhealth information, which is changing the waypatients seek information about, and oftentreat, certain medical conditions. It isestimated that there may be as many as 100,000health-related Web sites. Theavailability of so much health informationpermits consumers to assume more responsibilityfor their own health care. At the same time,it raises a number of issues that need to beaddressed. The health information available toInternet users may be inaccurate orout-of-date. Potential conflicts of interestresult (...) from the blurring of the distinctionbetween advertising and professional healthinformation. Also, potential threats to privacymay result from data mining. Health care consumers need to be able toevaluate the quality of the informationprovided on the Internet. Various evaluativemechanisms such as codes of ethics, ratingsystems, and seals of approval have beendeveloped to aid in this process. Theeffectiveness of these solutions is evaluated inthis paper. Finally, the paper addresses theimportance of including patients in developingstandardized quality assurance systems for online health information. (shrink)

This paper presents a critical interpretive synthesis of research on the efficacy of comics in educating consumers on communicable diseases. Using this review methodology, the authors drew from empirical as well as non-empirical literature to develop a theoretical framework exploring the implications of comics’ combination of images and text to communicate this health promoting information. The authors examined selected works’ alignment with the four motivational components of Keller’s ARCS Model to evaluate research within the context of learner motivation. (...) Findings of this research indicate comics offer a useful method for providing consumer health education, particularly regarding topics that individuals may have difficulty in discussing openly. (shrink)

The discourse about traceability in food chains focused on traceability as means towards the end of managing health risks. This discourse witnessed a call to broaden traceability to accommodate consumer concerns about foods that are not related to health. This call envisions the development of ethical traceability. This paper presents a justification of ethical traceability. The argument is couched in liberal distinctions, since the call for ethical traceability is based on intuitions about consumer rights to informed (...) choice. The paper suggests that two versions of ethical traceability find justification. The first version of ethical traceability entails that governments ensure that all consumers are provided with foods that respect some threshold level of, e.g., animal welfare that is supported by an overlapping consensus. The second version of ethical traceability entails that food producers provide consumers with products, and sufficient information about these products, that are relevant for reasonable, non-superficial values that are not supported by an overlapping consensus. Governments should facilitate this in the sense that consumers are not provided with misinformation about characteristics of foods that are relevant for reasonable, non-superficial values that are not supported by an overlapping consensus. (shrink)

PurposeThe purpose of this study is to identify the major factors influencing the adoption of health-care wearables in generation Z (Gen Z) customers in India. A conceptual framework using push pull and mooring (PPM) adoption theory was developed.Design/methodology/approachData was collected from 208 Gen Z customers based on 5 constructs related to the adoption of health-care wearables. Confirmatory factor analysis and structural equation modelling was used to analyse the responses. The mediation paths were analysed using bootstrapping method and examination (...) of the standardized direct and indirect effects in the model.FindingsThe study results indicated that the antecedent factors consisted of push (real-time health information availability), pull (normative environment) and mooring (decision self-efficacy) factors. The mooring factor (MOOR) was related to the push factor but not the pull factor. The MOOR, in turn, was related to the switching intention of Gen Z customers for health wearables adoption.Research limitations/implicationsThe research study extended the literature related to the PPM theory in the context of the adoption of health wearables among Gen Z customers in India.Practical implicationsThe study outcome would enable managers working in health wearable organizations to understand consumer behaviour towards health wearables.Social implicationsThe use of health wearables among Gen Z individuals would lead to future generations adopting a healthy lifestyle resulting in an effective workforce and better economy.Originality/valueThis was one of the few studies which have explored the PPM theory to explore the factors for the adoption of health wearables among Gen Z customers in India. (shrink)

Mental health-related data generated by app users during the routine use of Consumer Mental Health Apps (CMHAs) are being increasingly leveraged for research and product improvement studies. However, it remains unclear which ethical safeguards and practices should be implemented by researchers and app developers to protect users during these studies, and concerns have been raised over their current implementation in CMHAs. To better understand which ethical safeguards and practices are implemented, why and how, 17 app developers and (...) researchers were interviewed who had been involved in using CMHA data for studies. Interviewees discussed the impact on stakeholder interests, sufficiency thresholds and procedural alterations of informed consent, data protection, gathering app user perspectives and representing users in app design and study conduct, and ensuring adequate support. Although the reasoning behind how and why these ethical safeguards and practices should be implemented showed considerable variability and several gaps, interviewees converged on various general lines of reasoning. This allowed for the development of a coherent and nuanced account that could prove useful for future CMHA studies and which could stimulate further normative investigation of the role of ethical safeguards and practices in these studies. (shrink)

The unfortunately vast history of paternalism in both medicine and clinical research has resulted in perpetually increasing respect for patient autonomy and free choice in Western health care systems. Beginning with the negative right to informed consent, the principle of respect for autonomy has for many patients evolved into a positive right to request treatments and expect accommodation. This evolution of patient autonomy has mirrored a more general social attitude of market liberalism where increasing numbers of patients have come (...) to embody the role of the “consumer.” This paper explores this transformation and critiques the current way in which respect for patient autonomy is put into practice. Ultimately, this paper concludes that the consumer view of patient autonomy is dysfunctional. Moreover, this paper argues that, based on the inherent goals of medicine, some form of paternalism is required in any meaningfully therapeutic relationship. (shrink)

Gamma radioactivity produced by human technology is the most dangerous industrial product to life. Two recent global catastrophic events in which nuclear plants were involved, separated only by 25 years, have confirmed that, independently of the usage of nuclear weapons, achieving the 100% of security in the nuclear energy management was and still is a complete unrealistic idea. Although the guarantee of offering information of food and drink products quality concerning the date of expiry or the ingredients content is (...) nowadays stipulated in laws around many countries, this is not the case of the radiation safety. An important investment to offer information concerning gamma radiation safety conditions in food and drink products offered by markets, which also could help to localize quickly, possible radioactive slight incidents, is here discussed. The implementation of a previous consumer-behaviour experiment in markets is also suggested. (shrink)

Robust technology infrastructure is needed to enable learning health care systems to improve quality, access, and cost. Such infrastructure relies on the trust and confidence of individuals to share their health data for healthcare and research. Few studies have addressed consumers’ views on electronic data sharing and fewer still have explored the dual purposes of healthcare and research together. The objective of the study is to explore factors that affect consumers’ willingness to share electronic health information (...) for healthcare and research. This study involved a random-digit dial telephone survey of 800 adult Californians conducted in English and Spanish. Logistic regression was performed using backward selection to test for significant associations of each explanatory variable with the outcome variable. The odds of consent for electronic data sharing for healthcare decreased as Likert scale ratings for EHR impact on privacy worsened, odds ratio = 0.74, 95% CI [0.60, 0.90]; security, OR = 0.80, 95% CI [0.66, 0.98]; and quality, OR = 0.59, 95% CI [0.46–0.75]. The odds of consent for sharing for research was greater for those who think EHR will improve research quality, OR = 11.26, 95% CI [4.13, 30.73]; those who value research benefit over privacy OR = 2.72, 95% CI [1.55, 4.78]; and those who value control over research benefit OR = 0.49, 95% CI [0.26, 0.94]. Consumers’ choices about electronically sharing health information are affected by their attitudes toward EHRs as well as beliefs about research benefit and individual control. Design of person-centered interventions utilizing electronically collected health information, and policies regarding data sharing should address these values of importance to people. Understanding of these perspectives is critical for leveraging health data to support learning health care systems. (shrink)

The food supply is complicated and consumers are increasingly calling for labeling on food to be more informative. In particular, consumers are asking for the labeling of food derived from genetically modified organisms based on health, safety, and environmental concerns. At issue is whether the labels that are sought would accurately provide the information desired. The present study examined consumer perceptions of health, safety and the environment for foods labeled organic, natural, fat free or low fat, (...) GMO, or non-GMO. Findings indicated that respondents consistently believed that foods labeled GMO are less healthy, safe and environmentally-friendly compared to all other labels. These results suggest that labels mean something to consumers, but that a disconnect may exist between the meaning associated with the label and the scientific consensus for GMO food. These findings may provide insight for the development of labels that provide information that consumers seek. (shrink)

Direct to consumer genetic testing offered via the Internet has been available for over a decade. Initially most tests of this type were offered without the input of the consumer’s own health professional. Ethical and practical concerns have been a raised over the use of such tests: these include fulfilling the requirement for informed consent, utility of results for health care management and the potential burden placed upon health services by people who have taken tests.

Providing individuals with the information necessary to make informed decisions is now considered an ethical standard for health systems and general practitioners.

In the last two decades, WORDNET has evolved as the most comprehensive computational lexicon of general English. In this article, we discuss its potential for supporting the creation of an entirely new kind of information resource for public health, viz. MEDICAL WORDNET. This resource is not to be conceived merely as a lexical extension of the original WORDNET to medical terminology; indeed, there is already a considerable degree of overlap between WORDNET and the vocabulary of medicine. Instead, we (...) propose a new type of repository, consisting of three large collections of (1) medically relevant word forms, structured along the lines of the existing Princeton WORDNET; (2) medically validated propositions, referred to here as medical facts, which will constitute what we shall call MEDICAL FACTNET; and (3) propositions reflecting laypersons’ medical beliefs, which will constitute what we shall call the MEDICAL BELIEFNET. We introduce a methodology for setting up the MEDICAL WORDNET. We then turn to the discussion of research challenges that have to be met in order to build this new type of information resource. (shrink)

There is currently little evidence that the information provided by personal genomics companies—such as 23andMe and Navigenics—on a direct-to-consumer (DTC) basis, has any real health value. To be...

Governments, producers, and international free tradeorganizations like the World Trade Organization (WTO) areincreasingly confronted with consumers who not only buy (or don'tbuy) goods, but also demand that those goods are producedconforming to certain ethical (often diverse) standards. Not onlysafety and health belong to these ethical ideals, but animalwelfare, environmental concerns, labor circumstances, and fairtrade. However, this phantom haunts the dusty world of social andpolitical philosophy as well. The new concept ``consumersovereignty'' bypasses the conceptual dichotomy of consumer andcitizen.According to (...) the narrow liberal response to this newconstellation, with respect to food one should conceptualizeconsumer sovereignty as the right of the individual consumer toget information on food products and to make his or her ownchoice on the market of food products. In this conception, thereis a very strong emphasis on rules and principles with respect tothe autonomy of individuals.I argue that these narrow liberal concepts are not sufficient forappropriate public policy-making in democratic societies, andthat they only enable us to identify problems; they do not helpnon-experts (and experts, if it comes to that, as well) inweighing the different ethical claims. Besides, not onlyprinciples play a role in the outcome, but all kinds of ideals aswell, like roles, values, and norms. My principal argument isthat analysis or justification of norms or principles is notsufficient to get a synthesis or construction of ethicalsolutions: we need some value orientation to guide us inbalancing the different ethical claims by solving an ethicalproblem. Moreover, this balancing is something that requiressocial space and social time, i.e., public debates. With theconcept of public debates a whole new dimension enters ethicalanalysis, because the attention of ethicists shifts toformulating criteria of successful and rational public debates.However, in the broad liberal view these concepts aresupplemented with values, preferences, practices of care, andinvolvement. I argue firstly for a broadened perspective on foodas an integral part of life styles and not only as something thatpresents risks. That is the reason that food gets such intensiveattention from the public, which is summarized in the concept ofconsumer concerns. Secondly, I defend the argument that not only(rational) public debates, but intensive commitments of bothproducers and consumers in every link of the chain in so calledcare practices or consumer councils can enhance confidence in thefood production system and the way we extract our daily intakefrom nature. (shrink)

On June 3, 2003, the European Council of health ministers rejected a proposal from the European Commission to allow drug manufacturers to advertise directly to particular groups of patients; the proposal had already been rejected by the European Parliament subsequent to a heated public debate in which consumer and patient groups almost unanimously argued that it was not the role of drug companies to provide information to patients. The pilot scheme suggested by the Commission would only have (...) applied to patients with three chronic diseases, AIDS, diabetes, and asthma, and would, it was argued, not undermine an overall ban. Drug companies would have been required to abide by a special code of conduct and clear any information given to patients—on web sites or in specialized publications—with national authorities. (shrink)

In this paper we present arguments for and against the disclosure of genetic information to the insurance companies. One of the main issues which emerges from these arguments is the question of who should be responsible for the health insurance costs of the individuals who are most likely to be affected by the disclosure of genetic information. The results of a resident opinion survey related to the above question are presented and public policy alternatives related to the (...) survey findings are discussed at the end of this paper. (shrink)

This research aims at exploring the underlying mechanisms how consumers respond to statistical and narrative health claims when they evaluate food products. Moreover, personality traits and product-related information are also incorporated to discuss their effects on the relationship between message types and consumers’ food product evaluation. The results indicate that statistical health claims are more persuasive than narrative health claims. In addition, the results show that individuals’ health knowledge, NFC moderate the relationship between message types (...) and product evaluation. It argues that individuals with limited health knowledge evaluate food product more favorably when statistical health claims are used, while individuals with more health knowledge evaluate food product more favorably when narrative health claims are used. Moreover, it reveals that individuals with high NFC evaluate food product more favorably when statistical health claims are used, while individuals with low NFC evaluate food product more favorably when narrative health claims are used. (shrink)

Members of the lay public are turning increasingly to the internet to answer health-related questions. Some authors suggest that the widespread availability of online health information has dislodged medical knowledge from its traditional institutional base and enabled a growing role for alternative or previously unrecognized health perspectives and ‘lay health expertise’. Others have argued, however, that the organization of information retrieved from influential search engines, particularly Google, has merely intensified mainstream perspectives because of the (...) growing consolidation of the internet with traditional, commercial media sources. In this paper we describe an analysis of ‘first page’ results retrieved through Google searches about several common health concerns, each of which has been the subject of controversy as a result of uncertain aetiology, diagnoses, outcomes and/or contested approaches to treatment. Our findings suggest that the online search tactics used by most lay health information seekers produce sources of information that, for the most part, reflect mainstream biomedical discourses, often linked to commercial interests, rather than a plurality of voices that offer a variety of perspectives and resources. We discuss the implications for health-interested internet searchers who fail to look beyond the ‘first page’. (shrink)

As consumer lifestyles have changed over recent decades, people have increasingly turned to meals prepared away from home. A major consequence of this shift in eating patterns has been a concomitant rise in obesity rates worldwide. Research has consistently documented that consumers tend to make less healthy choices when purchasing prepared meals away from home. In part, this can be attributed to inadequate information at the time of purchase; both nutrition experts and lay consumers tend, for example, to (...) underestimate calories in food purchased away from home and thus portion sizes tend to be larger. Thus, by requiring restaurants and other purveyors of prepared foods to provide the calorie content and other nutrition information at the point of purchase, consumers should be able to make more informed decisions and public health should be improved. The often maligned Affordable Care Act (i.e., “Obamacare”) addressed this issue in a mandate calling for compulsory nutrition labeling of prepared foods at the point of sale. In response to this effort, conservatives in Congress introduced the “Common Sense Nutrition Disclosure Act” (CSNDA) which, if enacted, would have effectively eviscerated the menu labeling provisions mandated by the Affordable Care Act. The stated rationale behind this legislation: to protect small business and prevent job loss resulting from overly‐burdensome federal regulations. This article provides a historical look at the evolution of federally mandated menu labeling in the United States with particular emphasis on opposition to its passage. The position is taken such that this legislation is beneficial, warranted, and long overdue, and its opposition, as reflected in the CSNDA, points to the need for new metrics when evaluating public policy. (shrink)

Objectives—The development of predictive genetic tests provides a new area where consumers can gain knowledge of their health status and commercial opportunities. “Over-the-counter” or mail order genetic tests are most likely to provide information on carrier status or the risk of developing a multifactorial disease. The paper considers the social and ethical implications of individuals purchasing genetic tests and whether genetic information is different from other types of health information which individuals can obtain for themselves.Design—The (...) discussion is illustrated by findings from a questionnaire survey of university students as potential consumers. Topics covered included what health tests they had already used, expectations of genetic tests, willingness to pay, who should have access to the results and whether there need to be restrictions on such tests.Sample—Six hundred and fifteen first-year students in the universities of Leuven, Cardiff, Central Lancashire, Vienna and Nijmegen studying either medicine or a non-science subject.Results—Students were enthusiastic about genetic tests and had high expectations of their accuracy and usefulness but most thought they should be available through the health service and a minority thought that some tests, for example for sex selection, should not be available at all. There were few differences in responses by sex or subject of study but some by country. The paper also considers ethical and social issues outside the scope of a questionnaire survey of this type.Conclusion—To address some of these issues the sale of genetic tests to individuals can be made subject to ethical guidelines or codes of practice, for example to protect vulnerable groups, but there are fundamental social and ethical questions which such guidelines cannot address. (shrink)

Discussions surrounding patient engagement and empowerment often use the terms “patient” and “consumer” interchangeably. But do the two terms hold the same meaning, or is a “patient” a passive actor in the health care arena and a “consumer” an informed, rational decision-maker? Has there been a shift in our usage of the two terms that aligns with the increasing commercialization of health care in the U.S. or has the patient/consumer dynamic always been a part of (...) the buying and selling of health care in the American system? Recent discussions of the issue exist in the popular press and in social media forums such as TEDMED, but few direct analyses of the ethical, legal, and policy ramifications of this possible shift in terminology are available in the academic literature. This paper analyzes our usage of the terms and any recent changes in the dynamic and discusses the ethical, legal, and policy implications of this simple terminology for the physicianpatient relationship. (shrink)

Due to the rise of functional foods,the distinction between foods and medicines hasbecome increasingly blurred. A new EUregulation covering health claims and otherclaims on food and drink products is on thedocks. A basic motive of legal regulation oflabeling and advertising is to inform andprotect the consumer. Promotion of informedchoice and consumer protection may, however, beconflicting objectives. A further problemsprings from the fact that choice, likeconsent, is a propositional attitude andtherefore opaque. Thus it is extremelydifficult for regulators to (...) fasten onparticular formulations of claims. Despite theprofessed respect for the autonomy of theconsumer, paternalism is never far away andeasily enters in various guises. (shrink)

Objectives—The development of predictive genetic tests provides a new area where consumers can gain knowledge of their health status and commercial opportunities. “Over-the-counter” or mail order genetic tests are most likely to provide information on carrier status or the risk of developing a multifactorial disease. The paper considers the social and ethical implications of individuals purchasing genetic tests and whether genetic information is different from other types of health information which individuals can obtain for themselves.Design—The (...) discussion is illustrated by findings from a questionnaire survey of university students as potential consumers. Topics covered included what health tests they had already used, expectations of genetic tests, willingness to pay, who should have access to the results and whether there need to be restrictions on such tests.Sample—Six hundred and fifteen first-year students in the universities of Leuven, Cardiff, Central Lancashire, Vienna and Nijmegen studying either medicine or a non-science subject.Results—Students were enthusiastic about genetic tests and had high expectations of their accuracy and usefulness but most thought they should be available through the health service and a minority thought that some tests, for example for sex selection, should not be available at all. There were few differences in responses by sex or subject of study but some by country. The paper also considers ethical and social issues outside the scope of a questionnaire survey of this type.Conclusion—To address some of these issues the sale of genetic tests to individuals can be made subject to ethical guidelines or codes of practice, for example to protect vulnerable groups, but there are fundamental social and ethical questions which such guidelines cannot address. (shrink)

Promotion of prescription drugs may appear to be severely limited in some jurisdictions due to restrictions on direct-to-consumer advertising. However, in most jurisdictions, strategies exist to raise consumer awareness about prescription drugs, notably through the deployment of direct-to-consumer information campaigns that encourage patients to seek help for particular medical conditions. In Canada, DTCI is presented by industry and regulated by Health Canada as being purely informational activities, but their design and integration in broader promotional campaigns (...) raise very similar ethical concerns as those associated with DTCA. Specifically, DTCI can be an effective means of familiarizing the public with the scope and benefits of a particular prescription drug and so, like DTCA, can promote increased patient-consumer demand and thus a problematic rise in the prescribing and use of medications that may be neither the most appropriate nor the most cost-effective. Yet, with DTCI the industry is playing within the existing rules and regulations set by health regulators. To respond appropriately to this regulatory incoherence, we argue that DTCI should be regulated as a type of direct-to-consumer indirect advertising. Even if the case and specific regulations presented here are Canadian, the implications extend to every country that has a partial or total prohibition on DTCA. (shrink)

Decision-making regarding healthcare expenditure hinges heavily on an individual's health status and the certainty about the future. This study uses data on propensity of general health exam (GHE) spending to show that despite the debate on the necessity of GHE, its objective is clear—to obtain more information and certainty about one’s health so as to minimise future risks. Most studies on this topic, however, focus only on factors associated with GHE uptake and overlook the shifts in (...) behaviours and attitudes regarding different levels of cost. To fill the gap, this study analyses a dataset of 2068 subjects collected from Hanoi (Vietnam) and its vicinities using the baseline-category logit method. We evaluate the sensitivity of Vietnamese healthcare consumers against two groups of factors (demographic and socioeconomic-cognitive) regarding payment for periodic GHE, which is not covered by insurance. Our study shows that uninsured, married and employed individuals are less sensitive to cost than their counterparts because they value the information in reducing future health uncertainty. The empirical results challenge the objections to periodic health screening by highlighting its utility. The relevance of behavioural economics is further highlighted through a look at the bounded rationality of healthcare consumers and private insurance companies in using and providing the service, respectively. (shrink)

Purpose This paper explores and identifies customer-value-related sacrifices that consumers attach to interactive health/life insurance. This paper aims to increase understanding of why individual consumers are not willing to embrace behaviour-tracking-based insurance applications. Design/methodology/approach The authors analysed data from a qualitative survey of Finnish insurance consumers who were not keen on adopting interactive insurance products. Findings Developed through thematic analysis, the framework presented in this paper illustrates consumers’ value sacrifices on four dimensions: economic, functional, emotional and symbolic value. Research (...) limitations/implications The framework and insights emerging in the study hold several implications related to increased understanding of consumers’ perceptions of insurance and to developing interactive insurance services. In addition, this work provides a promising foundation and avenues for further considerations related to digital ethics in insurance. Originality/value To the best of the authors’ knowledge, this paper is the first piece applying a value sacrifice perspective in studying consumers’ unwillingness to adopt interactive insurance products. (shrink)

Mobile devices with health apps, direct-to-consumer genetic testing, crowd-sourced information, and other data sources have enabled research by new classes of researchers. Independent researchers, citizen scientists, patient-directed researchers, self-experimenters, and others are not covered by federal research regulations because they are not recipients of federal financial assistance or conducting research in anticipation of a submission to the FDA for approval of a new drug or medical device. This article addresses the difficult policy challenge of promoting the welfare (...) and interests of research participants, as well as the public, in the absence of regulatory requirements and without discouraging independent, innovative scientific inquiry. The article recommends a series of measures, including education, consultation, transparency, self-governance, and regulation to strike the appropriate balance. (shrink)

Many people who have reached the age of majority still qualify as financial dependents of their parents, and may be registered as dependents on their parents’ medical schemes. This poses a practical conundrum, because major persons enjoy complete autonomy over their bodies to choose healthcare services as they please, including informational determination. However, their sensitive health information may end up being disclosed in the accounts rendered to their parents, as main members of medical schemes, thereby breaching their informational (...) privacy, medical confidentiality and possibly also damaging personal relationships. On the other hand, medical schemes must ensure that they strictly manage the business of their hospitalisation to ensure that they can adhere to their contractual and legal medical insurance obligations. Both major but financially dependent patients and medical schemes have good legal grounds to defend their respective positions. In this article, we will analyse and clarify the applicable legal and ethical grounds by considering medical confidentiality, the Protection of Personal Information Act, the Consumer Protection Act and the Medical Schemes Act and rules. We shall conclude with recommendations to accommodate the interests of both parties. (shrink)

The promises of precision medicine are often heralded in the medical and lay literature, but routine integration of genomics in clinical practice is still limited. While the “last mile” infrastructure to bring genomics to the bedside has been demonstrated in some healthcare settings, a number of challenges remain — both in the receptivity of today's health system and in its technical and educational readiness to respond to this evolution in care. To improve the impact of genomics on health (...) and disease management, we will need to integrate both new knowledge and new care processes into existing workflows. This change will be onerous and time-consuming, but hopefully valuable to the provision of high quality, economically feasible care worldwide. (shrink)

The cost and quality of health care services can vary significantly, with high cost not necessarily indicating high quality. As consumers pay for a growing proportion of their care, they have an increased need for cost and quality information before they receive care, so they can plan and make informed decisions. Transparency tools can provide such information to consumers and others. This book examines information on cost and quality available to consumers from selected transparency tools; characteristics (...) of effective transparency tools; limitations, if any, in the effectiveness of CMS transparency tools; and CMS efforts to expand cost and quality information available through transparency tools. The book also examines how various factors affect the availability of health care price information for consumers; and the information selected public and private health care price transparency initiatives make available to consumers. (shrink)

Digital health includes applications for smartphones and smart speakers as well as more traditional ways to access health information electronically, such as through your health care provider's online web‐based patient portal. As the number of digital health offerings—such as smartphone health trackers and web‐based patient portals—grows, what benefit do ethics, or bioethics, perspectives bring to digital health product development? For starters, the field of bioethics is concerned about issues of social justice, including equitable (...) benefit and minimization and fair distribution of the burden of harms. Researchers who employ user‐centered design methods should consider what digital health applications and products would look like if issues like equity and accessibility were foregrounded throughout design and development. One group whose needs are often neglected in the design of digital health products is older adults. Many people anticipate that the digital divide among older adults will close as the current generation of tech‐savvy consumers ages up. But since technology is constantly evolving, this divide may be constantly recreated. As bioethics moves ever further into the technology era, I want it to be mindful of the creation of digital health care disparities. (shrink)

In many countries, including patients are legally entitled to request copies of their clinical notes. However, this process remains time-consuming and burdensome, and it remains unclear how much of the medical record must be made available. Online access to notes offers a way to overcome these challenges and in around 10 countries worldwide, via secure web-based portals, many patients are now able to read at least some of the narrative reports written by clinicians (‘open notes’). However, even in countries that (...) have implemented the practice many clinicians have resisted the idea remaining doubtful of the value of opening notes, and anticipating patients will be confused or anxious by what they read. Against this scepticism, a growing body of qualitative and quantitative research reveals that patients derive multiple benefits from reading their notes. We address the contrasting perceptions of this practice innovation, and claim that the divergent views of patients and clinicians can be explained as a case of epistemic injustice. Using a range of evidence, we argue that patients are vulnerable to (oftentimes, non-intentional) epistemic injustice. Nonetheless, we conclude that the marginalisation of patients’ access to their health information exemplifies a form of epistemic exclusion, one with practical and ethical consequences including for patient safety. (shrink)

Commercial genetic testing offered over the internet, known as direct-to-consumer genetic testing (DTC GT), currently is under ethical attack. A common critique aims at the limited validation of the tests as well as the risk of psycho-social stress or adaption of incorrect behavior by users triggered by misleading health information. Here, we examine in detail the specific role of advertising communication of DTC GT companies from a medical ethical perspective. Our argumentative analysis departs from the starting point (...) that DTC GT operates at the intersection of two different contexts: medicine on the one hand and the market on the other. Both fields differ strongly with regard to their standards of communication practices and the underlying normative assumptions regarding autonomy and responsibility. Following a short review of the ethical contexts of medical and commercial communication, we provide case examples for persuasive messages of DTC GT websites and briefly analyze their design with a multi-modal approach to illustrate some of their problematic implications. We observe three main aspects in DTC GT advertising communication: (1) the use of material suggesting medical professional legitimacy as a trust-establishing tool, (2) the suggestion of empowerment as a benefit of using DTC GT services and (3) the narrative of responsibility as a persuasive appeal to a moral self-conception. While strengthening and respecting the autonomy of a patient is the focus in medical communication, specifically genetic counselling, persuasive communication is the normal mode in marketing of consumer goods, presuming an autonomous, rational, independent consumer. This creates tension in the context of DTC GT regarding the expectation and normative assessment of communication strategies. Our analysis can even the ground for a better understanding of ethical problems associated with intersections of medical and commercial communication and point to perspectives of analysis of DTC GT advertising. (shrink)

As next‐generation genomic sequencing, including whole‐genome sequencing information, becomes more common in research, clinical, and public health contexts, there is a need for comprehensive communication strategies and education approaches to prepare patients and clinicians to manage this information and make informed decisions about its use, and nowhere is that imperative more pronounced than when genomic sequencing is applied to newborns. Unfortunately, in‐person counseling is unlikely to be applicable or cost‐effective when parents obtain genomic risk information directly (...) via the Internet. As a rule, communication strategies should match how people are accessing health information. Today, many people can obtain health information in a variety of settings, including through direct‐to‐consumer services, via websites, and through other digital channels or settings. In response to these changes, new communication strategies need to be considered. Adopting a comprehensive communication model means understanding the multiple levels of influence experienced by parents and the clinicians who serve them. In addition, applying communication‐science principles can help in addressing some key challenges to effectively communicating genomic information to parents. (shrink)

Background: Discussing direct-to-consumer advertising of prescription drugs during a visit could affect prescribing practices and provider–patient relationship. Research objectives: The study examines advanced practice nurse prescribers’ perceptions of direct-to-consumer advertising and its effects on nurse–patient relationship, prescriptive authority, and appropriateness of patient clinical requests. Research design: A cross-sectional survey design was implemented. Participants and research context: The random sample consisted of 316 nurses (27.17% response rate) in one of the Midwestern states in the United States. Pearson’s chi-square analysis (...) and multiple/multinomial logistic regression analyses were used. Ethical considerations: Permission to conduct the study was obtained from the university’s Institutional Review Board. Participation was voluntary, and measures were taken to protect the anonymity and confidentiality of consenting participants. Findings: Most nurses (69%) believed that patients were “poor or very poor” at assessing the relevance of drug advertisements, 61% reported that the increase in drugs advertisements directed at patient was “a bad or a very bad thing,” and only 16% thought the advertisements were accurate to “a very or to a great extent.” Improved nurse–patient relationship was associated with factors such as the patient not bringing printed material, seeking nurse’s opinion only, taking responsibility for their health, and not challenging nurse’s prescriptive authority. Discussion: Advertising discussion during a visit could improve as well as pose a challenge to a nurse–patient relationship and nurse’s prescriptive authority. Conclusion: The positives of discussing advertising information can be maximized and the negatives minimized through enhanced interpersonal nurse–patient communication. (shrink)

The growth in the direct-to-consumer genetic testing industry poses a number of challenges for healthcare practice, among a number of other areas of concern. Several companies providing this service send their customers reports including information variously referred to as genetic ethnicity, genetic heritage, biogeographic ancestry, and genetic ancestry. In this article, we argue that such information should not be used in healthcare consultations or to assess health risks. Far from representing a move toward personalized medicine, use (...) of this information poses risks both to patients as individuals and to racialized ethnic groups because of the way it misrepresents human genetic diversity. (shrink)

Information technology is considered a potentially transformative element in the field of health care by payers, providers, vendors, and consumers alike. Because of this transformative potential, health information technology adoption is viewed by many as a key component of health system reform. HIT is in its earliest stages, with diffusion of the technology still relatively limited; at the same time, there is growing awareness of its potential to affect the operation of the entire health (...) care system as a result of the vast amount of information that will become available to both health professionals and patients. (shrink)

To combat the OneHealth threat of antimicrobial resistance (AMR), the use of antibiotics in agriculture is subject to significant governance-led initiatives to change food system behaviours, including promoting more responsible use of antibiotics on farms through market-level interventions. To combat knowledge gaps about how consumers perceive risks associated with antibiotic use and AMR in farming, the current study carried out an in-depth qualitative focus group study incorporating a risk information exposure exercise with food consumers on the island of Ireland (...) (_n_ = 36). Using a theoretical lens of social representation theory, a thematic analysis of the collected data identified how participants made sense of, often new, information on agricultural antibiotic use and AMR. Participants displayed high awareness and concern for AMR but low understanding and misconceptions around AMR transmission from the agri-food sector. Social representations about antibiotics and food and farming systems shaped preferences for a movement away from antibiotics in farming, and in particular, prophylactic use. However, participants acknowledged the role of antibiotics to protect animal health and the integrity of the food supply chain. They debated the lack of a simple fix to antibiotics in the agri-food system and revealed preferences for preventive actions at farm level and supporting actions at market level. The study highlights the need to first tackle low levels of public understanding through effective risk communication including strategies such as targeted message framing and proactive, cross-sector OneHealth awareness campaigns, followed by the introduction of a trusted antibiotic use food labelling system. (shrink)

Tracking and goal setting are popular approaches in the personal health and fitness industry. In this paper we use a similar approach to assist users in their journey for a more sustainable lifestyle, starting with food. We employ Action Design Research (ADR) methodology to develop an application and subsequently propose design principles for developing blockchain-based applications for assisting users on their path to eating environmentally friendly food. The path to a sustainable lifestyle can be hard as individuals often do (...) not realize their personal impact towards achieving a net zero carbon future. To address this shortcoming, this study conducts an ADR experiment to create affordances for users to learn, create impact and realize that they are not alone in this journey thus motivating users to a sustainable lifestyle. The design principles that emerged from the project are design for categories and labels, design for measuring collective impact, and design for rewards and redemption. (shrink)

The development of electronic personal health records by independent vendors and national health systems is understood to empower patients and create a new kind of consumerism in healthcare. With more personal health information at hand, active participation in the management of health and rational purchasing of healthcare services will be possible. Healthcare systems will also be able to contain costs and achieve sustainability. Based on a careful examination of the literature, we argue that many of (...) the declared benefits of this technology are rather unattainable. As the boundaries between the public and private healthcare sectors become blurred and as employers struggle to reduce health insurance expenses, this proclaimed ‘consumer empowerment in healthcare’ is an attempt to introduce a technology and a business model for centralising all relevant PHI to render them economic. We reflect on the consequences for the ‘empowered’ user and we suggest that this new market device has to separate and individually address sufficiently issues of privacy, confidentiality and security before it can claim a place in the digital healthcare ecosystem. (shrink)

Arguments for and against direct-to-consumer drug advertising (DTCA) center on two issues: (1) the epistemic effects on patients through access to information provided by the ads; and (2) the effects of such information on patients’ abilities to make good choices in the healthcare marketplace. Advocates argue that DTCA provides useful information for patients as consumers, including information connecting symptoms to particular medical conditions, information about new drug therapies for those conditions. Opponents of DTCA point (...) out substantial omissions in information provided by the ads and argue that the framing of the ads may mislead patients about the indications, uses, and effectiveness of the drugs advertised. They also suggest that DTCA has a number of potentially negative effects on the doctor–patient relationship. The standard arguments appear to assume a simplistic correlation—more information means more agency for patients. However, empirical studies on medical decision making suggest that this relationship is much more complex and nuanced. I examine recent research on ways in which patients are vulnerable with respect to DTCA. In order to address the complex issues of information acquisition and consumer decision-making in the health care marketplace, the focus should not be simply on what information patients need in order to make medical decisions, but also on the conditions under which patients actually are able to make medical decisions requiring complex medication information. This requires examining both the cognitive limitations of patients with respect to drug information and investigating patients’ preferences and needs in a variety of medical contexts. (shrink)

Genetic testing is currently subject to little oversight, despite the significant ethical issues involved. Repeated recommendations for increased regulation of the genetic testing market have led to little progress in the policy arena. A 2005 Internet search identified 13 websites offering health-related genetic testing for direct purchase by the consumer. Further examination of these sites showed that overall, biotech companies are not providing enough information for consumers to make well-informed decisions; they are not consistently offering genetic counseling (...) services; and some sites even offer tests with little evidence of clinical value. This article aims to raise company and consumer awareness about the ethical concerns surrounding the direct-to-consumer marketing of health-related genetic tests. It also suggests ways that biotech companies can bring their services to the public in an ethically responsible manner, without increased regulatory oversight. (shrink)

Consumer-targeted sleep tracking applications (STA) that run on mobile devices (e.g., smartphones) promise to be useful tools for the individual user. Assisted by built-in and/or external sensors, these apps can analyze sleep data and generate assessment reports for the user on their sleep duration and quality. However, STA also raise ethical questions, for example, on the autonomy of the sleeping person, or potential effects on third parties. Nevertheless, a specific ethical analysis of the use of these technologies is still (...) missing so far. The aim of the current analysis is to identify the characteristics of sleep tracking apps and to explore the specific ethical aspects associated with this form of self-tracking. Firstly, the field of mobile health applications was screened for STA to explore their typical functions and target user groups. Secondly, an ethical analysis was conducted focusing on the three ethical dimensions: (1) medicalization, (2) vulnerability, and (3) relationality. The analysis indicates that these three normative dimensions are decisive for assessing STA and that the ethical profile of this technology varies greatly depending on the respective user group. As the three dimensions medicalization, vulnerability, and relationality play a distinguishing role in the use of STA, they should be especially addressed in responsible development and implementation of STA. In addition, the analysis helps to evaluate the use of STA, in terms of different risks for specific user groups, the sensitive contexts of usage, and potential interference with the intimacy of third parties. (shrink)