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Purpose – This chapter examines medical consumerism and the changing relations between patients as consumers and the medical system across two women's health contexts, breast cancer and infertility.

Methodology/approach – The analysis draws on two qualitative studies: The first explores the experiences of 60 breast cancer survivors through in-depth interviews and participant observation (Sulik, 2005), and the second uses in-depth interviews to analyze 18 women's experiences with infertility (Eich-Krohm, 2000).

Findings – The medical consumer is an individualized role that shifts attention away from the quality problem in health care and toward the quality of the person as a medical consumer who is characterized to be optimistic, proactive, rational, responsible, and informed.

Research limitations/implications – As medicine has become a form of mass consumption, the category of medical consumer has elevated the individual in medical decision-making. The shift from patient to medical consumer is an ongoing process that is grounded in a tension between medical control and individual agency, and is exacerbated by the intensity and incomprehensibility of modern medicine.

Practical implications – The proliferation of medical information and personal illness narratives through the Internet, advice books, and self-help groups have advanced lay knowledge about preventive medicine and medical treatment while simultaneously introducing new fears and anxiety about the multitude of options and outcomes.

Originality/value of chapter – This study contributes to our knowledge on medical consumerism and its impact on illness experience and the synthesis of lay and professional knowledge.

Purpose – The purpose of this chapter is to explore whether and how social tagging can be useful in an information web site for cancer patients and their relatives.

Methodology/approach – Three studies have been carried out in order to investigate the research questions. First, we reviewed and analyzed literature about cancer patients’ information needs and seeking behavior, and about social tagging and patient terminology. Second, we analyzed tags applied to blog postings at Blogomkraeft.dk, a blog site at the Danish information web site Cancer.dk. The tags were compared with the formal browsing structure of Cancer.dk. Results from the two studies were used to develop a prototype for social tagging at Cancer.dk. Thus third, we evaluated the prototype in a usability study.

Findings – We found that tags have the potential to describe and provide access to web site content from the users’ perspective and language use. Social tags may be a means to bridge between scientific viewpoints and terminology and everyday problems and vocabulary. Tags at Blogomkraeft.dk are mainly factual, often detailed, and do not cover as many functions as tags in more general bookmarking systems. An important finding is that some tags seemed to add to and supplement the content instead of factually describing the content of a blog posting. The usability test showed that our test persons liked the tagging feature.

Social implications – Tagging features give the public an opportunity to apply their own terms to documents, reflecting their own model of the current topic. Tags may furthermore function as colloquial lead-in terms from users’ search formulations at search engines such as Google to the domain-specific, tailored cancer web site.

Originality/value – Unlike most research on social tagging so far, we investigate tagging in a domain-specific setting, how tags can improve the interaction and communication between layman users and domain experts in an information web site within health care.

This chapter aims to provide an overview of the ethical framework and decision-making in clinical dementia research, and to analyze and discuss the ethical challenges and issues that can arise when conducting clinical dementia research.

Informed consent is the most scrutinized and controversial aspect of clinical research ethics. In clinical dementia research, assessing decision-making capacity may be challenging as the nature and progress of each disease influences decision-making capacity in diverse ways. Persons with dementia represent a vulnerable population deserving special attention when developing, implementing, and evaluating the informed consent process. In this chapter, particular attention will be given to vulnerability categories and how these influence decision-making capacity. Ethical frameworks with a pragmatic contour and implication are needed to protect vulnerable patients from potential harms and ensure their optimal participation in clinical dementia research.

In addition, this chapter analyses important ethical challenges and issues in clinical dementia research. If handled thoughtfully, they would not pose insuperable barriers to research. But if they are ignored, they could slow the research process, alienate potential study subjects and cause harm to research participants. Ethical considerations in research involving persons with dementia primarily concern the representation of the interests of the participants with dementia and protection of their vulnerabilities and rights.

A core set of ethical questions and recommendations are drawn to aid researchers, institutional review boards and potential research participants in the process of participating in clinical dementia research.

Encouraging patient involvement is a cornerstone of many healthcare interventions and decision-making models to ensure that treatment decisions reflect the needs, values, and desires of patients. Involved patients are thought to be empowered patients who feel a sense of efficacy in regards to their own health. However, there is a lack of understanding of how patients relate to empowerment and involvement and, most importantly, how these constructs relate to one another in patients’ decision-making experiences.

Through an inductive analysis, this chapter draws on qualitative interviews of women diagnosed with breast cancer prior to 40 years of age (n = 69).

By examining the intersection of how patients define their own involvement in treatment decisions and their sense of empowerment, we find four orientations to decision-making (Advocates, Bystanders, Co-Pilots, and Downplayers) with involvement and empowerment being coupled for some respondents, but decoupled for others.

Our findings suggest expanding what it means to be an “active” patient as respondents had multiple ways of characterizing involvement, including being informed or following their doctor’s advice. Our findings also suggest a more critical examination of the origins and potential downsides of patient empowerment as some respondents reported feeling overwhelmed or pushed into advocacy roles. The sample was disproportionately higher socioeconomic status with limited racial/ethnic diversity. Empowerment and involvement may be enacted differently for other social groups and other medical conditions.

By examining first-person patient narratives, we conclude that patients’ experience may not fully align with current academic or clinical discussions of patient involvement or empowerment.

Reusing existing data sets of health information for public health or medical research has much to recommend it. Much data repurposing in medical or public health research or practice involves information that has been stripped of individual identifiers but some does not. In some cases, there may have been consent to the reuse but in other cases consent may be absent and people may be entirely unaware of how the data about them are being used. Data sets are also being combined and may contain information with very different sources, consent histories, and individual identifiers. Much of the ethical and policy discussion about the permissibility of data reuse has centered on two questions: for identifiable data, the scope of the original consent and whether the reuse is permissible in light of that scope, and for de-identified data, whether there are unacceptable risks that the data will be reidentified in a manner that is harmful to any data subjects. Prioritizing these questions rests on a picture of the ethics of data use as primarily about respecting the choices of the data subject. We contend that this picture is mistaken; data repurposing, especially when data sets are combined, raises novel questions about the impacts of research on groups and their implications for individuals regarded as falling within these groups. These impacts suggest that the controversies about de-identification or reconsent for reuse are to some extent beside the point. Serious ethical questions are also raised by the inferences that may be drawn about individuals from the research and resulting risks of stigmatization. These risks may arise even when individuals were not part of the original data set being repurposed. Data reuse, repurposing, and recombination may have damaging effects on others not included within the original data sets. These issues of justice for individuals who might be regarded as indirect subjects of research are not even raised by approaches that consider only the implications for or agreement of the original data subject. This chapter argues that health information should be available for reuse, information should be available for use, but in a way that does not yield unexpected surprises, produce direct harm to individuals, or violate warranted trust.

Workplace voice is well-established and encompasses behaviors such as prosocial voice, informal complaints, grievance filing, and whistleblowing, and it focuses on interactions between the employee and supervisor or the employee and the organizational collective. In contrast, our chapter focuses on employee prosocial advocacy voice (PAV), which the authors define as prosocial voice behaviors aimed at preventing harm or promoting constructive changes by advocating on behalf of others. In the context of a healthcare organization, low quality and unsafe patient care are salient and objectionable states in which voice can motivate actions on behalf of the patient to improve information exchanges, governance, and outreach activities for safer outcomes. The authors draw from the theory and research on responsibility to intersect with theories on information processing, accountability, and stakeholders that operate through voice between the employee-patient, employee-coworker, and employee-profession, respectively, to propose a model of PAV in patient-centered healthcare. The authors complete the model by suggesting intervening influences and barriers to PAV that may affect patient-centered outcomes.