The provider–patient relationship is typically regarded as an expert-to-novice relationship, and with good reason. Providers have extensive education and experience that have developed in them the competence to treat conditions better and with fewer harms than anyone else. However, some researchers argue that many patients with long-term conditions (LTCs), such as arthritis and chronic pain, have become “experts” at managing their LTC. Unfortunately, there is no generally agreed-upon conception of “patient expertise” or what it implies for the provider–patient relationship. I (...) review three prominent accounts of patient expertise and argue that all face serious objections. I contend, however, that a plausible account of patient expertise is available and that it provides a framework both for further empirical studies and for enhancing the provider–patient relationship. (shrink)

Science and technology studies concerned with the study of lay influence on the sciences usually analyze either the political or the normative epistemological consequences of lay interference. Here I frame the relation between patients, knowledge, and the sciences by opening up the question: How can we articulate the knowledge that patients develop and use in their daily lives and make it transferable and useful to others, or, `turn it into science’? Elsewhere, patient knowledge is analyzed either as essentially different from (...) or similar to medical knowledge. The category of experiential knowledge is vague and is used to encompass many types of experience, whereas the knowledge of the `expert patient’ may be assumed to have the shape of up-to-date medical information. This paper shows through a case study of people with severe lung disease that patient knowledge can be understood as a form of practical knowledge that patients use to translate medical and technical knowledge into something useful to their daily life with disease. Patients coordinate this with homegrown know-how and advice from fellow patients, weighing different values - of which `taking good care of one’s body’ is but one - that may conflict in a specific situation. These practices result in sets of techniques that may be made useful to others. The paper argues for two alternatives to state-of-the-art medical research to turn patient knowledge into science: ethnographies of knowledge practices and the collection and making accessible of techniques. (shrink)

Discussing the workings of technology in care as aesthetic rather than as ethical or epistemological interventions focusses on how technologies engage in and change relations between those involved. Such an aesthetic study opens up a repertoire to address values that are abundant in care, but are as yet hardly theorized. Kamphof studies the problem that sensor technology reveals things about the elderly patients without the patients being aware of this. I suggest improvement of these relations may be considered in aesthetic (...) terms, for instance by developing the affective quality of people’s technological relationships. (shrink)

The internet of things is increasingly spreading into the domain of medical and social care. Internet-enabled devices for monitoring and managing the health and well-being of users outside of traditional medical institutions have rapidly become common tools to support healthcare. Health-related internet of things (H-IoT) technologies increasingly play a key role in health management, for purposes including disease prevention, real-time tele-monitoring of patient’s functions, testing of treatments, fitness and well-being monitoring, medication dispensation, and health research data collection. H-IoT promises many (...) benefits for health and healthcare. However, it also raises a host of ethical problems stemming from the inherent risks of Internet enabled devices, the sensitivity of health-related data, and their impact on the delivery of healthcare. This paper maps the main ethical problems that have been identified by the relevant literature and identifies key themes in the on-going debate on ethical problems concerning H-IoT. (shrink)