In this paper we describe and analyse results from an empirical study designed to provide insight into factors facilitating and/or inhibiting the emergence of the much-heralded 'informed patient' and its sociological equivalent, the 'reflexive patient' or 'reflexive consumer'. In particular, we seek to examine the relationship between information and empowerment in a healthcare context and assess the significance of the Internet in mediating this relationship. The paper draws on data from interviews with 32 mid-life women concerned to know about HRT for the relief of menopausal symptoms. Having analysed these women's 'information practices', we conclude that constraints on the emergence of the informed patient identity exist within both patient and practitioner communities and within the space occupied by both in the medical encounter. In particular, in this paper we identify a tension caused by the emphasis on 'information for choice' in the informed patient discourse which itself obscures the potential conflict between lay and expert/ medical knowledges in the clinical encounter.

Background Studies suggest that there has been an increase in the use of the Internet by patients in many Western societies. However, despite the many texts available on health and the Internet, not much is known about how much patients actually use the Internet to look up health information in their daily lives. We know little about what meaning this activity has for their experience of health and illness, and for their relationship with health-care practitioners.Objective To explore patients' and practitioners' use of the Internet and to consider whether use of the Internet is changing relationships between patients and health-care practitioners.Method The study used qualitative interviews and observations of patient–practitioner interaction. Our purposive sample of 47 patients (32 women and 15 men) had all had contact with the health services for information/treatment in relation to hormone replacement therapy (HRT)/menopause and Viagra/erectile dysfunction. The setting for the research was in general practitioners' surgeries, specialist clinics and patients' homes in the United Kingdom. Participants reflected a wide range of socio-economic groups, but most were white and British born, which, given the ethnic make-up of the town in which we conducted the research, was not surprising. In addition to patients, we interviewed 10 health-care practitioners (4 consultant doctors, 3 GPs, 2 specialist nurses, and a psychologist) about their own health information seeking practices (HISPs) and those of their patients.Results Use of the Internet can increase patients' knowledge about their health conditions, although patients in our study were often too overwhelmed by the information available on the Internet to make an informed decision about their own care. Patients have a great deal of trust in their health-care practitioners. Health-care practitioners need to improve their own skills in Internet use. Hype around Internet use by patients appears to exceed the reality of Internet use.Conclusions Our qualitative study suggests that use of the Internet is contributing to subtle changes in the relationship between health-care practitioners and their patients, rather than effecting the dramatic transformation some people envisage for it.

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BackgroundDespite advances in testing and treatment, HIV incidence rates within European countries are at best stable or else increasing. mHealth technology has been advocated to increase quality and cost-effectiveness of health services while dealing with growing patient numbers. However, studies suggested that mHealth apps are rarely adopted and often considered to be of low quality by users. Only a few studies (conducted in the United States) have involved people living with HIV (PLWH) in the design of mHealth.ObjectiveThe goal of this study was to facilitate a co-design process among PLWH and clinicians across 5 clinical sites in the European Union to inform the development of an mHealth platform to be integrated into clinical care pathways. We aimed to (1) elicit experiences of living with HIV and of working in HIV care, (2) identify mHealth functionalities that are considered useful for HIV care, and (3) identify potential benefits as well as concerns about mHealth.MethodsBetween January and June 2016, 14 co-design workshops and 22 semistructured interviews were conducted, involving 97 PLWH and 63 clinicians. Data were analyzed thematically and iteratively, drawing on grounded theory techniques.ResultsFindings were established into 3 thematic clusters: (1) approaching the mHealth platform, (2) imagining the mHealth platform, and (3) anticipating the mHealth platform’s implications. Co-design participants approached the mHealth platform with pre-existing concerns arising from their experiences of receiving or providing care. PLWH particularly addressed issues of stigma and questioned how mHealth could enable them to manage their HIV. Clinicians problematized the compatibility of mHealth with existing information technology systems and questioned which patients should be targeted by mHealth. Imagining the potential of mHealth for HIV care, co-design participants suggested medical functionalities (accessing test results, managing medicines and appointments, and digital communication channels), social functionalities (peer support network, international travel, etc), and general features (security and privacy, credibility, language, etc). Co-design participants also anticipated potential implications of mHealth for self-management and the provision of care.ConclusionsOur approach to co-design enabled us to facilitate early engagement in the mHealth platform, enabling patient and clinician feedback to become embedded in the development process at a preprototype phase. Although the technologies in question were not yet present, understanding how users approach, imagine, and anticipate technology formed an important source of knowledge and proved highly significant within the technology design and development process.

Survey data confirms that health information is very popular with internet users yet relatively little qualitative social science research has been conducted about how people incorporate information from the internet into their everyday information practices. This article reports on an empirical study of the role of the internet in people's efforts to inform themselves about menopause and hormone replacement therapy (HRT) in the case of women, and erectile dysfunction and Viagra in the case of men. These experiences are used to interrogate the notion of the 'digital divide'. We develop the concept of access to incorporate not only physical connection and information literacy, but also gendered and generational social relations. We also develop Barkardjieva's concept of the 'warm expert' to draw attention to the different types of information that people need in order to make sense of generic medical information that is relevant to their own circumstances.

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In reaction to polarised views on the benefits or drawbacks of digital health, the notion of 'ambivalence' has recently been proposed as a means to grasp the nuances and complexities at play when digital technologies are embedded within practices of care. This article responds to this proposal by demonstrating how ambivalence can work as a reflexive approach to evaluate the potential implications of digital health. We first outline current theoretical advances in sociology and organisation science and define ambivalence as a relational and multidimensional concept that can increase reflexivity within innovation processes. We then introduce our empirical case and highlight how we engaged with the HIV community to facilitate a co-design space where 97 patients (across five European clinical sites: Antwerp, Barcelona, Brighton, Lisbon, Zagreb) were encouraged to lay out their approaches, imaginations and anticipations towards a prospective mHealth platform for HIV care. Our analysis shows how patients navigated ambivalence within three dimensions of digital health: quantification, connectivity and instantaneity. We provide examples of how potential tensions arising through remote access to quantified data, new connections with care providers or instant health alerts were distinctly approached alongside embodied conditions (e.g. undetectable viral load) and embedded socio-material environments (such as stigma or unemployment). We conclude that ambivalence can counterbalance fatalistic and optimistic accounts of technology and can support social scientists in taking-up their critical role within the configuration of digital health interventions.

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