Exploring the social, political and ethical underpinnings of portable devices for healthcare and lifestyle
PI: Dr Federica Lucivero
Co-applicant: Prof Barbara Prainsack
Funded by: People Programme (Marie Curie Actions) of the European Union’s Seventh Framework Programme (FP7/2007-2013) (Marie Curie Intra-European Fellowship)
Funding period: September 2014- September 2016
Award: EUR 221K
Mobile technologies have been making their entrance in the realm of healthcare and wellbeing. An increasing number of websites offer apps for smartphones and tablets and wearable gadgets that enable individuals to track their eating/sleeping/moving patterns, patients to collect their vital signs and manage their conditions and clinical professionals to share and integrate patients’ data and conduct screenings outside the clinics (thanks to add-on devices for their phones). American market analysts predict that high volumes of these products will be sold in the next few years (1,2), while European governments invest in the vision of integrating mobile innovation in healthcare systems (mHealth) with the hope of reducing costs and improving care provision(3–5). The mobility and portability of healthcare outside the walls of the clinics with the use of such technologies, however, entails several challenges: not only it creates technical, regulatory and administrative difficulties (6–8), but it also raises several ethical, social and political questions. Two aspects seem particularly crucial to understand the specificity of mHealth technologies (mHT): their portability outside traditional clinical spaces and their hybrid nature, being situated between medical devices and lifestyle gadgets. First, mHT help to move care into spaces beyond the clinic: homes, public spaces, digital spaces, and far away countries (as in the case of teleradiology, for example, where images are sent overseas to be diagnosed by physicians whose time “costs less” than in the U.S. or Europe). Such a relocation and reconfiguration of biomedical place and space destabilise current practices in healthcare and require to redefine clinical/care spaces and times, as well as roles, relationships and users’ identities. Second, whereas traditional medical monitoring devices like thermometers, glucose meters, or blood pressure meters, for example, are used within the context of medical care, new mHT, such as fitness and active health apps and sensors, are often marketed as consumer products outside of healthcare or clinical domains. Portable mHT are therefore ‘hybrids’ (or “monsters”(9)) in the sense that they sit between public, private, and digital spaces, autonomous and controlled practice, healthcare and lifestyle. These technologies challenge the normative distinction between ‘healthcare’ and ‘lifestyle’ that plays a role in our regulatory system; they thus require readjustments in our regulatory and ethical frameworks. By relocating healthcare outside the traditional spaces and blurring the distinction of lifestyle v. medical, mobile healthcare devices challenge some assumptions that are currently ingrained in our healthcare system, introduce new actors (such as app developers, app stores, and databases) and mobilize existing ones (such as those that assess the quality standards of these devices before their introduction in the market), contribute to a redistribution of roles and responsibilities among actors, potentially triggering conflicts among systems of values. Furthermore, mHT store much of healthy individuals and patients’ data in the Cloud, make it sharable with other users, separate the location of clinical data collection from the location of data interpretation, offer access to patients’ data to new professional figures: this portability of health data outside protected (physical or digital) environments raises several privacy and data protection issues. With these affordances, mHT heighten the need for societies to redefine public health policies, for technology developers to rethink their products, and for clinical professionals to reshape their practices. For these reasons, a socially responsible policy agenda, technology development and integration of mobile health devices requires an exploration of the ways in which the dimension of portability in medicine relate to our systems of values in (public) health. With the overall goal of offering a systematic ethical assessment of portable health technologies and their use in the clinic and beyond, this project comprises four main objectives: 1) to map technologies, regulations and discourses around mHT; 2) to explore moral, social and political values in the practices of use and technology design of mHT; 3) to assess these values against the background of current normative and conceptual descriptions in regulations; and 4) to set an agenda for regulation at the policy, technology and user level. Assessing how healthcare systems in Europe and beyond can integrate mobile devices in a socially, politically, and ethically robust manner requires, therefore, an answer to the questions of how these technologies interact with moral and social values that are inscribed in current healthcare systems and sociomedical practices, and to what extent (and under what conditions) public healthcare systems should embrace mobile devices. This project will address these descriptive and normative questions through a case study approach. Different case studies will be conducted to explore values in practices (objective 2). Cases will be selected among different types of mHTs: 1) Portable devices for medical professionals (clinical mHT): These devices are interesting because they change the clinical practice, the way knowledge is produced, in addition to the doctor-patient relationship. 2) Health apps and sensors for the management of chronic disease or specific conditions (medical mHT): mHT in this category are particularly interesting because they require patients to redefine their identities, spaces and relationships. 3) Mobile apps and wearable sensors to track health and fitness indicators (weight, diet, period, sleep rhythm monitoring) (fitness/active health MHT): These tracking devices address non-patients and fall into the regulatory category of consumer products rather than medical devices. This type of technology is commonly seen as lying in the domain of lifestyle but could potentially be employed for healthcare purposes. The project uses qualitative methods to explore the ethical and political dimensions of portability in healthcare and offer normative conclusions. (Funding reference: People Programme (Marie Curie Actions) of the European Union’s Seventh Framework Programme (FP7/2007-2013) under REA grant agreement n. PIEF-GA-2013-624872)
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