The shifting politics of patient activism: From bio-sociality to bio-digital citizenship

Abstract

Digital media provide novel tools for patient activists from disease-and conditionspecific communities. While those with debilitating conditions or disabilities have long recognised the value of collective action for advancing their interests, digital media offer activists unparalleled opportunities to fulfil their goals. This article explores the shifting politics of 'activism' in the increasingly digitally mediated, commercialised context of healthcare, asking: what role have digital media played in the repertoire of activists' strategies? And, to what extent and how has the use of such media impacted the very concept of activism? Building on sociological ideas on emergent forms of 'biological citizenship' and drawing on findings from an analysis of available media, including television and print news reportage, online communications, published histories and campaign material and other information produced by activists in HIV/ AIDS and breast cancer communities, we argue that digital media have profoundly shaped how 'activism' is enacted, both the goals pursued and the strategies adopted, which serve to broadly align contemporary patient communities' interests with those of science and business. This alignment, which we characterise as 'bio-digital citizenship', has involved a fundamental reorientation of 'activism' from less of a struggle for rights to more of a striving to achieve a public profile and attract funding. We conclude by calling for a reconceptualisation of 'activism' to more adequately reflect the workings of power in the digital age, whereby the agency and hopes of citizens are central to the workings of political rule.

Patient disempowerment through the commercial access to digital health records

“…This use of the word consumer is increasingly deterministically linked to patients using HIT in order to have more in control of their health through access to their data (Ebeling, 2016). In this way, the patient-cum-consumer resembles what Rose and Novas (2004) describe as a biocitizen, where patients who are enmeshed in the larger biomedical economy are constituted as both consumers and commodities by biocapital, through access to their data via healthcare technologies, such as commercial wearable devices, commercial genetics testing, or digital health records (see also Lupton, 2015Lupton, , 2016Petersen et al, 2018;Rajan, 2006;Schüll, 2016).…”

Potential Benefits and Risks Resulting From the Introduction of Health Apps and Wearables Into the German Statutory Health Care System: Scoping Review

“…To set incentives for nonactive or chronically ill patients to adopt health apps or wearables, tangible rewards like bonus programs might be the most promising tool in the future because “money is one of the biggest motivators” [ 27 ]. Petersen et al [ 28 ] concluded that tracking health parameters and communication through internet platforms triggers more self-consciousness and leads to patient empowerment.…”

Social value creation through digital activism in an online health community

“…and (b) forms of digital activism (Bennett & Segerberg, 2012;George & Leidner, 2019;Petersen et al, 2018;Stewart & Schultze, 2019;Vicari & Cappai, 2016).…”

“…Second, the study indicates that social value is developed as individuals get involved in philanthropic, reciprocal and moral activity that enables them collectively to improve the healthcare of the wider community; what we define as digital health activism. Third, our article also contributes to recent IS calls to explore digital activism (George & Leidner, 2019;Petersen et al, 2018;Stewart & Schultze, 2019;Vicari & Cappai, 2016) by identifying how connectivity and collective practices act as mechanisms enabling social value creation (Bennett & Segerberg, 2012). Current IS studies (eg, George & Leidner, 2019) have mostly indicated that the connective affordances of technology work towards individualised forms of activism that lack any collective form.…”

“…We contribute to the limited studies in this area by eliciting the concept of digital health activism, an emergent concept in our analysis, which was found to play an enabling role in the generation of social value. Drawing on a sociological understanding of health activism (Brown et al, 2004; Caron‐Flinterman, Broerse, & Bunders, 2005; Epstein, 1995; Laverack, 2012; Saukko, 2018) and on recent calls to reimagine activism through the prism of digital technology (Bennett & Segerberg, 2012; George & Leidner, 2019; Petersen, Schermuly, & Anderson, 2018; Stewart & Schultze, 2019; Vicari & Cappai, 2016), we define digital health activism as a collective action and initiative that emerges in OHCs, intended to challenge and change existing health status quo by building capacity through knowledge sharing and dissemination. Our study is novel in that it explains how digital activism plays out in healthcare settings and how it can contribute to the creation of social value.…”