Caring for care: Online feedback in the context of public healthcare services

Highlights

• Explores the relationship between online healthcare feedback and care improvement.

• Focuses on the perspective of people providing online feedback in the UK.

• Feedback framed as ‘care’ and ‘conversation’, rather than ‘choice’ and ‘voice’.

• Foregrounds the (potentially) anonymous and public dimensions of online feedback.

• Conceptualises online feedback as ‘caring for care’ in context of public healthcare.

Abstract

People increasingly provide feedback about healthcare services online. These practices have been lauded for enhancing patient power, choice and control, encouraging greater transparency and accountability, and contributing to healthcare service improvement. Online feedback has also been critiqued for being unrepresentative, spreading inaccurate information, undermining care relations, and jeopardising professional autonomy. Through a thematic analysis of 37 qualitative interviews, this paper explores the relationship between online feedback and care improvement as articulated by healthcare service users (patients and family members) who provided feedback across different online platforms and social media in the UK.

Online feedback was framed by interviewees as, ideally, a public and, in many cases, anonymous ‘conversation’ between service users and healthcare providers. These ‘conversations’ were thought of not merely as having the potential to bring about tangible improvements to healthcare, but as in themselves constituting an improvement in care. Vital to this was the premise that providing feedback was an enactment of care – care for other patients, certainly, but also care for healthcare as such and even for healthcare professionals. Ultimately, feedback was understood as an enactment of care for the National Health Service (NHS), as symbolically encompassing all of the above.

Putting these findings in dialogue with STS scholarship on care, we argue that, in this context, the provision of online feedback can be understood as a form of care that is, simultaneously, both directed at healthcare (in the round, including patients, professionals, services, organisations, and, of course, health itself) and part of healthcare. We conceptualise this as ‘caring for care’. This conceptualization moves beyond dominant framings of online feedback in terms of ‘choice’ and ‘voice’. It embeds online feedback within pre-existing healthcare systems, relations and moral commitments, foregrounds the mutuality of care relations, and draws attention to the affective labour of feedback practices.

Introduction

Over the past decade, the number of people who go online to rate, review and provide feedback about their healthcare experiences has been slowly and steadily growing (Gao et al., 2012; Greaves and Millett, 2012; Van Velthoven et al., 2018). This trend has been met with considerable concern from healthcare professionals, with fears expressed about accuracy and representativeness, as well as implications for care relations and professional (in particular medical) autonomy (McCartney, 2009; Patel et al., 2015; Samora et al., 2016; Menon, 2017; Atherton et al., 2019). At the same time, online feedback promises to enhance patient power, choice and control, encourage greater transparency and accountability, and contribute to healthcare service improvement in a cost effective manner (Greaves et al., 2012; van de Belt et al., 2015; Browne and Shaller, 2018).

Survey research indicates that 42 % of UK internet users (n = 1824) have read some form of healthcare-related feedback online, while only 8 % have provided feedback about their own experiences (Van Velthoven et al., 2018). This pattern is consistent with health-related social media use, where the number of people reading about healthcare experiences far outstrips those providing it (Mierlo, 2014). Thus, the feedback practices of a relatively small group has the potential to affect a much wider pool of patients, their family members and healthcare professionals.

A key concern expressed by healthcare professionals, especially doctors, is that online feedback is produced by an unrepresentative minority expressing extreme views and, as such, is of limited value for healthcare improvement (Atherton et al., 2019; Patel et al., 2015). However, rather than being dominated by disgruntled service users and complaints, much online healthcare-related feedback is positive (Kadry et al., 2011; Lagu et al., 2013; Emmert et al., 2014, 2015; Greaves et al., 2012; Menon, 2017; Liu et al., 2018; Powell et al., 2019). This tendency has remained consistent over time, across national healthcare systems, different medical specialists and feedback platforms (Boylan et al., 2019).

Despite their central importance to the online feedback landscape, little is known about how those providing feedback in different healthcare contexts understand their own practices (Boylan et al., 2019). Drawing on 37 qualitative interviews with people who read (n = 37) and/or wrote (n = 32) online feedback about their own or a family member's experiences of the National Health Service (NHS) in England (n = 34) and Scotland (n = 3), this paper analyses experiences of and motivations for providing online feedback. It focuses on how people who posted online feedback across different platforms in the UK understood the relationship between online feedback and care improvement.

The paper foregrounds four aspects of the relationship between online feedback and care improvement as articulated by interviewees. One, understandings of how online feedback might improve healthcare were premised on pre-existing embodied, emotive and, at times ambivalent, relationships with the NHS. Two, healthcare professionals and services were positioned as both subjects and beneficiaries of online feedback. Three, a major motivation for providing feedback was to improve care for other patients and their families, with whom interviewees felt a strong identification and communality. Fourth, interviewees wanted online feedback to, ideally, take the form of a two-way ‘conversation’ between service users and healthcare providers. Across all four, the public and anonymous nature of online feedback were foregrounded as crucial facilitators of care improvement.

In what follows, we put these findings in dialogue with Science and Technology Studies (STS) work on the ethics of care. Through our analysis we suggest online feedback be understood as a way healthcare service users (patients and their family members) enact care for other patients and their families, but also, significantly, for healthcare practitioners and services – what we conceptualise as ‘caring for care’. A key way interviewees hoped online feedback could facilitate this particular form of care is through publicly available (often anonymous) digitally mediated feedback ‘conversations’.

Most extant research and health policy has framed online feedback in terms of patient ‘choice’ or ‘voice’, or a conjoining of the two with capturing the patient ‘voice’ seen as a means of enhancing ‘choice’ (Adams, 2010; Powell et al., 2019). We argue that even when modelled on systems used by commercial enterprises, online healthcare feedback cannot be conceptualised as consumerist behaviour aimed at reinforcing patient choice; nor as a means of democratising the technocratic instrument of quality control through harnessing the patient's voice. Instead, we propose ‘care’ and ‘conversation’ as alternative framings for understanding online feedback practices in the context of public healthcare systems. This dual conceptualization foregrounds the mutuality of care relations and highlights the affective labour of feedback practices. Furthermore, it draws attention to two ways online feedback can improve care: first, through prompting tangible changes to healthcare services – online feedback for healthcare improvement; second, as a form of care improvement in its own right – feedback as healthcare improvement.

Much academic literature on online healthcare-related feedback has come from the US and Germany, but there is a growing body of work in different healthcare systems, including free at point of use systems like the NHS in the UK (Boylan et al., 2019). The link between feedback and patient-consumer choice is, unsurprisingly, a common theme in studies from countries with private healthcare systems, like the US, and in relation to elective procedures such as plastic surgery (Hanauer et al., 2014; Menon, 2017; Yaraghi et al., 2018). However, health policy in the UK (especially England) similarly positions online feedback (and digital technologies more generally) as both a key facilitator of patient choice and a tool for care improvement through harnessing the patient voice (Department of Health, 2012; Department of Health and Social Care, 2016, 2015).

The blurring of ‘choice’ and ‘voice’ in this manner is not limited to online feedback (Adams, 2010). It is characteristic of a wider healthcare landscape where discourses around the democratisation of healthcare and patient empowerment overlap with and mutually reinforce an emphasis on health consumerism and patient choice (Greener, 2008). Thus, the subject (usually but not exclusively the patient) addressed in public health discourse emerges simultaneously as ‘consumer’ and ‘citizen’, despite the different logics and styles represented by these archetypes (Mol, 2008).

Associating online feedback straightforwardly with the articulation of an emancipatory patient ‘voice’ is problematic for a number of reasons. The dramatic growth of people sharing health experiences (including feedback) online can play a role in patient empowerment. But, digital media is not a neutral conduit. It influences the forms health activism takes, contributing to an increased alignment with mainstream biomedicine and commercial enterprises (Petersen et al., 2019). Furthermore, concerns have been raised about the commodification of health experiences, the lack of transparency around surveillance, privacy and data ownership, and the potentially coercive and disciplinary effects of digital health technologies based on individualised notions of self-care (Lupton, 2012, 2014; Millington, 2014; Schüll, 2016; Petrakaki et al., 2021).

Framing online feedback as primarily a facilitator of patient ‘choice’ is similarly problematic. While ‘choice’ is widely endorsed as a value in healthcare, people's ability to enact healthcare choices is constrained and context dependent (Coulter, 2010; Powell and Boden, 2012; Fotaki, 2014). Type of healthcare service, the state of one's health, socio-economic status, education level, the attitude of medical professionals, geographic location and practical considerations such as transportation and family responsibilities, all influence one's ability to choose healthcare services and professionals (Damiani et al., 2005; Dent, 2006; Fotaki, 2013; Greener, 2003). A number of scholars have furthermore questioned the validity of foregrounding choice at the expense of other values in healthcare, such as ‘trust’ (Fotaki, 2014) and ‘care’ (Mol, 2008) – a critique we build on in relation to online feedback specifically.

In this paper we move beyond an emphasis on ‘choice’ and ‘voice’ in the context of online feedback, proposing ‘care’ and ‘conversation’ as alternative framings. Our approach is informed by STS scholarship that has interrogated the relationship between care and technology in contemporary healthcare (Mol, 2008; Mol et al., 2010; Roberts et al., 2012; Pols, 2015). This work foregrounds care as a set of sensibilities and a mode of engagement with phenomena rather than an a priori theoretical framework (Mol et al., 2010). It approaches its subject(s) as intrinsically relational, attending to the embodied experiences, emotions, tensions and moral commitments within care practices. In a departure from a more traditional feminist ethics of care, it treats technology as part of, rather than opposed to, care relations (Mol et al., 2010; Pols, 2015). A key contribution has been to draw attention to the different, often overlooked or invisible, forms of labour implicated in digitally mediated healthcare (Oudshoorn, 2011; Roberts et al., 2012). This includes research which proposes the moderation of online feedback be thought of as care work (Ziewitz, 2017; Petrakaki et al., 2021). We bring the aforementioned sensibilities and insights to bear on practices of providing online feedback, putting our empirical findings in dialogue with social scientific literature on technologically mediated care practices and online feedback specifically.