Using online patient feedback to improve NHS services : the INQUIRE multimethod study

Background Online customer feedback has become routine in many industries, but it has yet to be harnessed for service improvement in health care. Objectives To identify the current evidence on online patient feedback; to identify public and health professional attitudes and behaviour in relation to online patient feedback; to explore the experiences of patients in providing online feedback to the NHS; and to examine the practices and processes of online patient feedback within NHS trusts. Design A multimethod programme of five studies: (1) evidence synthesis and stakeholder consultation; (2) questionnaire survey of the public; (3) qualitative study of patients’ and carers’ experiences of creating and using online comment; (4) questionnaire surveys and a focus group of health-care professionals; and (5) ethnographic organisational case studies with four NHS secondary care provider organisations. Setting The UK. Methods We searched bibliographic databases and conducted hand-searches to January 2018. Synthesis was guided by themes arising from consultation with 15 stakeholders. We conducted a face-to-face survey of a representative sample of the UK population (n = 2036) and 37 purposively sampled qualitative semistructured interviews with people with experience of online feedback. We conducted online surveys of 1001 quota-sampled doctors and 749 nurses or midwives, and a focus group with five allied health professionals. We conducted ethnographic case studies at four NHS trusts, with a researcher spending 6–10 weeks at each site. Results Many people (42% of internet users in the general population) read online feedback from other patients. Fewer people (8%) write online feedback, but when they do one of their main reasons is to give praise. Most online feedback is positive in its tone and people describe caring about the NHS and wanting to help it (‘caring for care’). They also want their feedback to elicit a response as part of a conversation. Many professionals, especially doctors, are cautious about online feedback, believing it to be mainly critical and unrepresentative, and rarely encourage it. From a NHS trust perspective, online patient feedback is creating new forms of response-ability (organisations needing the infrastructure to address multiple channels and increasing amounts of online feedback) and responsivity (ensuring responses are swift and publicly visible). Limitations This work provides only a cross-sectional snapshot of a fast-emerging phenomenon. Questionnaire surveys can be limited by response bias. The quota sample of doctors and volunteer sample of nurses may not be representative. The ethnographic work was limited in its interrogation of differences between sites. Conclusions Providing and using online feedback are becoming more common for patients who are often motivated to give praise and to help the NHS improve, but health organisations and professionals are cautious and not fully prepared to use online feedback for service improvement. We identified several disconnections between patient motivations and staff and organisational perspectives, which will need to be resolved if NHS services are to engage with this source of constructive criticism and commentary from patient

Doing the self: an ethnographic analysis of the quantified self

'Wearables' and 'self-quantifying technologies' are becoming ever more popular and normalised in society as a means of 'knowing' the self. How are these technologies implicated in this endeavour? Using insights from a four year multi-sited ethnography of the 'Quantified Self', I explore how the self is 'done' in the context of using technologies that purport to quantify the self in some way. Drawing on Science and Technology Studies (STS) sensibilities, I conduct a four- pronged investigation into 'self-making' by drawing upon, and expanding, existing theories of agency and performativity, number, data-visualisation, and enactment. I find that self-quantifying technologies are productive in the doing of the self and are implicated in the process of making boundaries around that which comes to be known as the 'self' in a particular moment. The numbers and visualisations that result from practices of self-quantification enable a new way of 'seeing' the self, and provide a way of communicating this self with others. The self is thus not a pre-existing entity that simply requires these technologies as a means to 'know' it. Rather, the self is constantly being done with these technologies and within the surrounding practices of self-quantification. In order to highlight the different parts of this process, I proffer the term 'entractment'. This term explains how these different elements come together to culminate in the production of a momentarily constant self in a particular context. It is a way of simultaneously encapsulating the processes of intra-action, extra-action and enactment with/in a community. In sum, it captures the conclusion that, in the context of self-quantification, we must understand the self as a collective enactment, achieved, at least in part, through the use of self-quantifying technologies that produce numerical data which facilitate visualisations that are imperative to the doing of the self.</p

Doing the self: an ethnographic analysis of the quantified self

'Wearables' and 'self-quantifying technologies' are becoming ever more popular and normalised in society as a means of 'knowing' the self. How are these technologies implicated in this endeavour? Using insights from a four year multi-sited ethnography of the 'Quantified Self', I explore how the self is 'done' in the context of using technologies that purport to quantify the self in some way. Drawing on Science and Technology Studies (STS) sensibilities, I conduct a four- pronged investigation into 'self-making' by drawing upon, and expanding, existing theories of agency and performativity, number, data-visualisation, and enactment. I find that self-quantifying technologies are productive in the doing of the self and are implicated in the process of making boundaries around that which comes to be known as the 'self' in a particular moment. The numbers and visualisations that result from practices of self-quantification enable a new way of 'seeing' the self, and provide a way of communicating this self with others. The self is thus not a pre-existing entity that simply requires these technologies as a means to 'know' it. Rather, the self is constantly being done with these technologies and within the surrounding practices of self-quantification. In order to highlight the different parts of this process, I proffer the term 'entractment'. This term explains how these different elements come together to culminate in the production of a momentarily constant self in a particular context. It is a way of simultaneously encapsulating the processes of intra-action, extra-action and enactment with/in a community. In sum, it captures the conclusion that, in the context of self-quantification, we must understand the self as a collective enactment, achieved, at least in part, through the use of self-quantifying technologies that produce numerical data which facilitate visualisations that are imperative to the doing of the self.</p

Knowledge, evidence, expertise? The epistemics of experience in contemporary healthcare

This paper explores how personal experience acquires the status of knowledge and/or evidence in contemporary healthcare contexts that emphasise being both patient-centred and evidence-based. Drawing on a comparative analysis of three case studies ‐ self-help and mutual aid groups; online patient activism; and patient feedback in healthcare service delivery ‐ we foreground: a) the role that different technologies and temporalities play in how experience is turned (or fails to be turned) into knowledge or evidence; b) the role that experts-of-experience, in addition to the more frequently referenced experts-by-experience, play in mediating how, when and why experience is turned into an epistemic resource; and finally, c) how the need to be ‘evidence-based’ remains a persistent, yet at times productive, challenge to how patient and user experiences are incorporated in contemporary healthcare policy and practice. Throughout the paper, we argue that it is necessary to look at both democratic and epistemic imperatives for including patient and service users in healthcare services and policymaking based on their experience