By Fadhila Mazanderani
As evidenced in documents and reviews such as “High Quality Care for All, Equity and Excellence: Liberating the NHS” and the NHS Institute for Innovation and Improvement’s Patient Experience Book, references to ‘the patient experience’ have become increasingly pervasive in healthcare policy in the UK. While a concern with how people experience health and illness has long been a topic of interest in Medical Sociology and Anthropology, the emergence of the patient experience alongside quality and safety as a key measure of healthcare services is a more recent phenomenon. Yet despite its increasing prominence, what counts as a patient experience and indeed how these experiences can and should be counted remains up for debate. This is reflected in the first section of the aforementioned Patient Experience Book, which asks ‘What is Experience?’
The answer: ‘Patient experience is what the process of receiving care feels like for your patients. Understanding patient experience can be achieved through a range of activities that capture direct feedback from patients, service users, carers and wider communities.’ Two words – ‘feels’ and ‘capture’ –are crucial for understanding the work being done by the notion of the patient experience in healthcare policy. First, it is about recognising that feelings, subjective experiences, emotions, and responses are a crucial part of healthcare. Second, it is about trying to find ways to capture and measure these experiences and perceptions in order to assess and ideally improve the quality of health services. Given that people’s experiences of healthcare have traditionally been overlooked in health policy in favour of more ‘objective’ measures such as clinically defined health outcomes, it is hard to imagine anyone objecting to this long-overdue recognition of their importance. The second half of the patient experience equation is, however, more problematic. For if the patient experience is a feeling, an emotion, something nebulous and hard to define, how can we capture, measure and quantify it?
Traditionally in Medical Sociology and Anthropology, the response to this has been that we can find ways to articulate, to give ‘voice’, to the patient experience, usually through narrative or other qualitative methods, but that it is by its very nature something that defies quantification. As such, the patient experience has typically been treated as a ‘subjective’ counterpart to ‘objective’ biomedical knowledge. In contrast, within health services and related research, a range of methods, techniques and devices, such as Patient Experience Trackers (PET), patient-reported outcome measures (PROMS), customer satisfaction surveys, and web-based patient feedback, have been developed to inform patient choice, health policy and clinical practice. The internet and other information technologies are playing an increasingly important role in this, enabling the large-scale collection and aggregation of different forms of experiential data. As methods and technologies for turning ‘subjective’ experiences, emotions, sensations, and thoughts into portable forms of knowledge are becoming ubiquitous in healthcare and other domains, it becomes increasingly important for social scientists to explore their history, assumptions and practical implications. However, while deconstructing ‘objectivity’ has a respected pedigree in social studies of science and related fields, far less attention has been paid to what Steve Shapin refers to as the ‘sciences of subjectivity’: how supposedly ‘subjective’ experiences are being turned into particular forms of knowledge and evidence.
The patient experience in healthcare research, policy and practice will be a key topic of discussion at the Experience as Evidence? conference that will take place in Oxford on the 13-14th October 2014. This event is co-organised by members of SKAPE (Fadhila Mazanderani) and SKAPE-Net (Malte Ziewitz) along with colleagues at the University of Oxford (Angela Martin, John Powell, Louise Locock, Steve Woolgar, Sue Ziebland). The event is made possible by the generous support of the Foundation for the Sociology of Health and Illness, the Wellcome Trust and by the National Institute for Health Research (NIHR) under its Programme Grants for Applied Research funding scheme (RP-PG-0608-10147).