This paper addresses debates concerning the ‘participatory turn’ in healthcare. It focuses on the... more This paper addresses debates concerning the ‘participatory turn’ in healthcare. It focuses on the case of blood pressure self-monitoring, understanding this as a form of patient participation at the level of individual care. Drawing and expanding on the work of Marres and Wynne and their notions of material participation and of uninvited engagement, we examine how patients’ home blood pressure self-monitoring is incorporated into clinical care, how the materials of blood pressure self-monitoring mediate participation and how we might characterise the practices of participation found within everyday clinical care. Our analysis makes new conceptual links, suggesting that, in this context, invited participation appears to align with participation made easy, while uninvited participation involves more invested, more engaged participation. We offer two further developments of these concepts. First, we trouble characterisations of invited and uninvited participation as distinct and sep...
BackgroundHome self-monitoring of blood pressure is widely used in primary care to assist in the ... more BackgroundHome self-monitoring of blood pressure is widely used in primary care to assist in the diagnosis of hypertension, as well as to improve clinical outcomes and support adherence to medication. The National Institute for Health and Care Excellence (NICE) care pathways for hypertension recommend specific guidelines, although they lack detail on supporting patients to self-monitor.AimTo elicit primary care practitioners’ experiences of managing patients’ home blood pressure self-monitoring, across surgeries located in different socioeconomic areas.Design & settingA qualitative focus group study was conducted with a total of 21 primary care professionals.MethodParticipants were GPs and practice nurses (PNs), purposively recruited from surgeries in areas of low and high deprivation, according to the English indices of multiple deprivation. Six vignettes were developed featuring data from interviews with people who self-monitor and these were used in five focus groups. Results wer...
Apps, websites and networked devices now offer to help consumers produce, access and share health... more Apps, websites and networked devices now offer to help consumers produce, access and share health knowledge, precipitating social scientific concern over the consequences of these so-called digital health platforms. This paper makes a novel contribution to this literature, taking up a recent call from Plantin et al. to adopt an infrastructural lens in exploring platforms. It argues, through empirical analysis of digital health platforms of different sizes, ages and nationalities, that this conceptual tool is necessary to surface the work entailed in creating and sustaining digital health platforms. Additionally, we suggest that the social scientific literature on platformsand initial efforts to explore their infrastructural qualitiesfrequently focus too strongly on the dominant technology companies. Instead, we emphasise the value of drawing emergent companies' platforms into empirical purview through returning to some of the infrastructures literature that informs Plantin et al.particularly Susan Leigh Star and colleagues. We demonstrate empirically the importance of looking at standards as part of infrastructure building, and the broader set of interconnections between different actors and materials within an infrastructure. In doing so, we demonstrate the value of an infrastructural lens for understanding the density of interconnections that characterise digital health and propose some orientating questions for further enquiry into the infrastructural qualities of platforms.
In the time of coronavirus disease 2019 (COVID-19) there are numerous attempts to compare across ... more In the time of coronavirus disease 2019 (COVID-19) there are numerous attempts to compare across national boundaries and rank governments for their action against the virus. In this context the 'universal' ambition of the Wellcome Trust report on communicating antimicrobial resistance (AMR) is somewhat refreshing, and recalls some of the older ambition of the global health field. Though the report now feels some time ago-it was published in November 2019the pandemic does not mean AMR has gone away. Indeed, it may be worsened in the context of rescue prescribing, both for secondary infections following COVID-19 and other health conditions where antibiotics may stand in for scarce or compromised care. In this open letter we wish to respond to the Trust report-locating it in the field of social science work on AMR-and proposing some directions for further discussion. In particular, writing against the backdrop of the viral pandemic, we explore how both COVID-19 and AMR raise questions about our attachment to modern medicine, about the motivating value appeals to vulnerability and health inequality. We therefore call for the report and others to be the start of the further long-distance conversations and experimentation across different fields.
In this paper we explore the field of allergy as it appears on the Internet. Starting from a simp... more In this paper we explore the field of allergy as it appears on the Internet. Starting from a simple search, we draw attention to the ways in which allergy is created as both clinical condition and series of market opportunities. Where medical sociology has often been critical of commercial, especially pharmaceutical, involvement in health, and tended to celebrate the activities of patient organisations, we use discourse analysis to examine the similar strategies and messages from commercial and voluntary actors, and the ways in which sufferers are encouraged both to defer to medical expertise and also to take responsibility for finding their own ways to live with allergy in daily life. We suggest this creates difficulties for readers who are positioned as both patients and consumers through more or less awkward juxtapositions of advice and product placement in health markets that go well beyond pharmaceuticals, and suggest that these markets deserve more attention from medical socio...
This paper considers the uses and non-uses of a particular class of pharmaceutical - statins - dr... more This paper considers the uses and non-uses of a particular class of pharmaceutical - statins - drawing on UK fieldwork. These drugs to lower cholesterol have become widely available on prescription, but may not be accepted by patients. In medical sociology the non-use of medicines has been described through the lens of ‘resistance’, as a counter to medical concerns with adherence, yet these discussions have not referred to STS ideas about the uses and non-uses of technologies. We examine points of articulation and difference between these frameworks. In particular we consider the value of Wyatt’s (2003) taxonomy of non-users for our case. Our analysis draws attention to the potential transience of use and non-use over time and the social relations through which this might be mediated. In doing this, we suggest an analytical shift from the identity of actors as users or non-users to the practices of use and non-use.
The book relates to a seminar series ‘New Practices for NewPublics', which ran between Novemb... more The book relates to a seminar series ‘New Practices for NewPublics', which ran between November 2015 and October 2017 (see http://blogs.brighton.ac.uk/newpracticesfornewpublics/). Both the book and the seminars were funded by grant ES/N009398/1 from the Economic and Social Research Council.
This paper considers the uses and non-uses of a particular class of pharmaceutical - statins - dr... more This paper considers the uses and non-uses of a particular class of pharmaceutical - statins - drawing on UK fieldwork. These drugs to lower cholesterol have become widely available on prescription, but may not be accepted by patients. In medical sociology the non-use of medicines has been described through the lens of ‘resistance’, as a counter to medical concerns with adherence, yet these discussions have not referred to STS ideas about the uses and non-uses of technologies. We examine points of articulation and difference between these frameworks. In particular we consider the value of Wyatt’s (2003) taxonomy of non-users for our case. Our analysis draws attention to the potential transience of use and non-use over time and the social relations through which this might be mediated. In doing this, we suggest an analytical shift from the identity of actors as users or non-users to the practices of use and non-use.
Without microbes, no other forms of life would be possible. But what does it mean to be with micr... more Without microbes, no other forms of life would be possible. But what does it mean to be with microbes? In this book, 24 contributors attune to microbes and describe their multiple relationships with humans and others. Ethnographic explorations with fermented foods, waste, faecal matter, immunity, antimicrobial resistance, phages, as well as indigenous and scientific understandings of microbes challenge ideas of them being simple entities: not just pathogenic foes, old friends or good fermentation minions, but much more. Following various entanglements, the book tells how these relations transform both humans and microbes in the process.
Rosalind (2020) Negotiating the practical ethics of 'self-tracking' in intimate relationships: lo... more Rosalind (2020) Negotiating the practical ethics of 'self-tracking' in intimate relationships: looking for care in healthy living. Social Science & Medicine, 266. a113301.
Previous scholarship on novel foods, including functional foods, has suggested that they are diff... more Previous scholarship on novel foods, including functional foods, has suggested that they are difficult to categorise for both regulators and users. It is argued that they blur the boundary between 'food' and 'drug' and that uncertainties about the products create 'experimental' or 'restless' approaches to consumption. We investigate these uncertainties drawing on data about the use of functional foods containing phytosterols, which are licensed for sale in the EU for people wishing to reduce their cholesterol. We start from an interest in the products as material objects and their incorporation into everyday practices. We consider the scripts encoded in the physical form of the products through their regulation, production and packaging and find that these scripts shape but do not determine their use. The domestication of phytosterols involves bundling the products together with other objects (pills, supplements, foodstuffs). Considering their incorpo...
This paper offers a critical reflection on changes in cardiac surgical research based on empirica... more This paper offers a critical reflection on changes in cardiac surgical research based on empirical work on the development of implantable circulatory support devices over appropriately 20 years to the present. Trials of surgery and implantable devices have received relatively little attention from social science, but offer important comparisons with the pharmacological and organisational trials examined in the literature and in our own previous work. Drawing on journal commentary, trial reports, and policy documents, we focus on the emergence of more adaptive trial designs and the use of registries in the assessment of devices. These very different developments can be viewed as social experiments, shaping new relationships between physicians, manufacturers and regulators (or private and public actors) as well as more or less formal statements about what should count as evidence in the device field. Yet while such agreements increasingly included a public account of the ongoing and improvisational quality of surgical innovation around devices (allowing for patient populations, endpoints or devices themselves to be modified in a single study), they also obscured or bracketed other adaptations which remained informal and private (including changing methods of implantation and the space allowed for surgeons’ developing skills and preferences), which we describe with reference to ethnographic data on our case. We conclude with a reflection on the contemporary reach and meaning of the RCT as the dominant mode of knowledge production in medicine.
This paper is concerned with talk about and the practices of healthy living in relation to choles... more This paper is concerned with talk about and the practices of healthy living in relation to cholesterol reduction. It draws on qualitative interviews with 89 people who are current or former users of either cholesterol-lowering functional foods and/or statins for cardiovascular risk reduction. Focussing on data about everyday activities including food preparation, shopping and exercise, we illustrate four repertoires that feature in talk about cholesterol reduction (health; pleasure; sociality; pragmatism). Using Gilbert and Mulkay's (1984) notion of a 'reconciliation device', we suggest ways that apparently contradictory repertoires are combined, for example through talk about moderation, or kept apart. We suggest that in contrast to the interactiveness of the repertoires of health and pleasure, a pragmatic repertoire concerning food provisioning, storage and cooking as well as the realities of exercise, appears distinct from talk about health and is relatively inert. Finally we consider the implications of these discursive patterns for daily practices. Our data suggest little emphasis on 'coherence' in people's practices and illustrate the significance of temporal, spatial and social distribution in allowing people to pursue different priorities within their everyday lives. Rather than the calculated trade-offs of earlier medical sociology we draw on Mol (2002) to foreground the possibility of sustained multiplicity in daily practices.
including the URL of the record and the reason for the withdrawal request. Title: The drugs don't... more including the URL of the record and the reason for the withdrawal request. Title: The drugs don't sell: DIY heart health and the over-the-counter statin experience.
This paper considers how 'health behaviours' are imagined and practised in contemporary society, ... more This paper considers how 'health behaviours' are imagined and practised in contemporary society, considering the combination of commercial products such as over the counter (OTC) statins and functional foods with more established 'healthy behaviours' in everyday life. Using data from users of low dose statins licensed for OTC sale in the UK and functional foods, we consider policy fears that such products would dilute efforts at healthy living. In line with sociological literature, we encountered resistance to pill-taking and accounts of health behaviour that show this to be a complex category that may involve functional or mundane foods, and supplements, may be highly targeted at heart health, or more defuse goals, or involve a degree of vagueness as to what is being used and why. Thinking about these practices as a form of 'DIY' provides a useful supplement to sociological interest in lay rationality, drawing attention to the objects rather than knowledges enrolled, and the provisional nature of health practices.
This paper addresses debates concerning the ‘participatory turn’ in healthcare. It focuses on the... more This paper addresses debates concerning the ‘participatory turn’ in healthcare. It focuses on the case of blood pressure self-monitoring, understanding this as a form of patient participation at the level of individual care. Drawing and expanding on the work of Marres and Wynne and their notions of material participation and of uninvited engagement, we examine how patients’ home blood pressure self-monitoring is incorporated into clinical care, how the materials of blood pressure self-monitoring mediate participation and how we might characterise the practices of participation found within everyday clinical care. Our analysis makes new conceptual links, suggesting that, in this context, invited participation appears to align with participation made easy, while uninvited participation involves more invested, more engaged participation. We offer two further developments of these concepts. First, we trouble characterisations of invited and uninvited participation as distinct and sep...
BackgroundHome self-monitoring of blood pressure is widely used in primary care to assist in the ... more BackgroundHome self-monitoring of blood pressure is widely used in primary care to assist in the diagnosis of hypertension, as well as to improve clinical outcomes and support adherence to medication. The National Institute for Health and Care Excellence (NICE) care pathways for hypertension recommend specific guidelines, although they lack detail on supporting patients to self-monitor.AimTo elicit primary care practitioners’ experiences of managing patients’ home blood pressure self-monitoring, across surgeries located in different socioeconomic areas.Design & settingA qualitative focus group study was conducted with a total of 21 primary care professionals.MethodParticipants were GPs and practice nurses (PNs), purposively recruited from surgeries in areas of low and high deprivation, according to the English indices of multiple deprivation. Six vignettes were developed featuring data from interviews with people who self-monitor and these were used in five focus groups. Results wer...
Apps, websites and networked devices now offer to help consumers produce, access and share health... more Apps, websites and networked devices now offer to help consumers produce, access and share health knowledge, precipitating social scientific concern over the consequences of these so-called digital health platforms. This paper makes a novel contribution to this literature, taking up a recent call from Plantin et al. to adopt an infrastructural lens in exploring platforms. It argues, through empirical analysis of digital health platforms of different sizes, ages and nationalities, that this conceptual tool is necessary to surface the work entailed in creating and sustaining digital health platforms. Additionally, we suggest that the social scientific literature on platformsand initial efforts to explore their infrastructural qualitiesfrequently focus too strongly on the dominant technology companies. Instead, we emphasise the value of drawing emergent companies' platforms into empirical purview through returning to some of the infrastructures literature that informs Plantin et al.particularly Susan Leigh Star and colleagues. We demonstrate empirically the importance of looking at standards as part of infrastructure building, and the broader set of interconnections between different actors and materials within an infrastructure. In doing so, we demonstrate the value of an infrastructural lens for understanding the density of interconnections that characterise digital health and propose some orientating questions for further enquiry into the infrastructural qualities of platforms.
In the time of coronavirus disease 2019 (COVID-19) there are numerous attempts to compare across ... more In the time of coronavirus disease 2019 (COVID-19) there are numerous attempts to compare across national boundaries and rank governments for their action against the virus. In this context the 'universal' ambition of the Wellcome Trust report on communicating antimicrobial resistance (AMR) is somewhat refreshing, and recalls some of the older ambition of the global health field. Though the report now feels some time ago-it was published in November 2019the pandemic does not mean AMR has gone away. Indeed, it may be worsened in the context of rescue prescribing, both for secondary infections following COVID-19 and other health conditions where antibiotics may stand in for scarce or compromised care. In this open letter we wish to respond to the Trust report-locating it in the field of social science work on AMR-and proposing some directions for further discussion. In particular, writing against the backdrop of the viral pandemic, we explore how both COVID-19 and AMR raise questions about our attachment to modern medicine, about the motivating value appeals to vulnerability and health inequality. We therefore call for the report and others to be the start of the further long-distance conversations and experimentation across different fields.
In this paper we explore the field of allergy as it appears on the Internet. Starting from a simp... more In this paper we explore the field of allergy as it appears on the Internet. Starting from a simple search, we draw attention to the ways in which allergy is created as both clinical condition and series of market opportunities. Where medical sociology has often been critical of commercial, especially pharmaceutical, involvement in health, and tended to celebrate the activities of patient organisations, we use discourse analysis to examine the similar strategies and messages from commercial and voluntary actors, and the ways in which sufferers are encouraged both to defer to medical expertise and also to take responsibility for finding their own ways to live with allergy in daily life. We suggest this creates difficulties for readers who are positioned as both patients and consumers through more or less awkward juxtapositions of advice and product placement in health markets that go well beyond pharmaceuticals, and suggest that these markets deserve more attention from medical socio...
This paper considers the uses and non-uses of a particular class of pharmaceutical - statins - dr... more This paper considers the uses and non-uses of a particular class of pharmaceutical - statins - drawing on UK fieldwork. These drugs to lower cholesterol have become widely available on prescription, but may not be accepted by patients. In medical sociology the non-use of medicines has been described through the lens of ‘resistance’, as a counter to medical concerns with adherence, yet these discussions have not referred to STS ideas about the uses and non-uses of technologies. We examine points of articulation and difference between these frameworks. In particular we consider the value of Wyatt’s (2003) taxonomy of non-users for our case. Our analysis draws attention to the potential transience of use and non-use over time and the social relations through which this might be mediated. In doing this, we suggest an analytical shift from the identity of actors as users or non-users to the practices of use and non-use.
The book relates to a seminar series ‘New Practices for NewPublics', which ran between Novemb... more The book relates to a seminar series ‘New Practices for NewPublics', which ran between November 2015 and October 2017 (see http://blogs.brighton.ac.uk/newpracticesfornewpublics/). Both the book and the seminars were funded by grant ES/N009398/1 from the Economic and Social Research Council.
This paper considers the uses and non-uses of a particular class of pharmaceutical - statins - dr... more This paper considers the uses and non-uses of a particular class of pharmaceutical - statins - drawing on UK fieldwork. These drugs to lower cholesterol have become widely available on prescription, but may not be accepted by patients. In medical sociology the non-use of medicines has been described through the lens of ‘resistance’, as a counter to medical concerns with adherence, yet these discussions have not referred to STS ideas about the uses and non-uses of technologies. We examine points of articulation and difference between these frameworks. In particular we consider the value of Wyatt’s (2003) taxonomy of non-users for our case. Our analysis draws attention to the potential transience of use and non-use over time and the social relations through which this might be mediated. In doing this, we suggest an analytical shift from the identity of actors as users or non-users to the practices of use and non-use.
Without microbes, no other forms of life would be possible. But what does it mean to be with micr... more Without microbes, no other forms of life would be possible. But what does it mean to be with microbes? In this book, 24 contributors attune to microbes and describe their multiple relationships with humans and others. Ethnographic explorations with fermented foods, waste, faecal matter, immunity, antimicrobial resistance, phages, as well as indigenous and scientific understandings of microbes challenge ideas of them being simple entities: not just pathogenic foes, old friends or good fermentation minions, but much more. Following various entanglements, the book tells how these relations transform both humans and microbes in the process.
Rosalind (2020) Negotiating the practical ethics of 'self-tracking' in intimate relationships: lo... more Rosalind (2020) Negotiating the practical ethics of 'self-tracking' in intimate relationships: looking for care in healthy living. Social Science & Medicine, 266. a113301.
Previous scholarship on novel foods, including functional foods, has suggested that they are diff... more Previous scholarship on novel foods, including functional foods, has suggested that they are difficult to categorise for both regulators and users. It is argued that they blur the boundary between 'food' and 'drug' and that uncertainties about the products create 'experimental' or 'restless' approaches to consumption. We investigate these uncertainties drawing on data about the use of functional foods containing phytosterols, which are licensed for sale in the EU for people wishing to reduce their cholesterol. We start from an interest in the products as material objects and their incorporation into everyday practices. We consider the scripts encoded in the physical form of the products through their regulation, production and packaging and find that these scripts shape but do not determine their use. The domestication of phytosterols involves bundling the products together with other objects (pills, supplements, foodstuffs). Considering their incorpo...
This paper offers a critical reflection on changes in cardiac surgical research based on empirica... more This paper offers a critical reflection on changes in cardiac surgical research based on empirical work on the development of implantable circulatory support devices over appropriately 20 years to the present. Trials of surgery and implantable devices have received relatively little attention from social science, but offer important comparisons with the pharmacological and organisational trials examined in the literature and in our own previous work. Drawing on journal commentary, trial reports, and policy documents, we focus on the emergence of more adaptive trial designs and the use of registries in the assessment of devices. These very different developments can be viewed as social experiments, shaping new relationships between physicians, manufacturers and regulators (or private and public actors) as well as more or less formal statements about what should count as evidence in the device field. Yet while such agreements increasingly included a public account of the ongoing and improvisational quality of surgical innovation around devices (allowing for patient populations, endpoints or devices themselves to be modified in a single study), they also obscured or bracketed other adaptations which remained informal and private (including changing methods of implantation and the space allowed for surgeons’ developing skills and preferences), which we describe with reference to ethnographic data on our case. We conclude with a reflection on the contemporary reach and meaning of the RCT as the dominant mode of knowledge production in medicine.
This paper is concerned with talk about and the practices of healthy living in relation to choles... more This paper is concerned with talk about and the practices of healthy living in relation to cholesterol reduction. It draws on qualitative interviews with 89 people who are current or former users of either cholesterol-lowering functional foods and/or statins for cardiovascular risk reduction. Focussing on data about everyday activities including food preparation, shopping and exercise, we illustrate four repertoires that feature in talk about cholesterol reduction (health; pleasure; sociality; pragmatism). Using Gilbert and Mulkay's (1984) notion of a 'reconciliation device', we suggest ways that apparently contradictory repertoires are combined, for example through talk about moderation, or kept apart. We suggest that in contrast to the interactiveness of the repertoires of health and pleasure, a pragmatic repertoire concerning food provisioning, storage and cooking as well as the realities of exercise, appears distinct from talk about health and is relatively inert. Finally we consider the implications of these discursive patterns for daily practices. Our data suggest little emphasis on 'coherence' in people's practices and illustrate the significance of temporal, spatial and social distribution in allowing people to pursue different priorities within their everyday lives. Rather than the calculated trade-offs of earlier medical sociology we draw on Mol (2002) to foreground the possibility of sustained multiplicity in daily practices.
including the URL of the record and the reason for the withdrawal request. Title: The drugs don't... more including the URL of the record and the reason for the withdrawal request. Title: The drugs don't sell: DIY heart health and the over-the-counter statin experience.
This paper considers how 'health behaviours' are imagined and practised in contemporary society, ... more This paper considers how 'health behaviours' are imagined and practised in contemporary society, considering the combination of commercial products such as over the counter (OTC) statins and functional foods with more established 'healthy behaviours' in everyday life. Using data from users of low dose statins licensed for OTC sale in the UK and functional foods, we consider policy fears that such products would dilute efforts at healthy living. In line with sociological literature, we encountered resistance to pill-taking and accounts of health behaviour that show this to be a complex category that may involve functional or mundane foods, and supplements, may be highly targeted at heart health, or more defuse goals, or involve a degree of vagueness as to what is being used and why. Thinking about these practices as a form of 'DIY' provides a useful supplement to sociological interest in lay rationality, drawing attention to the objects rather than knowledges enrolled, and the provisional nature of health practices.
Clinical trials have become key technologies for decision making in the contemporary world. Their... more Clinical trials have become key technologies for decision making in the contemporary world. Their results shape medical practice and determine priorities across health care systems, but the work that goes into producing credible data is often hidden. Medical Proofs, Social Experiments draws upon detailed case studies to argue that to understand their value, we need to pay more attention to the contexts for these modern medical experiments, recovering the diverse ways in which they involve doctors, patients and the public, the local practices that contribute to their completion, and the complex negotiation of their results in professional and statutory institutions. Presenting research from the UK, USA, Sweden and The Netherlands, the ethnographic perspective adopted by the authors provides a space to explore the investments of different state, market, professional and other actors in particular forms of evaluation, and the ways in which trial methodologies may be re-designed or re-imagined to satisfy social and political expectations. As such, this volume will be of interest to those working in the fields of science and technology studies, the sociology and anthropology of medicine and researchers of policy and organisation in health care.
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Papers by Catherine Will