Publications
90 results found
Lound A, Bruton J, Jones K, et al., 2023, “I’d rather wait and see what’s around the corner”: A multi-perspective qualitative study of treatment escalation planning in frailty, PLoS One, ISSN: 1932-6203
Day S, Gleason K, Lury C, et al., 2023, 'In the picture': perspectives on living and working with cancer, Medical Humanities, Vol: 49, Pages: 83-92, ISSN: 1468-215X
We explored working and living with cancer at a large research-intensive National Health Service hospital breast cancer service and adjoining non-governmental organisation (NGO). The project had three elements that were largely autonomous in practice but conceptually integrated through a focus on personalised cancer medicine. Di Sherlock held conversations with staff and patients from which she produced a collection of poems, Written Portraits. At the same time, we conducted interviews and observation in the hospital, and hosted a public series of science cafés in the NGO. The trajectory of this project was not predetermined, but we found that the poetry residency provided a context for viewing participation in experimental cancer care and vice versa. Taking themes from the poetry practice, we show how they revealed categories of relevance to participants and illuminated others that circulated in the hospital and NGO. Reciprocally, turning to findings from long-term ethnographic research with patients, we show that their observations were not only representations but also tools for navigating life in waiting with cancer. The categories that we discovered and assembled about living and working with cancer do not readily combine into an encompassing picture, we argue, but instead provide alternating perspectives. Through analysis of different forms of research participation, we hope to contribute to an understanding of how categories are made, recognised and inhabited through situated comparisons. In personalised medicine, category-making is enabled if not dependent on increasingly intensive computation and so the practices seem far removed from mundane processes of interaction. Yet, we emphasise connections with everyday practices, in which people categorise themselves and others routinely according to what they like and resemble.
Day S, Lury C, Ward H, 2023, Personalization: a new political arithmetic?, DISTINKTION-JOURNAL OF SOCIAL THEORY, ISSN: 1600-910X
Day S, Lury C, Ward H, 2023, Introduction. Political arithmetic: old and new, Distinktion, Vol: 24, Pages: 157-166, ISSN: 1600-910X
The articles in this Special Issue arose from a workshop in June 2021 (https://peoplelikeyou.ac.uk/activities/people-like-you-a-new-political-arithmetic/) which considered whether we might understand the enormous variety of calculations we encounter today as a political arithmetic. Our proposal was that the term provides a powerful way to understand the political nature of calculations of economic and social value. In this introduction we showcase how contributors address the proposal in studies of personalisation, competitive test formats, algorithmic profiling, YouTube personalities and the significance of information as an increasingly important medium of ‘the social. We suggest that, together, these developments are transforming relations between the individual and society today in ways that both intensify inequalities and provide the basis for new forms of individual and collective identity.
Viney W, Day S, Bruton J, et al., 2022, Personalising clinical pathways in a London breast cancer service, Sociology of Health and Illness: a journal of medical sociology, Vol: 44, Pages: 624-640, ISSN: 0141-9889
Using interview and observational data from a busy and research-intensive breast cancer service in the United Kingdom, we discuss recent developments in personalised medicine. Specifically, we show how clinical and research practices meet in clinical pathways that are reconfigured in response to changing approaches of diagnosing, monitoring, treating and understanding cancers. Clinical pathways are increasingly sensitive to changes in evidence deduced through new technologies and therapies as well as decisions based on intensive, iterative analysis of data collected across a range of platforms. We contribute to existing research by showing how the organisation of clinical pathways both maintains established clinical practices and responds to new research evidence, managing a threshold between evidence-based and experimental medicine. Finally, we invite comparisons with other forms of personalisation to understand how they depend on the ‘real time’ collection, analysis and application of data.
Papageorgiou V, Bruton J, Petretti S, et al., 2021, Impact of COVID-19 on the HIV care continuum in the United Kingdom, 11th IAS Conference on HIV Science, Publisher: IAS
Ward H, Cooke G, Whitaker M, et al., 2021, REACT-2 Round 5: increasing prevalence of SARS-CoV-2 antibodies demonstrate impact of the second wave and of vaccine roll-out in England
BackgroundEngland has experienced high rates of SARS-CoV-2 infection during the COVID-19 pandemic, affecting in particular minority ethnic groups and more deprived communities. A vaccination programme began in England in December 2020, with priority given to administering thefirst dose to the largest number of older individuals, healthcare and care home workers.MethodsA cross-sectional community survey in England undertaken between 26 January and 8 February 2021 as the fifth round of the REal-time Assessment of Community Transmission-2 (REACT-2) programme. Participants completed questionnaires, including demographic details and clinical and COVID-19 vaccination histories, and self-administered a lateral flowimmunoassay (LFIA) test to detect IgG against SARS-CoV-2 spike protein. There were sufficient numbers of participants to analyse antibody positivity after 21 days from vaccination with the PfizerBioNTech but not the AstraZeneca/Oxford vaccine which was introduced slightly later.ResultsThe survey comprised 172,099 people, with valid IgG antibody results from 155,172. The overall prevalence of antibodies (weighted to be representative of the population of England and adjusted for test sensitivity and specificity) in England was 13.9% (95% CI 13.7, 14.1) overall, 37.9% (37.2, 38.7) in vaccinated and 9.8% (9.6, 10.0) in unvaccinated people.The prevalence of antibodies (weighted) in unvaccinated people was highest in London at 16.9% (16.3, 17.5), and higher in people of Black (22.4%, 20.8, 24.1) and Asian (20.0%, 19.0, 21.0) ethnicity compared to white (8.5%, 8.3, 8.7) people. The uptake of vaccination by age was highest in those aged 80 years or older (93.5%). Vaccine confidence was high with 92.0% (91.9, 92.1) of people saying that they had accepted or intended to accept the offer.Vaccine confidence varied by age and ethnicity, with lower confidence in young people and those of Black ethnicity. Particular concerns were identified around pregnancy, fertility and alle
Day S, Viney W, Bruton J, et al., 2021, Past-futures in experimental care: breast cancer and HIV medicine, New Genetics and Society, Vol: 40, Pages: 449-472, ISSN: 1463-6778
Cambrosio et al. (2018. “Extending Experimentation: Oncology’s Fading Boundary Between Research and Care.” New Genetics and Society 37 (3): 207–226) argue that “experimental care” in contemporary oncology involves the rapid merging of patient research and care, and invite further study into developments across other health conditions. We present a 2018–2019 study of experimental breast cancer care in an urban clinical setting in the light of two other studies in the same hospital group: in the same cancer service (2013–14) and, prompted by these earlier findings, an interview study in HIV services (2014–15). We found that patients and staff anticipated better outcomes by treating sub-types of breast cancer but they also hoped for a better one-size-fits-all approach, akin to the antiretroviral treatments introduced for HIV and explored in our interview study. We conclude that the promise of targeted treatment for sub-types of disease – variously described as experimental care, personalised, precision, stratified and sub-group medicine – is accompanied by hopes for a single, standard, effective approach.
Day S, 2021, What counts as rape?: Physical assault and broken contracts: contrasting views of rape among London sex workers, Sex and violence Issues: In representation and experience, Pages: 172-189, ISBN: 9780415268905
Rape is generally seen as a moral as well as a physical assault, particularly by feminist scholars advocating legal change. In order to understand ideas about rape, it is necessary first to elucidate distinctions between various sexual activities. The image of the broken contract in sex work throws light on general ideas about rape. This chapter focuses on an ethnography of sex work in London and describes how prostitutes operate the views of rape, which are associated with the different types of sexual activity. Prostitute women in London distinguish working sex from personal sexual relationships. While working sex involves contracts, prostitutes make use of the wider imagery of love, sexual desire and romance in describing their personal relationships. Outside work, prostitutes' ideas about rape are much closer to the dominant naturalism. When rape in a prostitute's private life is accommodated to work, this discourse provides, at once, a form of resistance and a defensive reaction to social stigma.
Luna Puerta L, Kendall W, Davies B, et al., 2020, The reported impact of public involvement in biobanks: a scoping review, Health Expectations, Vol: 23, ISSN: 1369-6513
BackgroundBiobanks increasingly employ public involvement and engagement strategies, though few studies have explored their impact. This review aims to (a) investigate how the impact of public involvement in biobanks is reported and conceptualized by study authors; in order to (b) suggest how the research community might re‐conceptualize the impact of public involvement in biobanks.MethodsA systematic literature search of three electronic databases and the INVOLVE Evidence Library in January 2019. Studies commenting on the impact of public involvement in a biobank were included, and a narrative review was conducted.Results and discussionForty‐one studies covering thirty‐one biobanks were included, with varying degrees of public involvement. Impact was categorized according to where it was seen: ‘the biobank’, ‘people involved’ and ‘the wider research community’. Most studies reported involvement in a ‘functional’ way, in relation to improved rates of participation in the biobank. Broader forms of impact were reported but were vaguely defined and measured. This review highlights a lack of clarity of purpose and varied researcher conceptualizations of involvement. We pose three areas for further research and consideration by biobank researchers and public involvement practitioners.ConclusionsFunctional approaches to public involvement in biobanking limit impact. This conceptualization of involvement emerges from an entrenched technical understanding that ignores its political nature, complicated by long‐standing disagreement about the values of public involvement. This study urges a re‐imagination of impact, re‐conceptualized as a two‐way learning process. More support will help researchers and members of the public to undergo such reflective exercises.
Rai T, Bruton P, Kall M, et al., 2019, Experience of primary care for people with HIV: a mixed-method analysis, British Journal of General Practice, Vol: 3, ISSN: 0960-1643
BackgroundAdvances in treatment have transformed HIV into a long-term condition (LTC), presenting freshchallenges for health services, HIV specialists and general practitioners (GPs).AimTo explore the experience of people living with HIV (PLHIV) regarding using their GPs.Design and settingA mixed-method analysis using data from two sources: a nationally-representative survey of PLHIVand a qualitative study with London-based PLHIV.MethodsUnivariate logistic regression for quantitative data and Framework analysis for qualitative data.ResultsThe survey had 4,422 participants; the qualitative study included 52 participants. In both studies, GPregistration and HIV status disclosure were high. Similar to general population trends, recent GP usewas associated with poor self-rated health status, co-morbidities, older age and lower socioeconomic status. Two-thirds reported a good experience with GPs; a lower proportion feltcomfortable asking HIV-related questions. Actual or perceived HIV stigma were consistentlyassociated with poor satisfaction. In the interviews, participants with additional LTCs valuedsensitive and consistent support from GPs. Some anticipated, and sometimes experienced, problems relating to HIV status, GPs’ limited experience and time to manage their complex needs. Sometimesthey took their own initiatives to facilitate coordination and communication. For PLHIV, a ‘good’ GPoffered continuity and took time to know and accept them without judgement.ConclusionWe suggest clarification of roles and provision of relevant support to build confidence in GPs andprimary care staff to care for PLHIV. As PLHIV population ages, there is a strong need to developtrusting patient/GP relationships and HIV-friendly GP practices.
Pristera P, Bruton J, Cooke G, et al., 2019, Perspectives on transmission, treatment and elimination of hepatitis C in HIV-positive MSM in London: a qualitative study, AIDS IMPACT 2019
Lury C, Day S, 2019, Algorithmic Personalization as a Mode of Individuation, Theory, Culture and Society, Vol: 36, Pages: 17-37, ISSN: 0263-2764
Recognizing that many of the modern categories with which we think about people and their activities were put in place through the use of numbers, we ask how numbering practices compose contemporary sociality. Focusing on particular forms of algorithmic personalization, we describe a pathway of a-typical individuation in which repeated and recursive tracking is used to create partial orders in which individuals are always more and less than one. Algorithmic personalization describes a mode of numbering that involves forms of de- and re- aggregating, in which a variety of contexts are continually included and excluded. This pathway of a-typical individuation is important, we suggest, to a variety of domains and, more broadly, to an understanding of contemporary economies of sharing where the politics of collectivities, ownership and use are being reconfigured as a default social.
Rai T, Bruton P, Day S, et al., 2018, From activism to secrecy: contemporary experiences of living with HIV in London in people diagnosed from 1986 to 2014, Health Expectations, Vol: 21, Pages: 1134-1141, ISSN: 1369-6513
Background:Successes in biomedicine have transformed HIV from a debilitating and frequently fatal infection to a chronic, manageable condition. Objective:To explore how the contemporary metanarrative of HIV as a chronic condition is understood by patients and how it varies depending on when they were diagnosed.Design:Qualitative interviews with fifty-two people living with HIV who were diagnosed during different phases in the history of the epidemic. Setting and participantsParticipants were recruited from two HIV clinics in London to include four “HIV generations”: generation 1 were those who had been diagnosed pre-1997 (pre-ART), generation 2 from 1997-2005 (complex ART), generation 3 from 2006-2012 (simpler ART) and generation 4 were diagnosed in the year before the study (2013-2014). Results: Participants in all HIV generations took their medication as prescribed, attended clinic appointments and were well-informed about their immunological biomarkers. While the pre-treatment generation had been engaged in community endeavours such as activism, public education and use of support groups, those more recently diagnosed had little experience of collective activities and their HIV was essentially a private matter, separate from their social identity. These strategies worked for some however those experiencing clinical or social problems related to HIV or wider issues often relied exclusively on their HIV clinic for wider support. Conclusion:The loss of public conversation around HIV, the imperative for patients to take on greater individual responsibility for HIV management and the streamlining of HIV services alongside reductions in ancillary support services may expose some people to suboptimal health outcomes.
Bruton PJ, Rai T, Day S, et al., 2018, Patient perspectives on the HIV continuum of care in London: a qualitative study of people diagnosed between 1986 and 2014, BMJ Open, Vol: 8, ISSN: 2044-6055
Objectives: To describe the experiences of the HIV treatment cascade of diagnosis, engagement with care and initiation of treatment, from the perspective of patients; we explored whether this differed according to the year of their diagnosis, for example whether they had experienced HIV care in the pre-treatment era.Design: Qualitative interview study with framework analysisSetting: Two large HIV adult outpatient clinics in central London. Participants: 52 HIV positive individuals, 41 men, 11 women, purposively sampled to include people who had been diagnosed at different stages in the history of the epidemic classified as four ‘generations’: pre-1996 (pre-ART), 1997 to 2005 (complex ARTs), 2006 to 2012 (simpler ARTs), 2013 onwards (recent diagnoses).Results: Some important differences were identified; for earlier generations, the visible illness and deaths from AIDS made it harder to engage with care following diagnosis. Subsequent decisions about starting treatment were deeply influenced by the fear of severe side-effects from early antiretroviral therapy (ART). However, despite improvements in ART and life expectancy over the epidemic we found a striking similarity across participants’ accounts of the key stages of the care continuum, regardless of when they were diagnosed. Diagnosis was a major traumatic life event for almost everyone, fear of testing positive or having low self-perceived risk affected the timing of testing and diagnosis, engaging with care was facilitated by a flexible approach from services/clinicians and initiating treatment was a major life decision. Conclusion: We found patients’ experiences are influenced by when they were diagnosed, with earliest cohorts facing substantial challenges. However, being diagnosed with HIV and starting treatment continue to be significant life-altering events even in the era of effective, simple treatments. Despite the advances of biomedical treatment services should continue to recogn
Day S, 2018, An experiment in story-telling: reassembling the house in Ladakh, SOCIAL ANTHROPOLOGY, Vol: 26, Pages: 88-102, ISSN: 0964-0282
Carsten J, Day S, Stafford C, 2018, Introduction: Reason and passion: the parallel worlds of ethnography and biography, SOCIAL ANTHROPOLOGY, Vol: 26, Pages: 5-14, ISSN: 0964-0282
Day S, Lury C, 2017, New technologies of the observer: #Bringback, visualization and disappearance, Theory, Culture and Society, Vol: 34, Pages: 51-74, ISSN: 0263-2764
This article explores two examples of non-visibility as a way of describing the specificity of contemporary surfaces of visualization. The two cases are the disappearance of Malaysia Airlines Flight 370, the scheduled passenger flight from Kuala Lumpur to Beijing, which lost contact with air traffic control on 8 March 2014 at 01: 20 MYT, and the 276 Nigerian girls who went ‘missing’ at about the same time. The analysis is developed through an exploration of these examples in terms of the patterning of vision produced in recursive relations, or relations of feedback with the environment. We argue that changes in the organization of this feedback, which we describe as ‘rendition’, equip contemporary observers with both the capacity to see ‘close up at a distance’ and the capacity to be situated adjacent, next to or ‘beside from above’.
Howarth AR, Day S, Greene L, et al., 2017, “They made me feel comfortable”: a comparison of methods to measure patient experience in a sexual health clinic, BMC Health Services Research, Vol: 17, ISSN: 1472-6963
BackgroundHigh quality sexual health services are needed to improve both individual and public health outcomes. This study set out to explore what is important to patients who visit a sexual health clinic, and examine their understanding of standard survey questions, in order to inform the collection and interpretation of patient experience data that are used to improve services.MethodsWe conducted a cross-sectional, qualitative study. In the first part of the interview, we used “discovery interviews” to explore patients’ experiences of attending a central London walk-in sexual health clinic. In the second part, we asked patients how they would respond to eight standard patient experience survey questions and to provide an explanation for each of their responses. We conducted a thematic analysis of the interview data.ResultsWe interviewed seventeen participants (nine women, eight men) of different ethnicities and backgrounds. All interviewees were positive about their experience. They described how staff had made them feel “comfortable”, and talked about how staff spent time, listened and did not rush them, despite being a very busy clinic.In response to the survey questions, fourteen patients rated their as care excellent or very good overall. However, survey questions were interpreted in different ways and were not always easily understood.ConclusionsThe open-ended “discovery interviews” provided new insights into aspects of care that were most valued or could improve. Standard patient experience questions provide a rating but little elucidation of the experiences that lie behind patients’ responses. They do not always measure aspects of care valued by patients or identify areas for improvement. They are not uniformly understood and necessarily collapse a wide range of experiences and views into categories that may seem inappropriate. Qualitative methods have a key role in measuring patient experience and involving p
Day S, Coombes RC, McGrath-Lone L, et al., 2016, Stratified, precision or personalised medicine? Cancer services in the “real world” of a London hospital, Sociology of Health & Illness, Vol: 39, Pages: 143-158, ISSN: 0141-9889
We conducted ethnographic research in collaboration with a large research-intensive London breast cancer service in 2013-14 so as to understand the practices and potential effects of stratified medicine. Stratified medicine is often seen as a synonym for both personalised and precision medicine but these three terms, we found, also related to distinct facets of treatment and care. Personalised medicine is the term adopted for the developing 2016 NHS England Strategy, in which breast cancer care is considered a prime example of improved biological precision and better patient outcomes. We asked how this biologically stratified medicine affected wider relations of care and treatment. We interviewed formally 33 patients and 23 of their carers, including healthcare workers; attended meetings associated with service improvements, medical decision-making, public engagement, and scientific developments as well as following patients through waiting rooms, clinical consultations and other settings. We found that the translation of new protocols based on biological research introduced further complications into an already-complex patient pathway. Combinations of new and historic forms of stratification had an impact on almost all patients, carers and staff, resulting in care that often felt less rather than more personal.
Bruton J, Norton C, Smyth N, et al., 2016, Nurse handover: patient and staff experiences, British Journal of Nursing, Vol: 25, Pages: 386-393, ISSN: 0966-0461
AIM AND OBJECTIVES: to understand the purpose, impact and experience of nurse handover from patient and staff perspectives. BACKGROUND: poor communication is increasingly recognised as a major factor in healthcare errors. Handover is a key risk point. Little consensus exists regarding the practice in nursing but the trend is towards bedside handover. Research on patient and staff experiences of handover is limited. DESIGN: a qualitative and observational study on two acute wards in a large urban hospital in the UK. METHODS: interviews conducted with patients and staff and observation of handovers, ward rounds and patient-staff interactions. RESULTS: diverse forms of nurse handover were found, used in combination: office based (whole nursing team), nurse in charge (NIC) to NIC, and bedside. Patients' and nurses' views concurred on the purpose of bedside handover-transference of information about the patient between two nurses-and about the medical ward round, which was seen as a discussion with the patient. Views diverged regarding the purpose and value of office handover. Bedside handover differed in style, content, and place of delivery, often driven by concerns regarding confidentiality and talking over patients, and there were varied views on the benefits of patient involvement in bedside handover. Nurses worked beyond their shift end to complete handover. Communication problems within the clinical team were identified by staff and patients. CONCLUSIONS: while it is important to agree the purpose of handover and develop appropriate structure, content and style, it need not be a uniform process in all clinical areas. Nurse training to deliver bedside handover and patient information on the purpose of handover and the patient's role would be beneficial.
Day S, Lury C, 2016, Biosensing: Tracking Persons, QUANTIFIED: BIOSENSING TECHNOLOGIES IN EVERYDAY LIFE, Editors: Nafus, Publisher: MIT PRESS, Pages: 43-66, ISBN: 978-0-262-52875-7
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Day S, 2016, Wolfenden 50: Revisiting State Policy and the Politics of Sex Work in the UK, Demanding Sex: Critical Reflections on the Regulation of Prostitution, Pages: 51-66, ISBN: 9780754671503
Day S, 2016, WAITING AND THE ARCHITECTURE OF CARE, LIVING AND DYING IN THE CONTEMPORARY WORLD: A COMPENDIUM, Editors: Das, Han, Publisher: UNIV CALIFORNIA PRESS, Pages: 167-184, ISBN: 978-0-520-27841-7
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Thom SAM, Ward H, Wood F, et al., 2015, Process evaluation of the impact and acceptability of a polypill for prevention of cardiovascular disease, BMJ Open, Vol: 9, ISSN: 2044-6055
Importance The Use of a Multidrug Pill In Reducing cardiovascular Events (UMPIRE) trial has shown improved adherence with the use of a polypill strategy when compared with usual medications for cardiovascular disease (CVD) prevention. To advance from efficacy to impact, we need a better understanding of why and how such a strategy might be deployed in complex health systems.Objective To understand, from the perspective of UMPIRE trial participants and professionals, how and why a polypill strategy improves adherence compared with usual care, why improvement is greater in some subgroups, and to explore the acceptability of a polypill strategy among trial participants and healthcare professionals.Design, setting and participants A preplanned process evaluation, based on qualitative interviews, was conducted with a subsample of 102 trial participants and 41 healthcare professionals at the end of the UMPIRE trial in India and Europe.Results Most patients contrasted the simplicity of the polypill with usual medications that they found complex and, for many in India, expensive. Patients with low baseline adherence struggled most with complex medication lists, and those without established disease described less motivation to adhere when compared with people who had already been diagnosed with CVD; people in the latter group had already undertaken self-directed measures to adhere to CVD preventive medicines prior to entering the trial. Taking medication was one of many adaptations described by patients; these included dietary changes, stopping smoking and maintaining exercise. Most patients liked the polypill strategy, although some participants and health professionals were concerned that it would provide less tailored therapy for individual needs.Conclusions Adherence to treatment lists with multiple medications is complex and influenced by several factors. Simplifying medication by using a once-daily polypill is one approach to CVD prevention that may enhance adherence.
Mc Grath-Lone L, Day S, Schoenborn C, et al., 2015, Exploring research participation among cancer patients: analysis of a national survey and an in-depth interview study., BMC Cancer, Vol: 15, ISSN: 1471-2407
BACKGROUND: Inequalities in cancer research participation are thought to exist with certain groups under-represented in research populations; however, much of the evidence is based on small-scale studies. The aim of this study was to explore data from in-depth interviews with cancer patients and a large national survey to investigate variation in who is asked to participate in research and who takes part. METHODS: Factors associated with research discussion and participation were explored in National Cancer Patient Experience Survey data using multivariate logistic regression and during in-depth interviews with 25 breast cancer patients. RESULTS: Survey data were available for 66,953 cancer patients; 30.4 % reported having discussions about, and 18.9 % took part in, research. Barriers to participation at staff, patient and trust level were evident; for example, staff were less likely to discuss research with older patients, Asian and black patients were less likely to take part and patients treated at specialist or teaching trusts had higher levels of discussion and participation. Interviews showed that patients' willingness to participate changed over time and was not synonymous with participation as some were ineligible. CONCLUSION: Some patient groups were less likely to have discussions about or participate in research. Analysis of this variation vis-à-vis the composition of the patient population may be useful to ensure that there is equity regarding the potential benefits of research participation and that research findings are applicable to target populations in the translational model.
McGrath-Lone L, Ward H, Schoenborn C, et al., 2015, The effects of cancer research participation on patient experience: a mixed-methods analysis., European Journal of Cancer Care, Vol: 25, Pages: 1056-1064, ISSN: 1365-2354
Patient-reported benefits of research participation have been described by study participants; however, many studies have small sample sizes or are limited to patient groups with poor prognoses. The purpose of this study was to explore the effects of research participation on patient experience using survey responses from a large, national sample of cancer patients (N = 66 462) and interviews with breast cancer patients attending a London trust. Multivariate logistic regression was used to investigate associations between taking part in research and positive patient experience. Based on our analysis, patients who participated in research were more likely to rate their overall care and treatment as 'very good/excellent' (ORadj :1.64, 95%CI: 1.53-1.76, P < 0.001) and to describe positive patient experiences, such as better access to non-standard care, better interactions with staff and being treated as an individual. However, findings from our interviews indicated that there was no common understanding of what constitutes cancer research and no clear delineation between research participation and standard care, from the patient perspective. Further work to explore how participation positively influences patient experience would be useful to develop strategies to improve care and treatment for all patients regardless of whether or not they choose, or have the opportunity, to take part in research.
Bone A, Mc Grath-Lone L, Day S, 2014, BMJ Open 2014; 4:e004567., BMJ OPEN, Vol: 4, ISSN: 2044-6055
Day S, Ward H, 2014, Approaching health through the prism of stigma: Research in seven european countries, Sex Work, Mobility & Health, Pages: 139-159, ISBN: 9780710309426
Sophie Day and Helen Ward for the health research group in Europap 1 Introduction: The ‘prostitute’s’ body is inscribed as a site of disease and a source of contagion; these webs of signification affect the research and interventions designed as well as the interpretation of results. Yet, stereotypes about sex work also change and we describe shifts in the imagery since the 1980s, when an AIDS panic was projected on to sex workers who, it was feared, would infect everyone else. This fear was soon dispelled through a lack of corroborative evidence.
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