From waste product to blood, brains and narratives : developing a pluralist sociology of contributions to health research

Funded by National Institute for Health Research (NIHR) Oxford Biomedical Research CentrePeer reviewedPublisher PD

“About sixty per cent I want to do it” : Health researchers’ attitudes to, and experiences of, patient and public involvement (PPI)—A qualitative interview study

This research was funded through a personal fellowship awarded to Louise Locock by the NIHR Oxford Biomedical Research Centre. Anne‐Marie Boylan received support from the NIHR Collaboration for Leadership in Applied Research and Care Oxford. Sophie Staniszewska is part‐funded by the NIHR Collaboration for Leadership in Applied Research and Care West Midlands. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care. ACKNOWLEDGEMENTS We are grateful to the participants for sharing their experiences to inform this research. This research was supported by a panel comprising patients, members of the public, AND health, clinical and medical researchers. We are grateful for their support.Peer reviewedPublisher PD

Turning the gaze:Digital patient feedback and the silent pathology of the NHS

Online review and rating sites, where patients can leave feedback on their experience of the health-care encounter, are becoming an increasing feature of primary care in the NHS. Previous research has analysed how digital surveillance is re-shaping the clinical gaze, as health-care professionals are subject to increased public monitoring. Here, we draw on an empirical study of 41 GP practice staff to show how the gaze is turning, not simply from the patient to the health-care provider, but additionally to the body politic of the NHS. Drawing on focus group and interview data conducted in five UK practices, we show how discourses of online reviews and ratings are producing new professional subjectivities among health-care professionals and the extent to which the gaze extends not only to individual health-care interactions but to the health-care service writ large. We identify three counter-discourses characterising the evolving ways in which online reviews and ratings are creating new subjects in primary care practices: victimhood, prosumption versus traditional values and taking control. We show how the ways in which staff speak about online feedback are patterned by the social environment in which they work and the constraints of the NHS they encounter on a day-to-day basis

Email consultations between patients and doctors in primary care: a content analysis

Background: Increasingly consultations in healthcare settings are carried out remotely, using a range of communications technologies. Email allows for a two-way text based communication, occurring asynchronously. Studies have explored the content and nature of email consultations as a way to understand the use, structure and function of email consultation. The majority of previous content analyses of email consultation in primary care settings have been conducted in North America and these have shown that concerns and assumptions about how email consultation might work have not been realised. There has not been a United Kingdom (UK) based content analysis of email consultations. Objectives: To explore and delineate content of consultations conducted via email in English general practice, by conducting a content analysis of email consultations between General Practitioners (GPs) and patients. Methods: We conducted a content analysis of anonymised email consultations between GPs and patients in two general practices in the United Kingdom. We examined the descriptive elements of the correspondence to ascertain when emails were sent, how many emails were in an email consultation and the nature of the content. We used a normative approach to analyse the content of email consultations to explore the use of and function of email consultation. Results: We obtained 100 email consultations from 85 patients, this totalled 262 individual emails. The majority of email users were aged over 40 and over half of users were male. Email consultations were mostly short and completed in a few days. Emails were mostly sent and received during the day. Emails were mostly clinical in content rather than administrative and covered a wide range of clinical presentations. There were three key themes to the use and function of the email consultations; the role of the GP and email consultation, the transactional nature of an email consultation and the operationalisation of email consultation. Conclusions: Where email is used to have a consultation with a patient in general practice in the majority of cases the consultation is short, clinical in nature and resolved quickly. GPs approach email consultation using similar key elements of the face-to-face consultation, however, using email consultation has the potential to alter the role of the GP, leading them to engage in more administrative tasks than usual. Email consultation was not a replacement for a face-to-face consultation

Cognitive and behavioural strategies for self-directed weight loss:systematic review of qualitative studies

Aim We conducted a systematic review of qualitative studies to examine the strategies people employ as part of self-directed weight loss attempts, map these to an existing behaviour change taxonomy, and explore attitudes and beliefs surrounding these strategies. Methods Seven electronic databases were searched in December 2015 for qualitative studies in overweight and obese adults attempting to lose weight through behaviour change. We were interested in strategies used by participants in self-directed efforts to lose weight. Two reviewers extracted data from included studies. Thematic and narrative synthesis techniques were used. Results 31 studies, representing over 1,000 participants, were included. Quality of the included studies was mixed. The most commonly covered types of strategies were restrictions, self-monitoring, scheduling, professional support and weight management aids. With the exception of scheduling, for which participant experiences were predominantly positive, participants’ attitudes and beliefs surrounding implementation of these groups of strategies were mixed. Two new groups of strategies were added to the existing taxonomy: reframing and self-experimentation. Conclusions This review demonstrates that at present, interventions targeting individuals engaged in self-management of weight do not necessarily reflect lived experiences of self-directed weight loss.</p

Broadening diversity through creative involvement to identify research priorities

Background Patient and public involvement (PPI) can help with steering and shaping research prioritisation and execution. However, some groups of people may not be encouraged to take part and their voices may be seldom listened to in the production of research. This is important to consider because they may have poorer healthcare experiences. We tried using art as a vehicle for including individuals not necessarily invited to be part of research priority setting. Methods We contacted existing groups and organisations to reach people not routinely supported to be part of PPI. We targeted individuals: a) with dementia, b) with a mental and physical health condition, c) of South Asian heritage. We ran a workshop with each group at which individuals shared their experiences of healthcare. A young amateur artist also attended, who produced a piece of artwork afterwards that reflected the research priorities raised. We held a Twitter chat to discuss these pieces of art and the processes involved in their generation. Results From each workshop, we produced a list of research priorities. These included: a) improving coordination of care for people with dementia, b) information needs and anxiety/guilt around accessing care for people with physical and mental health conditions, c) supporting discussion of women’s health issues in South Asian communities. These priorities were reflected in three pieces of art, which can be viewed online. Feedback from those at workshops suggested that the artwork helped them to feel that their voice had been heard and triggered their interest in how research is developed. Those involved in the Twitter chat commented that art was one means through which researchers could connect with a range of groups in a PPI context when preparing and producing a study. Conclusions We found the medium of art to be an effective way of including a range of people in research prioritisation setting. This approach could be useful for future PPI, building on what we have learnt from the project described in this paper

Implementing advance care planning in heart failure : a qualitative study of primary healthcare professionals

Background: Advance care planning (ACP) can improve the quality of life of patients suffering from heart failure (HF). However, primary care healthcare professionals (HCPs) find ACP difficult to engage with and patient care remains suboptimal. Aim: To explore the views of primary care HCPs on how to improve their engagement with ACP in heart failure. Design and Setting: A qualitative interview study with GPs and primary care nurses in England. Method: Semi-structured interviews were conducted with a purposive sample of 24 primary HCPs. Data were analysed using reflexive thematic analysis. Results: Three main themes were constructed from the data: ACP as integral to holistic care in HF; potentially limiting factors to the doctor-patient relationship; approaches to improve professional performance. Many HCPs saw the benefits of ACP as synonymous with providing holistic care and improving patients’ quality of life. However, some feared that initiating ACP could irrevocably damage their doctor-patient relationship. Their own fear of death and dying, a lack of disease specific communication skills and uncertainty about the right timing were significant barriers to ACP. To optimise their engagement with ACP in HF, HCPs recommended better clinician-patient dialogue through question prompts, enhanced shared decision-making approaches, synchronising ACP across medical specialities, and disease specific training. Conclusion: GPs and primary care nurses are vital to deliver ACP for patients suffering from HF. HCPs highlighted important areas to improve their practice and the urgent need for investigations into better clinician-patient engagement with ACP

Does cranberry extract reduce antibiotic use for symptoms of acute uncomplicated urinary tract infections (CUTI)?:Protocol for a feasibility study

Background: Consultations in primary care for symptoms of urinary tract infections (UTIs) are common and patients are frequently treated with antibiotics. Given increasing antimicrobial resistance, there has been interest in non-antibiotic treatment options for common infections. One such option is the use of cranberry extract to treat symptoms attributable to UTIs. Methods: A target of 45 women consulting in primary care, with symptoms suggestive of an uncomplicated UTI for whom the practitioner would normally prescribe antibiotics, will be randomised to receive one of three treatment approaches: (1) immediate prescription for antibiotics; (2) immediate prescription for antibiotics plus a 7-day course of cranberry capsules and (3) cranberry capsules plus a delayed prescription for antibiotics to be used in case their symptoms do not get better, or get worse. Follow-up will be by daily rating of symptoms and recording of treatments used for 2 weeks in an online symptom diary. Interviews will be conducted with around 10-15 study participants, as well as with around 10-15 women who have experienced a UTI but have not been approached to take part in the study. Both groups will be asked about their experience of having a UTI, their thoughts on non-antibiotic treatments for UTIs and their thoughts on, or experience of, the feasibility trial. The primary objective is to assess the feasibility of undertaking a full trial in primary care of the effectiveness of cranberry extract to reduce antibiotic use for symptoms of acute uncomplicated UTI. The secondary objective is to conduct a preliminary assessment of the extent to which cranberry might reduce antibiotic use and symptom burden. Discussion: This feasibility study with embedded interviews will inform the planning and sample size calculation of an adequately powered trial to definitively determine whether cranberry helps to alleviate the symptoms of acute uncomplicated UTIs in women and whether it can safely reduce antibiotic use. Trial registration: ISRCTN registry, ID: 10399299. Registered on 24 January 2019.</p

Supporting social prescribing in primary care by linking people to local assets: A realist review

© 2020 The Author(s). Background: Social prescribing is a way of addressing the 'non-medical' needs (e.g. loneliness, debt, housing problems) that can affect people's health and well-being. Connector schemes (e.g. delivered by care navigators or link workers) have become a key component to social prescribing's delivery. Those in this role support patients by either (a) signposting them to relevant local assets (e.g. groups, organisations, charities, activities, events) or (b) taking time to assist them in identifying and prioritising their 'non-medical' needs and connecting them to relevant local assets. To understand how such connector schemes work, for whom, why and in what circumstances, we conducted a realist review. Method: A search of electronic databases was supplemented with Google alerts and reference checking to locate grey literature. In addition, we sent a Freedom of Information request to all Clinical Commissioning Groups in England to identify any further evaluations of social prescribing connector schemes. Included studies were from the UK and focused on connector schemes for adult patients (18+ years) related to primary care. Results: Our searches resulted in 118 included documents, from which data were extracted to produce context-mechanism-outcome configurations (CMOCs). These CMOCs underpinned our emerging programme theory that centred on the essential role of 'buy-in' and connections. This was refined further by turning to existing theories on (a) social capital and (b) patient activation. Conclusion: Our realist review highlights how connector roles, especially link workers, represent a vehicle for accruing social capital (e.g. trust, sense of belonging, practical support). We propose that this then gives patients the confidence, motivation, connections, knowledge and skills to manage their own well-being, thereby reducing their reliance on GPs. We also emphasise within the programme theory situations that could result in unintended consequences (e.g. increased demand on GPs)

You feel like you’ve been duped”. Is the current system for health professionals declaring potential conflicts of interest in the UK fit for purpose? A mixed methods study.

Objective To understand: if professionals, citizens and patients can locate UK healthcare professionals’ statements of declarations of interests, and what citizens understand by these. Design The study sample included two groups of participants in three phases. First, healthcare professionals working in the public domain (health professional participants, HPP) were invited to participate. Their conflicts and declarations of interest were searched for in publicly available data, which the HPP checked and confirmed as the ‘gold standard’. In the second phase, laypeople, other healthcare professionals and healthcare students were invited to complete three online tasks. The first task was a questionnaire about their own demographics. The second task was questions about doctors’ conflicts of interest in clinical vignette scenarios. The third task was a request for each participant to locate and describe the declarations of interest of one of the named healthcare professionals identified in the first phase, randomly assigned. At the end of this task, all lay participants were asked to indicate willingness to be interviewed at a later date. In the third phase, each lay respondent who was willing to be contacted was invited to a qualitative interview to obtain their views on the conflicts and declaration of interest they found and their meaning. Setting Online, based in the UK. Participants 13 public-facing health professionals, 379 participants (healthcare professionals, students and laypeople), 21 lay interviewees. Outcome measures (1) Participants’ level of trust in professionals with variable conflicts of interest, as expressed in vignettes, (2) participants’ ability to locate the declarations of interest of a given well-known healthcare professional and (3) laypeoples’ understanding of healthcare professionals declarations and conflicts of interest. Results In the first phase, 13 health professionals (HPP) participated and agreed on a ‘gold standard’ of their declarations. In the second phase, 379 citizens, patients, other healthcare professionals and students participated. Not all completed all aspects of the research. 85% of participants thought that knowing about professional declarations was definitely or probably important, but 76.8% were not confident they had found all relevant information after searching. As conflicts of interest increased in the vignettes, participants trusted doctors less. Least trust was associated with doctors who had not disclosed their conflicts of interest. 297 participants agreed to search for the HPP ‘gold standard’ declaration of interest, and 169 reported some data. Of those reporting any findings, 61 (36%) located a relevant link to some information deemed fit for purpose, and 5 (3%) participants found all the information contained in the ‘gold standard’. In the third phase, qualitative interviews with 21 participants highlighted the importance of transparency but raised serious concerns about how useful declarations were in their current format, and whether they could improve patient care. Unintended consequences, such as the burden for patients and professionals to use declarations were identified, with participants additionally expressing concerns about professional bias and a lack of insight over conflicts. Suggestions for improvements included better regulation and organisation, but also second opinions and independent advice where conflicts of interest were suspected. Conclusion Declarations of interest are important and conflicts of interest concern patients and professionals, particularly in regard to trust in decision-making. If declarations, as currently made, are intended to improve transparency, they do not achieve this, due to difficulties in locating and interpreting them. Unintended consequences may arise if transparency alone is assumed to provide management of conflicts. Increased trust resulting from transparency may be misplaced, given the evidence on the hazards associated with conflicts of interest. Clarity about the purposes of transparency is required. Future policies may be more successful if focused on reducing the potential for negative impacts of conflicts of interest, rather than relying on individuals to locate declarations and interpret them