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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 on 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.

Aims We explored the experiences and motivations of participants and staff who took part in the TRED‐HF trial (Therapy withdrawal in REcovered Dilated cardiomyopathy). Methods and results We conducted a qualitative study, using semi‐structured interviews, with participants (n = 12) and the research team (n = 4) from the TRED‐HF trial. Interviews were carried out in 2019 and were audio‐recorded and transcribed. Data were managed using NVivo and analysed using framework analysis. A patient representative provided guidance on the interpretation of findings and presentation of themes to ensure these remained meaningful, and an accurate representation, to those living with dilated cardiomyopathy. Three key themes emerged from the data: (i) perception of health; (ii) experiences and relationships with healthcare services and researchers; and (iii) perception of risk. Study participants held differing perceptions of their health; some did not consider themselves to have a heart condition or disagreed with the medical term ‘heart failure’. Relationships between participants, research staff, and clinical management teams influenced participants' experiences and decision making during the trial, including following clinical advice. There were differences in participants' perceptions of risk and their decisions to take heart failure medication after the trial was completed. Although the original TRED‐HF trial did not provide the results many had hoped for, a strong motivator for taking part was the opportunity to withdraw medication in a safely monitored environment which had been previously considered by some participants before. Investigators acknowledged that the insights gained from the study can now be used to support evidence‐based conversations with patients. Conclusions For people whose dilated cardiomyopathy is in remission, decisions to continue, reduce, or stop their medication are influenced by perceptions of personal health, perceive risk and the important of work, employment, recreation, relationships, and long‐term plans. The unique relationship between patient and cardiologist provides opportunities to promote honest discussion about adherence to medication and personalized long‐term management.

HIV nursing has had, and will continue to have, a critical role in the treatment and care of people living with HIV (PLHIV). In the 1980s and 1990s, HIV was a devastating, stigmatised disease with no cure. In response to this crisis, HIV nurses transformed the fundamentals of care. This narrative examines how and why these changes occurred and tells the stories of the nurses’ experiences on the front line.

Our inquiry investigated the barriers to, and facilitators for, the involvement of Black and Minority Ethnic (BME) and ‘seldom-heard’ communities, in a study researching the impact of mobile phone and wireless device usage on adolescents’ cognition, behaviour and mental health. The aim was to co-produce solutions to increase participation, and we used focus groups, telephone interviews, a community event and a public and patient involvement (PPI) café to conduct the inquiry. Five themes emerged from the data: two enablers – the value and benefits of research; and three barriers – concerns about research and about communication, and practical constraints. A central cross-cutting theme, the concept of trust, was evident from the data, and extended across all themes, including across the solutions to non-participation. When the data collection and analysis were completed, we ran a symposium for researchers and members of the public to share our findings and to co-produce solutions. The symposium generated ideas about improving participation, including tailoring participant information, engaging with local advocates and involving people in research design and delivery.

BackgroundAdvances in treatment have transformed HIV into a long-term condition (LTC), presenting fresh challenges for health services, HIV specialists, and GPs.AimTo explore the experience of people living with HIV (PLHIV) regarding consulting their GPs.Design & settingA mixed-method analysis using data from two sources: a nationally-representative survey of PLHIV and a qualitative study with London-based PLHIV.MethodUnivariate logistic regression was used for quantitative data and framework analysis for qualitative data.ResultsThe survey had 4422 participants; the qualitative study included 52 participants. In both studies, registration with a GP and HIV status disclosure were high. Similar to general population trends, recent GP use was associated with poor self-rated health status, comorbidities, older age, and lower socioeconomic status. Two-thirds reported a good experience with GPs; a lower proportion felt comfortable asking HIV-related questions. Actual or perceived HIV stigma were consistently associated with poor satisfaction. In the interviews, participants with additional LTCs valued sensitive and consistent support from GPs. Some anticipated, and sometimes experienced, problems relating to HIV status, as well as GPs’ limited experience and time to manage their complex needs. Sometimes they took their own initiative to facilitate coordination and communication. For PLHIV, a ‘good’ GP offered continuity and took time to know and accept them without judgment.ConclusionThe authors suggest clarification of roles and provision of relevant support to build the confidence of PLHIV in GPs and primary care staff to care for them. As the PLHIV population ages, there is a strong need to develop trusting patient–GP relationships and HIV-friendly GP practices.

ObjectivesTo 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 pretreatment era.DesignQualitative interview study with framework analysis.SettingTwo large HIV adult outpatient clinics in central London.Participants52 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 (preantiretroviral therapy (ART)), 1997–2005 (complex ARTs), 2006–2012 (simpler ARTs) and 2013 onwards (recent diagnoses).ResultsSome 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 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. Initiating treatment was a major life decision.ConclusionWe 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 recognise the needs of patients for whom the diagnosis and treatment remain significant challenges.

Background\ud \ud Successes in biomedicine have transformed HIV from a debilitating and frequently fatal infection to a chronic, manageable condition. \ud \ud Objective\ud \ud 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.\ud \ud Design\ud \ud Qualitative interviews with fifty-two people living with HIV who were diagnosed during different phases in the history of the epidemic. \ud \ud Setting and participants\ud \ud Participants 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). \ud \ud Results\ud \ud 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. \ud \ud Conclusion\ud \ud 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.

Patterns of healthcare demand are changing, so services are increasingly being located in communities. Nurses and nurse managers must. therefore, prepare themselves for mid-career transitions into new roles or working environments. This article explains how these transitions can best be made and offers some tips for nurses and nurse managers who are about to make them, or who want to help colleagues make them, successfully.

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.

Globally, clinical guidelines for HIV treatment are being altered to reflect new research showing that successful treatment with antiretroviral therapies (ART) can prevent the onward transmission of HIV. As a result, health care services are being challenged to find ways to roll out "treatment as prevention" (TasP) as a public health measure. In theory, TasP requires individuals to start ART as soon as they are diagnosed - for public health reasons - which may be some time before ART for that individual is required for clinical reasons. There is currently little research on the acceptability of TasP from a patient or provider perspective. This paper reports findings from a qualitative study that sought to explore UK nurses' views and experiences of TasP in HIV care. Ten HIV specialist nurses, purposively selected from across the country, were interviewed. Results suggest that, although positive about TasP in principle, nurses hold several reservations about its implementation in practice. Perceived benefits of TasP include reassurance for patients that their loved ones are protected and that immediate care is available. Concerns include the possibility of sexual dis-inhibition or coercion within sexual relationships. In the UK context, decisions around TasP are still being made on a highly individualised patient by patient basis, within a philosophy of holistic care and partnership working. As such, the research participants called for more resources to support information giving, risk assessment and decision-making. The results show that translating a public health treatment approach into individual patient care is complex, potentially time-consuming and may alter traditional provider-patient dynamics. The findings from this study suggest that in-depth research is needed to understand better the patient, community and provider experience as TasP becomes more widely rolled out.

Patterns of healthcare demand are changing, so services are increasingly being located in communities. Nurses and nurse managers must. therefore, prepare themselves for mid-career transitions into new roles or working environments. This article explains how these transitions can best be made and offers some tips for nurses and nurse managers who are about to make them, or who want to help colleagues make them, successfully.

Introduction Figures for the UK’s HIV treatment cascade are among the best worldwide with over 95% retention once in care, however guidelines and service models are changing. We examine perspectives on each stage of the cascade among four generations of patients. Methods In-depth interviews with 48 HIV-positive adults from two clinics. Participants were purposively selected from the four ‘HIV generations’, based on ART development – those diagnosed pre-1996, 1997–2005, 2006–2012, and since 2013. Framework was used to analyse the data. Results Diagnosis - Participants from the pre-treatment era were diagnosed on the development of AIDS-defining symptoms, or following a partner’s diagnosis. Late diagnoses more recently were because patients underestimated their own risk or failures of healthcare professionals to spot indicator conditions. Linkage with care - Earlier generations sometimes disengaged with care for a period following diagnosis, dismayed by limited treatment options. In contrast, those diagnosed since 2005 linked to care promptly and felt they received appropriate medical attention. Retention in care - Across the generations, once linked to care participants were committed to attending appointments and taking medications. Occasional lapses were explained by external issues such as drug misuse or household disruption, rather than their relationship with the clinic. Some reported concern at the recently reduced frequency of appointments, and the increasing role of primary care. Viral suppression among those on ART - Most participants on ART had undetectable viral load and good adherence. Actual or anticipated co-morbidities worried them more than HIV, however, wider discussions about NHS cost-cutting have raised patient anxiety about accessing the ‘best’ treatments. Conclusion The high standard of UK’s HIV treatment cascade reflects strong relationships between patients and staff, which service changes could undermine. Being sensitive to how patients experience different stages of decision-making and the wider influences on their behaviour is vital towards sustaining high retention along the cascade. Disclosure of interest statement This study is funded by a grant from the Imperial NIHR BRC and the Imperial Healthcare Charity. No pharmaceutical grants were received in the development of this study.