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Background & objectives The comparative uses of different types of patient experience (PE) feedback as data within quality improvement (QI) are poorly understood. This paper reviews what types are currently available and categorizes them by their characteristics in order to better understand their roles in QI. Methods A scoping review of types of feedback currently available to hospital staff in the UK was undertaken. This comprised academic database searches for “measures of PE outcomes” (2000‐2016), and grey literature and websites for all types of “PE feedback” potentially available (2005‐2016). Through an iterative consensus process, we developed a list of characteristics and used this to present categories of similar types. Main results The scoping review returned 37 feedback types. A list of 12 characteristics was developed and applied, enabling identification of 4 categories that help understand potential use within QI—(1) Hospital‐initiated (validated) quantitative surveys: for example the NHS Adult Inpatient Survey; (2) Patient‐initiated qualitative feedback: for example complaints or twitter comments; (3) Hospital‐initiated qualitative feedback: for example Experience Based Co‐Design; (4) Other: for example Friends & Family Test. Of those routinely collected, few elicit “ready‐to‐use” data and those that do elicit data most suitable for measuring accountability, not for informing ward‐based improvement. Guidance does exist for linking collection of feedback to QI for some feedback types in Category 3 but these types  are not routinely used. Conclusion If feedback is to be used more frequently within QI, more attention must be paid to obtaining and making available the most appropriate types.

ObjectivesDuring 2015–2018, a randomised controlled trial (RCT) evaluated eRAPID, an eHealth intervention designed to capture patient-reported symptoms online during cancer treatment. eRAPID provides patients with advice on when to self-manage or seek medical support. Clinicians accessed symptom reports within electronic patient records. 508 participants starting systemic cancer treatment were recruited and followed for 18 weeks. The intervention group (n=256) was asked to access eRAPID and complete weekly online symptom reports. Clinicians received training on accessing and interpreting symptom reports. Overall, eRAPID had a positive impact on patients’ symptoms, quality of life and self-efficacy, particularly early in treatment and for patients with early-stage disease. Using mixed methods, we aimed to gather insight from patients and clinicians on how eRAPID worked to facilitate the interpretation of RCT findings.MethodsFollowing a concurrent triangulation design, patient experiences of eRAPID were gathered via end-of-study interviews (n=45) and questionnaires (n=186). Clinician experiences were obtained by end-of-study interviews (n=18) and completion, throughout the trial, of feedback questionnaires (n=787 from n=55 clinicians). Framework analysis was applied to examine qualitative data and close-ended questions were descriptively summarised. Findings were mapped against results from the RCT.SettingMedical oncology services, UK cancer centre.ResultsPatient feedback indicated eRAPID was easy to use. Adherence to weekly reporting was influenced by health status, reminders, perceived value and clinical use. Patient-reported benefits of eRAPID included an enhanced connection with the hospital, provision of practical advice and personal monitoring, which provided reassurance and empowerment. Clinicians were positive about the potential for online symptom monitoring but had mixed levels of direct experience with using eRAPID during the trial. Patients echoed this and recommended more explicit clinician use of symptom data.ConclusionsThe mixed-method approach to capturing patient and clinician opinions provided valuable insight into the eRAPID intervention and complementary information on how the intervention was received and functioned.

Purpose Health research in the UK is being impeded by a stretched NHS system. The purpose of this paper is to use the Great Fire of Rome as an allegory to understand the difficulties encountered by health researchers when attempting to conduct research within a healthcare system that is currently in crisis. Design/methodology/approach The paper draws on both the authors’ own and other research teams’ experiences from the published literature in order to demonstrate that this difficulty is a widespread problem for the health research community in the UK. Findings Recruitment and engagement issues across different research studies and clinical environments are often ascribed as being related to individual contexts or settings. Rather, the authors propose that these problems are actually writ large across nearly the entire NHS. The authors offer ideas for what can be done to alleviate the worst of this situation – a change in culture and ways of working alongside employing more pragmatic, rapid methods to engage exceptionally busy healthcare staff. Originality/value The paper offers a provocative viewpoint that instead of seeking to individualise recruitment and engagement issues in relation to the local context, the research community should publicly acknowledge the universality of this problem in order to bring about meaningful change.

Context Collecting feedback from patients about their experiences of health care is an important activity. However, improvement based on this feedback rarely materializes. In this study, we focus on answering the question—“what is impeding the use of patient experience feedback?” Methods We conducted a qualitative study in 2016 across three NHS hospital Trusts in the North of England. Focus groups were undertaken with ward‐based staff, and hospital managers were interviewed in‐depth (50 participants). We conducted a conceptual‐level analysis. Findings On a macro level, we found that the intense focus on the collection of patient experience feedback has developed into its own self‐perpetuating industry with a significant allocation of resource, effort and time being expended on this task. This is often at the expense of pan‐organizational learning or improvements being made. On a micro level, ward staff struggled to interact with feedback due to its complexity with questions raised about the value, validity and timeliness of data sources. Conclusions Macro and micro prohibiting factors come together in a perfect storm which provides a substantial impediment to improvements being made. Recommendations for policy change are put forward alongside recognition that high‐level organizational culture/systems are currently too sluggish to allow fruitful learning and action to occur from the feedback that patients give.

Patient-reported outcomes (PROs), such as symptoms, functioning, and other health-related quality-of-life concepts are gaining a more prominent role in the benefit–risk assessment of cancer therapies. However, varying ways of analysing, presenting, and interpreting PRO data could lead to erroneous and inconsistent decisions on the part of stakeholders, adversely affecting patient care and outcomes. The Setting International Standards in Analyzing Patient-Reported Outcomes and Quality of Life Endpoints in Cancer Clinical Trials-Innovative Medicines Initiative (SISAQOL-IMI) Consortium builds on the existing SISAQOL work to establish recommendations on design, analysis, presentation, and interpretation for PRO data in cancer clinical trials, with an expanded set of topics, including more in-depth recommendations for randomised controlled trials and single-arm studies, and for defining clinically meaningful change. This Policy Review presents international stakeholder views on the need for SISAQOL-IMI, the agreed on and prioritised set of PRO objectives, and a roadmap to ensure that international consensus recommendations are achieved.

Rosemary Peacock, Glasgow

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