Assessment of Patient and Clinician Perspectives on Clinically Meaningful Extension of Progression-free Survival in Prostate Cancer.

Background And Objective: It is widely accepted that the value of treatments for incurable metastatic cancer depends on their ability to improve overall survival (OS), quality of life (QoL), or both. Progression-free survival (PFS) is frequently used as a primary endpoint because of challenges in accurately assessing OS and QoL. The perceived value of extending PFS when there is uncertainty regarding the benefit to OS/QoL may vary between clinicians and patients.

Why it is hard to use PROMs and PREMs in routine health and care.

Patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) show the results of healthcare activities as rated by patients and others. Patients or their proxies record feedback using questionnaires. These can enhance quality for all and tailored care for individuals.

Routine measurement of patient experience.

Patient experience is a key pillar of healthcare quality. We describe a framework of three short generic measures covering Patient Experience, Result Satisfaction and Service Integration. The Result Satisfaction measure is described for the first time.

The realities and expectations of community involvement in COVID-19 research: a Consumer Reference Group perspective.

Background: Older adults have been disproportionately impacted by the COVID-19 pandemic. COVID-19 restrictions such as stay at home orders and physical distancing measures have been implemented to reduce older adults' risk of infection, however, such measures can have negative effects on older adults' mental health and social wellbeing. In 2020, the research team received funding as part of an Australian COVID-19 research grants program to investigate how services can better meet the mental health and social support needs of older adults during COVID-19.

Readiness for five digital technologies in general practice: perceptions of staff in one part of southern England.

Background: Our aim was to understand how digital readiness within general practice varies between different technologies and to identify how demographic, workplace and external factors affect this. The technologies considered include electronic patient records, telehealth (text messaging and video consultations), patient online access, patient clinical apps and wearables, and social media.

Method: A digital readiness survey tool was developed and used in one area of southern England during Spring 2020.

Development of social contact and loneliness measures with validation in social prescribing.

Aims: This paper describes two patient-reported measures of social contact and loneliness, which are closely related concepts. The first measure (R-Outcomes Social Contact measure) was developed from scratch, based on customer needs and literature review. It covers emotional and social aspects using positive terms.

Measure what we want: a taxonomy of short generic person-reported outcome and experience measures (PROMs and PREMs).

Introduction: Health and care systems are complex and multifaceted, but most person-reported outcome and experience measures (PROMs and PREMs) address just one aspect. Multiple aspects need measuring to understand how what we do impacts patients, staff and services, and how these are affected by external factors. This needs survey tools that measure what people want, are valid, sensitive, quick and easy to use, and suitable for people with multiple conditions.

Comparison of staff and resident health status ratings in care homes.

Background: Many care home residents cannot self-report their own health status. Previous studies have shown differences between staff and resident ratings. In 2012, we collected 10 168 pairs of health status ratings using the health status measure.

A Taxonomy for Survey Measures Used to Evaluate Complex Digital Health Innovations.

Evaluators need to measure whether innovations help patients and staff, but have lacked the tools needed to do this as part of routine care. We provide a taxonomy for the classification of survey measures, which can be used together on a pick and mix basis. These are described in the context of the evaluation of digital health innovations.

Health status of care home residents: practicality and construct validity of data collection by staff at scale.

Background: Medical diagnoses and assessed need for care are the prerequisites for planning and delivery of care to residents of care homes. Assessing the effectiveness of care is difficult. The aim of this study was to test the practicality and construct validity of the health status measure using secondary analysis of a large data set.

Monitoring work well-being, job confidence and care provided by care home staff using a self-report survey.

Background And Method: In care homes, staff well-being, job confidence and opinion of the care provided to residents are central to morale and care quality. In this study, care home staff in the East Midlands region of England completed self-reported outcome and experience surveys in two rounds. Mean scores for each home are shown using a scale from 0 (all chose lowest option) to 100 (all chose highest option).

Development and initial testing of a Health Confidence Score (HCS).

Introduction: Patients need to feel confident about looking after their own health. This is needed to improve patient outcomes and clinical support. With few suitable tools available to measure self-care health confidence, we developed and validated a short, generic survey instrument for use in evaluation and quality improvement.

Personal Wellbeing Score (PWS)-a short version of ONS4: development and validation in social prescribing.

Aims: Our aim was to develop a short generic measure of subjective well-being for routine use in patient-centred care and healthcare quality improvement alongside other patient-reported outcome and experience measures.

Methods: The Personal Wellbeing Score (PWS) is based on the Office of National Statistics (ONS) four subjective well-being questions (ONS4) and thresholds. PWS is short, easy to use and has the same look and feel as other measures in the same family of measures.

Digital innovation evaluation: user perceptions of innovation readiness, digital confidence, innovation adoption, user experience and behaviour change.

Background: Innovation spread is a key policy objective for health systems world-wide, but adoption success varies enormously. We have developed a set of short generic user-reported measures to help understand how and why healthcare innovations spread. This work builds on the literature and on practical experience in developing and using patient-reported outcome measures.

Open Source Paradigm: A Synopsis of The Cathedral and the Bazaar for Health and Social Care.

Background: Open source software (OSS) is becoming more fashionable in health and social care, although the ideas are not new. However progress has been slower than many had expected.

Objective: The purpose is to summarise the Free/Libre Open Source Software (FLOSS) paradigm in terms of what it is, how it impacts users and software engineers and how it can work as a business model in health and social care sectors.

Performance of EQ-5D, howRu and Oxford hip & knee scores in assessing the outcome of hip and knee replacements.

Background: We aimed to compare the performance of EQ-5D-3 L and howRu, which are short generic patient-reported outcome measures (PROMs), in assessing the outcome of hip and knee replacements, using the Oxford Hip Score (OHS) and the Oxford Knee Scores (OKS) for comparison.

Methods: Outcome was assessed as the difference between pre-surgery and 6-month post-surgery scores. We used a large sample from the NHS PROMs database, which used EQ-5D-3 L, and a small cohort of patients having the same operations collected by MyClinicalOutcomes (MCO), which used howRu.

The Load Model: an alternative to QALY.

Background: QALYs are widely used in health economic evaluation, but remain controversial, largely because they do not reflect how many people behave in practice. This paper presents a new conceptual model (Load Model) and illustrates it in comparison with the QALY model.

Methods: Load is the average annual weight attributed to morbidity and mortality over a defined period, using weightings based on preference judgements.

Metadata requirements for portals.

Consensus around the requirements for metadata in patient and clinical portals would provide a sound basis for the adoption of standards. We propose a set of requirements for metadata in a way that is generic and platform independent. These requirements cover both Clinical Documents and Clinical Statements, addressing the what, who, when and where of each item.

A short generic patient experience questionnaire: howRwe development and validation.

Background: Patient experience is a key quality outcome for modern health services, but most existing survey methods are long and setting-specific. We identified the need for a short generic questionnaire for tracking patient experience.

Methods: We describe the development and validation of the howRwe questionnaire.

Comparison of howRU and EQ-5D measures of health-related quality of life in an outpatient clinic.

This paper reports on a head-to-head study of howRU and EQ-5D on patients with cardiovascular disease. howRU is a short generic measure of health-related quality of life comprising 39 words, designed for routine use, which we compare with EQ-5D (230 words). Patients attending a clinic completed both instruments.

The history of the Read Codes: the inaugural James Read Memorial Lecture 2011.

General practitioner (GP) computing has its origins in the 1970s when the benefits of clinical coding and prescribing were demonstrated. During the early 1980s Dr James Read, working with Abies Informatics Ltd, developed the eponymous Read Codes, which were broader and more comprehensive than other schemes, yet intuitive and easy to use. In 1988 a joint working party of the Royal College of General Practitioners (RCGP) and the British Medical Association (BMA) recommended that the Read Codes be adopted nationally.

Evaluation of a new short generic measure of health status: howRu.

Background: Quality of life is paramount for patients and clinicians, but existing measures of health were not developed for routine use.

Objectives: This paper describes the development and testing of a new generic tool for measuring health related quality of life (HRQoL) with direct comparison to the SF-12 Health Survey.

Methods: The new tool (howRu) has four items (discomfort, distress, disability and dependence), rated using four levels (none, a little, quite a lot and extreme), providing 256 possible states (4(4)); it has an aggregate scoring scheme with a range from 0 (worst) to 12 (best).