Patients' experiences of, and engagement with, remote home monitoring services for COVID-19 patients: A rapid mixed-methods study.

INTRODUCTION: Remote home monitoring models were implemented during the COVID-19 pandemic to shorten hospital length of stay, reduce unnecessary hospital admission, readmission and infection and appropriately escalate care. Within these models, patients are asked to take and record readings and escalate care if advised. There is limited evidence on how patients and carers experience these services. This study aimed to evaluate patient experiences of, and engagement with, remote home monitoring models for COVID-19. METHODS: A rapid mixed-methods study was carried out in England (conducted from March to June 2021). We remotely conducted a cross-sectional survey and semi-structured interviews with patients and carers. Interview findings were summarized using rapid assessment procedures sheets and data were grouped into themes (using thematic analysis). Survey data were analysed using descriptive statistics. RESULTS: We received 1069 surveys (18% response rate) and conducted interviews with patients (n = 59) or their carers (n = 3). 'Care' relied on support from staff members and family/friends. Patients and carers reported positive experiences and felt that the service and human contact reassured them and was easy to engage with. Yet, some patients and carers identified problems with engagement (e.g., hesitancy to self-escalate care). Engagement was influenced by patient factors such as health and knowledge, support from family/friends and staff, availability and ease of use of informational and material resources (e.g., equipment) and service factors. CONCLUSION: Remote home monitoring models place responsibility on patients to self-manage symptoms in partnership with staff; yet, many patients required support and preferred human contact (especially for identifying problems). Caring burden and experiences of those living alone and barriers to engagement should be considered when designing and implementing remote home monitoring services. PATIENT OR PUBLIC CONTRIBUTION: The study team met with service users and public members of the evaluation teams throughout the project in a series of workshops. Workshops informed study design, data collection tools and data interpretation and were conducted to also discuss study dissemination. Public patient involvement (PPI) members helped to pilot patient surveys and interview guides with the research team. Some members of the public also piloted the patient survey. Members of the PPI group were given the opportunity to comment on the manuscript, and the manuscript was amended accordingly.

Rapid prioritisation of topics for rapid evaluation: the case of innovations in adult social care and social work.

BACKGROUND: Prioritisation processes are widely used in healthcare research and increasingly in social care research. Previous research has recommended using consensus development methods for inclusive research agenda setting. This research has highlighted the need for transparent and systematic methods for priority setting. Yet there has been little research on how to conduct prioritisation processes using rapid methods. This is a particular concern when prioritisation needs to happen rapidly. This paper aims to describe and discuss a process of rapidly identifying and prioritising a shortlist of innovations for rapid evaluation applied in the field of adult social care and social work. METHOD: We adapted the James Lind Alliance approach to priority setting for rapid use. We followed four stages: (1) Identified a long list of innovations, (2) Developed shortlisting criteria, (3) Grouped and sifted innovations, and (4) Prioritised innovations in a multi-stakeholder workshop (n = 23). Project initiation through to completion of the final report took four months. RESULTS: Twenty innovations were included in the final shortlist (out of 158 suggested innovations). The top five innovations for evaluation were identified and findings highlighted key themes which influenced prioritisation. The top five priorities (listed here in alphabetical order) were: Care coordination for dementia in the community, family group conferencing, Greenwich prisons social care, local area coordination and MySense.Ai. Feedback from workshop participants (n = 15) highlighted tensions from using a rapid process (e.g. challenges of reaching consensus in one workshop). CONCLUSION: The method outlined in this manuscript can be used to rapidly prioritise innovations for evaluation in a feasible and robust way. We outline some implications and compromises of rapid prioritisation processes for future users of this approach to consider.

A Cost Evaluation of COVID-19 Remote Home Monitoring Services in England.

BACKGROUND: Remote home monitoring services emerged as critical components of health care delivery from NHS England during the COVID-19 pandemic, aiming to provide timely interventions and reduce health care system burden. Two types of service were offered: referral by community health services to home-based care to ensure the right people were admitted to the hospital at the right time (called COVID Oximetry@home, CO@h); and referral by hospital to support patients' transition from hospital to home (called COVID-19 Virtual Ward, CVW). The information collected for the oxygen levels and other symptoms was provided via digital means (technology-enabled) or over the phone (analogue-only submission mode). This study aimed to evaluate the costs of implementing remote home monitoring for COVID-19 patients across 26 sites in England during wave 2 of the pandemic. Understanding the operational and financial implications of these services from the NHS perspective is essential for effective resource allocation and service planning. METHODS: We used a bottom-up costing approach at the intervention level to describe the costs of setting up and running the services. Twenty-six implementation sites reported the numbers of patients and staff involved in the service and other resources used. Descriptive statistics and multivariable regression analysis were used to assess cost variations and quantify the relationship between the number of users and costs while adjusting for other service characteristics. RESULTS: The mean cost per patient monitored was lower in the CO@h service compared with the CVW service (£527 vs £599). The mean cost per patient was lower for implementation sites using technology-enabled and analogue data submission modes compared with implementation sites using analogue-only modes for both CO@h (£515 vs £561) and CVW (£584 vs £612) services. The number of patients enrolled in the services and the service type significantly affected the mean cost per patient. CONCLUSIONS: Our analysis provides a framework for evaluating the costs of similar services in the future and shows that the implementation of these services benefit from the employment of tech-enabled data submission modes.

Youth violence intervention programme for vulnerable young people attending emergency departments in London: a rapid evaluation.

Background: Youth violence intervention programmes involving the embedding of youth workers in NHS emergency departments to help young people (broadly aged between 11 and 24 years) improve the quality of their lives following their attendance at an emergency department as a result of violent assault or associated trauma are increasing across the NHS. This study evaluates one such initiative run by the charity Redthread in partnership with a NHS trust. Objectives: To evaluate the implementation and impact of a new youth violence intervention programme at University College London Hospital NHS Trust and delivered by the charity Redthread: (1) literature review of studies of hospital-based violent crime interventions; (2) evaluation of local implementation and of University College London Hospital staff and relevant local stakeholders concerning the intervention and its impact; (3) assessment of the feasibility of using routine secondary care data to evaluate the impact of the Redthread intervention; and (4) cost-effectiveness analysis of the Redthread intervention from the perspective of the NHS. Methods: The evaluation was designed as a mixed-methods multiphased study, including an in-depth process evaluation case study and quantitative and economic analyses. The project was undertaken in different stages over two years, starting with desk-based research and an exploratory phase suitable for remote working while COVID-19 was affecting NHS services. A total of 22 semistructured interviews were conducted with staff at Redthread and University College London Hospital and others (e.g. a senior stakeholder involved in NHS youth violence prevention policy). We analysed Redthread documents, engaged with experts and conducted observations of staff meetings to gather more in-depth insights about the effectiveness of the intervention, the processes of implementation, staff perceptions and cost. We also undertook quantitative analyses to ascertain suitable measures of impact to inform stakeholders and future evaluations. Results: Redthread's service was viewed as a necessary intervention, which complemented clinical and other statutory services. It was well embedded in the paediatric emergency department and adolescent services but less so in the adult emergency department. The diverse reasons for individual referrals, the various routes by which young people were identified, and the mix of specific support interventions provided, together emphasised the complexity of this intervention, with consequent challenges in implementation and evaluation. Given the relative unit costs of Redthread and University College London Hospital's inpatient services, it is estimated that the service would break even if around one-third of Redthread interventions resulted in at least one avoided emergency inpatient admission. This evaluation was unable to determine a feasible approach to measuring the quantitative impact of Redthread's youth violence intervention programme but has reflected on data describing the service, including costs, and make recommendations to support future evaluation. Limitations: The COVID-19 pandemic severely hampered the implementation of the Redthread service and the ability to evaluate it. The strongest options for analysis of effects and costs were not possible due to constraints of the consent process, problems in linking Redthread and University College London Hospital patient data and the relatively small numbers of young people having been engaged for longer-term support over the evaluation period. Conclusions: We have been able to contribute to the qualitative evidence on the implementation of the youth violence intervention programme at University College London Hospital, showing, for example, that NHS staff viewed the service as an important and needed intervention. In the light of problems with routine patient data systems and linkages, we have also been able to reflect on data describing the service, including costs, and made recommendations to support future evaluation. Future work: No future work is planned. Funding: National Institute for Health and Care Research Health Services and Delivery Research programme (RSET: 16/138/17).

Youth violence intervention programmes in the NHS embed specialist youth workers into a hospital's paediatric emergency departments. These staff can engage young people and encourage positive change in their lives. Youth violence intervention programmes are part of a broader national strategy to prevent violence among young people. To improve our knowledge of the impact on young people and the cost-effectiveness of youth violence intervention programmes, we carried out an evaluation of a youth violence intervention programme introduced in 2020 at University College London Hospital and run by the charity Redthread. We reviewed the international evidence on youth violence intervention programmes, and other studies of Redthread services but found few studies measuring impact within the NHS. We reviewed documents and conducted 22 interviews with University College London Hospital and Redthread staff among others. We found that the service is viewed positively by NHS staff. We also found that youth workers can help a young person to better engage in their medical care and treatment. Youth violence intervention programmes also provide a link with non­health-care services within the community. Overall, they help NHS staff to better support vulnerable young people following discharge from hospital. We also established the cost of delivering Redthread services per user was £1865. This compares with a cost per inpatient of £5789 for a group of patients similar to those helped by Redthread. The average cost of a Redthread-type patient attending the emergency department was £203. We looked at whether it was possible to measure whether Redthread reduced young people's re-admissions to the hospital's emergency departments. However, we concluded that fully answering this question was not possible over the timescale of the project. This was because of the impact of COVID-19 on Redthread and other paediatric services, the low numbers of young people engaged in a longer-term programme with Redthread (59) and difficulties with linking information from the hospital and Redthread. We have therefore made various recommendations in this report to improve the way that data are collected and linked to aid future evaluations.

Patient and staff experiences of using technology-enabled and analogue models of remote home monitoring for COVID-19 in England: A mixed-method evaluation.

OBJECTIVE: To evaluate patient and staff experiences of using technology-enabled ('tech-enabled') and analogue remote home monitoring models for COVID-19, implemented in England during the pandemic. METHODS: Twenty-eight sites were selected for diversity in a range of criteria (e.g. pre-hospital or early discharge service, mode of patient data submission). Between February and May 2021, we conducted quantitative surveys with patients, carers and staff delivering the service, and interviewed patients, carers, and staff from 17 of the 28 services. Quantitative data were analysed using descriptive statistics and both univariate and multivariate analyses. Qualitative data were interpreted using thematic analysis. RESULTS: Twenty-one sites adopted mixed models whereby patients could submit their symptoms using either tech-enabled (app, weblink, or automated phone calls) or analogue (phone calls with a health professional) options; seven sites offered analogue-only data submission (phone calls or face-to-face visits with a health professional). Sixty-two patients and carers were interviewed, and 1069 survey responses were received (18 % response rate). Fifty-eight staff were interviewed, and 292 survey responses were received (39 % response rate). Patients who used tech-enabled modes tended to be younger (p = 0.005), have a higher level of education (p = 0.011), and more likely to identify as White British (p = 0.043). Most patients found relaying symptoms easy, regardless of modality, though many received assistance from family or friends. Staff considered the adoption of mixed delivery models beneficial, enabling them to manage large patient numbers and contact patients for further assessment as needed; however, they suggested improvements to the functionality of systems to better fit clinical and operational needs. Human contact was important in all remote home monitoring options. CONCLUSIONS: Organisations implementing tech-enabled remote home monitoring at scale should consider adopting mixed models which can accommodate patients with different needs; focus on the usability and interoperability of tech-enabled platforms; and encourage digital inclusivity for patients.

A rapid mixed-methods evaluation of remote home monitoring models during the COVID-19 pandemic in England.

Background: Remote home monitoring services were developed and implemented for patients with COVID-19 during the pandemic. Patients monitored blood oxygen saturation and other readings (e.g. temperature) at home and were escalated as necessary. Objective: To evaluate effectiveness, costs, implementation, and staff and patient experiences (including disparities and mode) of COVID-19 remote home monitoring services in England during the COVID-19 pandemic (waves 1 and 2). Methods: A rapid mixed-methods evaluation, conducted in two phases. Phase 1 (July-August 2020) comprised a rapid systematic review, implementation and economic analysis study (in eight sites). Phase 2 (January-June 2021) comprised a large-scale, multisite, mixed-methods study of effectiveness, costs, implementation and patient/staff experience, using national data sets, surveys (28 sites) and interviews (17 sites). Results: Phase 1 Findings from the review and empirical study indicated that these services have been implemented worldwide and vary substantially. Empirical findings highlighted that communication, appropriate information and multiple modes of monitoring facilitated implementation; barriers included unclear referral processes, workforce availability and lack of administrative support. Phase 2 We received surveys from 292 staff (39% response rate) and 1069 patients/carers (18% response rate). We conducted interviews with 58 staff, 62 patients/carers and 5 national leads. Despite national roll-out, enrolment to services was lower than expected (average enrolment across 37 clinical commissioning groups judged to have completed data was 8.7%). There was large variability in implementation of services, influenced by patient (e.g. local population needs), workforce (e.g. workload), organisational (e.g. collaboration) and resource (e.g. software) factors. We found that for every 10% increase in enrolment to the programme, mortality was reduced by 2% (95% confidence interval: 4% reduction to 1% increase), admissions increased by 3% (-1% to 7%), in-hospital mortality fell by 3% (-8% to 3%) and lengths of stay increased by 1.8% (-1.2% to 4.9%). None of these results are statistically significant. We found slightly longer hospital lengths of stay associated with virtual ward services (adjusted incidence rate ratio 1.05, 95% confidence interval 1.01 to 1.09), and no statistically significant impact on subsequent COVID-19 readmissions (adjusted odds ratio 0.95, 95% confidence interval 0.89 to 1.02). Low patient enrolment rates and incomplete data may have affected chances of detecting possible impact. The mean running cost per patient varied for different types of service and mode; and was driven by the number and grade of staff. Staff, patients and carers generally reported positive experiences of services. Services were easy to deliver but staff needed additional training. Staff knowledge/confidence, NHS resources/workload, dynamics between multidisciplinary team members and patients' engagement with the service (e.g. using the oximeter to record and submit readings) influenced delivery. Patients and carers felt services and human contact received reassured them and were easy to engage with. Engagement was conditional on patient, support, resource and service factors. Many sites designed services to suit the needs of their local population. Despite adaptations, disparities were reported across some patient groups. For example, older adults and patients from ethnic minorities reported more difficulties engaging with the service. Tech-enabled models helped to manage large patient groups but did not completely replace phone calls. Limitations: Limitations included data completeness, inability to link data on service use to outcomes at a patient level, low survey response rates and under-representation of some patient groups. Future work: Further research should consider the long-term impact and cost-effectiveness of these services and the appropriateness of different models for different groups of patients. Conclusions: We were not able to find quantitative evidence that COVID-19 remote home monitoring services have been effective. However, low enrolment rates, incomplete data and varied implementation reduced our chances of detecting any impact that may have existed. While services were viewed positively by staff and patients, barriers to implementation, delivery and engagement should be considered. Study registration: This study is registered with the ISRCTN (14962466). Funding: This project was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (RSET: 16/138/17; BRACE: 16/138/31) and NHSEI and will be published in full in Health and Social Care Delivery Research; Vol. 11, No. 13. See the NIHR Journals Library website for further project information. The views expressed in this publication are those of the authors and not necessarily those of the National Institute for Health and Care Research or the Department of Health and Social Care.

COVID-19 patients can experience very low oxygen levels, without feeling breathless. Patients may not realise there is a problem until they become extremely unwell, risking being admitted to hospital too late. To address this, COVID-19 remote home monitoring services were developed and later rolled out across England. Patients monitored oxygen levels at home using an 'oximeter' (a small device which clips on to your finger) and sent these readings to providers via phone or technology (e.g. an app). Patients could access further care if needed. We did not know whether these services worked, or what people felt about them. • How services were set up and used in England. • Whether services work (e.g. by reducing deaths and length of hospital stay). • How much they cost. • What patients, carers and staff think about these services (including differences between groups and telephone vs. technology). We looked at available existing evidence and collected data from eight services operating in the first wave of the pandemic. During the second wave of the pandemic, we used data available at a national level and conducted surveys (28 sites) and interviews (17 sites) with staff, patients and individuals involved in developing/leading services nationally. These services have been used worldwide, but they vary considerably. We found many things that help these services to be used (e.g. good communication) but also things that get in the way (e.g. unclear referrals). Our findings did not show that services reduce deaths or time in hospital. But these findings are limited by a lack of data. Staff and patients liked these services, but we found some barriers to delivering and using the service. Some groups found services harder to use (e.g. older patients, those with disabilities and ethnic minorities). Using technology helped with large patient groups, but it did not completely replace phone calls. Better information is needed to know whether these services work. Staff and patients liked these services. However, improvements may make them easier to deliver and use (e.g. further staff training and giving additional support to patients who need it).

Experiences of coordinated care for people in the UK affected by rare diseases: cross-sectional survey of patients, carers, and healthcare professionals.

BACKGROUND: Poorly coordinated care can have major impacts on patients and families affected by rare conditions, with negative physical health, psychosocial and financial consequences. This study aimed to understand how care is coordinated for rare diseases in the United Kingdom. METHODS: We undertook a national survey in the UK involving 760 adults affected by rare diseases, 446 parents/carers of people affected by rare diseases, and 251 healthcare professionals who care for people affected by rare diseases. RESULTS: Findings suggested that a wide range of patients, parents and carers do not have coordinated care. For example, few participants reported having a care coordinator (12% patients, 14% parents/carers), attending a specialist centre (32% patients, 33% parents/carers) or having a care plan (10% patients, 44% parents/carers). A very small number of patients (2%) and parents/carers (5%) had access to all three-a care coordinator, specialist centre and care plan. Fifty four percent of patients and 33% of parents/carers reported access to none of these. On the other hand, a higher proportion of healthcare professionals reported that families with rare conditions had access to care coordinators (35%), specialist centres (60%) and care plans (40%). CONCLUSIONS: Care for families with rare conditions is generally not well coordinated in the UK, with findings indicating limited access to care coordinators, specialist centres and care plans. Better understanding of these issues can inform how care coordination might be improved and embrace the needs and preferences of patients and families affected by rare conditions.

Developing a taxonomy of care coordination for people living with rare conditions: a qualitative study.

BACKGROUND: Improving care coordination is particularly important for individuals with rare conditions (who may experience multiple inputs into their care, across different providers and settings). To develop and evaluate strategies to potentially improve care coordination, it is necessary to develop a method for organising different ways of coordinating care for rare conditions. Developing a taxonomy would help to describe different ways of coordinating care and in turn facilitate development and evaluation of pre-existing and new models of care coordination for rare conditions. To the authors' knowledge, no studies have previously developed taxonomies of care coordination for rare conditions. This research aimed to develop and refine a care coordination taxonomy for people with rare conditions. METHODS: This study had a qualitative design and was conducted in the United Kingdom. To develop a taxonomy, six stages of taxonomy development were followed. We conducted interviews (n = 30 health care professionals/charity representatives/commissioners) and focus groups (n = 4 focus groups, 22 patients/carers with rare/ultra-rare/undiagnosed conditions). Interviews and focus groups were audio-recorded with consent, and professionally transcribed. Findings were analysed using thematic analysis. Themes were used to develop a taxonomy, and to identify which types of coordination may work best in which situations. To refine the taxonomy, we conducted two workshops (n = 12 patients and carers group; n = 15 professional stakeholder group). RESULTS: Our taxonomy has six domains, each with different options. The six domains are: (1) Ways of organising care (local, hybrid, national), (2) Ways of organising those involved in care (collaboration between many or all individuals, collaboration between some individuals, a lack of collaborative approach), (3) Responsibility for coordination (administrative support, formal roles and responsibilities, supportive roles and no responsibility), (4) How often appointments and coordination take place (regular, on demand, hybrid), (5) Access to records (full or filtered access), and (6) Mode of care coordination (face-to-face, digital, telephone). CONCLUSIONS: Findings indicate that there are different ways of coordinating care across the six domains outlined in our taxonomy. This may help to facilitate the development and evaluation of existing and new models of care coordination for people living with rare conditions.

Development of models of care coordination for rare conditions: a qualitative study.

INTRODUCTION: Improving care coordination for people with rare conditions may help to reduce burden on patients and carers and improve the care that patients receive. We recently developed a taxonomy of different ways of coordinating care for rare conditions. It is not yet known which models of care coordination are appropriate in different situations. This study aimed to: (1) explore what types of care coordination may be appropriate in different situations, and (2) use these findings to develop hypothetical models of care coordination for rare conditions. METHODS: To explore appropriateness of different types of care coordination, we conducted interviews (n = 30), four focus groups (n = 22) and two workshops (n = 27) with patients, carers, healthcare professionals, commissioners, and charity representatives. Participants were asked about preferences, benefits and challenges, and the factors influencing coordination. Thematic analysis was used to develop hypothetical models of care coordination. Models were refined following feedback from workshop participants. RESULTS: Stakeholders prefer models of care that: are nationally centralised or a hybrid of national and local care, involve professionals collaborating to deliver care, have clear roles and responsibilities outlined (including administrative, coordinator, clinical and charity roles), provide access to records and offer flexible appointments (in terms of timing and mode). Many factors influenced coordination, including those relating to the patient (e.g., condition complexity, patient's location and ability to coordinate their own care), the healthcare professional (e.g., knowledge and time), the healthcare environment (e.g., resources) and societal factors (e.g., availability of funding). We developed and refined ten illustrative hypothetical models of care coordination for rare conditions. CONCLUSION: Findings underline that different models of care coordination may be appropriate in different situations. It is possible to develop models of care coordination which are tailored to the individual in context. Findings may be used to facilitate planning around which models of care coordination may be appropriate in different services or circumstances. Findings may also be used by key stakeholders (e.g. patient organisations, clinicians and service planners) as a decision-making tool.