What do primary care staff think about patients accessing electronic health records? A focus group study

Background Patients have expressed a growing interest in having easy access to their personal health information, and internationally there has been increasing policy focus on patient and care records being more accessible. Limited research from the UK has qualitatively explored this topic from the primary care staff perspective. This study aimed to understand what primary care staff think about patients accessing electronic health records, highlighting errors in electronic health records, and providing feedback via online patient portals. Methods A focus group study involving 19 clinical and non-clinical primary care staff. Primary care practices were purposively sampled based on practice size and the percentage of patients using online services. Data were analysed inductively using reflexive thematic analysis. Results Three themes were generated: (1) Information – what, why and when? (2) Changing behaviours and protecting relationships, and (3) Secure access and safeguarding. The emotional considerations and consequences for staff and patients featured prominently in the data as an overarching theme. Conclusions Primary care staff described being invested and supportive of patients accessing their electronic health records, and acknowledged the numerous potential benefits for safety. Uncertainty around the parameters of access, the information available and what this might look like in the future, processes for patients highlighting errors in records, relational issues, security and safeguarding and equitable access, were key areas warranting examination in future research

Can Routinely Collected, Patient-Reported Wellness Predict National Early Warning Scores? A Multilevel Modeling Approach

Objective: Measures exist to improve early recognition of and response to deteriorating patients in hospital. However, management of critical illness remains a problem globally; in the United Kingdom, 7% of the deaths reported to National Reporting and Learning System from acute hospitals in 2015 related to failure to recognize or respond to deterioration. The current study explored whether routinely recording patient-reported wellness is associated with objective measures of physiology to support early recognition of hospitalized deteriorating patients. Methods: A prospective observation study design was used. Nurses on four inpatient wards were invited to participate and record patient-reported wellness during every routine observation (where possible) using an electronic observation system. Linear multilevel modeling was used to examine the relationship between patient-reported wellness, and national early warning scores (NEWS), and whether patient-reported wellness predicted subsequent NEWS. Results: A significant positive relationship was found between patient-reported wellness and NEWS recorded at the next observation while controlling for baseline NEWS (β = 0.180, P = 0.033). A significant positive relationship between patient-reported wellness and NEWS (β = 0.229, P = 0.005) recorded during an observation 24 hours later while controlling for baseline NEWS was also found. Patient-reported wellness added to the predictive model for subsequent NEWS. Conclusion: The preliminary findings suggest that patient-reported wellness may predict subsequent improvement or decline in their condition as indicated by objective measurements of physiology (NEWS). Routinely recording patient-reported wellness during observation shows promise for supporting the early recognition of clinical deterioration in practice, although confirmation in larger-scale studies is required

Patient and public co‐creation of healthcare safety and healthcare system resilience: The case of COVID‐19

Introduction Healthcare system resilience is a conceptual approach that seeks to explore how health services adapt and respond to variability in demand and resources. As has been witnessed since the beginning of the COVID-19 pandemic, healthcare services have undergone many reconfigurations. One understudied aspect of how the ‘system’ is able to adapt and respond is the contribution of key stakeholders—patients and families, and in the context of the pandemic, the general public as a whole. This study aimed to understand what people were doing during the first wave of the pandemic to protect the safety of their health, and the health of others from COVID-19, and the resilience of the healthcare system. Methods Social media (Twitter) was used as a method of recruitment due to its ability for social reach. Twenty-one participants took part in 57 semistructured interviews over three time points from June to September 2020. The included an initial interview and invitation to two follow-up interviews after 3 and 6 weeks. Interviews were conducted virtually using Zoom—an encrypted secure video conferencing software. A reflexive thematic analysis approach to analysis was used. Results Three themes, each with its own subthemes were identified in the analysis: (1) A ‘new safety normal’; (2) Existing vulnerabilities and heightened safety and (3) Are we all in this together? Conclusion This study found that the public had a role in supporting the resilience of healthcare services and systems during the first wave of the pandemic by adapting their behaviour to protect themselves and others, and to avoid overwhelming the National Health Service. People who had existing vulnerabilities were more likely to experience safety gaps in their care, and be required to step in to support their safety, despite it being more difficult for them to do so. It may be that the most vulnerable were previously required to do this extra work to support the safety of their care and that the pandemic has just illuminated this issue. Future research should explore existing vulnerabilities and inequalities, and the heightened safety consequences created by the pandemic. Patient and Public Contribution The National Institute for Health Research (NIHR) Yorkshire and Humber Patient Safety Translational Research Centre (NIHR Yorkshire and Humber PSTRC), Patient and Public Involvement and Engagement Research Fellow and NIHR Yorkshire and Humber PSTRC Patient Involvement in Patient Safety theme lay leader are involved in the preparation of a lay version of the findings within this manuscript

Exploring patient safety outcomes for people with learning disabilities in acute hospital settings: a scoping review

Objectives To produce a narrative synthesis of published academic and grey literature focusing on patient safety outcomes for people with learning disabilities in an acute hospital setting. Design Scoping review with narrative synthesis. Methods The review followed the six stages of the Arksey and O’Malley framework. We searched four research databases from January 2000 to March 2021, in addition to handsearching and backwards searching using terms relating to our eligibility criteria—patient safety and adverse events, learning disability and hospital setting. Following stakeholder input, we searched grey literature databases and specific websites of known organisations until March 2020. Potentially relevant articles and grey literature materials were screened against the eligibility criteria. Findings were extracted and collated in data charting forms. Results 45 academic articles and 33 grey literature materials were included, and we organised the findings around six concepts: (1) adverse events, patient safety and quality of care; (2) maternal and infant outcomes; (3) postoperative outcomes; (4) role of family and carers; (5) understanding needs in hospital and (6) supporting initiatives, recommendations and good practice examples. The findings suggest inequalities and inequities for a range of specific patient safety outcomes including adverse events, quality of care, maternal and infant outcomes and postoperative outcomes, in addition to potential protective factors, such as the roles of family and carers and the extent to which health professionals are able to understand the needs of people with learning disabilities. Conclusion People with learning disabilities appear to experience poorer patient safety outcomes in hospital. The involvement of family and carers, and understanding and effectively meeting the needs of people with learning disabilities may play a protective role. Promising interventions and examples of good practice exist, however many of these have not been implemented consistently and warrant further robust evaluation

A multicentre, randomised controlled trial to compare the clinical and cost-effectiveness of Lee Silverman Voice Treatment versus standard NHS Speech and Language Therapy versus control in Parkinson’s disease: a study protocol for a randomised controlled trial

Abstract: Background: Parkinson’s disease (PD) affects approximately 145,519 people in the UK. Speech impairments are common with a reported prevalence of 68%, which increase physical and mental demands during conversation, reliance on family and/or carers, and the likelihood of social withdrawal reducing quality of life. In the UK, two approaches to Speech and Language Therapy (SLT) intervention are commonly available: National Health Service (NHS) SLT or Lee Silverman Voice Treatment (LSVT LOUD®). NHS SLT is tailored to the individuals’ needs per local practice typically consisting of six to eight weekly sessions; LSVT LOUD® comprises 16 sessions of individual treatment with home-based practice over 4 weeks. The evidence-base for their effectiveness is inconclusive. Methods/design: PD COMM is a phase III, multicentre, three-arm, unblinded, randomised controlled trial. Five hundred and forty-six people with idiopathic PD, reporting speech or voice problems will be enrolled. We will exclude those with a diagnosis of dementia, laryngeal pathology or those who have received SLT for speech problems in the previous 2 years. Following informed consent and completion of baseline assessments, participants will be randomised in a 1:1:1 ratio to no-intervention control, NHS SLT or LSVT LOUD® via a central computer-generated programme, using a minimisation procedure with a random element, to ensure allocation concealment. Participants randomised to the intervention groups will start treatment within 4 (NHS SLT) or 7 (LSVT LOUD®) weeks of randomisation. Primary outcome: Voice Handicap Index (VHI) total score at 3 months. Secondary outcomes include: VHI subscales, Parkinson’s Disease Questionnaire-39; Questionnaire on Acquired Speech Disorders; EuroQol-5D-5 L; ICECAP-O; resource utilisation; adverse events and carer quality of life. Mixed-methods process and health economic evaluations will take place alongside the trial. Assessments will be completed before randomisation and at 3, 6 and 12 months after randomisation. The trial started in December 2015 and will run for 77 months. Recruitment will take place in approximately 42 sites around the UK. Discussion: The trial will test the hypothesis that SLT is effective for the treatment of speech or voice problems in people with PD compared to no SLT. It will further test whether NHS SLT or LSVT LOUD® provide greater benefit and determine the cost-effectiveness of both interventions. Trial registration: International Standard Randomised Controlled Trials Number (ISRCTN) Registry, ID: 12421382. Registered on 18 April 2016

A multicentre, randomised controlled trial to compare the clinical and cost-effectiveness of Lee Silverman Voice Treatment versus standard NHS Speech and Language Therapy versus control in Parkinson’s disease: a study protocol for a randomised controlled trial

Abstract: Background: Parkinson’s disease (PD) affects approximately 145,519 people in the UK. Speech impairments are common with a reported prevalence of 68%, which increase physical and mental demands during conversation, reliance on family and/or carers, and the likelihood of social withdrawal reducing quality of life. In the UK, two approaches to Speech and Language Therapy (SLT) intervention are commonly available: National Health Service (NHS) SLT or Lee Silverman Voice Treatment (LSVT LOUD®). NHS SLT is tailored to the individuals’ needs per local practice typically consisting of six to eight weekly sessions; LSVT LOUD® comprises 16 sessions of individual treatment with home-based practice over 4 weeks. The evidence-base for their effectiveness is inconclusive. Methods/design: PD COMM is a phase III, multicentre, three-arm, unblinded, randomised controlled trial. Five hundred and forty-six people with idiopathic PD, reporting speech or voice problems will be enrolled. We will exclude those with a diagnosis of dementia, laryngeal pathology or those who have received SLT for speech problems in the previous 2 years. Following informed consent and completion of baseline assessments, participants will be randomised in a 1:1:1 ratio to no-intervention control, NHS SLT or LSVT LOUD® via a central computer-generated programme, using a minimisation procedure with a random element, to ensure allocation concealment. Participants randomised to the intervention groups will start treatment within 4 (NHS SLT) or 7 (LSVT LOUD®) weeks of randomisation. Primary outcome: Voice Handicap Index (VHI) total score at 3 months. Secondary outcomes include: VHI subscales, Parkinson’s Disease Questionnaire-39; Questionnaire on Acquired Speech Disorders; EuroQol-5D-5 L; ICECAP-O; resource utilisation; adverse events and carer quality of life. Mixed-methods process and health economic evaluations will take place alongside the trial. Assessments will be completed before randomisation and at 3, 6 and 12 months after randomisation. The trial started in December 2015 and will run for 77 months. Recruitment will take place in approximately 42 sites around the UK. Discussion: The trial will test the hypothesis that SLT is effective for the treatment of speech or voice problems in people with PD compared to no SLT. It will further test whether NHS SLT or LSVT LOUD® provide greater benefit and determine the cost-effectiveness of both interventions. Trial registration: International Standard Randomised Controlled Trials Number (ISRCTN) Registry, ID: 12421382. Registered on 18 April 2016

Preparing nurses to work in primary care : educators' perspectives

Aim To report nurse educators’ perspectives of the appropriateness of pre-registration nursing education programmes in preparing nurses to practise in primary care. Method Data were collected through semi-structured telephone and face-to-face interviews with eight nurse educators, and were subject to thematic analysis. Findings Nurse educators believed that nursing education programmes did not adequately prepare newly qualified nurses to work in primary care because they provided limited experience in this setting. Conclusion Factors such as shortage of practice placements in primary care and lack of mentors to supervise and support students were identified as major barriers to student learning and subsequent preparedness to work in primary care

Capturing Parents’ Perspectives of Child Wellness to Support Identification of Acutely Unwell Children in the Emergency Department

Objective Early signs of serious illness can be difficult to recognize in children and a delayed response can result in poor outcomes. Drawing on the unique knowledge of parents and carers may improve identification of the deteriorating child. However, there is a lack of evidence exploring parental perspectives as part of track and trigger systems. This study examines the utility of capturing parent-reported child wellness, using the Patient Wellness Questionnaire for Pediatrics, to support identification of acutely unwell children presenting to the Emergency Department. Methods Parent-reported child wellness was recorded alongside the Pediatric Observation Priority Score (POPS), a multidimensional scoring system akin to a Pediatric Early Warning Score, used as part of routine care. Multiple linear regression assessed the independent effects of 3 variables (parent-reported child wellness, nurse concern, and child age) on POPS and hospital admission. Results Data were collected for 407 children. All 3 variables explained a statistically significant proportion of variance in POPS (F(3, 403) = 7.525, P < 0.001, R2 = 0.053), with parent-reported child wellness (B = 0.223, SE = 0.054, β = 0.202, P < 0.001) having the strongest effect. Approximately 10% of the children with no physiological derangement were rated as “very poorly” by their parents. Conclusions The findings suggest that parents have insight in to the wellness of their children that is reflected in the physiological assessment. Some parents’ perceptions about their child’s wellness were not consistent with the score captured in the same assessment. More work is needed to understand how to use and address parental perspectives and concerns to support clinical decision making and the management of acute illness

Systemic safety inequities for people with learning disabilities: A qualitative integrative analysis of the experiences of English health and social care for people with learning disabilities, their families and carers.

BACKGROUND: Failures in care for people with learning disabilities have been repeatedly highlighted and remain an international issue, exemplified by a disparity in premature death due to poor quality and unsafe care. This needs urgent attention. Therefore, the aim of the study was to understand the care experiences of people with learning disabilities, and explore the potential patient safety issues they, their carers and families raised. METHODS: Two data sources exploring the lived experience of care for people with learning disabilities were synthesised using an integrative approach, and explored using reflexive thematic analysis. This comprised two focus groups with a total of 13 people with learning disabilities and supportive staff, and 377 narratives posted publicly via the feedback platform Care Opinion. RESULTS: The qualitative exploration highlighted three key themes. Firstly, health and social care systems operated with varying levels of rigidity. This contributed to an inability to effectively cater to; complex and individualised care needs, written and verbal communication needs and needs for adequate time and space. Secondly, there were various gaps and traps within systems for this population. This highlighted the importance of care continuity, interoperability and attending to the variation in support provision from professionals. Finally, essential ‘dependency work’ was reliant upon social capital and fulfilled by paid and unpaid caring roles to divergent extents, however, advocacy provided an additional supportive safety net. CONCLUSIONS: A series of safety inequities have been identified for people with learning disabilities, alongside potential protective buffers. These include; access to social support and advocacy, a malleable system able to accommodate for individualised care and communication needs, adequate staffing levels, sufficient learning disabilities expertise within and between care settings, and the interoperability of safety initiatives. In order to attend to the safety inequities for this population, these factors need to be considered at a policy and organisational level, spanning across health and social care systems. Findings have wide ranging implications for those with learning disabilities, their carers and families and health and social care providers, with the potential for international learning more widely. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12939-021-01612-1