Is there a role for patients and their relatives in escalating clinical deterioration in hospital? A systematic review

Background: Measures exist to improve early recognition of, and response to, deteriorating patients in hospital. However, deteriorating patients continue to go unrecognized. To address this, interventions have been developed that invite patients and relatives to escalate patient deterioration to a rapid response team (RRT). Objective: To systematically review articles that describe these interventions and investigate their effectiveness at reducing preventable deterioration. Search strategy: Following PRISMA guidelines, four electronic databases and two web search engines were searched to identify literature investigating patient and relative led escalation. Inclusion criteria: Articles investigating the implementation or use of systems involving patients and relatives in the detection of clinical patient deterioration and escalation of patient care to address any clinical or non-clinical outcomes were included. Articles' eligibility was validated by a second reviewer (20%). Data extraction: Data were extracted according to pre-defined criteria. Data synthesis: Narrative synthesis was applied to included studies. Main results: Nine empirical studies and 36 grey literature articles were included in the review. Limited studies were conducted to establish the clinical effectiveness of patient and relative led escalation. Instead, studies investigated the impact of this intervention on health-care staff and available resources. Although appropriate, this reflects the infancy of research in this area. Patients and relatives did not overwhelm resources by activating the RRT. However, they did activate it to address concerns unrelated to patient deterioration. Conclusions: Activating a RRT may not be the most appropriate or cost-effective method of resolving non-life-threatening concerns

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

Humanizing harm: Using a restorative approach to heal and learn from adverse events

Background: Healthcare is not without risk. Despite two decades of policy focus and improvement efforts, the global incidence of harm remains stubbornly persistent, with estimates suggesting that 10% of hospital patients are affected by adverse events. Methods: We explore how current investigative responses can compound the harm for all those affected—patients, families, health professionals and organizations—by neglecting to appreciate and respond to the human impacts. We suggest that the risk of compounded harm may be reduced when investigations respond to the need for healing alongside system learning, with the former having been consistently neglected. Discussion: We argue that incident responses must be conceived within a relational as well as a regulatory framework, and that this—a restorative approach—has the potential to radically shift the focus, conduct and outcomes of investigative processes. Conclusion: The identification of the preconditions and mechanisms that enable the success of restorative approaches in global health systems and legal contexts is required if their demonstrated potential is to be realized on a larger scale. The policy must be co-created by all those who will be affected by reforms and be guided by restorative principles. Patient or Public Contribution: This viewpoint represents an international collaboration between a clinician academic, safety scientist and harmed patient and family members. The paper incorporates key findings and definitions from New Zealand's restorative response to surgical mesh harm, which was co-designed with patient advocates, academics and clinicians

What can patients tell us about the quality and safety of hospital care? Findings from a UK multicentre survey study

Background Patient safety measurement remains a global challenge. Patients are an important but neglected source of learning; however, little is known about what patients can add to our understanding of safety. We sought to understand the incidence and nature of patient-reported safety concerns in hospital. Methods Feedback about the experience of safety within hospital was gathered from 2471 inpatients as part of a multicentre, waitlist cluster randomised controlled trial of an intervention, undertaken within 33 wards across three English NHS Trusts, between May 2013 and September 2014. Patient volunteers, supported by researchers, developed a classification framework of patient-reported safety concerns from a random sample of 231 reports. All reports were then classified using the patient-developed categories. Following this, all patient-reported safety concerns underwent a two-stage clinical review process for identification of patient safety incidents. Results Of the 2471 inpatients recruited, 579 provided 1155 patient-reported incident reports. 14 categories were developed for classification of reports, with communication the most frequently occurring (22%), followed by staffing issues (13%) and problems with the care environment (12%). 406 of the total 1155 patient incident reports (35%) were classified by clinicians as a patient safety incident according to the standard definition. 1 in 10 patients (264 patients) identified a patient safety incident, with medication errors the most frequently reported incident. Conclusions Our findings suggest that patients can provide insight about safety that complements existing patient safety measurement, with a frequency of reported patient safety incidents that is similar to those obtained via case note review. However, patients provide a unique perspective about hospital safety which differs from and adds to current definitions of patient safety incidents

Developing a research community within an online healthcare feedback platform

Introduction Care Opinion is an online feedback platform supporting patients to author stories about their care. It is not known whether authors would be willing to be involved in improving care through research. The aims of this study were to explore the views and preferences of Care Opinion authors about joining an online research community and to pilot new research community functionality. Methods Five hundred and nine Care Opinion authors were invited to take part in an online survey in June 2019. Survey items included questions about participants' willingness to take part in research and their preferences for supporting processes. Data were analysed descriptively. Authors were invited to consent to join a research community and were asked to participate in three pilot studies. Results One hundred and sixty-three people consented to take part in the survey (32%). Participants indicated they would like to know the time commitment to the project (146, 90%), details about the organization carrying out the research (124, 76%) and safeguarding information (124, 76%). Over half indicated that they did not know how to get involved in healthcare research (87, 53%). Subsequently, 667 authors were invited to join the research community, 183 (27%) accepted, and three studies were matched to their expressed preferences for project attributes or organization type. Conclusion Many people who leave online feedback about their experiences of healthcare are also willing to join a research community via that platform. They have strong preferences for supporting University and NHS research. Eligibility and acceptance rates to join pilot research studies varied. Further work is needed to grow the research community, increase its diversity, and create relevant and varied opportunities to support research. Patient or Public Contribution Four members of the Safety In Numbers patient and public involvement and engagement (PPIE) group advised about survey development

Patient and Family Involvement in Serious Incident Investigations From the Perspectives of Key Stakeholders: A Review of the Qualitative Evidence

Objectives Investigations of healthcare harm often overlook the valuable insights of patients and families. Our review aimed to explore the perspectives of key stakeholders when patients and families were involved in serious incident investigations. Methods The authors searched three databases (Medline, PsycInfo, and CINAHL) and Connected Papers software for qualitative studies in which patients and families were involved in serious incident investigations until no new articles were found. Results Twenty-seven papers were eligible. The perspectives of patients and families, healthcare professionals, nonclinical staff, and legal staff were sought across acute, mental health and maternity settings. Most patients and families valued being involved; however, it was important that investigations were flexible and sensitive to both clinical and emotional aspects of care to avoid compounding harm. This included the following: early active listening with empathy for trauma, sincere and timely apology, fostering trust and transparency, making realistic timelines clear, and establishing effective nonadversarial communication. Most staff perceived that patient and family involvement could improve investigation quality, promote an open culture, and help ensure future safety. However, it was made difficult when multidisciplinary input was absent, workload and staff turnover were high, training and support needs were unmet, and fears surrounded litigation. Potential solutions included enhancing the clarity of roles and responsibilities, adequately training staff, and providing long and short-term support to stakeholders. Conclusions Our review provides insights to ensure patient and family involvement in serious incident investigations considers both clinical and emotional aspects of care, is meaningful for all key stakeholders, and avoids compounding harm. However, significant gaps in the literature remain

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

A qualitative formative evaluation of a patient facing intervention to improve care transitions for older people moving from hospital to home

Background The Partners at Care Transitions (PACTs) intervention was developed to support older people's involvement in hospital to improve outcomes at home. A booklet, question card, record sheet, induction leaflet, and patient-friendly discharge letter support patients to be more involved in their health and wellbeing, medications, activities of daily living and post-discharge care. We aimed to assess intervention acceptability, identify implementation tools, and further develop the intervention. Methods This was a qualitative formative evaluation involving three wards from one hospital. We recruited 25 patients aged 75 years and older. Ward staff supported intervention delivery. Data were collected in wards and patients' homes, through semi-structured interviews, observation, and documentary analysis. Data were analysed inductively and iteratively with findings sorted according to the research aims. Results Patients and staff felt there was a need for, and understood the purpose of, the PACT intervention. Most patients read the booklet but other components were variably used. Implementation challenges included time, awareness, and balancing intervention benefits against risks. Changes to the intervention and implementation included clarifying the booklet's messages, simplifying the discharge letter to reduce staff burden, and using prompts and handouts to promote awareness. Conclusion The PACT intervention offers a promising new way to improve care transitions for older people by supporting patient involvement in their care. After further development of the intervention and implementation package, it will undergo further testing. Patient or Public Contribution This study regularly consulted a panel representing the local patient community, who supported the development of this intervention and its implementation

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