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 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.

Unpacking the Cinderella black box of complex intervention development through the Partners at Care Transitions (PACT) programme of research.

INTRODUCTION: Complex intervention development has been described as the 'Cinderella' black box in health services research. Greater transparency in the intervention development process is urgently needed to help reduce research waste. METHODS: We applied a new consensus-based framework for complex intervention development to our programme of research, in which we developed an intervention to improve the safety and experience of care transitions for older people. Through this process, we aimed to reflect on the framework's utility for intervention development and identify any important gaps within it to support its continued development. FINDINGS: The framework was a useful tool for transparent reporting of the process of complex intervention development. We identified potential 'action' gaps in the framework including 'consolidation of evidence' and 'development of principles' that could bracket and steer decision-making in the process. CONCLUSIONS: We consider that the level of transparency demonstrated in this report, aided through use of the framework, is essential in the quest for reducing research waste. PATIENT OR PUBLIC CONTRIBUTION: We have involved our dedicated patient and public involvement group in all work packages of this programme of research. Specifically, they attended and contributed to co-design workshops and contributed to finalizing the intervention for the pilot evaluation. Staff also participated by attending co-design workshops, helping us to prioritize content ideas for the intervention and supporting the development of intervention components outside of the workshops.

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.

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.

Differences in comprehending and acting on pandemic health risk information: a qualitative study using mental models.

BACKGROUND: A worldwide pandemic of a new and unknown virus is characterised by scientific uncertainty. However, despite this uncertainty, health authorities must still communicate complex health risk information to the public. The mental models approach to risk communication describes how people perceive and make decisions about complex risks, with the aim of identifying decision-relevant information that can be incorporated into risk communication interventions. This study explored how people use mental models to make sense of scientific information and apply it to their lives and behaviour in the context of COVID-19. METHODS: This qualitative study enrolled 15 male and female participants of different ages, with different levels of education and occupational backgrounds and from different geographical regions of Norway. The participants were interviewed individually, and the interview data were subjected to thematic analysis. The interview data were compared to a expert model of COVID-19 health risk communication based on online information from the Norwegian Institute of Public Health. Materials in the interview data not represented by expert model codes were coded inductively. The participants' perceptions of and behaviours related to health risk information were analysed across three themes: virus transmission, risk mitigation and consequences of COVID-19. RESULTS: The results indicate that people placed different meanings on the medical and scientific words used by experts to explain the pandemic (e.g., virus transmission and the reproduction number). While some people wanted to understand why certain behaviour and activities were considered high risk, others preferred simple, clear messages explaining what to do and how to protect themselves. Similarly, information about health consequences produced panic in some interviewees and awareness in others. CONCLUSION: There is no one-size-fits-all approach to public health risk communication. Empowering people with decision-relevant information necessitates targeted and balanced risk communication.

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.

How do we educate medical students interprofessionally about patient safety? A scoping review.

Medical education has an important role in developing attitudes, behaviors and cultures that support safe care. Increasingly, however, research has argued for a more interprofessional approach to be taken. This scoping review examines the design and impact of interprofessional education interventions involving medical students that focus on patient safety. We systematically searched PubMed, EMBASE, PsycINFO and CINAHL between January 2000 and November 2019. Studies were eligible if they included medical students and at least one other profession, interactive learning, a strong emphasis on patient safety in the learning objectives, and an empirical method of evaluation. Forty-three studies met these criteria and the diverse range of approaches to intervention design and method of evaluation are detailed in this review. We found that interprofessional patient safety education interventions are generally well received by students with knowledge and skill gain documented; several also reported changes in student behaviour. However, the lack of empirically driven study designs, combined with the lack of rigour when reporting, makes it difficult to draw clear comparisons. Future research should address this, and in particular, report how and why the intervention has been designed to be delivered interprofessionally.

Health authorities' health risk communication with the public during pandemics: a rapid scoping review.

BACKGROUND: Responses from the H1N1 swine flu pandemic and the recent COVID-19 coronavirus pandemic provide an opportunity for insight into the role of health authorities' ways of communicating health risk information to the public. We aimed to synthesise the existing evidence regarding different modes of communication used by health authorities in health risk communication with the public during a pandemic. METHODS: We conducted a rapid scoping review. MEDLINE and EMBASE were searched for publications in English from January 2009 through October 2020, covering both the full H1N1 pandemic and the response phase during the COVID-19 pandemic. The search resulted in 1440 records, of which 48 studies met our eligibility criteria. RESULTS: The present review identified studies across a broad interdisciplinary field of health risk communication. The majority focused on the H1N1 pandemic and the COVID-19 pandemic. A content analysis of the studies identified three categories for modes of communication: i) communication channels, ii) source credibility and iii) how the message is communicated. The identified studies on social media focused mainly on content and engagement, while studies on the effect of the use of social media and self-protective behaviour were lacking. Studies on the modes of communication that take the diversity of receivers in the field into account are lacking. A limited number of studies of health authorities' use of graphic and audio-visual means were identified, yet these did not consider/evaluate creative communication choices. CONCLUSION: Experimental studies that investigate the effect of health authorities' videos and messages on social media platforms and self-protective behaviour are needed. More studies are needed across the fields of health risk communication and media studies, including visual communication, web design, video and digital marketing, at a time when online digital communication is central to reaching the public.

Resilient and responsive healthcare services and systems: challenges and opportunities in a changing world.

BACKGROUND: Resilient and responsive healthcare systems is on the agenda as ever before. COVID-19, specialization of services, resource demands, and technology development are all examples of aspects leading to adaptations among stakeholders at different system levels whilst also attempting to maintain high service quality and safety. This commentary sets the scene for a journal collection on Resilient and responsive health systems in a changing world. The commentary aims to outline main challenges and opportunities in resilient healthcare theory and practice globally, as a backdrop for contributions to the collection. MAIN TEXT: Some of the main challenges in this field relate to a myriad of definitions and approaches to resilience in healthcare, and a lack of studies having multilevel perspectives. Also, the role of patients, families, and the public in resilient and responsive healthcare systems is under researched. By flipping the coin, this illustrates opportunities for research and practice and raise key issues that future resilience research should pay attention to. The potential of combining theoretical lenses from different resilience traditions, involvement of multiple stakeholders in co-creating research and practice improvement, and modelling and visualizing resilient performance are all opportunities to learn more about how healthcare succeeds under stress and normal operations. CONCLUSION: A wide understanding of resilience and responsiveness is needed to support planning and preparation for future disasters and for handling the routine small-scale adaptation. This collection welcomes systematic reviews, quantitative, qualitative, and mixed-methods research on the topic of resilience and responsiveness in all areas of the health system.