Exploring the theory, barriers and enablers for patient and public involvement across health, social care and patient safety:a systematic review of reviews

BACKGROUND: The emergence of patient and public involvement (PPI) in healthcare in the UK can be traced as far back as the 1970s. More recently, campaigns by harmed patients have led to a renewed focus on strengthening PPI. There is a growing awareness of the benefits of PPI in research as well as a need to address power inequities and a lack of diversity and inclusion. This review was undertaken to look at evidence for theories, barriers and enablers in PPI across health, social care and patient safety that could be used to strengthen PPI and address a perceived knowledge and theory gap with PPI in patient safety. METHODS: We searched MEDLINE, EMBASE and PsycINFO from inception to August 2018, using both MeSH and free-text terms to identify published empirical literature. Protocols in PROSPERO were also searched to identify any systematic reviews in progress. The extracted information was analysed using a narrative approach, which synthesises data using a descriptive method. RESULTS: Forty-two reviews were identified and grouped by key outcomes. Twenty-two papers mentioned theory in some form, 31 mentioned equality and diversity (although with no theory mentioned in this area), and only 19 cited equality and diversity as a barrier or enabler. Thirty-four reviews identified barriers and enablers at different organisational levels: personal/individual; attitudes; health professional; roles and expectations; knowledge, information and communication; financing and resourcing; training; general support; recruitment and representation, PPI methods and working with communities and addressing power dynamics. CONCLUSIONS: The review findings suggest that a commitment to PPI and partnership working is dependent on taking a whole system approach. This needs to consider the complex individual and organisational enablers and constraints to this process and address imbalances of power experienced by different groups. Addressing equality and diversity and use of a theory-driven approach to guide PPI are neglected areas. The long tradition of involvement across health and social care can provide considerable expertise in thinking about ways to strengthen approaches to PPI. This is especially important in patient safety, with a much newer tradition of developing PPI than other areas of healthcare

Exploring the theory, barriers and enablers for patient and public involvement across health, social care and patient safety:a protocol for a systematic review of reviews

Introduction The emergence of patient and public involvement (PPI) in healthcare in the UK can be traced as far back as the 1970s. More recently, campaigns by harmed patients and their relatives have emerged as a result of clinical failings in the NHS, challenging paternalistic healthcare, which have led to a new focus on PPI in quality and safety, nationally and internationally. Evidence suggests that PPI within patient safety is often atheoretical and located within a biomedical discourse. This review will explore the literature on PPI across patient safety, healthcare and social care to identify theory, barriers and enablers that can be used to develop PPI in patient safety. Methods and analysis Systematic searches of three electronic bibliographic databases will be conducted, using both MeSH and free-text terms to identify empirical literature published from database inception to May 2017. The screening process will involve input from at least two researchers and any disagreement will be resolved through discussion with a third reviewer. Initial inclusion and exclusion criteria have been developed and will be refined iteratively throughout the process. Data extraction from included articles will be conducted by at least two researchers using a data extraction form. Extracted information will be analysed using a narrative review approach, which synthesises data using a descriptive method. Ethics and Dissemination No ethical approval is required for this review as no empirical data were collected. We believe that the findings and recommendations from this review will be particularly relevant for an audience of academics and policymakers. The findings will, therefore, be written up and disseminated in international peer-reviewed journals and academic conferences with a health focus. They will also be disseminated to leading health policy organisations in the NHS, such as NHS England and NHS Improvement and national policy bodies such as the Health Foundation

COVID-19 and Co-production in Health and Social Care Vol 2:Volume 2: Co-production Methods and Working Together at a Distance

EPDF and EPUB available Open Access under CC-BY-NC-ND licence. Groups most severely affected by COVID-19 have tended to be those marginalised before the pandemic and are now being largely ignored in developing responses to it. This two-volume set of Rapid Responses explores the urgent need to put co-production and participatory approaches at the heart of responses to the pandemic and demonstrates how policymakers, health and social care practitioners, patients, service users, carers and public contributors can make this happen. The second volume focuses on methods and means of co-producing during a pandemic. It explores a variety of case studies from across the global North and South and addresses the practical considerations of co-producing knowledge both now - at a distance - and in the future when the pandemic is over

COVID-19 and Co-production in Health and Social Care Research, Policy, and Practice

EPDF and EPUB available Open Access under CC-BY-NC-ND licence. Groups most severely affected by COVID-19 have tended to be those marginalised before the pandemic and are now largely being ignored in developing responses to it. This two-volume set of Rapid Responses explores the urgent need to put co-production and participatory approaches at the heart of responses to the pandemic and demonstrates how policymakers, health and social care practitioners, patients, service users, carers and public contributors can make this happen. The first volume investigates how, at the outset of the pandemic, the limits of existing structures severely undermined the potential of co-production. It also gives voice to a diversity of marginalised communities to illustrate how they have been affected and to demonstrate why co-produced responses are so important both now during this pandemic and in the future

COVID-19 ethnic inequalities in mental health and multimorbidities: protocol for the COVEIMM study

PURPOSE: The COVID-19 pandemic may have exacerbated ethnic health inequalities, particularly in people with multiple long-term health conditions, the interplay with mental health is unclear. This study investigates the impact of the pandemic on the association of ethnicity and multimorbidity with mortality/service use among adults, in people living with severe mental illnesses (SMI). METHODS: This study will utilise secondary mental healthcare records via the Clinical Record Interactive Search (CRIS) and nationally representative primary care records through the Clinical Practice Interactive Research Database (CPRD). Quasi-experimental designs will be employed to quantify the impact of COVID-19 on mental health service use and excess mortality by ethnicity, in people living with severe mental health conditions. Up to 50 qualitative interviews will also be conducted, co-produced with peer researchers; findings will be synthesised with quantitative insights to provide in-depth understanding of observed associations. RESULTS: 81,483 people in CRIS with schizophrenia spectrum, bipolar or affective disorder diagnoses, were alive from 1st January 2019. Psychiatric multimorbidities in the CRIS sample were comorbid somatoform disorders (30%), substance use disorders (14%) and personality disorders (12%). In CPRD, of 678,842 individuals with a prior probable diagnosis of COVID-19, 1.1% (N = 7493) had an SMI diagnosis. People in the SMI group were more likely to die (9% versus 2% in the non-SMI sample) and were more likely to have mental and physical multimorbidities. CONCLUSION: The effect of COVID-19 on people from minority ethnic backgrounds with SMI and multimorbidities remains under-studied. The present mixed methods study aims to address this gap

Severe mental illnesses and mortality following COVID-19 infection: Data linkage study using the Clinical Practice Research Database (CPRD).

Background The association of COVID-19 infection with death in people with severe mental illnesses (SMI), and the relationship to multimorbidities/ underlying health conditions ethnicity is unclear. Health records linked to COVID-19 tests data could help to inform this knowledge gap. Objective To determine the risk of death in people with SMI following COVID-19 infection compared to reference groups and assess whether excess mortality is accounted through underlying health conditions or further elevated in minority ethnic groups. Design, setting and participants Nationally representative cohort study using primary care data from the Clinical Practice Research Database (CPRD), with participants followed from the start of the pandemic in 2020, for 1.5 years, covering England, Wales and Northern Ireland. For consenting practices, CPRD data was linked to COVID-19 data Public Health England (PHE) Second Generation Surveillance System (SGSS), PHE COVID-19 Hospitalisation in England Surveillance System (CHESS), and Intensive Care National Audit and Research Centre (ICNARC) data on COVID-10 intensive care admissions. The cohort comprised 795,836 individuals, with 7,493 individuals with SMI and a positive COVID-19 test (“SMI/COVID-19”). Comparison groups were: 2,325 individuals with SMI/ testing negative for COVID-19 (“SMI/ non COVID-19”), 657,414 individuals from a non-SMI group/ testing positive for COVID-19 (“non-SMI/ COVID-19”), and 128,604 individuals from a non-SMI group/ testing negative for COVID-19 (“non-SMI/ non-COVID-19”). Exposures SMI defined as the presence of schizophrenia, schizoaffective disorder, bipolar disorder, or affective disorders with psychosis, according to the International Classification of Mental Disorders (ICD-10). COVID-19 diagnoses identified through confirmed laboratory tests and clinical diagnoses. Outcomes All-cause mortality Results A higher proportion of SMI patients with COVID-19 were obese (37% versus 22% in the non-SMI/non-COVID-19 group), current smokers (27% versus 23% in the non-SMI/non-COVID-19 group), had underlying health conditions, and were Black Caribbean/ Black African (5% versus 1% in the non-SMI/non-COVID-19 group). Relative to the non-SMI/ non-COVID-19 group, the SMI/ COVID-19 group had an elevated risk of death (age and sex-adjusted hazard ratio (aHR) 5.03 (95%CI: 4.61-5.54)). This was elevated to a lesser extent, in the SMI/ non COVID-19 group (aHR: 1.93 (95%CI: 1.54-2.41)) and in the non-SMI/ COVID-19 group (aHR: 2.85 (95%CI: 2.72-2.98). Excess risk persisted after adjusting for tobacco use, weight and comorbidities. Mortality trends were similar across groups by ethnicity. Risk of death was highest for the SMI/ COVID-19 group during the first wave of infection in the UK, however excess mortality was still evident and substantially elevated at the second wave also. Conclusions People living with SMI are at an increased risk of death compared to population controls; this excess risk is further elevated following COVID-19 infection, with similar trends by ethnicity. Underlying health conditions only partially account for deaths following COVID-19 infection in this group

Impact on mental health care and on mental health service users of the COVID-19 pandemic: a mixed methods survey of UK mental health care staff

PURPOSE: The COVID-19 pandemic has potential to disrupt and burden the mental health care system, and to magnify inequalities experienced by mental health service users. METHODS: We investigated staff reports regarding the impact of the COVID-19 pandemic in its early weeks on mental health care and mental health service users in the UK using a mixed methods online survey. Recruitment channels included professional associations and networks, charities, and social media. Quantitative findings were reported with descriptive statistics, and content analysis conducted for qualitative data. RESULTS: 2,180 staff from a range of sectors, professions, and specialties participated. Immediate infection control concerns were highly salient for inpatient staff, new ways of working for community staff. Multiple rapid adaptations and innovations in response to the crisis were described, especially remote working. This was cautiously welcomed but found successful in only some clinical situations. Staff had specific concerns about many groups of service users, including people whose conditions are exacerbated by pandemic anxieties and social disruptions; people experiencing loneliness, domestic abuse and family conflict; those unable to understand and follow social distancing requirements; and those who cannot engage with remote care. CONCLUSION: This overview of staff concerns and experiences in the early COVID-19 pandemic suggests directions for further research and service development: we suggest that how to combine infection control and a therapeutic environment in hospital, and how to achieve effective and targeted tele-health implementation in the community, should be priorities. The limitations of our convenience sample must be noted