Using the UK standards for public involvement to evaluate the public involvement sections of annual reports from NIHR managed research centres.

BACKGROUND: Within the United Kingdom (UK), the National Institute for Health and Care Research is the largest funder of health and social care research, and additionally funds research centres that support the development and delivery of research. Each year, award-holders of these research centres are required to write a report about their activities, including a summary of Patient and Public Involvement and Engagement (PPIE) activities. This study aimed to evaluate the PPIE sections of annual reports to identify best practice and challenges; this could inform future delivery of PPIE activities. METHODS: A framework documentary analysis informed by the six UK Standards for Public Involvement ('Inclusive opportunities', 'Working together', 'Support and learning', 'Communications', 'Impact' and 'Governance') was conducted on 112 reports. A quality improvement framework ('Insights') was used to evaluate quality as one of: 'Welcoming', 'Listening', 'Learning' and 'Leading'. Recommendations from this review were co-developed with stakeholders and public contributors. RESULTS: Reports documented varying levels of quality in PPIE activities which spanned across all six UK Standards. Award-holders either intended to, or were actively working towards, increasing access and inclusivity of public involvement opportunities. Methods of working with public contributors were varied, including virtual and in-person meetings. Most award-holders offered PPIE support and learning opportunities for both public contributors and staff. Some award-holders invited public contributors to co-produce communication plans relating to study materials and research findings. The impact of public involvement was described in terms of benefits to public contributors themselves, and on an organisation and project level. Many award-holders reported inviting public contributors to share decision-making within and about governance structures. CONCLUSIONS: This evaluation identified that most annual reports contained evidence of good quality PPIE practice with learning from public contributors. Using the UK Standards and Insights framework enabled exploration of the breadth and quality of PPIE activities. Recommendations include the need for a platform for centres to access and share PPIE best practice and for centres to collaborate with local and national partners to build relationships with the public through inclusive community engagement.

WHAT DID WE DO?: Within the United Kingdom (UK) the National Institute for Health and Care Research (NIHR) is the largest funder of health and social care research. The NIHR also funds research centres that support the delivery of research studies. Each year, award-holders of these research centres are required to write a report describing their activities. These reports include activities related to Patient and Public Involvement and Engagement (PPIE). We aimed to evaluate the PPIE sections of these reports to identify best practice and challenges. This could, in turn, inform and aid researchers to enhance their PPIE approaches and improve how they work with the public in research. HOW DID WE DO IT?: We looked at 112 reports using the six UK Standards for Public Involvement (these include: 'Inclusive opportunities', 'Working together', 'Support and learning', 'Communications', 'Impact' and 'Governance'). We used a quality improvement framework named 'Insights' to categorise PPIE practice into one of four levels of increasing quality: 'Welcoming', 'Listening', 'Learning' and 'Leading'. WHAT ARE THE FINDINGS?: PPIE activities, of varying quality, covered all six UK Standards. A number of award-holders either intended, or were actively working towards, increasing access and inclusivity of public involvement opportunities. Methods of working with public contributors were varied. Most award-holders offered support and learning opportunities for both PPIE members and staff. Some award-holders invited PPIE members to co-produce communication plans relating to study materials and research findings. The impact of public involvement was described in terms of benefits to PPIE members themselves, and on a project and award-holder level. Many award-holders reported inviting public contributors to share decision-making within and about governance structures. WHAT'S THE BIGGER PICTURE?: This evaluation identified that the Insights framework was useful in determining the quality of PPIE activities relating to each UK Standard. Recommendations for improving the quality of future PPIE activities were co-developed with staff from different research centres, senior leaders within the NIHR, PPIE leads and public contributors.

Co-production as an approach to developing stakeholder partnerships to reduce mental health inequalities: an evaluation of a pilot service.

Aim This study aimed to evaluate a pilot cross-sector initiative - bringing together public health, a community group, primary mental health teams and patients - in using co-production approaches to deliver a mental health service to meet the needs of the black and minority ethnic communities. BACKGROUND: Black and minority ethnic communities continue to face inequalities in mental health service access and provision. They are under-represented in low-level interventions as they are less likely to be referred, and more likely to disengage from mainstream mental health services. Effective models that lead to improved access and better outcomes are yet to be established. It has long been recognised that to be effective, services need to be more culturally competent, which may be achieved through a co-production approach. METHODS: This study aimed to evaluate the role of co-production in the development of a novel community mental health service for black and minority ethnic service users. Qualitative research methods, including semi-structured interviews and focus groups, were used to collect data to examine the use of co-production methods in designing and delivering an improved mental health service. Findings Twenty-five patients enrolled into the study; of these, 10 were signposted for more intensive psychological support. A 75% retention rate was recorded (higher than is generally the case for black and minority ethnic service users). Early indications are that the project has helped overcome barriers to accessing mental health services. Although small scale, this study highlights an alternative model that, if explored and developed further, could lead to delivery of patient-centred services to improve access and patient experience within mental health services, particularly for black and minority ethnic communities.

"It's a complex mesh"- how large-scale health system reorganisation affected the delivery of the immunisation programme in England: a qualitative study.

BACKGROUND: The English health system experienced a large-scale reorganisation in April 2013. A national tri-partite delivery framework involving the Department of Health, NHS England and Public Health England was agreed and a new local operational model applied. Evidence about how health system re-organisations affect constituent public health programmes is sparse and focused on low and middle income countries. We conducted an in-depth analysis of how the English immunisation programme adapted to the April 2013 health system reorganisation, and what facilitated or hindered the delivery of immunisation services in this context. METHODS: A qualitative case study methodology involving interviews and observations at national and local level was applied. Three sites were selected to represent different localities, varying levels of immunisation coverage and a range of changes in governance. Study participants included 19 national decision-makers and 56 local implementers. Two rounds of interviews and observations (immunisation board/committee meetings) occurred between December 2014 and June 2015, and September and December 2015. Interviews were audio recorded and transcribed verbatim and written accounts of observed events compiled. Data was imported into NVIVO 10 and analysed thematically. RESULTS: The new immunisation programme in the new health system was described as fragmented, and significant effort was expended to regroup. National tripartite arrangements required joint working and accountability; a shift from the simpler hierarchical pre-reform structure, typical of many public health programmes. New local inter-organisational arrangements resulted in ambiguity about organisational responsibilities and hindered data-sharing. Whilst making immunisation managers responsible for larger areas supported equitable resource distribution and strengthened service commissioning, it also reduced their ability to apply clinical expertise, support and evaluate immunisation providers' performance. Partnership working helped staff adapt, but the complexity of the health system hindered the development of consistent approaches for training and service evaluation. CONCLUSION: The April 2013 health system reorganisation in England resulted in significant fragmentation in the way the immunisation programme was delivered. Some of this was a temporary by-product of organisational change, other more persistent challenges were intrinsic to the complex architecture of the new health system. Partnership working helped immunisation leaders and implementers reconnect and now the challenge is to assess how inter-agency collaboration can be strengthened.

A qualitative evaluation to explore the suitability, feasibility and acceptability of using a 'celebration card' intervention in primary care to improve the uptake of childhood vaccinations.

BACKGROUND: Childhood vaccination remains a primary mechanism for reducing the burden of infectious disease. In the United Kingdom, as in many countries, a sustained effort is required to ensure that vaccination targets are met to afford protection to the whole population from vaccine preventable disease. The Celebrate and Protect programme is a collaborative partnership developed to improve the uptake of childhood vaccination across a number of boroughs within London through the use of a celebration card to encourage attendance for vaccination and enhance relationships between general practices and the parents/carers of children. METHODS: This study was undertaken to assess the suitability, feasibility and acceptability of the Celebrate and Protect programme across nine boroughs in London. Data were collected either from telephone interviews (n = 24) or from focus groups (n = 31). A total of 55 key informants were included in the study, representing strategic, commissioning or policy leads, healthcare professionals and primary care teams delivering vaccinations and parents/carers of children under five. RESULTS: The analysis of data identified that whilst parents/carers saw the celebration card positively this raised the issue of 'vaccine hesitancy' and the lack of information that parents/carers have to make informed decisions about vaccination. Similarly, healthcare professionals viewed the programme positively and felt that it was deliverable within existing resources although they raised wider questions about on-going sustainability and about quantitative data collection. In relation to the collaboration between primary care and a pharmaceutical company in developing the Celebrate and Protect programme, it was generally felt that, provided appropriate governance is in place, it was a pragmatic approach in which the benefits outweighed any perceived disadvantages. DISCUSSION: The Celebrate and Protect programme was seen as an innovative collaborative programme to engage with parents and carers of children in order to improve relationships between service users and providers and subsequently increase vaccination uptake. The analysis demonstrates that that the celebration card is suitable for its purpose, acceptable to both healthcare professionals and to parents/carers of children and the Celebrate and Protect programme has been able to deliver its aims. CONCLUSION: Whilst the delivery of the 'celebration card' intervention in primary met its objectives there are some outstanding issues in terms of the sustainability of the initiative and the ability to demonstrate quantitative improvements in vaccination uptake rates.