Reflections from the 'Hold the door open' project: Inviting older adults across the UK to shape dissemination of health research findings.

BACKGROUND: This project sought to expand patient and public involvement (PPI) practices to the development of research finding dissemination with people aged 55+ years. The project is innovative due to its UK-wide approach and use of PPI to plan better ways to share findings of health research with older adults, extending PPI beyond research project initiation to support dissemination activities. OBJECTIVE: The aim of this study is to understand how to develop effective public engagement activities with older adults to disseminate findings of health research. We hope to promote greater inclusivity and advance our understanding of this demographic. METHODS: This project combined three approaches: (i) an online questionnaire to ask what activities older adults enjoy; (ii) online planning workshops seeking public contributors' input in event planning and (iii) community events to share research findings and raise awareness of PPI. Activities were carried out in Cardiff, Belfast, Glasgow and Tewkesbury. RESULTS: The planning workshops clarified that in-person activities and offering options for activities were important. Based on feedback from our contributors, all our events focused around a talk and question and answer session. Other short activities included light exercise and a writing activity. DISCUSSION: Our multiphase approach helped us develop informative activities that reflected the questionnaire results and the feedback from the workshops, as we tailored our events to each location. A phased approach allowed both researchers and contributors to gradually deepen their understanding. CONCLUSION: Further awareness raising is needed to develop the role older adults currently hold in health research activities. Working closely with existing communities can help broaden diversity. PATIENT OR PUBLIC CONTRIBUTION: Thirty-three public contributors helped facilitate this project. Two of these also contributed to this article by writing a reflection of their experiences, one of whom also provided feedback for the article.

Working with public contributors in Parkinson's research: What were the changes, benefits and learnings? A critical reflection from the researcher and public contributor perspective.

INTRODUCTION: This paper provides a critical reflection from both the researcher and public contributor (PC) perspective on the benefits and the learnings taken from involving PCs in research related to Parkinson's. APPROACH TO PATIENT AND PUBLIC INVOLVEMENT (PPI): This paper reports on how PCs shaped the design and development of the PRIME-UK research programme study materials through input into information leaflets, consent forms and other patient-facing documents used across three studies within the PRIME-UK research programme. The PRIME-UK research programme is designed to improve the quality of life of people with Parkinson's and this project included three studies: a cross-sectional study, a randomised control trial and a qualitative study. We captured these impacts using Public Involvement Impact Logs, which provide a framework allowing researchers and PCs to report on the learnings, immediate outcomes and impacts from PPI. For this project, the impact logs enabled us to provide reflections from PCs and researchers on the process of involving 'the public' in Parkinson's research. FINDINGS: This paper builds on existing evidence of the range of benefits and challenges that emerge from working with patients and the public in Parkinson's research; this includes reflecting on the changes made to the study materials and benefits for the people involved. Four themes emerged from the reflections that were common to the researchers and PCs; these were the importance of providing a supportive environment; recognition of the benefit of the evaluation of the impact of PPI; acknowledgement that engagement of PPI can make a positive difference to the research process and that timely communication and the use of face-to-face communication, where available, is key. Furthermore, we demonstrate how impact logs provide a useful and straightforward tool for evaluating public involvement practices and supporting the feedback process. CONCLUSION: We offer key recommendations for involving patients and the public in Parkinson's research and suggest approaches that could be implemented to capture the impacts of public involvement. PUBLIC CONTRIBUTION: Public contributors (PCs) were involved in the design and development of the participant information leaflets, consent forms and other patient-facing documents used for studies within the PRIME-UK research programme. In addition, PCs evaluated their involvement using impact logs and co-authored this paper.

How do we engage people in testing for COVID-19? A rapid qualitative evaluation of a testing programme in schools, GP surgeries and a university.

BACKGROUND: The UK Scientific Advisory Group for Emergencies (SAGE) emphasises the need for high levels of engagement with communities and individuals to ensure the effectiveness of any COVID-19 testing programme. A novel pilot health surveillance programme to assess the feasibility of weekly community RT-LAMP (Reverse transcription loop-mediated isothermal amplification) testing for the SARS-CoV-2 virus using saliva samples collected at home was developed and piloted by the University of Southampton and Southampton City Council. METHODS: Rapid qualitative evaluation was conducted to explore experiences of those who took part in the programme, of those who declined and of those in the educational and healthcare organisations involved in the pilot testing who were responsible for roll-out. This included 77 interviews and 20 focus groups with 223 staff, students, pupils and household members from four schools, one university, and one community healthcare NHS trust. The insights generated and informed the design and modification of the Southampton COVID-19 Saliva Testing Programme and the next phase of community-testing. RESULTS: Discussions revealed that high levels of communication, trust and convenience were necessary to ensure people's engagement with the programme. Participants felt reassured by and pride in taking part in this novel programme. They suggested modifications to reduce the programme's environmental impact and overcome cultural barriers to participation. CONCLUSIONS: Participants' and stakeholders' motivations, challenges and concerns need to be understood and these insights used to modify the programme in a continuous, real-time process to ensure and sustain engagement with testing over the extended period necessary. Community leaders and stakeholder organisations should be involved throughout programme development and implementation to optimise engagement.

World Cafés as a participatory approach to understanding research agendas in primary care with underserved communities: reflections, challenges and lessons learned.

BACKGROUND: Certain communities are underserved by research, resulting in lower inclusion rates, under researched health issues and a lack of attention to how different communities respond to health interventions. Minoritised ethnic groups are often underserved by research and services. They experience health inequalities and face significant barriers to accessing health services. It is recognised that new approaches are needed to reach underserved communities and make research more relevant. The purpose of this work was to utilise World Cafés, a participatory method, to explore research agendas with diverse communities. METHODS: Two World Cafés were conducted as research agenda setting activities with individuals from minoritised ethnic communities in Bristol, UK. World Café 1 explored Black and Asian women's perspectives about supporting mental health. World Café 2 with men from the Somali community, focused on prostate cancer. Community members co-developed the focus and questions of each World Café and were also instrumental in recruiting individuals to the sessions and facilitating discussions, including translation. Audio and written records were made of the discussions and from these key issues about each topic were identified, and a visual representation of the discussion was also generated. These were shared with participants to check for accuracy. RESULTS: Community members identified a range of issues that are important to them in relation to mental health and prostate cancer, including barriers to help seeking and accessing primary and secondary care, ideas for service improvements and a need for health information that is accessible and culturally relevant. CONCLUSIONS: World Cafés are a flexible method that can be successfully adapted for research agenda setting with individuals from minoritised ethnic communities. The role of community members in co-developing the focus of sessions, recruiting community members and co-facilitating sessions is crucial to this success. The discussions at both World Cafés provided a rich insight into the experiences of participants in relation to the topics mental health and prostate cancer and identified issues that are important to these communities that will be followed-up with communities, researchers and clinicians to co-develop research and service improvement strategies.

People from minoritised ethnic groupsgroups can have difficulty getting health care. They may also be left out of health research. There is a need to include a more diverse group of people in health research. World Cafés are an accessible way to listen to people by getting them to talk to each other about different questions and topics.We did this work to see if World Cafés are a helpful way to talk to people from minoritised ethnic groups about health. We wanted to learn what things are important to people around mental health and prostate cancer. We also wanted to see if designing and running the World Café with people from the same communities as people taking part in the World Cafés is a good way to do this. We worked together with people from racial and ethnic minorities to: Choose questions and topics, Ask people to take part Get people talking and write down what was said We learned that planning and running World Cafés with people from the same communities as the people taking part was very helpful. The people taking part in the World Cafés said that it can be difficult to get help and information about their health. They gave lots of reasons for this. They also had ideas to improve healthcare.Now that we have this information, we will work with the people who took part in and helped run the World Cafés, along with, doctors and researchers to take their ideas for improvements forwards.

A proposal to embed patient and public involvement within qualitative data collection and analysis phases of a primary care based implementation study.

BACKGROUND: Patient and public involvement (PPI) is increasingly seen as essential to health service research. There are strong moral and ethical arguments for good quality PPI. Despite the development of guidance aimed at addressing the inconsistent reporting of PPI activities within research, little progress has been made in documenting the steps taken to undertake PPI and how it influences the direction of a study. Without this information, there are minimal opportunities to share learnings across projects and strengthen future PPI practices. The aim of this paper is to present details on the processes and activities planned to integrate PPI into the qualitative research component of a mixed-methods, multi-site study evaluating the implementation of a smart template to promote personalised primary care for patients with multiple long-term conditions. METHODS: This proposal describes the processes and activities planned to integrate PPI into the development and piloting of qualitative data collection tools (topic guides for both practice staff and patients) and a tailored data analysis package developed for PPI members incorporating broad concepts and specific methods of qualitative data analysis. DISCUSSION: Outputs relating to PPI activity may include clear, concise and suitably worded topic guides for qualitative interviews. Piloting of the topic guides via mock interviews will further develop researchers' skills including sensitisation to the experiences of participants being interviewed. Working with PPI members when analysing the qualitative data aims to provide reciprocal learning opportunities and may contribute to improving the overall rigour of the data analysis. The intent of publishing proposed PPI activities within this project is to inform the future delivery of high quality PPI.

Patient and public involvement (PPI) improves healthcare research, however, there is little published evidence of proposed PPI activities within a research study. The aim of this article is to describe the proposed PPI activities which are to be integrated into a study implementing a smart template to promote personalised care for people with multiple long-term conditions within primary care in the United Kingdom. The proposal describes the ways in which PPI members will be included within the data collection and analysis phases of a research study which includes interviews with primary care staff and patients. PPI members will be asked to develop questions for these interviews and to take part in a mock interview whereby a researcher interviews a PPI member. The proposal also provides details on qualitative data analysis workshops which will be specifically developed for PPI members. The impact of PPI activities could include clear, concise and suitably worded questions used within the interviews. Piloting of these questions via mock interviews may enable researchers to further develop their interviewing skills. It is anticipated that involving PPI members when analysing qualitative data will provide opportunities for reciprocal learning and lead to rich interpretations of the data, inclusive of the PPI members' perspectives. Publishing a record of planned PPI activities and potential impacts demonstrates the rationale and considerations made by the team to ensure that involvement in this study is meaningful and has potential benefits for all involved. The team hopes this proposal will support others with the planning and delivery of PPI activities. In future publications, we will reflect on the learnings, challenges, and outcomes from the PPI activities detailed in this proposal.

Acceptability of the FIGO Nutrition Checklist in Preconception and Early Pregnancy to Assess Nutritional Status and Prevent Excess Gestational Weight Gain: A Study of Women and Healthcare Practitioners in the UK.

Optimum nutrition and weight before and during pregnancy are associated with a lower risk of conditions such as pre-eclampsia and gestational diabetes. There is a lack of user-friendly tools in most clinical settings to support healthcare practitioners (HCPs) in implementing them. This study aimed to evaluate the acceptability of (1) using a nutrition checklist designed by the International Federation of Gynecology and Obstetrics (FIGO) for nutritional screening of women in the preconception and early pregnancy period and (2) routine discussion of nutrition and weight in clinical care. An online cross-sectional survey was conducted with women (aged 18-45) and HCPs (e.g., general practitioners, obstetricians, and midwives). Quantitative statistical analysis and qualitative content analysis were performed. The concept and content of the checklist were acceptable to women (n = 251) and HCPs (n = 47) (over 80% in both groups). Several barriers exist to implementation such as lack of time, training for HCPs, and the need for sensitive and non-stigmatizing communication. Routine discussion of nutrition was considered important by both groups; however, results suggest that nutrition is not regularly discussed in perinatal visits in the UK. The FIGO nutrition checklist presents a valuable resource for use in clinical practice, offering long-term and intergenerational benefits for both mother and baby.

Public attitudes to a human challenge study with SARS-CoV-2: a mixed-methods study.

Background: Human challenge studies involve the deliberate exposure of healthy volunteers to an infectious micro-organism in a highly controlled and monitored way. They are used to understand infectious diseases and have contributed to the development of vaccines. In early 2020, the UK started exploring the feasibility of establishing a human challenge study with SARS-CoV-2. Given the significant public interest and the complexity of the potential risks and benefits, it is vital that public views are considered in the design and approval of any such study and that investigators and ethics boards remain accountable to the public. Methods: Mixed methods study comprising online surveys conducted with 2,441 UK adults and in-depth virtual focus groups with 57 UK adults during October 2020 to explore the public's attitudes to a human challenge study with SARS-CoV-2 taking place in the UK. Results: There was overall agreement across the surveys and focus groups that a human challenge study with SARS-CoV-2 should take place in the UK. Transparency of information, trust and the necessity to provide clear information on potential risks to study human challenge study participants were important. The perceived risks of taking part included the risk of developing long-term effects from COVID, impact on personal commitments and mental health implications of isolation. There were a number of practical realities to taking part that would influence a volunteer's ability to participate (e.g. Wi-Fi, access to exercise, outside space and work, family and pet commitments). Conclusions: The results identified practical considerations for teams designing human challenge studies. Recommendations were grouped: 1) messaging to potential study participants, 2) review of the protocol and organisation of the study, and 3) more broadly, making the study more inclusive and relevant. This study highlights the value of public consultation in research, particularly in fields attracting public interest and scrutiny .