Public and patient involvement

This chapter contains reproduced material from Snooks et al.11 This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) licence, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: https://creativecommons.org/licenses/by/4.0/. The text below includes additions and formatting changes to the original text.

Introduction

We have involved people with experience and healthcare backgrounds relevant to the STRETCHED study at all research stages; from project conception, through delivery and in dissemination of our findings. Building on our experience from other studies, we undertook a layered approach so that people could be involved at strategic and local levels in line with their interest, experience and health.68 Our aim has been to enable active and meaningful involvement throughout STRETCHED to enhance research quality, rigour and ethical standards, in line with the Swansea Trials Unit SOP on service user involvement.60 We summarise below (Table 17) how public contributors have been involved, the impact of their involvement and further reflect on process and experiences, in line with the GRIPP checklist.69

Results: how we undertook public involvement

We have involved public contributors in delivering STRETCHED in the following ways.

We recruited Penny Gripper (PG) and Bethan Edwards (BE) through networks supporting public involvement in mental health research and emergency care research. Both confirmed the importance of the topic and need for research on the question of supporting people who frequently call emergency ambulance services. They were active members of the STRETCHED research development group, contributed to drafting the proposal including our plan for public involvement and were named co-applicants.

When STRETCHED was awarded research funding, PG and BE joined the RMG and have been actively involved throughout implementation of the study. Alongside other co-applicants and co-opted experts, they have contributed to discussions and decisions at all stages through attending quarterly meetings and commenting on documents. They supported submission of our ethics application and other research permissions. They were involved in planning and recruiting for the stakeholder meeting to develop the logic model for case management. They worked within the qualitative research team on preparing participant-facing information to support recruitment. They were extensively involved in data analysis. Training about public involvement formed part of a 2-day training event for STRETCHED research paramedics to ensure they understood the role of public contributors in the study and could support recruitment and working with them. PG and BE have been involved in disseminating study findings and will continue this role as part of the research team.

We recruited eight people to join a patient advisory panel. We set up this panel to provide a second and less formal route for patient perspectives to inform implementation of the study. We identified people with characteristics and experiences reflective of the STRETCHED target population, such as callers with a history of chronic obstructive pulmonary disease (COPD), asthma, diabetes or mental health issues. We also sought people who lived in the participating ambulance service trusts. Working with PG and BE, we prepared a leaflet which we circulated through public involvement networks and site networks identified by the research paramedics. We also presented STRETCHED to, and took recruitment advice from, the Service Users for Primary and Emergency care Research (SUPER) group of patients, carers and public members. The group’s remit is to support PRIME Centre Wales. They highlighted recruitment routes, the importance of being non-judgemental and building trust, the use of appropriate language, and ways to make use of social media.

The panel was chaired by PG to provide a link between its activities and the wider research team. PG and BE shared information about study activity and reported panel discussions to the RMG. When this group met, they decided to rename it the LEAP. The LEAP has contributed to specific study tasks including recruiting service users for interviews, sense-checking interview results and devising dissemination materials.

We recruited two people to be active members of the independent Study Steering Committee. We identified Bob McAlister (BMcA) and Alan Brown (AB) through the Public Involvement Community supported by Health and Care Research Wales. They brought a range of relevant experiences to the role. They were welcomed as equal members alongside other experts and contributed fully to all discussions and decisions of the SSC. They were invited to all meetings and provided with all relevant paperwork to enable their involvement.

We confirmed the priority and status of public involvement throughout the STRETCHED study in the Public Involvement Role Description document which was reviewed and agreed by the RMG at study start. We included Public Involvement as a standard agenda item to enable discussion on public involvement processes and topics, in addition to PG and BE contributing to all other agenda items. The Study Steering Committee charter also acknowledged the role of public contributors in its operation.

We named an experienced researcher (BAE) to support public involvement in STRETCHED. She oversaw processes including communication, liaison and co-ordinating involvement opportunities during the study. We also offered honoraria for all involvement and reimbursed incurred expenses.

Public involvement in dissemination of STRETCHED

In keeping with the principles of co-production, our public contributors are actively involved in dissemination activities.

PG and BE have both taken part in conference workshops to present STRETCHED and related issues.

In 2020, PG was among five panel members at a workshop on ‘Who makes high use of the emergency ambulance services and how are services responding to meet the needs of these patients?’ at the HSRUK Annual Meeting. BE was one of four speakers in a panel on ‘How can the police and ambulance services collaborate in the provision of emergency healthcare?’ at the 999 EMS Research Forum 2022 conference.

Both are also co-authors on peer-reviewed conference presentations and journal publications and will co-author further outputs in line with our Publication Plan.

LEAP members have advised on presentation of findings to the wider public to strengthen our communications about applicability of our results.

Impact of public involvement

Including public contributors throughout STRETCHED raised awareness among all research collaborators of the patient and service user perspective to ensure the research remained patient-centred and observed good governance. Early in our partnership, PG and BE highlighted sensitivity about appropriate language to describe people who phone the emergency ambulance service and constructively challenged biases and assumptions within the team. Their discussions, alongside the input of ambulance service collaborators, have helped us understand that the individuals calling the emergency ambulance service are a diverse group with potentially diverse stories and priorities. They have been keenly interested in accessing patient and service user experiences alongside recognising how challenging it is to reach our target population. They challenged the research team on ways to optimise recruitment and data collection. They worked closely within the team to update our service user recruitment and interview plans (STRETCH-UP). Their personal insights have been especially informative in guiding our analysis and interpretation of interview and focus group data. For example, when considering the mismatch between services and callers’ expectations, PG identified how these could be low or unduly high and explained how respondents might hold these views. They also described how patients needing support for their mental health might feel and how they could perceive the system to be broken for them.

As link members of the RMG and LEAP, BE and PG also brought a wide range of public and patient perspectives to inform research implementation.

PG and BE extended their public involvement to contribute to the InFORM study, a parallel research project undertaken by some STRETCHED co-applicants, to co-produce guidance to improve care for people who frequently call the emergency ambulance service.64

Raised awareness and understanding also resulted from the LEAP input. Members highlighted relevant characteristics of the case management intervention, the extent of national variation and the effect of high staff turnover. They commented on a recruitment flyer for the service user interviews and advised on routes for disseminating this.

Public contributor members of the Study Steering Committee have brought the service user’s perspective to discussions and an expert eye on the process of public involvement in STRETCHED.

Reflections on public involvement

Involving public contributors throughout developing, undertaking and disseminating the STRETCHED study has enabled all research team members to remain aware of service users’ perspectives and motivations. Experience-based input ensured a service user focus during recruitment, interpretation and presentation of data. Our aim to undertake a relevant and high-quality study was embedded in the research application, which received positive feedback for the integrated approach to public involvement.

The research team has maintained an honest and respectful partnership throughout enabling differences to be aired and consensus to be achieved. Effective public involvement in research relies on building trust and operating with mutual respect while collaborating as a team to implement research.70

Discussion and conclusion

We involved service users as public contributors throughout the process of designing, delivering and disseminating STRETCHED. We used a layered approach, enabling people with a range of experiences and perspectives to contribute to study management, oversight and implementation. Our mixed approach provided opportunities for people to collaborate with other research team members in formal meetings, through a LEAP and by one-to-one contact with the Public Involvement Lead. Providing different routes for involvement in research supports people with diverse experiences, skills and availability to collaborate in a way which meets their needs and interests.60 Comprehensive support, to include honoraria, reimbursement of expenses, accessible opportunities and a named contact, can contribute to effective public involvement through the years required to deliver high-quality research.71 Reporting our processes and experiences helps build rigorous evidence, providing knowledge about effective processes, motivators and barriers and assess the impact of public involvement in research.63,69