Development and evaluation of a stroke research Public Patient Involvement Panel

Development of the PPI panel

The current team of researchers have already begun the development of a small PPI group, including two people with stroke and a patient advocate member of the Irish Heart Foundation. We aim to further develop this PPI panel by including more people with stroke, family carers, healthcare professionals and stroke researchers. To recruit people to the PPI group, a pragmatic purposive sampling technique using snowball sampling will be used. Inclusion criteria for panel members will include adults aged 18 years and over with stroke, family members or carers of people with stroke, and healthcare professionals who work with people with stroke and researchers and academics who work in stroke rehabilitation research at the University of Limerick. It is hoped that these panel members will join the new panel and invite other potential people to join. The researchers will contact known members or organisers in patient organisations including the Irish Heart Foundation, Age Action Ireland, Headway, community groups, and family carer organisations to recruit potential PPI participants. Based on the recommendations of Gilfoyle et al.²⁴, a social media recruitment campaign will be implemented. Recruitment from a clinical setting can be a barrier for some, therefore social media recruitment may help to reach those in less represented groups such as members of minority groups. Moreover, it was recommended that working with existing research partners is essential in deciding on recruitment strategies²⁴. Therefore, discussions were held with members on the research team who have extensive experience in PPI.

The ‘level of involvement’ model comprises three stages: namely ‘consultation’, ‘collaboration’ and ‘user-control’³¹. Collaboration refers to researchers and the public working together in equal partnership. The PPI panel members will be seen as equal partners and will be involved in a collaborative way across all parts of this research. This is the level that will be used for this PPI panel. Members of the public will be recruited through posters and newsletters circulated on social media and relevant organisations, such as University Hospital Limerick and the Irish Heart Foundation. A press release will be published on the University of Limerick’s website and affiliated social media platforms, such as Twitter and LinkedIn. It is hoped that following this, word of mouth will inform wider members of the public of the PPI panel formation. We will liaise closely with our clinical and advocacy partners to purposefully draw on as diverse a population as possible in terms of sociodemographic (e.g. gender, rural versus urban dwelling, living alone/with others), and clinical (e.g. severity of stroke, presence of aphasia, level of mobility) backgrounds, to promote inclusivity among the PPI panel members and will be guided by the recommendations outlined by both Concannon, Meissner³² and Gilfoyle, Melro²⁴., Concannon et al.³² recommend using the 7Ps framework to identify key groups for inclusion in the panel. These are: patients and the public; providers (carers and family); purchasers (healthcare professionals); payers; policy makers; product makers; principal investigators. The authors recommend this as a flexible approach, therefore the relevant members for the purpose of this study will exclude payers, policy makers and product makers. It is important to ensure a balance between the included groups, ensuring patients and the public are strongly represented. Concannon et al.³² do not directly address the issues of representation of minority or underrepresented groups, or the ethical considerations involved in Interested individuals will be encouraged to contact the postdoctoral researcher (A.W.) to obtain more information on becoming a PPI panel member. Members of the PPI panel will be purposively sampled. This will involve identifying key groups to target³³, which will be guided by Concannon, Meissner³². Ideally the panel will consist of 2–5 researchers and health and social care professionals, 2–5 carers and family members, and 4–10 people who have had a stroke. A maximum of 20 members in total is preferred to account for potential participant attrition, however, a minimum of 8 members will be accepted if recruitment challenges or other barriers arise.

Each invited member (people with stroke, carer/family member, healthcare professional) will be given an information letter and a consent form to be signed. We acknowledge that communication barriers can limit participation, particularly for people with aphasia. To address this, we will incorporate strategies from the PAOLI framework, which outlines inclusive methods for involving people with aphasia in research³⁴. We will collaborate with a Speech and Language Therapist to develop accessible recruitment materials (posters, letters, information letter and consent form) and implement supported communication techniques. Additionally, all materials will be written in Plain English to ensure clarity and accessibility for all potential participants. Opportunities will be given to clarify, or negotiate, aspects of joining the PPI panel. Transportation and attendance aspects will be discussed, and alternatives will be offered if required. The research team will answer all queries that prospective members may have. Emergency contact details will be collected from each participant.

Framework to be used in the development of the PPI panel

The formation of a PPI panel for stroke research will be supported by the guidelines developed from the INVOLVE framework. This will ensure that all members of the PPI panel are treated ethically and respectfully. This framework has outlined standards that must be met when involving the public or patients in research. This comprises of inclusive opportunities (ensuring that becoming a member is accessible and available to the target research group); working together (members of the public should be able to work with the researchers, rather than work for); support and learning (training and learning opportunities should be provided for panel members); communication (communication and language used should be easily understandable by the general population and alternative communication methods should be used when required).; impact (findings from PPI should be disseminated to the public to share the knowledge); and governance (members of the PPI panel should be involved in leadership and decision-making roles). These standards have been designed to encourage researchers to adapt the involvement of PPI in their research and to ensure learning and reflection takes place for both PPI members and researchers alike^33,35. Key tenets of the Community-Based Participatory Research (CBRP) participatory research framework are incorporated into this research^36,37; namely stakeholder input, data sharing, inclusivity, empowerment, shared decision making, trust, partnership. CBPR is participatory wherein members of the community and academic partners work together to devise a research question, carry out the research, and disseminate the findings. By following these principles, we aim to ensure that PPI involvement is genuine and impactful, rather than tokenistic. PPI members will have a clear role in shaping research decisions, and their contributions will be actively integrated into the study design, implementation and dissemination.

Panel involvement

This study will consist of four in-person meetings per year for a period of two hours which will take place between September 2023 and September 2024. All stakeholder groups will attend each meeting to get a diverse range of perspectives and to maximise the quality and impact of the research. Meetings will primarily be held in person, however, participants will have the option of attending online if their preferences or circumstances make in-person attendance difficult In person will be carried out in disability-friendly environments that can be easily navigated and have close access to public transport. The locations will be wheelchair friendly with either ramps or elevators. Clear instructions on finding the location of in-person meetings and details on relevant public transport routes will be emailed to the panel prior to each meeting. Potential sensory deficits will be catered for, where possible, using rooms with minimal noise interferences, voice projection, and written information will be printed with large, visible text. In line with the PAOLI framework, we will implement strategies to support the inclusion of people with aphasia in the PPI panel³⁴. To address the potential difficulties with communication among PPI panel members, we will engage the expertise of an expert Speech and Language Therapist to inform the development of accessible materials and the operationalisation of the meetings. Plain English will be used to make sure that all members can understand the content of the meetings, regardless of their level of understanding²⁷. For members who are unable to read the information, there will be people available to support these people and read the information aloud or present it in an alternative way to ensure understanding. PPI members will be allowed to increase or reduce their involvement in the meetings. The aims of each meeting will be clearly explained to members, with the role of each panel members discussed to manage expectations. Participants will be offered training through the PPI Ignite summer school free of charge. While the PAOLI framework aims to promote meaningful involvement of people with aphasia in aphasia-related research, our panel aims to include people with aphasia into diverse aspects of stroke rehabilitation research, not just areas centred on communication disorders. This approach ensures that the perspectives of people with aphasia are considered across different areas of stroke recovery, which will improve the inclusivity, relevance, and overall impact of our research outcomes.

The Initial meeting will introduce the panel to each other and will allow for rapport to be built between the core research team and the panel. A terms of reference document will be drawn up and reviewed by all for input. Consent will be gained from all members. Minutes will be taken during the group meetings and interviews. PPI members will be given tasks to compete and will be invited to share their opinions and suggestions. Open discussion will be encouraged and will be guided by the PI. Each stakeholder panel meeting will have a different focus. Panel members will be actively involved in shaping the research process, playing a significant role in the conceptualisation of research questions and design of the study. During meetings, the panel will be required to review and provide feedback on study recruitment and delivery plans, contribute to the development of study materials (e.g., questionnaire items), assist with the evaluation of the study, and provide input into data analysis and dissemination strategies. Panel members will also be asked to assist in interpreting study results, contributing to the writing of scientific papers, and promoting the findings through conferences. Additionally, they will engage in reflective discussions to improve the PPI process itself. Each meeting will begin with an introductory period to allow members to get to know or socialise with each other. Activities used during PPI panel meetings among co-researchers will include icebreakers and energisers, brainstorming using flipcharts, post-its, drawing and discussion, and spectrum mapping.

To avoid tokenism, each stakeholder group in the PPI panel will be actively engaged from the onset, with clear roles and ongoing support to facilitate meaningful participation. People with stroke will be engaged through accessible materials, supported communication, and flexible participation options to ensure their lived experiences shape research priorities and outcomes. Carers and family members will be encouraged to share insights on the long-term impact of stroke and rehabilitation, ensuring that research reflects the realities of caregiving. Researchers and health and social care professionals will aid in bridging the research and clinical practice gap, while providing expertise on feasibility and implementation. The PPI panel will be involved as co-researchers in the conceptualisation of current and future stroke rehabilitation research, the delivery and design of research studies and the analysis and dissemination of research findings. There will be opportunities for panel members to co-present findings at public events and conferences. Throughout each phase of the project, the PPI panel will contribute to ensuring the research remains relevant, practical, and meaningful for the target population. Specifically, they will enhance the study’s impact by improving recruitment strategies, participant retention, and study materials, while also ensuring findings are accurately interpreted and widely disseminated. Additionally, engaging in reflective discussions about the panel process will help adapt and improve it, ensuring a more inclusive and effective research experience. Meetings will last no more than two hours. Lunch will be provided for all members and members will be provided with vouchers to reimburse them for their time.

Design of the qualitative study

To address the second aim of this research, we will use qualitative descriptive methods to examine the perspectives of the PPI panel members on their participation as co-researchers in the PPI panel. This will involve a qualitative study following the four meetings, wherein each member of the PPI panel will be invited to participate in a focus group interview following one year of PPI panel involvement. Participation is voluntary and members of the panel can opt out of the focus groups while remaining a PPI member. The focus groups will be facilitated by SO’R, and SH. Similar to the PPI panel, it is estimated that there will be 8–20 participants in total, with 2–5 researchers and health and social care professionals, 2–5 carers and family members, and 4–10 people who have had a stroke. Individual phone interviews will be offered to participants who are unable to attend the focus group.

The PPI panel contributed to the wording and design of the focus group interview guide, ensuring that the language used was clear, accessible and easy to understand for all participants, while also ensuring that the right questions were being asked. The interview guides uploaded to the Open Science Framework (OSF), an online data repository³⁸. During these interviews, stakeholders will be invited to reflect on, and discuss, their experiences while participating in the PPI meetings. Questions will be objective and leading language will be avoided. These meetings will be audio-recorded and run for approximately one hour. There will be opportunities for the participants to make changes to their answers during the interviews for more meaningful feedback. A debriefing session will be held to ensure the panel are happy with their involvement and the interview.

Qualitative data analysis

Data transcription, analysis, interpretation, and write-up will be carried out by the first author (SO’R) and the lead author (SH). The focus group and interviews will follow an interview guide of questions pertaining to members’ experiences and opinions of the PPI group. These meetings will be audio-recorded and transcribed verbatim. Identifying information, including names, will be removed to ensure anonymity. The audio recordings will then be destroyed. Pseudo-anonymised transcripts will be kept in a folder on password protected computers and will only be shared with necessary members of the core research team for analysis.

This study will use a qualitative approach with reflexive thematic analysis of data³⁹. the Guidance for Reporting Involvement of Patients and the Public 2 (GRIPP2) checklist will be used as a guide for reporting patient and public involvement⁴⁰. The GRIPP2 reporting guideline is an evidence-based checklist specifically for reporting PPI research. The implementation of this, along with the co-production of findings with the panel members and researcher reflexivity, will bolster the accuracy and quality of published findings from the PPI meetings.

Reflexivity will be at the core of this analysis, where the authors will reflect on their own experiences, knowledge, and biases⁴¹. Braun and Clarke’s six-step reflexive thematic analysis^42,43 will be used to analyse the transcripts. This method of analysis is flexible and allows for large datasets to be analysed while providing a rich account of the data. The transcripts are analysed under the following six steps: familiarisation of the data, coding, theme generation, searching, reviewing, and defining themes. The reflexivity will help the authors to acknowledge their biases and how these may affect the analysis of the interviews. Peer debriefing sessions will be held with other members of the research team and participants from the PPI panel members to discuss coding of data and theme and subtheme development for feedback and ensure accurate interpretation of data. Reflexive TA will be employed in this research due to its theoretical flexibility, acknowledging the researcher’s own perspectives and biases when interpreting the data. To this end, reflexive practice will be facilitated through continuous peer debriefing between the members of the research team involved in the analysis, along with the completion of fieldnotes and a reflexive diary following each interview⁴⁴. This aspect of reflexivity will allow for understanding and acknowledgement of bias. Themes and subthemes will be generated by the authors from the coding tree following this process⁴¹.

Transcripts will be coded and stored using NVivo (Version NVT20) In situations where members of the research team are not using NVivo, paper copies and highlighters will be used for coding. These paper copies will be stored in accordance with the University of Limerick’s General Data Protection Regulation guidelines. Members of the stakeholder panel will be invited to participate in the analysis process and will aid in creating lay summaries for public consumption.

Plans for dissemination of study outcome

The findings will be disseminated via open access academic journals and presented at academic conferences. Free public events will be held on campus at the University of Limerick where results of the study will be made available to people who have had a stroke, carers, and health and social care professionals. The findings will be shared on social media sites to reach as many people as possible. This information will be shared as infographics and short bullet points. The PPI panel will be invited to contribute to the dissemination plan and all dissemination activities.