Creating a Public and Patient Involvement Panel: Reflecting on SYNERG-IE’s Experience

The SYNERG-IE programme, on which I work as a patient representative researcher, aims to improve care for people with Sjögren’s disease by advancing education, policy and practice. Sjögren’s (pronounced “SHOW-grins”), an often-misunderstood autoimmune condition, affects individuals’ quality of life through often debilitating symptoms and delayed diagnoses. Public and patient involvement (PPI) in research is defined by UK’s National Institute for Health and Care Research as “research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them”[1]. PPI is central to SYNERG-IE, as our programme aims to co-create solutions with people living with Sjögren’s, ensuring that their lived experiences directly shape research priorities, methodologies, and outcomes.

There are three interconnected elements to the PPI input into the SYNERG-IE programme. First, as a patient representative researcher I’m embedded within the team. Second, the patient advocacy group Sjögren’s Ireland is involved in all three governance structures: the executive committee, the leadership committee and the PPI committee. Third, our PPI panel consults on research and communication activities. A PPI panel is a group of people affected by a particular condition who partner with researchers on how to improve their research, so it better reflects the needs and wants of patients. The panel members are reimbursed for their time and contributions.

The inclusion of PPI in research has gained significant popularity in recent years. By incorporating patient perspectives in the research process, scientists are more likely to create research that is better quality and more relevant to patient needs. For example, if a patient survey was developed without PPI input the researchers might word questions in technical language that most patients don’t understand, make it too long and complicated, or include questions that are not relevant to the patient experience. As a result, a smaller number of people might complete this survey, leading to lower quality research. For this reason, PPI is crucial to the success of SYNERG-IE’s research on Sjögren’s care in Ireland.

After I was hired to join the SYNERG-IE team, one of my first tasks was to recruit and support the PPI panel. Along with my colleagues, I was aware of both the importance of this task and the challenges associated with it. Two challenges were particularly clear.

• Patients’ needs:

We had to design the recruitment process to accommodate the needs of patients. We also had to consider how the activity involved in panel membership could be sustainable for the individuals living with Sjögren’s and the SYNERG-IE programme.

• Diversity:

Another challenge related to diversity and the need for a broad range of voices. We aimed to source a group of people from varying backgrounds, with a variety of different experiences of Sjögren’s, in order to include a spread of patient perspectives on Sjögren’s research and care

We took the following steps to recruit and establish our PPI panel:

1.
After discussing the research programme’s needs and goals, we made the strategic decision to include 10 members on our PPI panel. This number allows us to balance diverse viewpoints and expertise but also accommodates the reality of the health fluctuations that accompany Sjögren’s, ensuring that our work can continue smoothly even if some members are unwell.

2.
We considered how best to recruit a panel that reflected a diverse range of experiences, both in terms of demographics and disease. We tried to get a wide variety of experiences represented so our team could be better informed on patient issues and experiences. We considered factors such as gender, age, educational level, location, disability status, ethnicity, and sexuality. Additionally, we looked at different disease experiences, such as whether patients described themselves as having mild, moderate or severe disease; recently diagnosed or long-term diagnosed; seropositive or seronegative status; and whether they received private or public care.

3.
We posted an open call on the PPI Ignite website to reach an audience of people who are interested in PPI opportunities. To further increase awareness, we also publicised the call through our official website and various social media channels, while Sjögren’s Ireland also publicised it in their WhatsApp support group and social media channels, ensuring that the information reached as many people as possible.

4.
We had a great reaction to the open call, receiving a total of 33 applications. This enthusiastic response highlights a strong interest in PPI involvement among Sjögren’s patients in Ireland. It demonstrates the community’s eagerness to engage and contribute to research related to their condition. However, we noted that there were very few applications from men. This is likely because Sjögren’s predominantly affects women, with a ratio of 9 women to 1 man. This gender disparity is reflected in the applications we received. Additionally, we only had one application from a person of colour, which reflects the difficulties involved in reaching more diverse communities.

5.
We interviewed everyone who met the inclusion criteria. To accommodate those with fatigue or those living outside of Dublin, we conducted the interviews via Teams or telephone calls. This approach allowed us to meet with a diverse group of people, without imposing additional strain or travel requirements.

6.
Following the interviews, our team met to make the tough decisions needed to form our new PPI panel. This involved a review process that was both productive and challenging. We were struck by the commitment, expertise, and unique perspectives that each applicant brought to the table. It wasn’t easy to narrow it down, given the incredible pool of candidates who shared not only their expertise but their personal journeys with us. After much discussion, we were delighted to select our 10 panel members and meet our goals. The group is well-prepared to guide our research, bringing a wealth of diverse perspectives and expert insights. While we made significant progress and met our diversity criteria, we recognise there’s still work to be done as our panel includes just one man and one person from an ethnic minority.

7.
Since forming the panel, we have held virtual meetings to warmly welcome the new PPI members to the SYNERG-IE team. During these sessions, we provided training and facilitated introductions between the new members, ourselves and the wider team. To accommodate the varying needs of our PPI panel, we use flexible communication approaches. These include fatigue-friendly practices such as keeping meetings short, providing rest breaks, and offering hybrid participation options. These kinds of adaptions can help maximise inclusivity and accessibility, particularly for those living with chronic illnesses, so that everyone can participate comfortably and effectively.

8.
For our first PPI activity, the PPI panel and members of the SYNERG-IE team collaboratively reviewed an upcoming survey. This group exercise provided an excellent opportunity for mutual learning and skill development. The feedback we received from the group was extremely helpful in refining and improving the survey design. For example, panel members observed that in places the survey wasn’t easy to follow because it moved between several different subjects. Based on their advice, we added an introductory paragraph at the start of each section, outlining the section topic and explaining why we are asking about it. Another instance of their valuable feedback was regarding a question about managing flare-ups. Panel members pointed out that not all patients might be familiar with this term, so we provided a definition and example to make it clearer. By working together, we were able to incorporate diverse patient perspectives, creating a more comprehensive and user-friendly survey.

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We are very grateful to our PPI panel for generously committing their time to our research programme. Their involvement has significantly enhanced the quality and relevance of our work and will continue to do so. From my own perspective as the patient representative researcher on the team, it is both rewarding and reassuring to be able to compare my own views (which inevitably are coloured to a degree by my own background and experiences) with the views and insights of this diverse and dedicated group of patients.

We would also like to say a sincere thank you to everyone who expressed interest in joining our panel, and we hope they may be able to participate in other parts of SYNERG-IE’s programme in the future. You can follow our progress by signing up to our newsletter or by following us on social media Instagram, LinkedIn and X.

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[1] National Institute for Health and Care Research, “Public Involvement in Research”, Accessed 11/02/2025, Public involvement in research | NIHR