Identifying a need: developing recognition for PPI staff in health research

The NIHR Centre for Engagement and Dissemination (CED) recently published a report of a ‘necessary conversation’ meeting where Paula Wray and I were among speakers presenting our work and experience on the ‘hidden costs of Patient and Public Involvement (PPI)’. This was an opportunity for us to meet with senior NIHR leaders to raise some of the challenges of PPI work, push for better understanding and recognition of the work, much of which is often hidden, and offer some recommendations.

Developing a career competencies framework

You may have heard me speak – in lightning fashion! – at the Department conference in March about work I have been leading with PPI colleagues and PPI contributors from across the country to develop a career competencies framework and accompanying training for PPI staff. By PPI staff, I mean people like me, who work with both PPI contributors and researchers, and support, advise on and facilitate PPI.

The framework is based on the findings of nationwide survey of PPI staff in which we asked them about the skills and experience they bring to their role, and what training they felt would be of benefit to them. We mapped these to five core competencies to produce the framework:

• Communication/influencing
• Organisational
• Facilitation
• Diversity literacy/EDI awareness
• Technical

Identifying training gaps

A review of relevant training highlighted a gap in training in facilitation skills that addresses the specific challenges and situations that can arise in PPI. Facilitation in this context refers to the skill of guiding and managing group discussions and activities to ensure effective communication, collaboration, and achievement of shared goals between researchers, patients, and the public.

To address this gap, we used funding from the NIHR, to work with Janet Allison, a clinical educationist, to create training sessions for PPI staff that used ‘forum theatre’. Forum theatre encourages audience interaction and considers different options for dealing with a problem or concern, allowing participants to work through issues and explore solutions.. In our sessions, participants were actively involved in workshopping  difficult or distressing incidents, based on the real-life experiences of PPI staff and contributors. This enabled us to work together, learn from each other and reflect on how to best prevent such challenges from arising in the first place.

The feedback we have had on these has been extremely positive, and in particular flagged how much PPI staff appreciated the opportunity to get support from colleagues in a role that often feels very isolated.

Recommendations for supporting PPI staff

Two of the recommendations we proposed at the ‘necessary conversation’ meeting relate directly to this work:

• Articulate the core competencies and skillset needed for impactful and meaningful public partnerships by encouraging organisations and individuals to use the framework;
• Establish specific roles for the public partnerships workforce i.e. PPI staff (in addition to public contributors) on panels that review and award funding applications, and evaluate how these work.

Firstly, we would like to see roles for PPI staff developed using the framework, which has three levels of experience. This would provide some consistency in job roles, which is currently lacking, as well as recognition for its broad scope and the opportunity for career progression. We plan to work with the NIHR Academy on this and are investigating avenues for offering the training more widely; we have already been approached by Newcastle Health Innovation Partners who are keen to commission a workshop for their PPI staff.

The second recommendation relates to the importance of having PPI staff on funding panels, to bring their knowledge of what is practical and realistic in PPI plans. Their role would sit alongside that of public contributors, not instead of or to support them, but complementary. The framework would help underpin this role and as PPI staff we are in a good position to advise on how these positions could work together.

Bringing it all together

Our project, and the others showcased in the meeting, demonstrate the work done by PPI staff which often goes unseen. By providing better support and recognition for PPI staff through the use of the competencies framework and pushing for our inclusion on funding panels, we believe that we can ultimately improve the PPI experience  for researchers, patients, and the public.