Reimagining PPIE: The power of transformational inclusion 

For as long as there has been patient and public involvement and engagement (PPIE), there’s been terminology to describe communities who were less likely to be included in this type of work. Phrases like the older, problematic term ‘hard to reach’ (which placed the responsibility on communities for perceived disengagement); to the recent, more aware term of ‘underserved communities’ (which places responsibility on the healthcare system for under-serving the diversity of our communities). It is important to acknowledge this history of PPIE and how prior exclusion has directly harmed the ‘underserved communities’ leaving some people experiencing disenfranchisement and distrust. 

In the last few years, there’s been considerable efforts made to address this inequity in involvement and engagement so that all communities have an opportunity to work with organisations, like us, that drive health innovation for the benefit of all. 

So how do we start to overcome this in our work? It requires us to start reimagining what involvement and engagement looks like and utilising the power of ‘Transformational Inclusion’.  

The mind shift from ‘us to them’ to just ‘us’ 

We can think of ‘Transformational Inclusion’ as a shift to focusing on ‘us’. Dr Tanvir Bush explains this as: “a mind shift: from ‘us to them’ to just ‘us’; from ‘how can we help you?’ to ‘how can we help each other?” 

This lens can be applied to the way we design PPIE to minimise the systemic and practical barriers that communities can experience. Here is some guidance on how we can reimagine PPIE in this way: 

• Valuing everyone’s involvement equally: Everyone should be recognised for the time, knowledge and skills that they bring to our collective work. At the very minimum we should be covering any expenses so that no one is out-of-pocket from the work. Best practice is to remunerate people for their time (NHS England and NIHR have guidance on this). 
• Reaching people where they are: Instead of asking people to engage in unfamiliar spaces, we should engage in spaces where communities already gather. This could be through ‘popping-up’ in community spaces like libraries or places of worship; or through participation in other community initiatives like community fairs or residents meetings.   
• Providing accessible support as a default: 24% of the population in the UK have a disability which can impact on their involvement. We need to ensure that support mechanisms are provided within PPIE work such as: using wheelchair or mobility aid accessible venues; provision of BSL interpretation; providing quiet spaces and appropriate break times; ensuring documents and presentations meet digital accessibility standards with font sizes, colour contrasts and alt-text. It is important to communicate these accessibility supports with people and offer ways for people to highlight additional accessibility support services that would help enable their involvement.  
• Speak a shared language: When language is complex, obscure, or full of acronyms it causes exclusion. Using clear and accessible language supports people to be included so that they can participate in conversation and contribute to the exchange of ideas. There must also be consideration of those who may not speak English fluently and how to include translation support and co-facilitators from within the community who can help make involvement multi-lingual.  
• Distribute power and encourage ownership: To move into an ‘us’ we must remove power imbalances and create non-hierarchical spaces where job titles and organisations are left outside the room. Make sure there is equal representation of healthcare and community stakeholders and equal distribution in who is invited to speak and share. It is important to consider how sessions are facilitated and whether there is possibility for co-facilitation from community representatives, and spending time in sessions familiarising and creating a group identity. 
• Creating cultural sensitivity: Our cultural identity has a strong influence on our beliefs and our behaviours which goes on to influence needs within our work together. To create a culturally sensitive space we need to learn, take action and grow. It is important to acknowledge what we do and don’t know about the cultures of our community and do some work in educating ourselves on this. Then those learnings need to inform design and delivery of PPIE, for example making sure activities are not arranged on days or times of religious observance. We can all grow by being honest and transparent about things that we don’t know, and acknowledge when things haven’t gone to plan. Demonstrate a willingness to use these experiences to learn and take action again.

Following this guidance can break down barriers to involvement and engagement, however this isn’t something that is considered at the beginning and then never thought about again. It is likely that as collaborative work evolves, the barriers will also change in response, so we constantly need to be applying ‘Translational Inclusion’ to our PPIE work.  

By applying the principle of ‘us’ we can move towards creating meaningful PPIE with equity across our communities. Where collective work informs and shapes the outcomes of health and care innovation for all. 

We have to acknowledge that inclusive PPIE alone is not going to be a solution for the lack of trust and representation that some communities have experienced for decades. But it is the start of the journey for reimagining PPIE, so that terminology like ‘underserved communities’ is eliminated from the future of health and care research and innovation.