Case study: collaborating across the region: Coordinating plans and resources to support more innovative, inclusive, and diverse public engagement and involvement

How can patient and public involvement teams have more joined up approaches to engaging under-represented communities? The NIHR Research Design Service East of England piloted a new software that allowed people to share their thoughts to help agree goals and plans.

What’s the issue?

The main aim of this project was to determine the appetite for a more collaborative and co-ordinated approach for Patient and Public Involvement and Engagement (PPIE) Leads to engage under-represented communities in research. A second aim was to identify what success should look like and what barriers and obstacles would need to be overcome to achieve this aim. 

NIHR PPIE Leads working across different arms of the NIHR infrastructure are responsible for engaging and supporting members of the public, so that they can have meaningful involvement in decision making and be kept informed throughout all stages of research.

Despite several successful community engagement initiatives across the region there are still far too many people who do not yet have any representation or voice in research planning and decision making. Therefore, there is a need to mobilise equality, diversity and inclusion principles, as a collective, to engage under-served communities, thus ensuring that healthcare research across the region is relevant and accessible. (NIHR key priority: Bring clinical and applied research to under-served regions and communities with major health needs).

One issue that we, the NIHR EoE PPI Collaborative, identified years ago was the lack of a joined-up approach to engagement with the public between Collaborative members and Partners (NHS, community, charity etc.). As a result, we have mainly worked in organisational ‘silos’ leading to duplication of efforts, wasted resources and missed opportunities. 

What did you do?

Rather than using traditional methods for collaboration (i.e., workshops, meetings) the Collaborative chose to use a new software approach which would enable participants to anonymously share their opinions and fast track the ability to agree goals and plans. 

The collaboration exercise was conducted with 48 individuals from the Collaborative and partner organisations between 14 and 29 June 2022 (the process was conducted over a total period of six weeks).

The topic title was defined as:
Coordinating plans and resources to support more innovative, inclusive and diverse public engagement and involvement in health and care research.

The Augmented Intelligence (AI) software used for this exercise enables large numbers of individuals to anonymously share their opinions in free text form and rate their level of agreement with the full set of opinions from the whole group. This method only required participants to provide 90 minutes of their time (on average) at their own pace and convenience, and without the need to meet as a group.

A core team (six participants) then met for three virtual meetings of 60 minutes to collate:
a) The case for change
b) The agreed goals for the future
c) Solutions to tackle the agreed barriers.

What happened?

48 individuals (from the Collaborative and partner organisations) took part in the collaboration exercise which involved a ‘three step virtual dialogue’:

Step 1: Participants provided their opinions around a set of questions based on the success goals for the topic; potential unintended consequences; barriers and obstacles to success and the case for change/ action.

Step 2: The full set of unique opinions (duplicates removed) were shared with the whole group to rate their level of agreement/ disagreement.

Step 3: A report was generated by the AI software for each participant showing their divergence from the group and providing the opportunity to share their reasoning or change their opinion.

The results revealed a strong appetite amongst the participants for greater collaboration. This was based on the external (public) benefits which could be realised and the internal financial and non-financial value which could be generated (including time/ cost efficiencies). 

Overall, the results highlighted that current levels of engagement cannot be further developed with the current resources. Building and maintaining relationships with regional organisations (voluntary, community, etc.) requires more resource (time/ money) than is available in existing PPIE roles. However, participants agreed that these relationships are crucial for increasing diversity in PPI activities and decreasing regional health inequalities. There is collective buy-in for change, but a lack of coordinated action. 

It was agreed that more resources are needed to develop a joined up regional public engagement plan and governance structure and to appoint a regional public engagement co-ordinator/ community broker.

What could other people take from this?

The following recommendations for future action have been drawn out:

1. There should be one regional NIHR public engagement plan co-produced by regional NIHR organisations and their public partners

A clearer regional shared vision for public engagement with consistent key messages for all partners.

An agreed regional plan of engagement priorities amongst partners which enables regional sharing of engagement information and activities and more visible links and accessible opportunities for public involvement.

2. There should be an NIHR funded agent, possibly based in the community, to bridge the gap between community needs and research

The participants agreed that a critical enabler to delivering greater value is the appointment of a regional public engagement co-ordinator to broker community relationships and communicate PPIE opportunities. This role could be hosted by a voluntary/ community organisation to better capitalise on skills, knowledge and experience outside of professional PPIE Leads and to provide easier access for the public to get involved in, and learn about, regional health research.

3. There should be a shared database of community engagement contacts and initiatives with a named organisational point of contact

We created a shared database of community engagement contacts to decide who to invite to participate in this collaboration exercise. This work can be extended by analysing who we are, and are not, working with already and possibly inviting other PPIE Leads from across the Cambridge Biomedical Campus to include their contacts, to increase diversity and improve coordination. 

4. More voluntary/ community sector organisations should be involved to make use of their resources, knowledge, contacts and expertise in engagement

Are there any resources/outputs?

Summary report available on request tracey.johns@essex.ac.uk or anne.sykes@nihr.ac.uk

What’s next?

A summary report was shared with the regional NIHR Inclusion Steering Group and is influencing plans in progress for joint inclusion flagship projects.