What does patient and public involvement feel like?

Commissioners have a responsibility to involve patients and members of the public in decision making. Indeed, it could be argued, as the financial pressures intensify, that there’s an even greater need for patient and public involvement (PPI) in how finite resources are prioritised locally.

A recent report of a case study in the Health Expectations journal offers some interesting insights from staff and PPI representatives.

Methods

The research team conducted the case study in a Clinical Commissioning Group (CCG) over an 18 month period, as part of a wider study on PPI. The case study incorporated ethnographic methods: non-participant observation; interviews with staff and PPI representatives; and document analysis. Although the case study is anonymised, we know from the paper that it is based in an inner city borough, with a large and diverse population.

The case study focuses on two PPI activities within the CCG: public board meetings and a PPI reference group. The authors acknowledge that their findings won’t reflect the full range of PPI activities within the CCG and suggest more evaluation would add to our understanding.

Findings

The researchers found that, whilst recruitment and selection of representatives emphasised the importance of diversity, the reality shows that most representatives tend to be semi-retired/retired, white and middle class. The issues of representation and legitimacy were raised by PPI representatives who expressed concern that membership of the PPI reference group didn’t reflect the diversity of local communities.

There also seems to be a potential conflict in that PPI representatives are expected to have a broad range of knowledge and skills to be able to contribute effectively. The authors describe the risk that representatives develop into “quasi-professionals” which can distance them even further from under-represented groups. There is a danger that setting pre-requisite knowledge and skills rules out some groups from selection, or even from applying in the first place.

Encouragingly, staff reported on the value of the different perspectives that PPI representatives bring. However, the representatives did express some frustrations that their contribution is quite controlled; for example, the CCG decides the nature of engagement, sets the agenda and determines the arrangements for meetings. There seemed to be limited opportunities to raise issues which are not officially on the agenda for meetings, potentially focusing discussions through a commissioner lens.

Several of the PPI representatives expressed uncertainty about their role and how their contribution is used in decision making. There is a suggestion that feedback from commissioners could help representatives to understand their role and the impact of their contribution. The researchers also suggest a more collaborative approach could ensure a shared understanding of expectations and responsibilities.

A key lesson relates to the resourcing of PPI activities. This particular CCG has committed resources in the form of a PPI lead, manager and administrative support. Additionally, a Board member leads on PPI and training is provided to representatives. Support and training was recognised as important to engaging representatives and maintaining relationships.

Findings suggest that PPI representatives are often uncertain about their role and how their contribution is used.

Commentary

Commissioners are tasked with involving patients and members of the public in a meaningful way with often limited resources. There are particular challenges in engaging groups who have traditionally been hard to reach. There is some important learning here which is likely to be relevant in different contexts.

Questions for PPI staff

Some of the questions which this study raises include:

How can you ensure diverse groups from local communities are represented?
What groups are under-represented?
What different routes and mechanisms might work with different groups?
How are representatives involved in designing PPI activities?
How can you keep representatives engaged?
How are you measuring the impact of PPI?
What training and support is offered to representatives?
Are there opportunities for open discussions where issues not currently on the agenda can be raised?
How is the contribution of representatives used in decision making?
How is this integrated with other sources of knowledge, information and evidence?