Creating and maintaining participatory space to share organisational decision making with patients in general practice

Problem

Patient and public involvement in health care design and delivery is recognised as important internationally. Health policy cites the moral rationale for involving patients, but also claims involvement will result in more patient centred services, despite little evidence of the mechanism to achieve this. In England, this policy is enacted through contractual requirements for every general practice to involve patients in service improvement through Patient Participation Groups (PPGs). However, there are problems with making this routine and meaningful for all stakeholders. To address this policy-practice gap we co-designed an intervention to strengthen patient involvement in general practice.

Approach

A participatory action research study to evaluate a co-designed intervention. Involving a co-research group comprised of ten patients (seven core members), six general practitioners (one core member), one receptionist, and a PhD researcher. The intervention consists of four facilitated meetings, using participatory methods to address power; a bespoke survey to address demographic legitimacy; PPG training focused on representational legitimacy; and a further facilitated meeting to develop a credible action plan. The intervention was evaluated by the co-research group in two general practices. The dataset includes observational notes (PhD and patient co-researcher) of six intervention meetings and one-to-three follow up meetings; meeting documents; and semi-structured interviews with eight patients and six staff members involved in the intervention. Data co-analysis used both an inductive and deductive approach drawing on normalisation process theory.

Findings

The intervention revealed the work of creating and maintaining an inclusive, equitable, and safe participatory space in which shared decision making happened. This work involved all actors continuously investing in understanding the space; committing to the space; working in partnership within the space; and appraising the space. The intervention changed the space, providing meaning, a credible and legitimate task to structure the space, and facilitation skills and participatory methods to promote tacit relationship building. However, in both practices the space partially reverted back to the pre-intervention space after the intervention. This was due to the lack of communal appraisal which failed to make the work of creating and maintaining the space visible and valuable. External interconnected spaces, the practice space and wider society, influenced actors’ agency to create and maintain the participatory space. However, the participatory space also affected the practice space, opening up possibilities for future patient influence.

Consequences

Inclusive, equitable, and safe participatory space is a prerequisite for authentic patient involvement in organisational decision making. Creating and maintaining this space is a skilled practice requiring ongoing work by all those involved. The skills and resources to support this work are not routinely found in general practice organisations. This needs urgent attention to increase transparency and avoid eroding public trust in general practice.