Participatory research to strengthen the role of patient and public involvement in general practice service improvement

Patient participation in healthcare organisational decision making is important internationally. Health policy rhetoric cites the moral rationale, but also claims participation will result in more patient centred services, despite little evidence. In English general practice, 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, this thesis describes participatory research to develop and field test an intervention to strengthen patient participation in general practice service improvement.

The intervention was designed and evaluated with a multi-stakeholder co-research group. We worked together to develop an adaptable prioritisation survey, based on a discrete choice experiment, and to design intervention meetings emphasising partnership working. This process was supplemented by data from focus groups and pilot testing of the prioritisation survey. Normalisation process theory was used to design and evaluate the intervention, focusing on the work of meaningful participation. The intervention was field tested in two general practice PPGs. Over the period of one year we facilitated the intervention and conducted a qualitative evaluation. Prioritisation surveys were conducted in both sites and analysed quantitatively.

The intervention combined two participatory mechanisms: partnership working, and consultation. Combining these mechanisms enhanced opportunities for credible knowledge exchange, legitimate representation, and addressed power. Field testing sites adapted and implemented the prioritisation survey, and made patient centred action plans based on the results. We identified and developed a framework of the work of creating and maintaining an inclusive, equitable, and safe participatory space for shared organisational decision making.

The intervention resulted in actions consistent with patient priorities for service change. There is a clear need to recognise and resource the work of creating and maintaining participatory space.