Co-designing an intervention to involve patients in organisational decision making in general practice

Problem

Patient and public involvement in decisions about health care design and delivery is enshrined in the English National Health Service constitution and recognised as important internationally. Every English general practice is contractually required to have a patient group and involve them in service improvement. Evidence suggests much of this involvement is enacted through feedback mechanisms to capture patient experience. However, increasingly organisations are overwhelmed with feedback which can be emotive and rarely leads to service change. An alternative approach is to base shared organisational decisions on patients’ values. This project aims to co-design a locally adaptable intervention to incorporate patient values into shared decisions about organisational change in English general practice.

Approach

Using a participatory research approach, a co-research group involving ten patients (seven core members), six general practitioners (two core members), one receptionist, and one PhD researcher was established. So far, the group has had 18 meetings (approximately 45 hours of discussion) over three years. Through an iterative process we have: conducted a systematic review; used and reflected on participatory facilitation techniques; conducted six focus groups with general practice patient groups (31 patients, eight clinical, and 11 non-clinical members of staff); and piloted a discrete choice experiment (DCE) survey (30 patient participants recruited through a local Healthwatch) including 15 think aloud interviews. Meetings, focus groups, and interviews were audio-recorded and transcribed prior to thematic analysis with co-research group involvement. Analysis is ongoing with initial results reported below.

Findings

The above approach resulted in the development of an adaptable DCE template; 24 attributes of general practice to be used in the DCE template; and a facilitated participatory process to support patient groups and clinical and non-clinical staff working together to select five attributes to use in a bespoke DCE in their general practice. Emerging results suggest the intervention highlights to patients the need for trade-offs when making decisions about service improvement in a resource limited context. The 24 attributes enable patients and staff to discuss common topics such as appointments, whilst also discussing wider issues such as equity and quality. This increases public awareness of the different features of general practice. Local adaptability of the DCE, and the facilitated decision making process of adaption, provides ownership over the content of the survey. Discussing values rather than solely experiences, encourages patients to think about others’ values, as well as their own. This, together with the survey format, and patient group training, aim to start to address the representational deficit of existing patient groups.

Consequences

Current involvement mechanisms are inflexible and based on patient experience. A co-designed intervention to incorporate patient, clinical, and non-clinical staff values into organisational decision making, appears to address deficits in current involvement mechanisms. We are now testing intervention feasibility.