Boosting public participation in healthcare

Public participation in service redesign is essential if we are to build good services with patients at their heart. Using a mind-mapping approach to managing the qualitative data from public participation can provide a pragmatic solution.

Meaningful consultation - where users feel their voices have been heard and that they can engage in an ongoing dialogue with service providers - has great benefits to patients and service providers. It can also enhance the working lives of health professionals, helping them increase service responsiveness, deliver improved health outcomes and improve job satisfaction.

However, some methods that are effective at reaching out to and engaging service users may lack scientific rigour, while other methods that may be quick and easy to use, such as questionnaires, suffer from poor response rates or may not give the kind of rich data needed to fully understand the patient perspective.

Mind mapping

Based on methods used by a research team at Manchester Metropolitan University Business School, Stockport primary care trust has been experimenting with using mind-mapping as a visual tool for engaging users during focus groups. A mind map is a diagram used to represent concepts, ideas or tasks linked to and arranged radially around a central key word or idea. Mind maps provide us with a pragmatic solution to the tensions of research rigour and meaningful involvement.

As an example of this, a local alcohol service review was planned to include consultation with service users, their carers and service providers. A number of focus groups were held and these were audio-recorded with the written consent of participants.

While the facilitator managed the focus group discussion, a researcher created a mind map on flip chart paper in the middle of the floor. In essence, the researcher is generating coded categories "live" - a process that in traditional qualitative thematic analysis would take place by sifting through pages of transcripts after the event. Participants were able to comment on the evolving mind map and were encouraged to correct any misinterpretations. They were given time at the end of the focus group to consider the mind map as a whole and could at this stage suggest amendments or additions.

Field notes

Researchers wrote detailed field notes immediately after the focus group. At this stage, the researchers listened back to the recording of the discussion, reflected on their field notes and made further additions and amendments to the mind maps. A copy of this mind map was then sent to all participants for member checking.

A single "meta-map" was created once data collection was completed, incorporating all the themes emerging from the focus groups and showing how often a given theme came up. The meta-map was used as a basis for writing up the findings from the consultation in a standard report format. The mind maps themselves were included as an appendix to the report, ensuring first that participant anonymity had been protected.

As a validity check for this approach, two of the focus groups were transcribed and analysed by a researcher who had not been present during the focus group or seen the mind maps. Broadly the same themes emerged through traditional thematic analysis as were generated by the mind-mapping approach and no key areas had been missed.

Partners in treatment

Health research should aim to treat patients and the public as partners rather than subjects, and opportunities for meaningful user involvement in the research process should be maximised. We found that mind-mapping provides a pragmatic way to conduct service user involvement focus groups within the constraints of a fast-paced PCT environment.