Co-designing a Mesothelioma decision aid

Malignant pleural effusion (MPE) is a common, serious problem predominantly seen in metastatic lung and breast cancer and malignant pleural mesothelioma. Recurrence of malignant pleural effusion is common, and symptoms significantly impact on people’s daily lives. Numerous treatment options exist yet choosing the most suitable depends on many factors and making decisions can be challenging in pressured, time sensitive clinical environments. Clinicians identified a need to develop a decision support tool. This project aimed to co-produce an initial prototype of that decision tool.

Creative co-production methods were used. Three pleural teams from three disparate clinical sites in the UK were involved. To overcome the geographical distance between sites and the ill-health of service users, novel distributed methods of creative co-production were used. Local workshops were designed and structured, including video clips of activities. These were run on each site with clinicians, patients and carers. A joint national workshop was then conducted with representatives from all stakeholder groups to consider findings and outputs from local meetings.

The TK2A theme worked with participants to develop outputs including patient timelines and personas. These were used as the basis to develop and test visible and tangible prototype ideas.

Key messages from the workshops informed prototype development. Understanding and managing the pleural effusion was the priority for patients, not their overall cancer journey. Preferred methods for receiving information were varied but visual and graphic approaches were favoured. The main influences on people’s decisions about their MPE treatment were personal aspects of their lives (e.g. how active they are, what support they have at home).

The findings informed the development of a first service visualisation to help people identify personal priorities and guide shared treatment decisions. The creative design methods and distributed model of co-production used in this project overcame many of the barriers to traditional co-production methods such as power, language and time. They allowed specialist pleural teams and service users to work together to create a patient-facing decision support tool owned by those who will use it and ready for implementation and evaluation.