• Why is this important?
• Aims and scope of the project
• Study processes
• The Priority Setting Partnership - UK
• The Priority Setting Partnership - Netherlands
• Initial Survey - UK
• Interim Survey - UK
• Priority Setting Workshop - UK
• Top-10 Research Priorities for MNYES - UK
• Top-10 Research Priorities for MNYES - Netherlands
• Next steps
• Contact

Priority Setting Workshop - UK

A final priority-setting workshop was held across two sessions in September 2021. This workshop involved discussions between patients, carers and healthcare professions. In total, 25 people were involved in the discussions (10 patients, 1 carer and 14 healthcare professionals). Workshop sessions were chaired and managed by JLA facilitators to ensure that all participants felt able to contribute to discussions.

The workshop was organised in the following way:

1. Jonathan Gower (JLA facilitator and Chair of the PSP) welcomed participants to the workshop and Christina van der Feltz-Cornelis (Lead for the PSP) gave a brief presentation about the work which had been completed by the PSP which led to the workshop.
2. Workshop participants were split into four group (including a mixture of patients/carers and clinicians in each group) to discuss the top 17 priorities that had been indicated as important by interim survey participants.
3. Within small groups, each participant shared their personal top 3 and bottom 3 priorities from the top 17. This informed discussions about the different questions and a group consensus to prioritise those questions.
4. Rankings from each of the four groups were combined to provide a revised order for the top 17 priorities. This information was shared with all workshop participants.
5. Workshop participants were again split into four groups (with different people in each group but maintaining a combination of patients/carers and clinicians in each group). These small groups discussed the revised top 17 list, whether the order of priorities should be changed and how. Each group achieved a consensus about the order of the top 17 priorities.
6. Rankings from each of the four groups were again combined to provide a final order for the top 17 priorities. This process confirmed the Top 10 research priorities for Medically Not Yet Explained Symptoms.

During the workshop there were a number of individuals who observed the small group discussions. These individuals were a combination of steering group members who could provide additional background about the questions if required, members from the parallel group running this work in the Netherlands to ensure consistency in workshop management between the two PSPs, and external stakeholders with an interest in the processes being undertaken to achieve the final Top 10 priorities.