• 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

Study processes

The study followed several steps in order to establish research priorities, using a mix of online surveys and priority setting workshops. The study has been conducted simultaneously in the UK and the Netherlands with steering group members and wider stakeholders involved in the dissemination of the survey and the results.

In brief:

1. An initial survey was launched which asked patients, carers and healthcare professionals to indicate their priorities for future research related to medically not yet explained symptoms.
2. The results of this survey were organised and checked to make sure that they had not already been answered by research.
3. A second (interim) survey was launched asking patients, carers and healthcare professionals to priorities a list of questions which summarised all of the responses from the initial survey.
4. The results of this interim survey were counted, and the priorities of patients and carers were ranked separately to priorities from healthcare professionals. The top 10 priorities identified by patients and carers were then combined with the top 10 priorities from healthcare professionals to create a shortlist of priorities.
5. The shortlisted priorities were discussed by patients, carers and healthcare professionals in a workshop environment to determine the final top-10 research priorities for medically not yet explained symptoms.

More information about each stage of the process can be found at the JLA website.