Initial awareness or scoping meeting
Some PSPs hold an initial awareness or launch meeting to raise the profile of the PSP among patient and clinician groups and to encourage their interest and participation. While this meeting is not essential, and may be dependent on the resources available to the PSP, it can present the potential priority setting exercise to a wider audience. It can be helpful for topic areas that do not have established networks or communication channels. It is an opportunity to explain the idea of research priority setting, gauge interest, answer questions and secure involvement as partners. Some PSPs have also used this meeting as an opportunity to gather thoughts from stakeholders on the potential scope of the PSP.
Potential attendees are usually identified through the Steering Group members' networks and contacts.
While the format of the meeting may vary depending on the nature and number of attendees, the key elements to include on the agenda are:
- information about the JLA and its aims, process and outcomes
- why a PSP on this particular topic is relevant and important
- feedback, including how to access the relevant communities
- what happens next
- how to join/help the PSP
- commitment required of partners
The format should also include time for questions and discussion.
Numbers permitting, it may also be helpful to break into small groups to discuss who the stakeholders of the PSP are and what its scope should be. These groups should be identified in advance and delegates should be asked to indicate where their interests lie, to ensure that everyone can take part in a discussion that is relevant to them. This will give people the opportunity to put their points across and serve as a rough indicator of the areas and focus of uncertainties that the PSP is likely to uncover. It will also ensure delegates begin to understand their practical role as partners within the JLA process. Some PSPs make available videos and other materials from the awareness meeting for those unable to attend.
To save costs, it may be possible to run this kind of awareness or scoping meeting at an event that potential stakeholders are already attending. For example, the International Liver Glycogen Storage Disease PSP was initiated at the International Glycogen Storage Disease Conference in The Netherlands.