Initial awareness meeting
Some PSPs hold an initial awareness or launch meeting to raise the profile of the PSP among patient and clinician groups and to foster their interest and participation. While this meeting is not compulsory, and may be dependent on the resources available to the PSP, it can present the potential priority setting exercise to a wider audience. It is an opportunity to explain the notion of research priority setting, gauge interest, answer questions and secure involvement as partners.
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 and achievements
- context - how research is traditionally commissioned
- what treatment uncertainties are
- why the JLA process is significant
- how the Steering Group became involved
- prioritising treatment uncertainties
- how priority setting works - the practical steps
- potential outcomes of a priority setting process
- feedback, including how to access the relevant communities
- what happens next
- how to join 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 uncertainties in particular areas. These will have been identified in advance, and delegates will have indicated where their interests lie, to ensure everyone can participate in a discussion which 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 which the PSP is likely to uncover. It will also ensure delegates begin to understand their practical role as partners within the JLA process.
Where constituent groups are spread out geographically, or where patients and carers may face challenges in attending a meeting, PSPs have found innovative solutions. For example, the Stroke in Scotland PSP ran a series of awareness-raising roadshows. They made their presentation available on the internet, in an accessible audio-visual format and they also provided an aphasia-friendly leaflet for those recovering from stroke. The Sight Loss and Vision PSP held an initial awareness meeting and made videos of the presentations available online for people who were unable to attend.
The Mesothelioma PSP held an initial awareness/launch meeting and videos from that meeting are available. The agenda from the meeting and a copy of the form which asked participants how they would like to be involved in the PSP can both be seen in the Key Documents section for that PSP.