Patient and Public Involvement Forum
The Forum is the name for the collective voice of people affected by these conditions, such as all the lay people on our Clinical Support Groups and the patients and carers in contact with the DeNDRoN Local Research Networks. Together, they have a combined input into DeNDRoN in addition to their existing individual roles. For example, occasionally some lay people could be invited to join a discussion group to give a lay perspective on issues from DeNDRoN Writing Groups.
This PPI Forum is coordinated by the Patient and Public Involvement Co-ordinator, who also organises at least one annual meeting for them to meet face-to-face nationally to develop links and their collective voice. Here’s the report of the 2010 Forum meeting.
The PPI Forum has a number of key functions including:
- To act as a forum for discussion, and the generation of ideas to ensure that the interests of patients, carers and the public are fully taken into account within the work of the DeNDRoN
- To provide a supportive environment in which people can become increasingly involved in all stages and all levels of the research process in respect of improving clinical research for the benefit of people affected by these conditions
- To produce, with the support of the PPI Working Goup, good practice guidelines about different methods and levels of involvement of people affected by these conditions in research
- To provide input from people affected by these conditions into the DeNDRoN Clinical Study Groups (via CSG membership)
- To provide input from people affected by these conditions into the adoption of trials onto the DeNDRoN (via Adoption Panel membership)
- To provide input from people affected by these conditions into the DeNDRoN Operational Steering Group (via OSG membership)
- To produce, with the support of the PPI Working Group, a training programme for the local networks to facilitate the active participation of people affected by these conditions in research; and develop the skills of researchers
- To provide input into ad hoc projects from people affected by these conditions
PPI Forum members will receive training and support to help them fulfill any specific roles they take on, and to become as effective as possible in using their views, perspectives and experience to improve clinical research for the benefit of patients, carers and the public. A mentoring programme will be developed to support involvement in scientific committees, with pre- and post-meeting briefings available.
The DeNDRoN Coordinating Centre will establish a PPI Forum area within the DeNDRoN portal and newsletter to inform patients, carers and the public about neurodegenerative disease research and develop methods to inform study participants about the progress of the study that that they are involved in as well as the results.