Our Vision of Public Involvement in Research

Researchers in the Centre for Public Health at Queen’s University Belfast have established the Northern Ireland Lewy Body Dementia (LBD) Research Advisory Group (RAG) to support local public involvement in research related to LBD.

We believe that to ensure that research is appropriate, meaningful and relevant, individuals affected by LBD should play an important role in the processes by which research is identified, designed, conducted and disseminated.

We hope to consult with individuals affected by dementia with Lewy bodies or Parkinson's disease dementia to seek their advice on local research related to LBD. We wish to foster a culture of inclusion and respect in all of our activities, and we welcome anyone affected by LBD to contribute to the group.

 

Work of the Northern Ireland Lewy Body Dementia Research Advisory Group

The core role of a LBD RAG member is to contribute to the development of LBD research from the point of view of someone with direct or indirect experience of LBD. Group members are able to contribute to the development of research as follows:

• Discuss and comment on items during meetings and raise issues for consideration.
• Provide their perspective on research issues.
• Review and provide feedback on research material that research participants will receive.
• Review and provide feedback on potential studies and research outputs.
• Review research grant proposals and funding applications.
• Review clinical trial protocols or study information for participants.

Involvement in the group does not mean that members are obligated to be a research subject in any study e.g., a participant in a clinical trial, a respondent in a survey or an interview participant.

First Personal and Public Involvement Event

The Centre for Public Health hosted the first meeting of the LBD RAG on the 4^th of September 2023, with 10 members of the public present.

At the event, Dr Joseph Jane, the lead of the LBD RAG and Clinical Lecturer in Psychiatry of Old Age at the Centre for Public Health, provided a brief overview of LBD research and emphasised the value of public involvement in LBD research.

Group members were engaged in providing valuable feedback on research materials related to a study in development. Feedback from the group was pivotal in improving the acceptability and accessibility of the study materials.

Contact Us

If you wish to find out more information about the LBD RAG, please feel free to contact:

Miss Sinead Donnelly, PhD Candidate at the Centre for Public Health - pdonnelly546@qub.ac.uk